FDA Seeking Public Comments on Fibromyalgia

FDA Seeking Public Comments on Fibromyalgia

What medications do you take to treat fibromyalgia? Do they work? How does fibromyalgia affect your daily life? Do your symptoms come and go?

6777243986_763e69f665_bThose are the type of questions the Food and Drug Administration is seeking answers to at a public hearing in December on fibromyalgia.

The hearing is intended to allow the FDA to obtain patients’ perspectives on the impact of fibromyalgia on their lives, as well as the effectiveness of therapies in treating it.

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, headaches, depression and lack of sleep. Many patients go for years before being diagnosed and medications to treat fibromyalgia are often found to be ineffective.

How much time has the FDA set aside to discuss this complex disorder? Four hours.

The agency does have its hands full – and not just because of the government shutdown. Fibromyalgia is one of 20 diseases the FDA is seeking input on under Patient-Focused Drug Development, an initiative that is part of the fifth authorization of the Prescription Drug User Fee Act.

Although the public meeting was announced in late September, so far it has generated little attention, and many fibromyalgia patients and advocates are only now learning about it.

The meeting will be held on December 10, 2013, from 1 pm to 5 pm at the FDA’s White Oak Campus in Silver Spring, Maryland. Further information about the location and early registration can be found here.

If you are unable to attend the meeting in person, you can sign up online to view a webcast.

You can also submit your comments about fibromyalgia right now at this website. As of this writing, only two people had submitted comments.

“I hope many will weigh in with their own thoughts,” says Celeste Cooper, a retired nurse and fibromyalgia expert and advocate.  “We need numbers, a show of hands, and commitment to research that not only affects us, but generations to come. Our talent is our voice.”

Cooper is hopeful that the public hearing will lead to new research and treatments for fibromyalgia.

“There is significant evidence that fibromyalgia is a biological illness which affects multiple body systems. Medications currently available are only partially helpful for a small percentage of patients; it is time for unbiased pharmaceutical research. We need effective medications with fewer side effects. We need research on NEW medications, not re-branding strategies of old pharmaceuticals to boost sales and increase the cost to the patient,” Cooper wrote in an email to National Pain Report.

Authored by: Pat Anson, Editor

There are 87 comments for this article
  1. Michele Young at 6:55 pm

    Fibromyalgia must be heard because it can not be seen. Our tears are hidden like the silent cries of domestic abuse. What do we show our children, lies about our illness because we are not believed. What does that teach them? That they cant be believed? Not to trust in doctors? I want my children to know that their life is important. Being a single parent with a dead beat dad, I work in agony behind our smiles. Medications are almost impossible because doctors think your crazy. They send you to a psychiatrist and take two aspirin. How do explain what we feel when we are in invisible pain? Most important, how do we explain the suicides of our silent hell? How??

  2. Debra Williams at 3:50 pm

    I was diagnosed in 2006. I went from Director of Operations of the company I worked for to disabled in less than a year. I can’t focus, I have memory problems, I can’t concentrate: all due to excruciating pain all over my body. On a good day, when my pain levels are 4-5, I can write a comment like this.

  3. Andrea Frost at 3:45 am

    we need to b heard we need the dr’s to agree with what we say about ourselves and they need more education on thisi have pain all day every day but you all doubt that but I no how I feel my life has been over for five years now I do nothing I make no plans no only do I suffer but my family and friends suffer as well. please help us find a cure for this and all invisible diseases. we have rights too but never are we heard. I take a matter of 27 pills a day and im still in pain we ask u put money into our disease as u do others.Here’s a list on my diseases, Chronic pain, Diabetes, Migraines, Tachycardia,Anxiety, Cervical Spondylosis w/ Myelopathy, DDD, Depression, Gerd, Fibromyalgia, Herniated Cervical Disc, Hyperlipemia, Hypertension, Insomnia, Lumbar Radiculopathy, Non Alcoholic Liver Disease, Osteoporosis, Polydipsia, Spinal Stenosis, 2 TIA’s,Vitamin D Deficiency. that’s just a few and most I have gotten from taking certain medicines for these, I’d say a lot of side effects won’t you.so please consider us for a change would you

  4. Joanne Volenecz at 6:47 am

    Feb. 13, 2014
    I was diagnosed with fibro 2 years ago but I believe I had it since some steel bars at my job tried to crush me. Since then I have suffered everyday. There is no breaks in this disease, I don’t sleep because of the pain, I am no longer able to do any activities I use to do such as baseball, long walks, camping, basketball, and most of all working. I loved my job but the pain became so much that I could not actually function anymore. I could not think straight. I suffered from severe migraines which I have never had before and I take oxy neo daily just to get out of bed. I have damage to my spine from the steel bars too so I suffer double. I am no longer able to do anything I use to enjoy and instead just exist. I want my life back too. I want to be able to go out and enjoy life, find love, go travelling but instead all I am able to do is get up from a restless sleep and drag my body around my apt. This is no way for anyone to live. Help us Thanks in advance

  5. Lorri Speiran at 5:57 am

    I will also add that yes our symptoms mirror those of MS only we won’t die from fibro. We live the nightmare daily. I have walked out of a mall and did not know who I was, where I was, did I drive, do I have a car? I also had a seizure (stress induced back in 2004) because I had no income and a mortgage and finally had to sell my home. 🙁 I have nothing left to give, nothing left in me to share, nothing left of the dreams I had for myself and my family. I went through two deaths in less than 9 months, my sister and then my dad, and my body crashed again to where I went down to 90 lbs. I was 169 when I was on meds……This illness has bashed my body and been unforgiving at a time when my children needed their mom to help them deal with the deaths. I couldn’t be there for my children when I could not even stand being hugged…..what kind of life is this when a hug hurts? I have been on so many different meds now I have lost track. When I ask for Tylenol 3 even and turned down by my doctor or told to exercise more I look at her and say….. I babysit my grandkids and I look after my mom’s home (as best I can) so I think I get plenty of exercise along with a dog I walk. I used to curl, ski, played ladies fast ball. I was a track star in highschool, so to tell me, someone who loved riding bikes and camping and hiking, to exercise is like telling a blind person to read the chalkboard. Why am I being scrutinized when I want nothing more than at 53 nearly, to get back to a normal life of dancing, laughing, going on trips and playing with my grandkids at the park….instead I watch life pass me by. I may as well dig my own damn hole and crawl in it now. If the doctors treat us like we are the plague, then how are we to be expected to go on? I want my life back, and I want to find love and I want to share my life, but who the hell would want someone like me now. I may look ok on the outside, but once someone knows the real fibro rampaged body that is screamin inside….then I get tossed out once more. Life is not good when you have fibro and I have tried massage, chiro, I walk with my dog at the park and I tried acupuncture, and all kinds of meds to no avail. I need you to please find us all help. We deserve a full life, not this one we have now.
    Thank you in advance and if there are any trials to be done I am volunteering because I want a cure or something that will help with the pain so I can enjoy however many years I have left. Sad in Canada.

  6. Lorri Speiran at 5:36 am

    I have had fibro I think since I was a little kid, only a car accident in 1993 brought it out to the point I was useless to my children as far as being a real Mom doing all the things with them and for them. It crushed me but, both my doctor and myself figured this was all caused by my MVA. Well in 2003 I was diagnosed with fibro and Raynauds and I crashed at work and lost my job….I had what I thought was a heart attack (at 42) on the lines at the Radio Shack Warehouse. They wheeled me out. I couldn’t breathe and my bf took me to emerg where I lay on a gourney for 6 hours and they sent me home doing nothing for me. I am always scared to tell a doctor I have fibro. Why should we who are sick be scared to say this dreaded word? Why are we being allowed to suffer in pain and silence? Why is it that we treat our pets better than we as humans suffering are being treated? My doctor will not prescribe anything more than Lyrica 75mg 4 times a day and Tramadol which I don’t even bother with half the time because it does nothing to touch the pain I am having. I have lost time with my family, had to leave or back out of engagements with them or friends. My marriage suffered to the point of divorce….my life has not been the same since ’93 and I am ready to write a book on the inhumane treatment we are given. On the way doctors look at us like we have 2 heads when we say we have fibro. Why is it that we have to be Whoville and scream at the top of our lungs to be heard? It is like having a worst nightmare come true and one I would not wish on my worst enemy. I am tired…..I have had too many years in pain, I know too many of my friends who are suicidal bc of this dreaded illness. I also have Crohns, Raynauds, Osteo Arthritis, Stenosis of the spine and allergies, all of which started back in the 80’s , but I never gave much thought to it being something bigger when all combined…..with a common thread of fibro. I think some of the doctors would do well to come into some of the fibro groups on facebook and read what we are all saying to sum it up and get a better look at this illness and its symptoms which is well over 100 …..and never the same thing any given day. Let me ask you this….if it were one of your family members losing their lives, their livelihood, their self esteem, their way in life, would you ignore their pleas for help? I doubt it so please do not ignore us anymore. We have become the guinea pigs for the next generation and I am ok with that if it means both my adult daughters don’t have to live like I do now. From twitching, to buzzing, to horrific pain in my neck, back, limbs. To losing use of fingers,to having headaches daily, to not be able to participate in life as I once did….suicide is an escape when no one is listening and no one is helping us. We all have the same problems just at different times and places but, how can this many worldwide be lying? How can we work when we are so fatigued we can barely hold our heads up? Then we have someone who worked my entire life to now be living in my mom’s basement with no income to survive…..how can one survive this all?You need to find a cure for us or please do it for my children and grandchildren who may also inherit this hateful illness as I believe my dad had it too. Look harder please. Try harder please. We need help….we need doctors to believe us and not treat us like malingerers and fakes. This is as real as any other illness b4 that had to be researched and a cure found, so please won’t you help Whoville be heard. Thank you, from a very sad Canadian girl living in the cold that does us more harm.

  7. Adrianne at 2:55 am

    I was diagnosed with FM 5 years ago after an emotionally traumatic event (the death of my son). The symptoms came on about 9-12 months later. Over the next 4 years my doctors prescribed Lyrica, Cymbalta and Sevalla. None helped with the Fibromyalgia pain. My pain management doctor then prescribed Morphine Sulfate, which I was allergic to and then Methadone. I have chronic lower back pain and the Methadone seems to help a bit with that. I also use Oxycodone PRN on very rare occasions which doesn’t help with the FM pain, but does help the chronic back pain.
    My symptoms seem to worsen with changes in the barometric pressure, increased stress, periods of difficulty sleeping and over activity. When the FM symptoms are at their worst I need to use a walker due to weakness and poor balance. And, frequently have a loss of bladder control during those times as well.
    I have been unable to work for the past 5 years due to the chronic pain, fatigue, cognitive changes and never knowing from one day to the next how I will feel. It’s very disheartening since I loved my career as a registered nurse.
    I hope this information helps and thank you so much for all you are doing.

  8. Liinda Wilsom at 4:15 pm

    I have had fibromyalgia all of my life. I am 67. I was not diagnosed until 1990. I went through all kinds of tests that turned up negative so it was “decided that I was crazy” and the “pain was all in my head”. This caused me to have a nervous breakdown and needed therapy for 10 years. When I got diagnosed, funny thing, I was not depressed any longer. I take Roxyconton, Oxyconton, Soma, and Elivil. My body is in pain 24/7/365. I never not hurt. The above meds take the edge off but they don’t relieve the pain totally. When I do anything like take a vacation for 4 days, like I did last weekend….it takes me 2 weeks or more to get my energy back so that I don’t have to stay in bed all day. I also have other chronic pain issues like Chronic Myofascial Pain, Arthritis, and Migraines. I rarely leave my house except for church, doctor appointments and monthly to the beauty shop.

  9. DeAnna Crabtree at 1:56 pm

    I knew I would forget….you also stagger around like you are intoxicated…intimacy means nothing when you are hurting soooo badly….to touch my shins even to shave…to touch any part of my body…my joints feel like I have hotpokers in them….the changes in the weather make me hurt sooo badly, I was told by one doctor, that I was a barometer…and I am…I am sorry to add on to the other letter I sent…guess it shows I am a tad, fibro-y…..

