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

  Subscribe  
newest oldest
Notify of
Michele Young

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??

Debra Williams

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.

Andrea Frost

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

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

Lorri Speiran

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… Read more »

Lorri Speiran

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… Read more »

Adrianne

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.

Liinda Wilsom

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.

DeAnna Crabtree

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…..

DeAnna Crabtree

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… Read more »

Nancy Urban

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.

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.

Pam Sweeton

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… Read more »

Amanda Matos

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!

Marty Collacchi

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

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!!

Becki Hess

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!!

Danielle

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!!??

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

Jeanne

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.

Franchesca Callaway

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.

shelley ramsey

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.

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

Mitzi Arredondo

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.

Kelly Huber

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

K Fuller

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.

Mary Adams

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.

Kathy Carris

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… Read more »

Tia van Etten

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… Read more »

Debra Van Ness RN

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… Read more »

Jill Dredge

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.

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… Read more »

Sherry Drenning

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.

Vickie in Alaska

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… Read more »

Deb Etter

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!

Vickie in Alaska

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.

Jenny Phipps

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!

Caitlin Jameson

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!!!!

Anne morales

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.

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

PLEASE RESEARCH EPIDURAL STEROID INJECTIONS!!

Alison

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.

Sheri New

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!

Margaret deVries

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

Jen

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.

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.

Kimberly Miller

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.

Sarah Kramer

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

teresa smith

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… Read more »

Kim Williams

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… Read more »

Evelyn Buckley

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.