  10. DeAnna Crabtree at 1:48 pm

    I have had fibro for almost 20 years. I was in my late 30s and now I will soon be 59. Though there are some medications that are suppose to help, there really isnt any help. I have pain, 24/7…I cannot get away from this pain…pain I never knew a person could feel. I have this burning deep in my joints that feel like hot pokers, and every muscle in my body hurts sooo badly, I often wonder how I will live until I am old. I have what they call fibro “fog”. It is unlike anything I have ever dealt with…your head is foggy, and I get so foggy I can barely see, and it is almost impossible to carry on a conversation with anyone. I get so dizzy, even turning my head, makes me so dizzy, I could actually fall. Then there are the times that you itch….and I mean itch alllll over, like you have things crawling alllll over you, under your skin, itching that can drive one mad..then you have the, I cant even stand water touching me in the shower, warm water is too hot, cool water tooo cold, cant stand fabric touching me, wash clothes hurt, towels hurt..then you have the sensitivity to sound, light, anything drives you crazy…you dont want to be around anyone…no noise, no light…then you have the headaches, there are headaches, then you have the migraines…I had a migraine that lasted 18 months…and I know you will think, no way….but I did. And that drove me close to taking my own life. Soooo close. Then you find yourself allergic to everything!!!! Soap, make up, lotions, any and everything… Then we have the restless leg and arm syndrome…this drives me mad…wakes you up….your legs and arms moving, moving…sleeping…is a …chore….either I cannot sleep, or I sleep all the time….Its really strange, I have sleep aids, but, when I get into this sleeping all the time mode, I wont take any sleep aid, and I will sleep 20 to 22 hours a day…waking when my pain wakes me up…I even dream of pain, and when I wake up, it will be because I am hurting sooo badly, and in need of pain meds…I also have a hard time keeping my mind on topics that are being addressed. It is very difficult for me to stay focused, and that makes it very hard to carry on a conversation. I also have problems with my appetite. I dont want to eat. I have lost all of my friends. They got tired of making plans with me, and me cancelling at the last minute. I HATE THIS!!!!! I was always super mom, super wife…I did my husbands bookkeeping for his company, I did the state audits every 3 months, and now I cant even balance my checkbook. I am still married, 43 years, and I am quite surprised we are, he has NOT handled this well..he has accused me of exagerating (sp) and has ignored me and my symptoms. He and I used to go camping and fishing, and going to Lake Tahoe, spending weekends gambling, going to shows…and the last time we went, I stayed in our room and he did what he wanted to do, and I was alone the whole weekend. I was always the one that when I told you something, you could count on it…I was early and I was dependable, and I am not anymore. I am ashamed, and embarassed, and angry and depressed. I wanted to spend my older years going places, and spending time with friends..I am tired of this, and I am tired of being trapped with this disease that no one really knows what it is…and I wonder sometimes if anyone really cares…I know I am missing alot of information and lists of symptoms that I have…and Im sure I will remember slowly after this…asss usual…I do hope someone can do something. This is a horrible, controlling disease. It robs you of time with your family and friends. It makes you look like youre crazy…makes you doubt yourself. It makes others doubt you. It stinks. One thing I did want to say, I have an Auntie that has MS…and there are sooo many symptoms we share…and I am wondering if anyone else has shared this…Please feel free to contact me if you want any other info….Ohhh by the way, I called to do a study in Sacramento, this was about 8 years ago, and was told since I was on pain meds, I wasnt what they were looking for. One other thing I forgot to add. I was in a near fatal auto accident 23 years ago. So, I had alot of residual problems there and then as I was trying to recoup from that, that is when it was discovered I had fibro. Anyway, I hope this helps in some way….God bless and hope you can find out something…Gentle hugs to all my fibro friends…

  11. Nancy Urban at 12:52 pm

    I was diagnosed with fibro about 15 years ago. I am in constant pain. I cannot work anymore. I mean what job is going to let me call in on the mornings that I can barely get out of bed. Which is often. We struggle financially because of this. I am blessed to have a husband that tries his best. But this disease messes with every aspect of my life. I cannot take many meds as I am like many that have a sensitivity to meds. So the only thing I can take for pain is tylenol and let me tell you that does not even hardly touch the amount of pain I am in daily. As for the question do the symptoms come and go. Only in severity. Daily I am in pain. Some days I barely get out of bed. Other days I am able to get minimal amount of cleaning done around my house. And them days I have to do the cleaning in shifts.

  12. Renee Bertot at 11:49 pm

    I am a 40 yr. Old mother of two. I have had FM almost my whole life. Diagnosed in 2007, I thought I was on my way to the answers and help that I needed. Well, No. I am a member of Kaiser in CA and It’s been an uphill battle with them. One Dr. gives you one diagnoses and some pain meds. and nothing much more. The pain meds. Don’t really help, I walked myself up the list of recommended pain medications. If one didn’t work, then I would ask for the next strongest. I now take soma, which only cut some of the muscle spasms with my morphine, both immediate and extended release. These doctors are ,clueless and send you off to phsyc. Please help us. We don’t deserve all this pain.

  13. Pam Sweeton at 7:48 pm

    In 2008, I was diagnosed with fibromyalgia by an internist. For at least 12-15 years prior to diagnosis, I had FM symptoms & reported them to my PCP. My PCP treated me for osteoarthritis, depression, anxiety, muscle spasms, insomnia, chronic pain and so on. My PCP did not support a diagnosis of fibromyalgia as he did not believe the condition exists.
    Fibromyalgia has stolen my life and my joy. I was once a productive hard-working woman & enjoyed my full time job, managing my household, hobbies, family activities, gardening, cooking & so on. At age 57, I can no longer work due to chronic pain, fatigue, inability to concentrate, poor sleep, severe depression & anxiety, and the lack of energy that plagues FM sufferers.
    Most of my days are spent trying to manage my pain, stiffness, swollen feet & legs, constant headaches, memory issues, fatigue, irritability and IBS. On average, I may have one or two good days per week but that can be impacted by any activity (such as shopping, housework or leaving the house), weather change, or any additional stressors than normal. On a bad day, I can barely get out of bed, brush my teeth & dress. On a very bad day, I cannot get out of bed at all. Sleep is a huge issue—I am constantly fatigued & rarely get restful deep sleep like I once did. Even if I manage to sleep 5-6 hours, I’m still exhausted and must rest throughout the day.
    Pain is my constant companion. There is never a time that the pain is completely gone. My muscles & joints ache deeply, throb, burn, spasm, cramp,tingle & sting all day, every day. The pain is often migratory & moves from one area of my body to another, but some part of me hurts ALL the time. Overexertion amplifies the pain by 1000X. At times, even brushing my hair or holding a pen in my hand is painful. I cannot sit, stand, walk or lie down for more than a short time without needing to change position to ease the pain. Driving is very difficult. Riding in a vehicle for more than 30 min causes extreme discomfort. Physical touch can be very painful, even a hug can hurt badly enough to bring tears to my eyes. I’m overly sensitive to light, noise and fragrance, which can bring on sudden nausea & weakness. I cannot focus or concentrate. I forget what I went after before I can even get to the other room. I’m constantly writing things down so I don’t forget. I even had to get my friend to type this for me because I can’t sit long enough to do it myself or remember what I wanted to say.
    When I was first diagnosed, I was prescribed Lyrica. The med worked wonderfully for about 6 weeks then became ineffective. Currently I take ibuprophen to dull the headaches but it does not help at all with body pain. I have no other options as far as meds go. I get some relief from using a heating pad but not always. I have not taken any other prescription meds fro fibro as I have no insurance, I cannot work, I have no money or access to medical care. I don’t qualify for Medicaid and there is no free clinic in my city. My Social Security Disability claim was denied by an administrative law judge & also by an appeals board. My attorney said we had exhausted all avenues since I last worked in 2010 and all my work credits have expired. If not for a friend who lets me sleep on her couch, I would be homeless.
    Fibromyalgia has affected every aspect of my life. I have been called lazy, crazy, entitled, a fraud, a fake and several other names I probably shouldn’t repeat here. It has ruined relationships, snatched away my livelihood & left me broken. No one should have to live in such pain and misery. Fibro sufferers deserve real answers, real treatment & a supportive, well informed medical community. Please help by getting the ball rolling on research to find new medications that work and a cure.

  14. Amanda Matos at 3:45 pm

    Fibro has changed my life. I’m 37 and many days, I feel like I’m 97. I pray that there is recognition for the MILLIONS of silent sufferers of this disease. I look “fine,” “normal,” and even “good” (on some days), but my life (as I knew it) has been stolen away from me. I’m not lazy – far from it. I’m a college graduate with two post-graduate degrees and two education credentials. Yet, many days, I can no longer get out of bed. This disease is growing at a frightening rate, but because so many of is suffer quietly and look well, we are ignored. We need and deserve research and recognition!

  15. Marty Collacchi at 1:03 am

    What can I say except FM has ruined my life or what life I have left as I am 61 now. I think I have had FM longer than my diagnosis as 15 years ago one doctor said it was Lupus. I live each and every day in unbearable pain. I cannot take antidepressants as they make me crazy and make me 20 times more depressed. I take Lyrica, Celebrex and Vicodin daily along with a variety of different muscle relaxers depending on what I am trying this month or what the insurance will pay for. I did recently have a back injection that helped and took my pain level to maybe an 8. I live on little sleep, can’t stand to be touched and swear like a trooper with every step I take. I am now unable to walk alone without a walker and even with that I am limited to maybe 20 minutes. If I have a “good” day and can go to store it will take me 2 to 3 days to recover from that. I can’t enjoy any activities with family anymore and feel like I have ruined my sons life because he has given up all friends to care for me. I used to be able to cook big Italian meals for the family and now the slow cooker has become my best friend on a good day. On a bad day, frozen dinners. I shower every other day now because I can’t stand the water hitting me. I am losing hope for any kind of solution for the devastating illness and unless you suffer with it you have no clue how helpless we feel and we just want our lives back and to be as pain free as we possibly can.
    Bless You all

  16. Melissa at 8:50 pm

    I was first diagnosed in 2010. According to my Rhuem. Dr. I have had this disease for several years before being diagnosed. I have complained at all of my regular doctor appointments about chronic back pain symptoms of throbbing, burning, stinging and numbness. It made working very difficult. Then came the pain all over everyday. I struggle with depression, confusion, forgetfulness, diabetes, mood swings, headaches etc. . I’m on Lyrica 300mg, Flexeril 3xdaily, 2 anti-depressants, metformin, nexium, chlorestral med. The weather such as being to hot or cold. Fibro makes daily life a struggle. I have 1 or 2 good days a week. On the good days I always overdue things then I’m down for the rest of the week. I have been trying to get disability for over 3 yrs. I asked my lawyer about putting down about my Fibro and he told me because it can not be proven through blood work and it is not noticeable there was no since in using it as one of my disabilities. To have a Judge say you are not disabled and I have to live like this everyday in pain and to try to function in everyday life is very depressing. It controls you and brings you down. I have no desire to function and this in turn effects my family! Please take in everything that we all write and understand that Fibro is a real existing disease!!

  17. Becki Hess at 7:07 pm

    I have suffered from fibro for many years, but was finally diagnosed at Mayo clinic in 2008. I also have osteoarthritis, rheumatoid arthritis and Chrone’s disease. I have been on/ tried so many medications over the years to no avail. Cymbalta, Lyrica and Effexor are the latest! and are not working for the pain! fibro fog! I use SEVERAL ibuprofen during the day to get through and Vicodin at home and on weekends. melatonin and Xanax to sleep, bit only for a couple hours at a time! I have constant confusion! constant pain and burning. I work full time (I have no choice), and it is more of a struggle each and every day to get out of bed, take a hot bath to loosen up my joints and muscles, go to work and try to function as a secretary in a very busy office. I plead to you, as a voice for ALL of us that suffer from fibro, that more time, money and effort be put into the research and hopefully a cure! Thank you!!

  18. Danielle at 7:00 pm

    I have dealt with this since I was a child. It’s exhausting at one point I was completely bedridden for a month when I was 9. I have a full time job to support my kids and family and rely on hydrocodone to survive. I can’t take anything stronger because I have to stay alert, anything less doesnt help, cymbalta and anti-depressants make me nauseous and dizzy. I didn’t choose this, it chose me. I hate being treated like I’m some criminal for being in pain, no one should ever feel like they have to suffer but I think most Fibro and auto immune sufferers would agree that we are being treated like criminals. Isn’t having a debilitating disease enough!!??

  19. Lana Russell at 2:59 am

    I have been diagosed with fibro several yrs ago and I fought for my disability for 6 yrs . When my court date finally came my lawyer named off 5 different arthritis that I did have and the fibro along with chronic pain through put my intire body and bad back . I moved back home and and I have been back now for 6 urs and have been told I have 4 other kinds of arthritis to go along with the fibro and back pain sciatica nerve damage and nerve damage in my neck and back. Now I’m facing arthritis of the bone in my intire body worse in my left shoulder it takes everything I have to just get up and walk I had to get diabetic shoes because I just got diagnosed with neuropathy from by lower back to my feet . I wake up in suck bad pain I can’t function through out the days and I keep bad migraines all the time . Most days I cry because of the severe pain that I’m in my life is so disfinctional and I stay in a depressed mood and fatigued all the time no matter what meds I’m on I never get any relieve from the pain and now I am having stressed induced siezers on top of everything else. I have lost interest in everything I enjoyed in life due to the pain of not getting around and doing without any pain at all . I am swollen most days and can’t use my hands to even hold a glass to drink tea and I gag ony food to wear I can’t even eat because the pain is so bad . I can’t enjoy keeping my grand kids because I’m not able to do anything with them like I used to and as the years go by I am steadily getting worse I can’t sleep for the pain I am running on no energy and loosing weight because of not being able to eat most the time I am a diabetic now and I am on 12 different kinds of medications on top of going to get arthritis shots every month that doesn’t even seem to help at all . We the people that have all the symptoms and more need all the help we can get in drs medications testing to find what is right for us and why do they think all people are the same when it comes to medications all people are different what works for one doesn’t work for others a d it high time that the medical board realizes this I also have copd and asthma chronic bronchitis I have to take 4 breathing treatments a day and have an inhaler I use when nessesary thanks for listening and God bless

  20. Jeanne at 6:00 pm

    I have such compassion for all of you with this horrible Fibromyalgia. I have tried Ultram, Ambien, and Xanax. I’ve had fibro for over 30 years. It is not suppose to be a progressive disease, however, during my stint with the fibro, It has progressed. I could work, cook, care for family, garden, volunteer, drive, etc., when first diagnosed. Now I can do none of those things. I have found that simple advil does help with pain, Xanax and herbal sleepy time tea, help me sleep. And I do not feel drugged! I also use some natural supplements with glucosamine, condrotine, and the spice turmeric! Tumeric helps with the pain!!! The amaitriptiline, soma, and Effexor, did no good. As you all know fibromyalgia causes sensitivity to medications, so look around at some natural remedies. Also Physical therapy, and Pool Therapy have helped a lot.

  21. Franchesca Callaway at 10:17 am

    I am going on a few years with Fibro along with other conditions. As of today I was diagnosed with severe Fibro and Chronic Pain Syndrome. I will love to answer your questions:
    What medications do you take to treat fibromyalgia?- I have been on it all and I have tried them all, so far I am on: Gabapentin1200mg, Percocet 10mg, Metroprol (my BP is extremely high due to my extreme pain and lack of sleep), Amitriptyline 100mg, Sulidnac 50mg, and Soma 350mg and right now, I cannot feel as if I had taken any meds. If I do not set my alarm for my meds each time I take them, I would be in trouble because I also have Fibro fog and CANNOT remember the basic stuff. Do they work? – NO and I have also been on: Lycria, Sevella, Busprione, Cymbalta, and Morphine and none of these even touched my pain at all. The Gaba is my 2nd round and still a fail.
    How does fibromyalgia affect your daily life? WOW I used to be a MMA fighter, a boxer, a very fit person and also a very very active person who used to work 2 full time jobs to make sure my family had the best. When the onset pains started to come, I thought it truly was just old age (and I was in my early 30s) and brushed it off. I would never forget my bday 2012 when I literally woke up and my body finally said “this is it, cannot hold back no more” and boy the onset came on full strong. Ever since that day, I had to quit both of my managing jobs, and try to live my life. I cannot: cook, clean, walk, bend, jump, run, lift weights, go to the bathroom without assistance of a bar, bend over to put my clothes on, brush my own hair, I literally cannot do anything. Like typing this out, I have someone else typing because I can’t even do that. My life has changed. Driving is a no-no and even riding in a car for more than an hr is unbearable. I cannot remember the last time I slept for more then 2 hrs a night. I am always tired always in pain and I hate it. I hate my life and I hate the fact that my kids are trying to adjust to the new mommy. The “inactive, I am always in pain” mommy.
    Do your symptoms come and go? No, because of the Severe Fibro, my pain is consent. I want just 1 day of no pain. No one understands this. Not even SSI (which I got denied). I cannot get a job, and trust me, I have tried. I want this to go away. I cannot live in this hell of a very painful dreary life but I do because of my husband and my kids. I do not wish this on my worse enemy.

  22. shelley ramsey at 6:41 pm

    I have had fibromyalgia for many years along with cfs but have just recently been diagnosed. I also suffer from arthritis in my knees and lower back and degenerative disc disease, i have neuropathy in both feet an off and on in both arms (not from diabetes ) my pain medication does very little to ease my pain and the muscle relaxers that do help with muscle spasms that plague me , i can not afford. I am on amitriptyline , tramadol and baclofen for the fibromyalgia and naproxen, hydrocodone ,and robaxin dor the rest. My days and most of my nights are spent in a rexliner with a heating pad. This has caused signifigant weight gain ,but when it hurts too much to move i guess that is the result. I have no quality of life anymore and pray for the day my meds help me actually get releif . I live in a state that has not expanded Medicaid so I have no insurance therefore i have to accept what i get . I am hoping to get a new medication other than the amitriptyline next week when i see my doctor and praying for all my fellow fibro brothers and sisters to have manageable pain levels daily.

  23. Mary l Wilson at 3:09 pm

    I will try my best to tell you some of my issues because telling them all would be like writing a book. I have had fibromyalgia for several years now but was just diagnose 2 years ago. I take cymbalta twice a day but doesn’t seem to help the only thing that helps me tolerate it is my pain meds which does not take all the pain away but it helps me deal with it. I also have neropathy in my legs in feet..RLS which I take pramipexole for that and it still can drive me nuts..celbrex for arthritis ..and on and on..I also have stenos of back. I have numbness and tingling in my feet and legs plus at times muscle cramps..but this fibro is unreal..never free of pain just some days are a little better then others.
    Don’t think my family and friends understand how painful this is.
    If I go to the store for groceries then the next day I am down and out..and the fatigue is unreal. At times I think I could sleep all day and then there are other days can’t sleep hardly at all and if I do the pain wakes me up.
    If you have never had this I pray you never do it is one of the worst things to deal with
    It is so hard to try and hide your feelings from family and friends but I don’t want them to think that all I do is complain and lose them. You know after a while you get sick of hearing peoples health problems.
    The brain fog is scary too..but the worst thing besides the pain I can hardly do anything that I use to do..horseback riding..swimming..playing with my grandkkids..shopping with my daughter or son .. my house isn’t as clean as it use to be so many things. The sensitivity of your body is unreal..to be hugged can just about send you over the edge.
    I pray one day they find a cure for this too because I have went through the injections..had nerves burnt..have wires in my back with a controller to shock me..sick of it all..if you don’t think this is real you are just fooling yourself
    Please find us something to help this horrible disease

  24. Mitzi Arredondo at 2:29 pm

    I suffer from fibro and horrible fatigue every single day. I was diagnosed 3years ago, but suffering for about 5 years. I will make this short and to the point. I have good days which really rant that great and I have bad days, which are so bad I have to stay in bed. I’m in Pain everyday, I can’t sleep at night. My joints hurt, ,my muscle have become very weak. I can’t ex cerise, due to pain and exhaustion. Family trip, we’ll forget it. Those don’t happen any longer. I have numberous tummy issues. Brain fog gets worse as time goes on. Nothing seems to help. Depression and anxiety. Is undisrcble. My family and friend. We’ll some understand others think your lazy or crazy… My life, what life. I can’t work, much less do household chores . Things I once enjoyed are distant memories. I’m only 41. I feel 90. Daily I feel like I was hit by a train. Hoping for a cure and a better understanding. And most of doctors that really care and take fibro serious. Because they don’t.

  25. Kelly Huber at 11:46 am

    I just turned 36yrs I was diagnosed 21yrs I am a wife n mother of 3 teenagers. I have to choose between working so my kids have things or cook, clean, activity with kids and being a good wife I try so hard to work but I fake it mostly. I so want to be the person I should have been but can’t. I love to cook for my family n it took a month before I could cook spaghetti then I was useless for the rest of the night. I hate that! I have to fight every month for pain meds that are the ONLY way I can work at all. I shouldn’t b treated as a druggie when I only take what helps me to b partially normal. It’s not fair that I have the stress of doctors on top of my EVERY DAY battle. I just want to live. I can’t b social I lost all friends. All I have is my husband n kids I want to give them a better wife n mother. I have taken all the recommended meds with bad results. The only thing that helps a lil is pain meds. U try telling a doc that! Please keep the fight going for help for us. We NEED it. I can’t see all the questions so I just wrote I could turn it into a book but I won’t. Please recognize Fibro it is real n life changing

  26. K Fuller at 7:35 am

    What medications do you take to treat fibromyalgia: Gabapentin works very well for me. I developed serotonin poisoning last year & had to stop taking Savella & other meds that raised my serotonin.

    How does fibromyalgia affect your daily life: I no longer entertain. My social life consists of going to the YMCA 4x a week. I am retired & I wish I had the energy to do volunteer work. The house is not as clean as I want it to be. I have lost friends but gained new ones.

    Do your symptoms come and go: Yes. This spring I experienced a very painful five week long flare that ended when
    I increased my Gabapentin dose.

    What helps: Water exercises, yoga & meditation. I have a loving & supportive husband & a good friend who has Fibro.

    Wish list: Doctors educated about Fibro & who have compassion. They need to realize the pain is real & needs to be addressed.

  27. Mary Adams at 5:16 am

    I am a 57 year old who was diagnosed with Fibromyalgia, Raynaudes, Chronic Fatigue Syndrome, and Mixed Connective Tissue when I was 38 years old. Also, I was diagnosed with Sjogrens Syndrome 6 years ago. I had suffered with the symptoms of Fibromyalgia years before I was diagnosed. I was baffled and completely overwhelmed as to why I was feeling so bad and why the pain I was feeling was excruciating all the time. Every doctor I went to told me it was “all in my head, I was just depressed” and put me on all those antidepressants in hopes I’d feel better. But the antidepressants didn’t help at all and just made me more ill. I felt as if I had a severe case of influenza all the time. I was exhausted from the lack of sleep and pain. Finally, when I was diagnosed by a Rheumatologist I was told I’d just have to “live with it”, there was nothing that could be done. And so, throughout the years I have suffered with this debilitating disease that “knocks me on my butt”. The flares last anywhere from a day- if I’m lucky, to months. I hurt all over, have extreme memory loss at times, trigger points the size of golf balls all over my body that hurt so bad I cannot even touch them, headaches, jaw pain, sometimes fever, I run into walls because I can’t walk steady, drop things because my hands don’t work. I get irritated easily. Even my hair and skin hurts. Over the years, my symptoms have become worse. I now have peripheral neuropathy in my feet, legs, hands, shoulder, and back. It started out as severe muscle cramps in my feet and legs but progressed to the neuropathy. I have had the Nerve Conduction and EMG Studies done with no results. I have not been able to drive for several months because of the cramping in my limbs and the neuropathy. My primary care giver put me on gabapentin (neurontin). It has helped a little with the cramping but doesn’t even begin to touch the Fibromyalgia, Raynaudes, Sjogrens, or the Peripheral Neuropathy pain. I have been classified as “Totally and Permanently Disabled”. It is my hope that more research will be done to help those who have Fibromyalgia before they become totally and permanently disabled.

  28. Kathy Carris at 9:40 pm

    I am 41 yrs. old and I have been living with chronic pain for at least 6 years. I was diagnosed with Fibromyalgia almost 2 years ago. I have since then discovered that I have other issues with my spine, bulging discs, leaking discs, degenerative disc disease, osteoarthritis, and bone spurs. Sometimes I wonder if Fibromyalgia causes the disc pain to be much more intense than it might be otherwise. Living with Fibromyalgia is one of the most miserable and embarrassing experiences of my life. I am a Middle School Teacher. I taught Special Ed, 8th grade, and Title I reading for the past 8 years and this year I am teaching Special Ed. Science and Social Studies. The most difficult part of this disease to cope with is the FOG. It is difficult to teach everyday and be expected to be mentally acute when my brain will shut down without warning. I have been in the middle of talking about a topic and my brain stops. I can’t remember what I just said or what I had been talking about moments before. It is embarrassing when I have to ask my students what I just said. The student’s don’t “get it” and my co-workers and bosses don’t either. Now to talk about the pain…Everyday I feel like I have the flu or constant menstrual cramps. My body aches from head to toe. The lower part of my body seems to hurt more intensely than the rest. I feel like I’m being crushed in a vise or trash compactor. The tops of my feet feel cramped constantly and my ankles hurt. I have trouble holding on to things. I feel like I can’t keep a grip on things that should be easy to hold on to. I have burning, shooting, stabbing, pain in my legs. I find myself limping around and there are some days that I hurt SO by the time I get off work that I have to use the wheelchair at the grocery store or Wal-Mart in order to get my shopping done without breaking down in tears before I’m done. I’m extremely sensitive to noise. It’s difficult for me to have my students be interactive and social about the lessons because the noise is so difficult for me to tolerate. I tolerate it because in order to be the best teacher I can be that’s what I have to do, but it is extremely difficult and stressful on most days. The more stress I experience the more intense my pain is. Whenever the weather changes, especially if a strong cold front moves through, the pain becomes excruciating. I have found that barometric pressure has a huge impact on my pain and even if the temperature doesn’t change dramatically, but rain moves in, I experience an increase in pain. I ache everyday, all day! I am tired everyday. Sometimes I feel like I haven’t slept at all. Some days I can sleep for 12 hours and wake up feeling like I’ve only slept 4. When I go to bed I can’t have my legs touching. I have to sleep with a pillow between my knees and my ankles cannot touch one another. Sometimes the pain is so intense even though it’s just my ankles touching. If my husbands elbow, knee, hand, or head touches me it feels like someone is poking me with a knife. I become so surprised by how intensely the lightest touch can hurt when my mind knows that it shouldn’t hurt at all. I also notice that I have restless legs, I wake myself up sometimes at night with my legs jumping off the bed. I get terrible twitches in my arms and legs. They don’t really hurt, but sometimes they are so intense and last for so long that they are distracting which doesn’t help when I struggle to concentrate as it is. I took Lyrica for a year and a half. It seemed as though it was helping a little, but then after that time I had gained almost 60 pounds and found that the relief I may have experienced while taking Lyrica was no longer working and the weight I gained was going me more pain with my back. I have not noticed any difference in my pain level since I quit taking the Lyrica. I take Lortab, Cymbalta, and over the counter headache medicine. I was taking 800mg Ibuprofen up to 4X/day, but my pain management doctor is asking me to not take ANY NSAIDS whatsoever due to the risk to my kidneys and liver. I went a week with only taking the lortab and I experience the worse pain of my life during that time. I went back to him the next week and begged that he give me something different or allow me to take NSAIDS because I could not make it through the days, let alone a week, without them. He gave me a sample of Celebrex and wants me to take Aspirin to protect my heart and Prilosec to protect my stomach. I suffer from IBS which began approximately 12-13 years ago. Near the same time I had an awful experience with what the doctor diagnosed as Viral Neuropathy. The best way to describe it was like Tourettes Syndrome without vocalizations. I had the violent head twitching, jaw smacking, and all. My blood pressure was at stroke level and no matter what I did, I could not control or stop it. I sometimes wonder if that was the onset to the Fibromyalgia because I began to have the symptoms and diagnoses that go along with Fibro within a few years of that incident and the intense pain, tingling, numbness, etc. began within a few years after that. Someone needs to start a serious Bandwagon to find at least a treatment that alleviates the symptoms better than anything I’ve tried so far. With all of the medicine I take, by the end of Wednesday during a work week, I begin to experience the 8 on the pain scale and it just increases from there. All I can say is living with Fibro is a MISERABLE life.

    Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients
    (1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)

    A: Pain, Fog, fatigue

    (2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)

    A: household chores are not done after a day of work because my body cannot handle anymore pain and sleeping through the night doesn’t happen without meds and I still wake up feeling tired.

    (a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

    A: On the best days I can’t concentrate or hang onto things. On the worse days I have to use a wheelchair to do my household shopping.

    (3) How have your condition and its symptoms changed over time?

    A: Pain increase, concentration decrease, sensitivity to light and noise increase

    (a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?

    A: They never completely go away, but they are less intense on some days. Weather, stress, and activity play a huge role in the intensity of the pain. As far as the fog, it seems that stress is a huge factor in the decrease of mental concentration and memory.

    (4) What worries you most about your condition?

    A: I work everyday no matter what, but I get “flack” for having to sit down. The other day my neck hurt so bad and my head felt like 150 lb weight I couldn’t hold up that I had to lay my head on my desk to rest my neck from the pain and weakness. My boss came in and questioned me. I fell asleep at work last year because I was sick AND in pain and took some Benadryl to help me breathe which caused me to fall into a deep sleep. I will never take the combination of my pain medicine and cold medicine again, but I fear, for all reasons mentioned above, that I may lose my job.

    Topic 2: Patients’ Perspectives on Current Approaches to Treating Fibromyalgia
    (1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture)

    A: Prescription medications, over-the-counter medications, topical medications, ice, heating pad, massage, movement, sitting in recliner, using pillows between legs while lying or on sides and under arms when sitting in chairs with hard arms.

    (a) What specific symptoms do your treatments address?

    A: Pain, depression

    (b) How has your treatment regimen changed over time, and why?

    A: Stopped taking Lyrica due to lack of effectiveness in relieving pain and dramatic weight gain that increased pain. Trying different prescription pain medications, taking fish oil, cinnamon, and trying different over-the-counter pain medications. Avoiding sugar substitutes, cutting out all carbonated drinks, stopped smoking, but use an e-cig.

    (2) How well does your current treatment regimen treat the most significant symptoms of your disease?

    A: If I take narcotic pain meds and over-the-counter pain meds I am able to bare the pain as long as I don’t do anything after I get off work. If I only take the narcotics and nothing else it does not help at all. If I’m active after work my pain level rises to a 10 on the pain scale and then I have to take zanaflex to help me relax and sleep, although I do not usually feel rested when I awake.

    (a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?

    A: The treatments I’m using only help me to make through work each day.

    (b) How well have these treatments worked for you as your condition has changed over time?

    A: Some have stopped being effective and I am still doing trial and error to find something that will help.

    (3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

    A: Ineffective in treating pain and nothing helps with the FOG

    (4) What specific things would you look for in an ideal treatment for your condition?

    A: Effective pain reduction and something to improve concentration and memory. Please stop the FOG and pain!

  29. Tia van Etten at 7:57 am

    I am 37 years old and have Fibromyalgia. I first started noticing symptoms of the disease about 10 years ago, but at that time, they weren’t as ferocious as they are now. My symptoms have gotten progressively worse over the years. Especially true the last 2 years. My mother also has the disease and she is in such agony with it (the peripheral neuropathy in her body, leg/foot cramps) that I am terrified of what the future may hold for me. I believe this is certainly a progressive disease and it scares the hell out of me because my life is already much affected by the disease. The main manifestations of Fibromyalgia I deal with in my life are: Severe brain fog/forgetfulness. Easily agitated by sounds (noises, music, loud TV send my brain into sensory overload and lead to grinding, relentless migraines). Sensitivity to light (more migraine fodder) and also sensitivity to motion. I get nauseous sometimes just by being jostled around when one of my sons is trying to play with me. I have extreme motion sickness that leaves me miserable. Jaw pain/scalp pain/face pain that all exacerbate the migraines I suffer with. I get these migraines several days a week, every week. Massaging my jaw, face and scalp all help. There are super sensitive points all over my head and face that feel like I’ve been shot close range with a paint ball gun. I have tried to take Ibuprofen for these headaches, but for some reason it makes me feel more nauseous so I just massage myself for a small bit of relief. Of course, I have the knots (trigger points) all over my neck, back, arms, chest and butt like the rest of the folks who suffer with this illness and they are miserable, but I have a wonderful boyfriend that will massage me whenever I am hurting, so that helps a little. The worst parts of the disease for me are the leg pain (feels like I have been hit with a baseball bat, especially at the top of my thighs and at my kness) which is never ending, the foot pain (burning, tingling, hard knot-like trigger points), restless leg syndrome (can’t sit without having to cross/uncross my legs constantly), severe itching in my legs (usually at night. it is relentless and no matter how much i dig, nothing helps!), the BRAIN FOG is horrible. I hate it! I start talking and 3 words into a sentence, my brain shorts out. I have to sit and try to search for the word I had in mind just a few moments before….or I forget what I’m doing. I will go into a room for something, only to forget why I went into the room in the first place. I am clumsy when I’m in a flare, dropping stuff constantly, running into walls, almost falling over (like someone is pushing me to the side). Another aspect of the brain fog for me is a VERY severe inability to concentrate if there is anything else going on in the background. I cannot process what I am trying to read, complete what I am trying to say, concentrate on what I am trying to do if there is any noise or distraction going on around me. I have to push myself to focus and on days when I am in a flare, even being in a quiet room alone, I cannot process what I am trying to do. I am constantly left feeling like I’m incapable. I also have flu-like symptoms where I just feel “ill”. Run down, weak, sickly, achy, and feeling like I am just going to collapse. I suffer from insomnia which at times, is crippling. Sleeping 4 hours a night at most for a week or two when it decides to manifest. Bad IBS with stomach cramps/diarrhea also, and never know when it is going to strike. Also, I get the burning/hot flashes thing. I go to bed absolutely freezing only to wake up in the middle of the night feeling like I’m roasting alive. Tingling, burning. I have to strip down just to be able to go back to sleep. The fabric of clothing on my skin is too intense and I can’t handle it. Please, help me have a better life. Increase research, awareness and develop drugs that work.I only take Gabapentin (100 mg 2x a day) right now. It helps with headaches some, but not the body pain, confusion and insomnia. I am a mother with 2 sons, and I am in college. Enjoying my future doesn’t currently seem possible, especially if this disease is progressive. I don’t want to be “Disabled”. I want to graduate college and enjoy working the job I am fighting through school and this disease to earn. I am allergic to almost every narcotic drug known to mankind. I also have a weak left heart valve which causes me to have low blood pressure. That means taking drugs like Xanax are not an option for me, so the number of med options I have are very limited. I only take the Gabapentin and a low dose of Vitamin D. I will say that I have noticed exercising helps with my leg pain/foot issues a bit and it also helps to improve my mental mood, but the headaches and fatigue I have prevent me from being able to exercise on many days. I hope that by telling my story here helps to raise awareness for this awful disease. I struggle with it in some way every single day of my life. It affects my children’s lives and my boyfriends life as well. I look forward to a future where I can be a more active, productive and happy person. I am too young to feel this old.

  30. Debra Van Ness RN at 7:11 am

    I am a 49 year old RN of 21 years attacked by fibromyalgia nine years ago.
    I have belonged to online support groups for fibromyalgia for many years. It would be safe to say that the majority of fibromyalgia patients are fed up with the doubts, stigma, jokes and labels. We are not only stigmatized for this disease from hell, but some of us are stigmatized for the medications we need to have any semblence of normal life even temporarily. I am sick all over every single day of my life. I was healthy and never complained of znything until the age of 40. I suffer a pain of being beaten, deep severe flu like aches and intermittent burning pain. This would neec to mention also the horrid stiffness, never ending fatigue, sleep disturbances, cognitve difficulties and etc.. Isn’t the list much too long to mention? I am angry not only with the illness and the way it has taken my quality of life, but also angry with the downplaying of this curse and the light made of the disease from hell. It has affected every aspect of my life including motherhood. I push myself to continue to work and pay with increased pain and other symptoms.
    What helps? For me a prescribed narcotic pain med which is highly stigmatized is the only med that helps me in the least. I am also tired of the false information which says a narcotic does not help fibromyalgia pain. IT DOES for some of us. And yet, to require such a med we must face more stigma. Lyrica did not take my pain away. Furthermore the commercials for Lyrica served to increase the stigma and downplay of this cursed disease. The commercials make fibromyalgia look simple as a hangnail. They ever accurately depicted the truths of severe fibromyalgia.
    Welcome to my usual morning of hell. I awakened from sleep with horrible excruciating all over pain. I had to have help to get out of bed the pain and stiffness are so bad. I shuffled through the house, got a pain med and a cup of coffee. The pain med did work to a large extent but I still feel like I was beaten and thrown in a ditch to sleep. All over chronic exhuastion is never fixed. I must stay in today. I will do little except rest if I can. I am unable to do anything around the houseand getting ready to go out of the house OR leavi g the house today is next to impossible. Taking a bath is on my agenda and is difficult not to mention the fear of falling due to stiffness. I am 49 years old NOT 79. Each year since diagnosis 9 years ago has progressively gotten worse for me. All the symptoms have increased with the passing of time. They say fibromyalgia won’t kill me. However I feel as if I am literally dying each day. But I wiil continue to live knowing the symptoms will increase with time.

    Many of us are fed up with lving this way and also being doubted and labeled. Make no mistake. I am telling you this illness is severe, disabling, extremely painful and much more serious than it is ever depicted. I get to look forward to increased silent and invisible misery and stigma.

  31. Jill Dredge at 9:08 pm

    I have had fibromyalgia for over 10 years. I was not diagnosed until about 6 years ago. After an auto accident my pain became much worse and I was not longer able to work. I went to many doctors, most of which either were ineffective or told me I didn’t have fibromyalgia. Many were specialists. Finally I was diagnosed by a rheumatologist. Meantime, I took most drugs known to mankind for this condition or any pain condition. They caused innumerable side effects and did not “cure” fibromyalgia or make the pain go away. I moved 1 1/2 years ago and began seeing Dr. Michael Gray MD, MPH, CIME who specializes in fibromyalgia, chemical sensitivity, and environmental medicine patients. He has done studies documenting his results. He treated me with bentonite clay, charcoal capsules, and cholestyramine. I am now much improved. I have very rare flareups now and have recently gotten to the point where I am not extremely fatigued at times either. I am able to be more active and am increasing in activity gradually as I continue to improve. At this point I am taking 1300mg of charcoal twice a day. I have discontinued the other medications. Forget all those drugs which do not cure us, this will CURE fibromyalgia. Not a temporary fix. Do not continue paying the pharmaceutical companies millions of dollars to continue to treat symptoms yet never heal the patients. Look into something that really works, even if it is charcoal and it won’t make anyone a millionaire.

  32. Benia Zouras at 6:21 am

    I’ve been diagnosed with Fibromyalgia after a careless driver rear-ended me at a red light. I sustained a concussion and whiplash. Over months of therapy, I saw slight improvement, then worsening. The pain continued. About a year of diligent physical therapy later, I was diagnosed with Chronic Myofascial Pain, which basically means that my muscles forgot how to relax, and are constantly in painful knots and spasms. I also started to notice problems with digestion (IBS) and sleep (insomnia, lack of deep sleep). Eventually, about 1.5 years after the car accident, I was diagnosed with Fibromyalgia.

    I’ve seen several doctors of various specialties (family doctor, neurologist, orthopedic, rheumatologist, gastroenterologist, a fibromyalgia specialist, another neurologist, and another rheumotalogist). I’ve tried all the FDA-approved fibro meds (Lyrica, Cymbalta, Savella), some other meds (SSRIs, SNRIs, NSAIDs, pain meds, sleep meds, muscle relaxants), supplements (magnesium, vitamin d), a special yeast-free diet, biweekly massage, and light exercise.

    Most of the medications only caused me side effects and had no effect on my pain. My current regimen for managing Fibromyalgia/Chronic Myofascial Pain includes taking cyclobenzaprine at night to help me sleep, a vitamin D supplement, stretching/gentle yoga most mornings and doing walking or other gentle exercise when I am up to it, getting an hour of custom massage every two weeks (no limbs), resting when I need to, and being careful not to “overdo”. I also recognized signs of depression in myself and gave journaling a try to help push the depression back. I also blog at “The Table” http://xsarenkax.blogspot.com/ to help share my ideas and experiences with others who may be looking for advice or can answer some of my questions.

    I’m 40, married with no children, and I work full-time in an IT office job. I qualify to take unpaid, intermittent FMLA time as needed, in case my paid sick or vacation time isn’t enough to cover me throughout the year. Working with FMLA allows me to keep my much-needed benefits, earn income, exercise my foggy brain daily, feel useful, and interact with others on a daily basis.

    I’m one of the luckier Fibromyalgia sufferers. My husband did not always “get it” when I kept telling him my pain required me to rest most weekends, but he now does understand and supports and defends me with others. I know of many fibromites who cannot work, have other severe conditions, don’t have family that understands, have little or no benefits and income, and are severely depressed. We all live in pain and it is very difficult not to let it consume you.

    There are a lot of stories from Fibromyalgia sufferers at the Fibroletters Facebook site or website. Please go to https://www.facebook.com/groups/fibroletters/files/ to read them. One of my fibro friends is currently in ER with a bad kidney. She’s had Crohn’s disease and had to have her colon removed with two surgeries. Her teeth are falling out. She also has other systemic diseases. Serious ones. She has a husband with cancer and sons with asthma and their own health problems. She is poor and does not have a lot of options. She goes by Line Black on Facebook. If anyone can help her somehow, please do. She started Fibroletters. She wanted to bring more awareness of the risk of suicide among fibromites. Please help! Thank you for reading.

  33. Sherry Drenning at 4:07 am

    I have fibromyalgia.The pain is so bad and meds I take worked at first but are nolonger working.Just getting through the day is a challange.I take 4 pills a day it helps a little.I have been through alot of test missed alot of work.Sometimes I cant even go to family outings because of the pain is so bad. I been in this pian for 5 years it me that long to get a doctor to. beleivethat something was wrong.This condition is no joke it is for real.I memory loss my body feels like Iam sing a battle
    Weather conditions do effect my body pain.The pain scale from 1to 10 most of the time Iam between 8 to 10 try living with that everyday.I think anyone with this uncontroled pain should be able to get SSI.Just going to the store is to much for me.I would love to do the things I use to dobut the pain wont let me.

  34. Vickie in Alaska at 6:58 pm

    I would also like to add my reply to the FDA questions –
    Questions for Discussion

    Topic 1: Disease symptoms and daily impacts that matter most to patients

    1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)
    A. Pain, Fatigue & Brain Fog.

    2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)
    A. Outdoor activities with family, good nights sleep and things I want to do but can’t like, helping others, remembering things, movies, long drives, daily life things now have a priority order and many times I never get to do extra things.

    a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?
    A. I fatigue quickly, can’t remember things and can’t over exert myself ever. I don’t function at all and have to remain in bed on my worst days.
    3) How have your condition and its symptoms changed over time?
    A. Seems to stay a steady course with roller coaster days. It can get worse with weather, stress and outside pressure. It can get better with warm weather, massage, acupuncture and sun shine.

    a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?
    A. Weather both ways. Stress makes it worse quickly.

    4) What worries you most about your condition?
    A. That with age it will get worse. I’m 48 now.

    Topic 2: Patients’ perspectives on current approaches to treating fibromyalgia

    1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture)

    a) What specific symptoms do your therapies address?
    A. Savella prescription med. to treat pain. Many Many natural supplements far to many to list with the help of a Natural Doctor over seeing my treatment. Acupuncture, massage and good laughs with friends.

    b) How has your treatment regimen changed over time, and why?
    A. Prescriptions have changed over and over due to side affects. Natural supplements don’t change to much but on occasion.
    2) How well does your current treatment regimen treat the most significant symptoms of your disease?
    A. I manage at about 30% reduced symptoms most days.

    a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?
    A. I hold down a job that allows me to work 2 days rest 1day and work 2 more days. My life is basically work, eat, rest. Not much activities besides that. The treatment helps to function but I wouldn’t say it improves my ability to do specific activities. I have to plan and rest to prepare to do things.

    b) How well have these treatments worked for you as your condition has changed over time?
    A. Helps me continue to manage at a low functioning level. I continue to hold a job.

    3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)
    A. Downside is that I have to take valuable time to get acupuncture, massage or visits to Doctor or Natural Doctor to manage this often. Time that could be better used having a life.

    4) What specific things would you look for in an ideal treatment for your condition?
    A. Pain management that doesn’t cause fatigue, weight gain or stop you from being able to drive, would allow you to sleep and not cause additional brain fog.

    Thank you. V

  35. Deb Etter at 6:58 pm

    PLEASE consider in doing research FM and finding meds that will help all of us for this silent disease. I started back in my early 30’s~almost 30 yrs ago! Doctor first treated it as depression ,which I DID end up going thru for almost 12 yrs. That was 1 of the worse things to go thru ,because at first the meds didn’t work. I was so tired all the time,,felt like I couldn’t hardly lift my arms. I use to love to hang clothes out on the line, do weeding, cut grass, go on hr walks everyday, now I can barely hold onto t me out of bed.things, constantly droping things, can barely get out of bed ~sometimes hubby helps by slowly pushing me out. other days I use a cane to get down the stairs and walk. There r days it feels like a Mach truck just ran over me, or like someone hit me all over my body with a baseball bat. Now it seems like it’s affected my eye sight, and I have flu like symptom days. I felt like I was going nuts, ~ have things feeling like they were crawling on my body, or being misted by water on my arms, feelings of electricity going thru my body. My brain cant remember diddly squat a few minutes ago ,,but I can remember things from yrs ago. T rying to remember if I have said what all I go thru.. The fibro fog is terrible u go to say something or in the middle of saying something and your mind goes completely blank! ! The meds they describle doesn’t hardly work for us, and only cases us to gain a lot of weight! Wish there was something that would actually work for all of us. Please help us!

  36. Vickie in Alaska at 5:36 pm

    I was diagnosed almost 18 yrs ago after years and years of doctoring and being told it was all in my head or that I was just depressed. I was a young mother of 1 who was in so much pain and fatigue that I couldn’t function. I have been run through the gambit of depression meds and many made the pain worse. Finally took all my medical records and went to Minnesota from Alaska and was diagnosed at that time. I have tried numerous different meds to combat the pain… Currently on 25 mg of Savella only at that dose because the higher dose causes hot flashes. The drug that worked the very best for me pain wise was Lyrica… However the weight gain was fast n furious so… That was a no go. I use alot of Natural Supplements to work through the day to day struggles. Weather affects the pain tremendously, stress contributes to the daily challenges, sleep issues arise and just when you think you have it figured out it changes again and then a new challenge begins. Hot tubs, massage and acupuncture have been the most helpful. The battle continues daily… Warmth and sunshine help alot.

  37. Jenny Phipps at 5:26 pm

    I was diagnosed by rheumatologist almost 2 years ago after specialist after specialist , test after test, I recently found a fabulous gp and have came to terms that I have fibromyalgia and have stopped looked for underlying reasons for my pain!
    I have tried so many meds , I have lost count, I have also tried physio, massage, hot and cold products, potions and lotions, changes to diet, nothing seems to help! It is all very exhausting and frustrating! I will not give up though!
    My pain is 24/7, worse and more intense some days than others, but it’s so hard to pin point a time or trigger when it is at it’s most intense! I suffer pain throughout my legs and arms, hips and back, shoulders and neck, feet and hands, stomach and ribs, I think the only place I have never had this pain is my bum cheeks! , I have very bad nausea, little appetite, or a huge appetite, lots of energy or none at all! Can’t remember what I am trying to say and have lost alot of memory! Get very cranky, upset or angry for no apparent reason! Also have very calm days, I think that’s purely from exhaustion or lack of sleep!
    I work full time cleaning and find ironically enough, my pain is at it’s peak when I am resting or sitting, if mobile and active the pain is at it’s lowest! But who can keep going 24/7!
    I think any study or research into something that could help or even trial something to give relief would be amazing!
    Fibromyalgia is very debilitating and the unknown is the worst!
    It is particularly draining, not only on myself, but affects my family and friends just as much! Seeing someone they love suffer through unexplained pain, I feel sometimes they are in more pain than I am!

  38. Caitlin Jameson at 5:13 pm

    Living with fibromyalgia at such a young age gives me a horrible outlook on life. I have dealt with these symptoms for 3 years now, and I am only 18. It has made college impossible. The costochondritis chest pain is crippling and not being able to breathe is so frustrating. My doctor didn’t really know what to tell me to do. I can only walk for so long to get exercise, until I am in severely worse pain than usual. I used to enjoy walks, and now I enjoy when I can simply get out of bed without losing my breath or falling. No one understands the pain, because it’s not something visible or widely known. Therefore, no one really cares. I’m afraid to think about how long I have left in me until I can’t do college or a career anymore. We need a cure NOW!!!! I can’t seem to find any kind of medication that is helpful to put this to a rest even temporarily. Unfortunately, until a cure is found I have to live my life cautiously and have my teenage years and young adulthood robbed from me. Please, make a more effective treatment!!!!

  39. Anne morales at 4:17 pm

    My name is anne,Ive been suffering from Fiberomyalgia and Myofacial Syndrome for 15 years. At first I really thought I was going nuts because the pain was so bad and every doctor I went too had No Idea what too do for me.I have pain all the time.Insomnia,restlessleg syndrome too .Everything that you all have posted Ive gone thur too,It really makes life so hard with just day to day tasks.I was a floral Designer but had too give it up because I never new what the day was going to bring me..Iam allergic to asprin and most meds that could help Iam not able too take.This really has affected myself and my family.I will pray for all of you that have been affected ,May God Bless you all.

  40. Dawn at 2:16 pm

    Arachnoiditis is FREQUENTLY misdiagnosed as FIBROMYALGIA, Failed back surgery syndrome, and other diagnoses.

    PLEASE RESEARCH EPIDURAL STEROID INJECTIONS!!

  41. Alison at 1:00 pm

    I was (thankfully and finally) diagnosed about three years ago, after being told there was nothing wrong with me or it was all in my head by several doctors in various disciplines. I work full-time and, with my husband, raise our child but was becoming more and more concerned about the pain and fatigue I cannot get rid of, no matter what I do (or don’t) push myself to accomplish.

    The physician I finally discovered is more of a geriatric specialist (I’m in my 40s), but his treatments are making it more feasible to work my high-stress job and be a better, hands-on mother and wife again. At the end of the week I collapse. Some medications (Lyrica, for example, had awful side effects but the doctor who prescribed it — not my current doctor — laughed at me, then proceeded to say it was in my head and I wasn’t in pain. This was at a point where i could hardly get out of bed from the pain in my legs each morning.)

    I am not overweight. No diabetes. No other major illnesses. This all began when a truck rear-ended me when I had stopped at a red light. Since then, my health — and life — have spiralled.

  42. Sheri New at 11:40 am

    I was diagnosed with Fibromyalgia almost twenty years ago after five years of unexplained pain and a surgery for a neck injury. At the time I was diagnosed, little was known about the disease and there were probably two books out that could even begin to describe what I was going through or what I could expect. I was told at that time that I should probably apply for disability because I was probably going to need it. I said “no thanks, I am going to live my life”. I was very active as a teen and a young adult, participating in everything from volleyball and cheerleading to singing. I tried to stay active and I work a full time job. It has not been easy not giving in to this disease. I have pushed myself through the pain to the point that I will try and do something I know I shouldn’t just to appear strong, only to end up injuring myself further. It is a joke to my family and people who know me what a klutz I am. I have taken Skelaxin, Amitryptyline, Trazadone, Prednisone, Celexa, Savella, Gabapentin, Tramadol, Cyclobenzaprine, Cymbalta, Celebrex, Nexium, Cymbalta, Wellbutrin, Tramadol and Lyrica. At one point, when I was on Lyrica, I was on 18 different medications because of the side effects of Lyrica and ended up in ICU because I was suicidal from all the meds. I asked to be taken off of EVERTHING before I left the hospital. Now I only take Wellbutrin, Nexium, calcium with vitamin D and magnesium, Lecithin, B-12 and a lot of Aleve. The thing that scares me the most is that now I am 50 years old and after nearly 20 years of fighting, we are not much closer to a treatment let alone a cure and I am just starting to feel like I won’t be able to fight like I have been. It might just be getting time for me to slow down or even think about disability but from the stories I have read, this is just one more fight I will have to go through. I am a fighter though and I will NEVER give up!

  43. Margaret deVries at 9:27 am

    I have been diagnosed with Fibromyalgia 18 years now but believe I have had it forever, as a child I remember severe “growing pains”
    Fibromyalgia and Myofacial Syndrome make my life difficult to say the least! I think losing the ability to do so many things, things I enjoyed like gardening, cooking, even going to grocery store is sometimes impossible! I wear soft T shirts and pants, all day! To actually get dressed can be agony!
    Riding in car I can sometimes feel hairs on my husbands arms jabbing me like pins! A simple tough can make me sick to my stomach as I try not to scream!
    Nighttime leg cramps are excruciating! Fatigue, depression! But the worst thing is people see us as normal and cannot comprehend what we go through

  44. Jen at 9:19 am

    I have had fibromyalgia since 2005, I was diagnosed when I was 16 years old. I had gone through 2 years of agonizing leg pain that was believed to be “growing pains” but as I pointed out to my doctor that I hadn’t grown a single inch, they finally listened to me and sent me to a rheumatologist who diagnosed the Fibromyalgia.

    I hate having this illness. I had to be homeschooled my last two years of high school because my body couldn’t cope with the rigorous schedule of a normal school day. I have lost so many talents and skills because of this illness. I used to be a very bright student and very talented at music, but because of the medications used to treat Fibromyalgia and perhaps the illness itself, I have lost a lot of my cognitive skills. I can no longer play violin or piano because of the pain in my arms and hands. I had to drop out of college because I couldn’t keep up with the assignments, even in an online setting.

    I am currently taking Lyrica and Tramadol for my Fibromyalgia. This is a fairly effective treatment at treating my pain, but that is it. I have gained 100lbs from the Lyrica and from being inactive due to this illness. I am now able to exercise a little bit each day, but not enough to be able to reverse the weight gain. This illness has robbed me of my confidence and self-esteem.

    I am now 24, still living with my parents, and unemployed. I have no idea what to do with my life because I can’t work and I don’t qualify for SSI.

  45. Deborah Hood at 9:18 am

    I have had fibromyalgia for at least 15 years. I hurt every day of my life. I try to hide it from people . It is very depressing. We need more research done to help people with this disease. Doctors do not understand what we go through. I have tried all kinds of meds with no results or they completely knock you out. Please help us.

  46. Kimberly Miller at 8:51 am

    I have suffered from FMS and its manifestations for several years. I have had no relief from any of the fibromyalgia drugs currently available. I also have interstitial cystitis, restless legs syndrome, and peripheral neuropathy, all considered complications of fibromyalgia.

    I have seen my life go from energetic and fun-filled to painful and exhausting. Simple activities are overwhelming due to total lack of energy and due to pain.

    Research is need to find better alternatives to currently available medications.

  47. Sarah Kramer at 8:41 am

    Some of those symptoms are side affects from Lyrica. I cannot take Lyrica for those exact rreasons.

  48. teresa smith at 8:39 am

    I want to respond to the FDA QUESTIONS.

    Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients
    (1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)

    answer: constant unpredictable pain, anxiety, lack of sleep, fatigue, panic attacks, tremors and depression

    (2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)

    answer: living without chronic pain, more family time, being able to go back to work, how I wish I could sleep more and travel to all the places Ive always dreamed of

    (a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

    answer: best days – limited riding in a car, limited family time, limited everyday living, decreased depression/anxiety/pain

    answer: worst days – cant ride in a car, no family time, no everyday living and constant pain/depression/anxiety

    (3) How have your condition and its symptoms changed over time?

    answer: over the 12 years I have had Fibromyalgia many more health problems have been added to my list including , tremors, panic attacks,bulging disc, SI joint, Raynaud’s, bi-polar, anxiety, depression, arthritis and degenerative disc disease

    (a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?

    answer: Better – symptoms are always present but better on my current medications and vitamins

    answer: Worse – weather changes, cokes and caffeine make MY muscle pain worse.

    (4) What worries you most about your condition?

    answer: not being able to spend enough time with my family, the continuing progression of my Fibromyalgia and the fear I’ll never be able to do the things that I have always wanted to do

    Topic 2: Patients’ Perspectives on Current Approaches to Treating Fibromyalgia
    (1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture)
    (a) What specific symptoms do your treatments address?

    answer: chronic pain, anxiety, panic attacks and depression

    (b) How has your treatment regimen changed over time, why?

    answer: changes in drugs due to lack of decrease in symptoms

    (2) How well does your current treatment regimen treat the most significant symptoms of your disease?

    answer: I have decreased chronic pain, less anxiety, less panic attacks and less depression at times. But the sudden onsets or flares are always unpredictable.

    (a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?

    answer: able to spend more quality of time with my family and at times able to ride in a car for short periods of time but always have an ice pack on my back

    (b) How well have these treatments worked for you as your condition has changed over time?

    answer: that is always on going so I am a work in progress. Some days are fair but the pain never lets me forget what I have wrong with me and without new drugs or best case a cure this is going to be the way I will have to spend the rest of my life, always searching/hoping for better ways to control this horrible illness

    (3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

    answer: side effects are a constant with all medications. Riding in a car is always a painful experience. Stretching my muscles every day is challenging but necessary if I expect to be able to walk or move around the house on the best or worst days

    (4) What specific things would you look for in an ideal treatment for your condition?

    answer: reduction in sudden onset of harsh pain, chronic pain, anxiety, depression, the never ending isolation and the inability to stop the increase of new health issues

  49. Kim Williams at 8:36 am

    I have Fibromyalgia and other chronic pain problems. I am in constant pain 24/7. I have been fighting to get disability for 4 years. Fibro is a debilitating disease. I have not been able to work since 2009. I go to doctors on a regular basis. Medications only take the edge off of the pain temporarily. I suffer from fatigue, insomnia, chronic pain from head to toe, depression, memory loss, fibro fog, inability to focus, migraines, high blood pressure, muscle spasms, and more that I cannot remember at the moment. To be denied disability with all of these problems makes everything worse especially since I have lost everything. I was the head of my household and now I can’t even provide a roof over my kids’ heads. Do you know how embarrassing it is to have to ride on an electric cart at stores when I am in my 30’s and have people look at me like ‘why is this person riding a cart when there are 80+ year old people walking with ease through the store?’ I have no quality of life. I cannot play with my kids or do any housework without severely painful consequences. I am tired all the time no matter how much or how little sleep I get. I can’t get good sleep at night because of all of the pain and the insomnia. Getting dressed and taking a shower causes pain and I am so tired afterwards. My whole family suffers due to my Fibromyalgia. I am tired of feeling useless all the time. I can’t stand to have to have people do things for me but I have no choice. I have to fight my own body every minute of every day. And that alone wears me out. I try my best to trick my own mind into thinking I am going to have a “good” day but it doesn’t work. Everyone with FM says we have “good” days and “bad” days. The definition of a “good” day is being able to drag our bodies out of bed, fake a smile, attempt to do light housework, and any other small tasks that are so simple for “NORMAL” people all while still dealing with NEVER ENDING PAIN. I do NOT remember what a pain free day feels like. I do Not know what it is like to feel “Normal” any more. Some doctors understand parts of this horrific disease but there are still a LOT that don’t. Those that don’t treat you like a liar, a criminal for needing pain meds. It seems like our government is making it harder to get medications that actually help and harder to get disability that I paid into since I started working when I was 15 because of those that lie and take advantage of “the system”. I fought to keep working in pain but I can’t even tie my own shoes with out pain.

    FIBROMYALGIA needs recognition nation/world wide as a REAL debilitating disease. Unless you experience non-stop pain every minute of every day, you have no idea how difficult it is to keep on living, keep on getting out of bed despite the pain and depression. It really takes a strong willed person to live with this horrible disease. PLEASE HELP US. ~KW

  50. Evelyn Buckley at 7:54 am

    I have had random pain most of my life, with most of it being put down to back problems. Over the last few years it’s been obvious that something more is wrong. My doctor says I ‘probably have Fibromyalgia’ and I should take paracetamol. I’m already on Tramadol and Gabapentin, have been on Fentanyl patches, Amatryptilene, Diazepam and others I can’t remember.
    The pain is now all over my body. Daily headaches, sensitive scalp, pain in the neck, ribs, chest, hands, thighs, abdomen, back, hips, knees and feet. I itch constantly, sweat alot, sleep badly and suffer from stress.
    I am self-employed full-time and struggle day to day, as I very much doubt I would get the financial assistance needed to stay at home.
    I’m taking up Yoga to help, seems like a small thing but it’s all I’ve got.

  51. Rhiannon at 7:52 am

    Hello, I am a 42 yo Male with full blown AIS surviving over 23 years now an was given only 5 years to live.. well I am also a fibro patient and have many other chronic pain issues having PRN, Liver burns and hurts,my Kidneys hurt, My spine hurts.. so many things I can list.. however Fibro has really taken a toll on my body.. I am so sensitive that I do not even want to be touched by anyone, My companion of 11 years is having an issue with it being that he cannot hug me or even cuddle.. t’s affecting everything in my life, I have no friends I have no family .. most of it because of depression an having so many health issues but fibro has really taken it’s toll on me. I wish physicians would have a look about this disease and see that it’s real. Most Sincerely, Rain

  52. Sarah Kramer at 7:39 am

    I have had fibromyalgia since the 80s- Been through numerous muscle relaxants, anti-inflammatory meds and anti-depressants and pain pills. Nothing has totally taken the pain away. I currently take Voltaren (anti-inflammatory; Robuxim (muscle relaxer); Zoloft (anti-depressant); Neurontin (pain); have Lidoderm patches to use when needed and Tramadol when needed for pain. I get regular therapeutic massages + acupuncture as well. I am in pain daily-dependent on my stress level, over-use of my pain tolerance and fatigue level pain becomes intolerable. If able to keep a routine of good pain management I can function-I am a clinical social worker and do counseling + a pastor’s wife. I know if I quit working I will not be able to move and pain will increase. On good days my pain level is a 3/10 on stress-filled days or fatigued pain is a 9/10. I have worked with Clts with fibromyalgia that are in much worse pain and I empathize but also see some who have quit moving and what that does to their mind, body & spirit.

  53. Gail Mollencopf at 7:29 am

    I have lived with pain for years. Four years ago because of other diagnoses went gluten free. It helped some, but February this year it got to where pain level from 0-10 was a 15. Finally my primary physician sent me to a Rheumatologist in March and I was diagnosed with Fibromyalgia. She put me on lose dose meds and low impact exercise. I do everything possible to help myself. But some days things just don’t help and I have pain no matter what. I still work but only part time. Not able to work more this disease just won’t let me. My social life has change, not able to get out to see family and friends like before this pain. This is no way for anybody to live. This disease needs to be recognized and we need real honest help to get our lives back.

  54. Cathy at 7:16 am

    I have Fibromyalgia and have had for many years. In the past few years I have begun taking medication for it. Nothing seems to help. I have taken so many medications I can’t even begin to remember them all but at this time I am on Lyrica 150mg twice a day, cymbalta, ultram 3 times a day, noratrypline, plus I have chronic daily migraines so there is medication for that plus IBS. All of these illlnesses seem to go hand in hand along with other autoimmune diseases. Something needs to be done about this disease. There are so many people in pain 24/7 every day of there life. They are unable to function. There is no life for these people and I am including myself. Family life is lying in the bed all day. Many like me try to work but with excruciating results. Please find something for me so that I have a life again and not a horror story for the rest of my life.

  55. Tammy Fiske at 7:01 am

    I have had FM for 17 yrs now. my daughter was 2 at the time I was diagnosed. I could no longer pick up my child without help. now i am 45, can’t work, am in the middle of a divorce, apparently my complaining did me in, have never been able to explain this pain to anyone. I am on 4 different med. and can’t begin to tell you how many more I have tried..am also trying to get SSI. because I don’t qualify for SSI due to the fact that my husband made enough money for me to be able and be a stay at home mom..I need pain meds on a daily basis but can never get them due to the regulations from other people abusing them. so the ones who need them suffer. how is that fair? I believe that those people with FM should be in a class of our own. we deserve to be treated like any other person with chronic diseases.. this is debilitating at time. I think it’s time that we get the treatment and medicines that we need. just because we don’t look sick all the time, doesn’t mean we aren’t. I wouldn’t never wish this on anyone. I can no longer go outside and even through the basketball around with my kids. or try to do gardening. anything I try to do HURTS MY BODY.. when the skin on your body hurts when the cat just walks across them.. something is wrong.. HELP US.. PLEASE> hell. the pain in my hand from typing this alone. is already setting in.

  56. Melissa Wood at 6:54 am

    I am almost 38 and have had fibro since I was 15 years old. I was diagnosed finally in 2005 after going through spinal surgery for no reason since it didn’t do anything for my pain, then they finally told me it was fibromyalgia. Tried getting disability but was treated like a mental patient and didn’t really even consider my physical pain. Disability system is a joke, I had lawyer, I went through all the appeals and such and still turned down. I have given up on that but it is a life sentence of pain that no one besides other sufferers can relate to. I don’t even remember what it feels like to be “normal”. I take Lyrica among a few other meds but still no real relief. I have an 8 year old son to take care of so I plug away but life is hard.

  57. Karin Aubrey at 6:33 am

    Fibromyalgia is a debilitating disease that affects not only those of us that suffer from it, but also the friends and families that we love. This disease prevents us from leading a life where we can plan ahead for birthdays, anniversaries, holidays and everything else. We never know when we will be in a flare or hurting so badly that we can hardly move. We have some good days, defined by how much pain medicine we need and what activities we can participate in, whether we can make it to work or not, whether we can go play miniature golf with the grandchildren, whether we can even get out of bed some days. Some days I am in so much pain ALL day that I am unable to do much of anything physical. Some WEEKS I have flares from fibromyalgia and I am unable to go without taking the immediate release medicine through out the day. On those days, my pain level is too high to be able to even walk down my stairs to check the mail. Try to imagine being in a roll over accident where you are thrown around and bruised all over. That’s what my body feels like. One GIANT bruise! Now, without pain medicine, I would feel like that every single day with no relief. Many employers prohibit the types of medicines i take for my pain and it is frustrating. I would much rather be working. However, many of us cannot hold down a steady because of the pain days. My pain management doctor and I spent 7 months trying all the other non-narcotic meds out there to get me some relief. None of them worked. All I can do is hope that they will come up with something that my body will respond to, other than the pain meds I am now taking. There has to be a better way…. we just have not found it yet.

  58. ROBIN LEBLANC at 6:04 am

    I THINK I HAD FIBRO FOR YEARS, I REMEMBER MY GRANDMOTHER TELLING ME ‘OH ITS JUST GROWING PAINS’ MY LEGS WOULD HURT ME ALL THE TIME. I WAS DIAGNOSED @ THE AGE OF 41, IM NOW 47, I FEEL LIKE ITS PROGRESSING, I HAVE MAJOR FLARE UPS AND I SEE THAT STRESS IS ONE OF THE TRIGGERS, ALTHOUGH ITS NOT THE ONLY TRIGGER FOR ME. WHEN IM IN A FLARE UP, IT IS TERRIBLE, CANT SLEEP, THE PAINGS FEEL LIKE THEY ARE ROLLING, MY PELVIC BONES FEEL AS IF SOMEONE IS ON EACH SIDE OF ME PULLING ME APART, THE PAINS IN MY LEGS, I DESCRIBE IT AS FEELING LIKE I HAVE BONE CANCER, I DONT HAVE CANCER IN MY BONES, BUT IT FEELS LIKE IF I HAD BONE CANCER THATS HOW IT WOULD FEEL, ITS A DEEP BONE, LIKE MY BONE MARROW IS THROBBING. IT FEELS LIKE I HAVE THE FLU, WITH 100X BODY ACHES, LIKE ITS PINGING ALL OVER MY BODY. I HAVE MAJOE FATIGUE, MY ARMS AND LEGS DEEL LIKE THEY WEIGH 100LBS EACH, ITS JUST A TERRIBLE DISEASE THAT HAS ROBBED ME OF BEING MYSELF ITS HARD I CANT GET OUT AND PLAY WITH GRANDBABIES, ALL I DO IS CRY AND SOMETIMES WELCOME THE IDEA OF LEAVING THIS WORLD, IM NOT SUICIDAL BY ALL MEANS, BUT SOMETIMES THE PAIN IS JUST THAT GREAT, IM THANKFUL FOR THE SUPPORT AND UNDERSTANDING FROM MY HUSBAND, THIS DISEASE HAS ROBBED MY HUSBAND ALSO, HE HAS TO WATCH HIS WIFE, SIT UP AND CRY ALL HOURS OF THE NIGHT, AND IT MAKES HIM FEEL GUILTY FOR NOT BEING ABLE TO DO ANYTHING TO HELP ME!!!

  59. Terrie Walker at 5:48 am

    I was finally diagnosed with Fibromyalgia 6yrs ago. I was working and tending to my 3 girls, I was a very outgoing and was always doing something with my girls when I first started hurting three years before I was diagnosed. Now I am on 5 different meds the main one is Lyrica 150 mg 3 times a day plus steroid shots. I had to quit work and stop going out with friends due to all the pain. Now days it takes everything I have to keep the house clean and tend to my kids. I am always having to cancel plans and stuff with my girls due to the pain. With me having to quit my job it has made it really tight for us and I have to tell my girls all the time that we can’t afford it. Now, I just stay on my couch with a electric blanket do to all the pain. The really sad part is I am always telling my girls and husband to please don’t touch me. I start crying every time I can’t even give them hugs due to all of the pain.

  60. Deborah Hale at 5:45 am

    I have only been recently diagnosed with fibromyalgia, but I also have Degenerative Disk Disease and arthritis throughout my spine, along with arthritis in both hips and nerve damage in both legs and arms. I have not been able to work at all since 2002 and am forced to live in a house with 5 other people because it’s all I can afford on my income from disability. I used to be very active and led a full life that included traveling, gardening, and hobbies, now I can’t even walk up porch steps or rise from a chair without assistance, let alone bend over to pull a weed or stand to bake a birthday cake. My only “traveling” now is to and from the doctor’s office. I wasn’t done with my life, I had many things I still wanted to try, but now I am a prisoner of my own body and I have lost EVERYTHING. Drugs do not help me, nor does physical therapy or supplements or hot baths or any of the other “let’s try this!” that I have been offered. The pain is constantly there, sometimes better than others but NEVER completely gone. We need a cure, we need to learn a cause so it can be prevented, we need understanding, we need education.

  61. Diana Martin at 5:28 am

    I was diagnosed with Fibromyalgia in 1996. It changed my life forever. I spent the 1st 2 years bedridden, now although able to get up and out of bed my activities are very limited and always include worsening widespread pain. I currently take no prescribed medication I have had no insurance for 10 years and back when first diagnosed the meds they tried on me did nothing too alleviate any of my symptoms but the side effects from those drugs was by far worse for me that the fibromyalgia. I now just live with widespread severe pain daily with little hope of ever feeling any better.

  62. Michelle Calhoun at 5:16 am

    I woke up in pain one day 4 years ago, and it has gotten worse and worse. It took 6 Doctors to diagnose the syndrome. The pain moves from area to area randomly, could start in my hips and knees in the morning and move to shoulders and neck by evening. Occassionally I will wake up feeling relatively ok, and start a project or attend a social event, only to have the pain wash over me like a wave in the middle of the event. I have tried every FDA approved med with extreme side effects. I currently take sleeping medications and non narcotic pain medications that do very little. I try to remain active, but have many many days in bed after over exerting. Energy levels are non existent. Some days I look to my future knowing it will be filled with pain and wonder how I will live with this for the rest of my life.

  63. Jan at 4:49 am

    Hi, I have been diagnosed with fibro in the last 4 years.Although I am positive I have had it since a bout of Glandular Fever 28 years ago while I was pregnant and my father died suddenly.
    Pain meds only sometimes takes the edge off depending on the severity of the flare.
    My husband does a lot of things on his own because I am not well enough to join him. you cant really plan as you never know how yr body is going to be. I work partime and struggle with this, wearing myself out and no energy for home life, always sleeping or feeling very unwell which is very frustrating for me let alone my family. we might look fine on the outside, absolutely not true it is a cruel disease.I also have tried disability and of course its just not enough to warrant a pension, oh what a shame started work at 14 and am now 52, unfortunately my body has chosen otherwise.We need help in ALL area’s of this disease

  64. Mary Liljengren at 4:25 am

    not much I can add, but I can’t wait to get old and die.

  65. Bev M at 4:23 am

    I have suffered since 1982… officially diagnosed 1992…. over the years have taken numerous medications but nothing seemed to work and only caused more problems… since taking on the job of raising a grandson in 2007, I haven’t taken anything other than Ibuprofen, Guaifenesin and MSM complex. I have learned to live with the pain, doesn’t mean that I like it… I have learned to cope with doing things around the house in segments… clean 10-20 mins, rest etc. I get depressed because I can’t and every day I want my life back…. because I think I can remember what it felt like to be normal…

  66. Chris Bangert at 4:13 am

    I have had symptoms of fibro since I was a child but wasn’t properly diagnosed until 1999. I have pain everyday and haven’t been able to work since 2000. It took me 3 yrs to have my disability approved. During those 3 yrs I was told I was a liar by a judge, had previously been told by a doctor that I was crazy, and ignored or laughed at by family and friends. I take several meds for pain, anxiety, and depression. I can’t read very well anymore, my eyesight is getting worse even though my vision test was good, my hearing is getting worse, I have noises like thousands of crickets in my head and ears, and due to pain and fatigue I have NO energy. I have also developed type 2 diabetes, degenerative arthritis in most of my joints the worst being my neck, hands, back, hips and knees. I am at the point now that I can’t afford my premiums on Medicare part D, my medications, including Levemir FlexPen, needles, and oral diabetic meds. I live alone and have great difficulties cleaning my house. In my mind I can still do everything I used to and I wear myself out physically because my body won’t let me do it.

  67. Peggy Y. Burke at 3:30 am

    I have suffered many years with this chronic
    Pain. My neck and back get really bad a lot.
    Other times I have pain in my arms hips and
    All over. I have tried everything. Many meds,
    Cortisone shots in trigger points, acupuncture
    Even nerve block shots.
    I am never pain free. Stress makes me worse.
    I hurt and do not sleep well. I have IBS also.
    I’m on Nerontine, flexeril, Prozac and hydro condone.
    Heating pad helps some as does TENS unit sme
    Massage and accupunture help BUT are NOT
    Covered by insurance.
    I have pain especially at night. I can’t sit, stand
    Or lie down in one position for very long.
    I have to stretch . I have to rest during the day
    Some days. Sitting at the desk pr riding in the
    Car for long hurts me. Even sitting in church.
    My life is a constant challenge . I refuse to give
    In to the pain and I refuse to take the pain
    Meds as often as possible because of side affects.
    The Fibro drains all my energy and affects
    Every aspect of my life.
    It took years before I even got diagnosed. I had
    Doctors tell me it was all “my nerves ” and to
    “Get a hobby.” This is a very daring disease.

  68. Debbie Stitcher at 3:11 am

    I have been diagnosed for 10 years. Fibromyalgia is so unpredictable . One day I wake up and the pain feels like a mild case of the flu, the next day it may feel like the worst pain I’ve ever had, and this is all over my body, joints and muscles. I take medication for sleep, sometimes it works sometimes it doesn’t on nights when the pain is too bad. The fatigue is always present. I have to do a little housework, rest a little and repeat the cycle until about 2 pm when I usually have to rest for the rest of the day. God has been good to me and I try not to complain, but I would so love to have my old life back or something close to it. I miss working and I would love to be more active with my grandchildren and in my church. The medications available treat some of the symptoms but we need a cure or at least medication specifically for Fibromyalgia, what we have now are a few meds invented for other illnesses that “seem to help” with Fibromyalgia. How did Fibro change my life – from productive to dependent, from active to always fighting fatigue, from 1 pill a day for allergies to a box full of meds to take (only to obtain little to moderate relief), from a fulfilling life to feelings of guilt over what I can no longer do for myself and my family. I do not want an improved pain pill, I want medication to treat this disease not mask the symptoms.

  69. Lori Harrison at 2:54 am

    I was diagnosed with Fibromyalgia at age 38, I am now 56. My Reumatologist is excellent and has kept abreast of any and all research and medication available. Prior to becoming his patient and while his patient, I have tried the following medications without any relief of the symptoms:
    Nortriptyline, Lyrica, Cymbalta, Gabapentin, Guaifenesin, Meloxicam, Celebrex, Ibuprophen, Skelaxin, Amitriptyline, Trazodone, Valium, and even Prednisone. None of these medications have alleviated the main nerve pain symptoms. Most had some nasty side effects or were almost laughable ideas like the Guaifenesin. Currently I survive using Norco and Flexeril which are not great cures but simply allow me to go beyond the pain and get roughly 6 hours of sleep each night. I do have other health issues and these 2 drugs help with those also. I did find it interesting that I was found to have almost no vitamin D and my levels of Vitamin B12 were as bad. I now take both vitamins daily but the Vitamin B has actually elevated the nerve pain.
    I have not tried Savella as my insurance will not cover this medication.
    I just found out they may have developed a blood test for this “Condition” which is wonderful, if true! I so hope that if further testing and research is done they will be able to isolate the blood markers and utilize the information to actually develop a REAL drug for relief of at least the pain of Fibromyalgia, if not the other symptoms as well.
    Also if they can isolate the markers for the Condition maybe it will become a “Disease” and not a catch all to throw at patients for any other issue they may have. That in my opinion is the worst part of the “Condition” . There are still Doctors who think it is all in “Your Head” or who try to tell you that symptoms of other illness’s are just your “Fibro” acting up. I have been a victim of this and do not appreciate the way the Medical Community at large assumes that if you have Fibromyalgia in your health record you are a hypochondriac or they utilize that diagnosis to avoid researching and treating other very real medical problems.
    Thank you.

  70. LeSondra Pedersen at 1:25 am

    My name is LeSondra Pedersen and I am 37 years old. I was diagnosed roughly 3 months ago after years of pain and sleepless nights. Doctors would look at me funny when i said i was always tired but could never sleep. I have been tested for several things and everything that could explain my pain comes back negative. It took a urologist to finally figure out that i had fibromylgia because as he was doing an exam he noticed that my muscles were constantly having spams. There are days that i cannot get out of bed wihout help. I feel like i have been hit by a train more days than not. Every step i take feels like i am walking on hot nails. My doctor tells me to do 30 minutes of aerobic exercise everyday. I have absolutely no memory. I have to set alarms on my phone to remember anything. I can get up and walk 5 steps and already forget what i was getting up for. I take lyrica twice a day and that is all my doctor has given me. It does not do much for the pain but it does help the constant anxiety. I really wish more doctors would take the time to fully understand fibromylgia and try to help us that suffer with it. I wish there was more information out there about this disorder and what we can do to ease the pain. In just the last year i have had to give up doing many of the things i love to do such as hunting and fishing. I cannot walk far enough to get to a treestand much less pull back a bow to shoot it. Along with the pain we have the depression it brings because doctors do not understand and we have to give up things we love because it hurts to much to do them. I cannot sit through one of my childrens sports events because if i try i will suffer for days afterwards. Depending on the severity of the disorder some people cannot hold a job, yet have to fight for years for disability because doctors do not understand the severity of pain we are in. If we find a med that helps we have to deal with the severe side effects of the meds. Like lyrica, until i started taking it i could at least remember what i got up for. It is very depressing and nerve wracking to have to depend on my 14 year old daughter to help me walk everywhere i need to go. She helps me walk through stores, school, to and from the bathroom at home. This is unfair to her and makes me feel like a pretty pathetic mother. I am suppose to be there for her not me depending on her. I am really glad someone is finally looking into this and hopefully finding something that will help us. If we had a disorder that they could actually see they would have already been testing alternatives to help us.

  71. Jeanne at 12:08 am

    over 30 yrs ago — first, pain from shower water hitting my back, then severe fatique and weakness, then pain from doing any kind of physical activity. Then complete weakness to where I could not get up off the floor, where I would drop when I brought kids home from school. Diagnosis of fibro as a secondary condition, caused from stress and would only last a few months. blood work taken from an internist and a diagnosis of Lupus. Another Dr. gave me diagnosis of mixed connective tissue disease. Another diagnosis of arthritis, and rheumatoid arthritis. Drugs almost always don’t work, but prednisone helped with the pain & inflammation — but caused many side effects, diabetes included. However, because my lupus affected my eyes, I can not quit taking the prednisone or I would take a large chance of going blind. Xanax has helped for keeping muscles relaxed, ( after neck surgery for a disk effacing the spinal cord), anxiety over my condition, and help with sleep. 6 weeks in a hospital, started me on Xanax, hormones, antidepressants, pain medication. the only one I could tolerate was the Xanax. I have taken so many medications, paid for them and had to throw them away because of side effects or they just didn’t work. I go to a neuro-physcologist who understands fibro better than some Dr’s from major universities. He helps me deal with life in my condition. I have even more problems than those above. I have recently found a new chiropractor who works on the cervical only. He is a Nucca chiropractor. My pain level is down a point or two at times. I can’t shake hands with my right arm, or do much of anything with it, including writing this ( I will suffer tomorrow) My fibro has been put in a major flare from some bad dental work that has been going on for 4 years. And now, this new health care Obama put in, has given me great problems getting my medications, causing more stress. I have even been to Mayo clinic for fibro classes. the lady teaching them told us, “Your stress has caused your fibromyalgia.” My neuro phsyc has told me ( he worked at Cedars Sinai with top fibro Drs…) Fibromyalgia is stress!!, I did not cause it. I encourage all of you to keep trying new treatments, take time to relax and rest, and if you find a good Dr., stay with that Dr. You who have this horrible disease, suffer more than anyone can understand — take care of YOU! And may God bless you.

  72. LeSondra Pedersen at 11:22 pm

    My name is LeSondra Pedersen and I am 37 years old. I was diagnosed roughly 3 months ago after years of pain and sleepless nights. Doctors would look at me funny when i said i was always tired but could never sleep. I get severe pain in my hips so doctors tested me for hip displasia only for the test to show negative. I get pain in all my jounts so doctors test me for lymes disease only for the tests to come back negative. It took a urologist to finally figure out that i had fibromylgia because as he was doing an exam he noticed that my muscles were constantly having spams. There are days that i cannot get out of bed wihout help. I feel like i have been hit by a train more days than not. Every step i take feels like i am walking on hot nails. My doctor tells me to do 30 minutes of aerobic exercise everyday. That is really hard to do when he hurts to just put your feet on the floor without putting weight on them. I have absolutely no memory. I have to set alarms on my phone to remember anything. I can get up and walk 5 steps and already forget what i was getting up for. I take lyrica twice a day and that is all my doctor has given me. It does not do much for the pain but it does help the constant anxiety. I really wish more doctors would take the time to fully understand fibromylgia and try to help us that suffer with it. I wish there was more information out there about this disorder and what we can do to ease the pain. In just the last year i have had to give up doing many of the things i love to do such as hunting and fishing. I cannot walk far enough to get to a treestand much less pull back a bow to shoot it. Along with the pain we have the depression it brings because doctors do not understand and we have to give up things we love because it hurts to much to do them. I cannot sit through one of my childrens sports events because if i try i will suffer for days afterwards. Depending on the severity of the disorder some people cannot hold a job, yet have to fight for years for disability because doctors do not understand the severity of pain we are in. If we find a med that helps we have to deal with the severe side effects of the meds. Like lyrica, until i started taking it i could at least remember what i got up for. It is very depressing and nerve wracking to have to depend on my 14 year old daughter to help me walk everywhere i need to go. She helps me walk through stores, school, to and from the bathroom at home. This is unfair to her and makes me feel like a pretty pathetic mother. I am suppose to be there for her not me depending on her. She should not have to feel guilty about hanging with her friends but she does because she is always worried about me. I am really glad someone is finally looking into this and hopefully finding something that will help us. If we had a disorder that they could actually see they would have already been testing alternatives to help us.

  73. laura holder at 11:10 pm

    I have fibromyalgia and all I can say is it is like living in hell everyday, even with meds. I take the highest dose of lyrica you can take along with a list of 10 other meds I have everyday. on top of the walking pharmacy and the attitude people give you because you cant find relief from your pain they think you are lzy and a druggy just wanting pain meds. well I have constant pain that I have learned to live with because it is always there. my vision comes and goes, my memory of simple words or even how to spell has drastically declined. I forget what im saying and what im doing. my feet feel like im walking on pins and needles. I have tingling and numbness in my hands,feet, legs, arms, face, lips , sholders and back. I have back pain so bad that I am in bed sometimes for days. sometimes even the wind blowing on my skin feels like needles sticking me. I have miagranes that last up to 18 days at a time. I have chest pains that feel like heart attck. I swell in my legs,feet, hands, fingers and stomache. sometimes I can walk fine and other days my legs just give out on me. they hurt so bad I cant walk on them. my legs turn purple and blue. I have what feels like Charlie horse in my toes, feet , legs, hips, and hands. oh and the depression is bad too. my sleep is horrible. I stay up all night and day even though my body is tired. I can go 48 hours sometimes with no sleep. I have what feels like my heart is racing and shortness of breath. get tire easily. I hurt to sit , I hurt to stand so I constantly trying to move to get comfortable but never can. so if you can come up with something different than 10 prescriptions , a tens unit and heating pad to make this better it would be wonderful. I hate taking all the different meds to try to fix everything that hurts or is acting up. I just want my normal life back.

  74. Ann Dunham at 11:06 pm

    I was diagnosed with Fibromyalgia last year and also have back problems which I am receiving SSI for.
    I have had days of staying in bed to soar to get up barely able to walk to the bathroom. The muscles in my shoulders, arms, middle back, lower back, buttocks, and legs. Not to mention the cramping in my feet and toes. They cramp up and just ache and hurt I got tired of steroids in my back and now my doctor has put them in my knees. It just doesn’t work. I am on Norcos, Celexa, Busperine, Lyrica 200(red). and different anti -inflamatories. Too many changes to keep track. They help for a little bit and then my body adapts and they don’t work any more. I actually started getting migraines, I have never had one before they are horrible. I have had to keep all the lights down on my computers and smartphones. Florescent lights are the worse. I am depressed at times and pray that I will be able to enjoy the thoughts of future.

  75. JENNIFER GARCIA at 11:01 pm

    I have suffered for years undiagnosed. I was diaginosed 3 years ago. The intense pain, spasms, head aches, sleepless nights have made my life a living hell. The meds I take male life a little more bareble . hydrocodone 5/3251 every 6 hours as needed for pain( is not enough) cyclobenzaprine 10 mg 1 tab 3 times daily as needed for spasms.Ibuprofen 800 mg1 3 times a day as needed voltern gel daily . Some one needs to find a drug that gives us some relief. Not being able to function on a daily basis is no way to live, especially when you have kids or a job or A LIFE. We need help.

  76. Jacki at 10:45 pm

    I was diagnosed around 2 1/2 years ago now, before that, I had a Dr. that diagnosed me with chronic pain, she did all the arthritis testing, and said that it’s a process of elimination, and she had done all she could do for me and my pain, then telling me I had to live with it.
    At that point, I decided to get a new Dr, because I felt my old Dr. wasn’t listening, later I found she really wasn’t listening and really didn’t care.
    My new Dr. did all the testing, and told me that I have FM. I have probably had it for about 15 years actually, maybe longer. I have progressed over the years, I can only work part time, and of late, that part time, has been less and less.
    I FULLY believe that FM is progressive DISEASE, and that not enough is being done to help us survivors of hell. I use to take care of all 4 of my children, and keep my house clean. I am still taking care of my last child at the age of 15, but she takes more care of me than I her.
    I can’t do dishes, bend, stand too long, my legs give out and I fall. I have bursitis and tendonitis in my right shoulder now, my back is a non stop pain, there are many days when I can’t even get a hug if I need one because my skin hurts so much. My house has come to be in more and more disarray from lack of being able to get up and clean.
    I love to walk, yet, can’t even walk 20 minutes, meaning I can’t go grocery shopping, or every day things. I have lost my life and all that I love about it. I am stripped of a social life, even that with my family, I can’t go to family engagements, events, nothing, because it might happen that if I have to stand or sit for too long a time I will fall or have other issues that will happen.
    The medications that I take do not cover enough of my pain, and the legal ramifications that Dr.s are limited to with prescribing narcotic pain medications to patients with my condition prevent them from even being able to prescribe them to me at all. I have to take a non-narcotic pain med and Cymbalta, 120mg a day just to take away part of the pain.
    I also have P.T.S.D. and panic/anxiety attacks as well as agoraphobia, which is a fear of leaving the house. I use to cook every single day every day and loved every minute of it, that is gone now.
    I feel there has not been enough research into this disease, nor enough study into how to control the pain that we all live with. I feel our lives have been stolen from us all, and we by all means do not deserve this to be happening to us at all. Tears at one point or another in every day, I have tissue all over my house, just because I know I am going to need it at one point in time or another.
    Fibromyalgia has stolen my life.

  77. Marcia McGuiness at 10:43 pm

    After being told I had a psychosomatic condition for several years, I was finally diagnosed with Fibromyalgia at age 49. It took me a year to come to grips with the fact that I could no longer work a ‘real’ job. I was once a brilliant Engineer, an active and fit dance teacher, a meticulous housekeeper, and an excellent cook. I am no longer able to do any of these things I love. I have days/weeks at a time where I cannot even function, and my cognitive abilities have declined to the point it’s hard for me to focus on much of anything. Living in pain 24/7/365 for the past 13 years has paid it’s toll on my marriage, my children and grandchildren, not to mention my state of mind with the depression that comes along with FMS. If I complain about how much I hurt, everyone gets tired of listening, and if I stop complaining they forget I am in agony since my disease doesn’t show. There is no medication or treatment I haven’t already tried to no avail. They simply do not help. Sometimes I feel that if this is the way I have to spend the rest of my life, there isn’t much point in being alive. I can only pray for strength and courage, and hope that someday soon this debilitating disease can be treated effectively… before I am too old to enjoy my life again.

  78. kathy milligan at 9:51 pm

    I have had fibro for around 28 yrs. it took them many yrs to get to that diagnois, i was given all kinds of single diagnois’s such as ibs and chronic migraines ect… some meds help temporarily but end up causeing side effects that you dont want any more than the fibro. The pain and fatigue are the worst but the brain fog ranks rigjt up there too. i hate mot being able to remember thomgs. Most of the meds ive tried made me gain weight which makes the problem worse, more stress on the joints, cant get comfortable to sleep–if you can sleep. my friends make fun of me by saying i havent slept in 30 yrs. But i really havent all that much. We need better nerve research to find out what causes this and how to manage it. Id like to know for sure if it is inherited so my kids and grandkids will know what symptoms to watch for. My mother had some of yhe symptoms but was not diagnoised she had mitral valve prolapse as well as aortic prolapse so tjey just thought her symptoms were due to that. I connected the dots.

  79. Dawn at 9:43 pm

    I was recently diagnosed with fibro this year after an allergic reaction to an antibiotic that I was given for a sinus infection. It has changed my life, I have gone from working ten hour days, and having rental property’s, being an active fifty year old. To not being able to walk across a room without help, I need help showering, I can’t drive most days, this happened in mid march 2013. I have driven probably six times on good days that are not good, three of those trips were dr appointments. I quit all perscripts. The prednisone caused me to gain 60 pounds in four months. That drug should be outlawed. I won’t take anything because of the reactions I have had to the other drugs. I do take OTC Benadryl for the hives I have suddenly developed, I take Bayer aspirin for the arthritic pain! because I also now have poly arthritis along with the fibro all from the antibiotic reaction. I have applied for disability, maybe someone can help me with personal care, housework, shopping , cooking. This is so not fair, thank God for touch screen computers, because my hands are worthless, they don’t bend, and the weather has me in a knot. Anyone want to trade life’s with me for say 10 minutes. FIND. A CURE, not a treatment. A CURE!!!!!

  80. Sonia Lopez at 9:23 pm

    I have been suffering from fibro since 2010. Thats when i really started feeling the deep pain tissue. Other than that i had back problems. Since then, I am now taking a total of 8 different meds. I am also receiving steroid injections to my back that so far do not help. The bad days consist of at least 4 different body parts/ areas that hurt. I cant sleep (i fall asleep around 3Am and up by 6am then asleep all day) to catch up. The good days is when i can clean abit around the house (then i overdid it, so next day is bad day) The meds im taking right now do very little. My rhuematogist is still taking tests to check for something else. Im always tired, sore, in pain, i noticed i now have some sensitivities to loud noise, flashing lights, just a day ago it felt like i had a seizure of some sort. it felt terrible. When its a good day, then im out in the streets running errands, if its bad, i stay home in bed. I have been in bed for the past 3 days….. i really hope this helps any!

  81. Tammy Jackson at 9:12 pm

    I was diagnosed with Fibromyaglia in 07 and my life has never been the same.. I live in constant pain I have been on pain meds, Savella, and Lyrica, with no relief.. Lyrica caused me more problems than anything else, feet swelling.. I now have RA on top of this, so now my life is even worse.. I no longer know what it is like to live a normal life.. My biggest wish is to be able to do some of the things that I used to enjoy doing but my biggest wish is to get this under control so I am able to play with my 1 year old grandson..
    I used to love gardening , canning, horseback riding , riding motorcycles. hiking and walking. I am no longer able to do these things, much less work. I haven’t been able to work in almost two years now.. and the sad thing is I have been turned down on disablility.. and SSI. and now having to appeal the system for it.. I know people that are getting disability and there is nothing wrong with them other than plain laziness and there are so many people out there like me who need it and cant get it.. I would like to know why? why is this system so unfair to the people who really are disabled and cant get help, but you have lazy people who are able to work but wont and fake conditions just to get disability… My life has changed so much and I have faced the fact that it will never be normal again…

  82. Kelly at 8:40 pm

    I have fibromyalgia. My pain level is at least a 7 every day. I wish I could rip my spine from my body it hurts that bad. I wake up at least once every night even if I can’t fall asleep until 4 am I will wake up at 6. I never feel rested. I have crawled to the bathroom because my legs and feet hurt so bad I can’t stand up. There are days I can’t lift my hands over my head, I drop things at random because I have no control over my hands. I have tremors so bad I wear half my food and drinks. Fibromyalgia is REAL. ….real painful, real annoying and real inconvenient. It controls my life because I can’t control it.

  83. John Quintner at 8:13 pm

    @ Pat. What a complete waste of time and money! The information being sought in 4 hours is readily available on any number of websites, including this one. The estimated 5 million US sufferers might well feel they have been short-changed by a pharmaceutical industry that has promised so much but delivered so little. Twenty-five years of medical research has shed so little light on the condition that pouring money into “more of the same” projects is unlikely to produce positive outcomes for patients.

  84. chasity henderson at 8:11 pm

    I have had Fibro for many years and it has changed my life in so many ways. The biggest factor is the chronic, wide spread unpredictable pain I experience daily. I have issues with my eyes, memory( and other cognitive issues), sometimes i have limbs that don’t work properly, the tiredness never really leaves, i can’t sit too long, stand too long, lift too much, do repetitive motion for long, sometimes i just feel very flu like. Sadly the biggest issue i have faced is not getting the help i have needed. I had a disability case several years ago, after 6 years of appeals and so so so many doctor visits, I let it go. Every judge I had was so mean and uncompassionate. I was told I was “too young to be sick”, “looked well fed”, “shouldn’t have had a child” (even though my body went nuts after i had him not before), although i struggled to maintain my own kitchen i “should find a job in a kitchen” so i could “be away from people”, cause clearly people cause my illness. smh. I was so tired of all the shame forced on me for an illness I wouldn’t wish on anyone. I hope that people are being treated fairly and listened to since i never was. I do not medicate other than avoiding certain activities, ibprophen and tylenol. I have learned many tricks and to listen to my body. Fibro sucks plain and simple. No one is exactly alike in symptoms either.

  85. Brenda DesPlanques at 7:54 pm

    Hi. I have fibromyalgia. I am in pain everyday. Somedays are worse then others. I don’t take pain meds because they don’t seem to help me any and plus i have to stay awake because i have to take care of my disabled son. I am so glad someone is looking into this disease.Thanks

  86. Jennifer at 6:55 pm

    I’ve suffered from fibromyalgia for a few years now
    I’m currently taking Lyrica 75mg which seems to not
    Even help with my pain when I’m in a flare!
    Having FIBRO causes me to ache all over it
    Seems as the pain is inside my bones stabbing
    Shooting burning pain I often have headaches
    Blurry vision and my memory is really not good @times
    Sleep is never my body stays tired! Please help
    Find and or get research for Fibroymila and another sad
    Thing you loose out on family & friends because
    People don’t believe it it! Even some Dr’s but honesty
    I would not wish this upond anyone it sucks
    Having FIBRO

  87. Christine Williquette at 6:30 pm

    I have suffered with fibromyalgia for almost 15 years but wasn’t DIAGNOSED by a Dr. Until about a year or so ago. This disease almost destoyed my marraige as being intimate was not really an option. I am in constant pain, sensitivity to my skin makes sitting very painful. I have no real social life as I am never sure how I will be feeling.all the things I used to enjoy are no longer a real option for me. Gardening, long walks, traveling, anything that involves sitting for more than an hour without being able to move about. I am a prisoner of this evil disease and it is sucking the life out of me.