Women in Pain: Tell Us Your Stories!

Women in Pain: Tell Us Your Stories!

When we first conceived the idea of launching a news website devoted to chronic pain, we had a pretty clear goal — to be a clearinghouse of information focused on pain management and patient empowerment.

At National Pain Report, we were counseled by physicians and others who work with pain patients that there is one large group to which we need to pay special attention: women.

And we have been doing just that.

bigstock-young-woman-shouting-with-a-me-33045809In addition to talking with experts about this topic, we’d like to go one better. We’d like to hear and publish more first person stories from women in chronic pain.

Do you have a story to tell?

Before you ask “Who would listen to me?” consider this from one of our experts who studies the issue:

“Women suffer from chronic pain more than men, it strikes women more severely, the episodes of pain are longer and of greater frequency,” said Beth Darnall, PhD,  Associate Professor of Pain Medicine at Stanford University School of Medicine.

There are millions of individual stories that are worth sharing so that others in pain can learn, be inspired or both.

So what may seem like a pedestrian story to you because you are just “dealing with it” may be an inspirational one to patients who can identify and learn from your experience.

A recent column by Carol Levy reminded us of the power that chronic pain can have over one’s life.  Her battle with trigeminal neuralgia, a chronic facial pain disorder, is a moving one and reminds us that chronic pain is about daily self care and endurance.

A recent story on Cynthia Toussaint and her 30 year battle with Complex Regional Pain Syndrome was widely circulated, another example of the importance of telling the patient story.

And we reported on a study released this month which said that the trauma of being sexually abused could lead to the development of chronic pain in women.

As Laurie Edwards of Northeastern University opined recently in the New York Times, “A review published in the Journal of Pain in 2009 found that women faced a substantially greater risk of developing pain conditions. They are twice as likely to have multiple sclerosis, two to three times more likely to develop rheumatoid arthritis and four times more likely to have chronic fatigue syndrome than men. As a whole, autoimmune diseases, which often include debilitating pain, strike women three times more frequently than men.”

We ask that you think about sharing your story or that of a loved one.

Telling your personal story in a public forum like the National Pain Report will be seen by many others coping with the same issues.

And think of all the good it might do.

You can comment below or email us at editor@nationalpainreport.com.

Authored by: Ed Coghlan

There are 17 comments for this article
  1. Julie Golemon at 5:02 pm

    I have Fibromyalgia/C.F.I.D.S./M.E.; osteoporosis of my spine;4 pinched nerves in my lower back;2 ruptured discs;scoliosis;arthritis on many levels in my spine;sciata nerve;bursitis in both my hips and both my shoulders;really bad muscle spasms;my facet nerves are rubbing bone to bone, no cushioning..gone, very painful to walk. My neck has arthritis in the 3rd and 4th vertabra. So that all comes with terrible, agonizing pain on a daily bases. With out meds for pain, I can’t get out of bed to even take care of myself or go to a dr. appt. The short-term opiods don’t work for long-term chronic pain. WE need the longer acting,time released, 10-12 hour pain meds. I do other treatments at home to help with my pain and try to take care of myself but there is just so much that works for very long. I MISS MY LIFE BEFORE PAIN!!!!!!!!!!!

  2. Micki Brown at 2:54 pm

    One more thing that may help some of you…i have found, in my 12 year journey on the pain rollercoaster that MOST pain management Drs. ONLY want to do one thing….injections! Trigger point injections, epidural steroid injections, nerve block injections, etc…ive had SOOOO many injections and it did NOTHING for me but make my pain WORSE! I have found that regular, family medicine, and internal medicine Drs both m.d.s AND D.Os WILL help you with your pain and are alot more willing to do medication manageable than a pain management Dr! I hope this helps some of you that are suffering and looking for a Dr who will help you! God Bless!

  3. Micki Brown at 2:45 pm

    I have been dealing with chronic pain since Oct 31, 2001….one day I just woke up with my back in excruciating pain….after Dr after Dr, tests after tests, they discovered that I had two herniated discs and degenerative disc and joint disease. I was put on painkillers and went thru pt and way too many injections to count but my pain was getting worse and worse and it was affecting my entire body! I was becoming a frequent flyer at the ERs and was shuffled from Dr to Dr. The pain meds were not really working and when they did, it would only last an hour or two. I lived like this for three years until I found Dr.M in Dec of 2004 where she diagnosed me with fibromyalgia and the beginning stage of crps. She put me on oxycontin and it was like a miracle drug! I began to be able to regain some of my life back and while I still had pain, it knocked it down to a manageable level that was acceptable to me. Dr.M after me seeing her for five years retired to go VA to help all the soldiers, I was then again back to square one…it took several Drs before I found one who agreed to take on my case. And manage my pain only to have him two years into my care for him to have a stroke and no longer able to practice medicine! I was then put with Dr.O, his colleague who I have been with since then. I thank God on a daily basis for this man! I know how it is with no medication where every minute feels like an hour and every hour feels like a day, where the pain consumes your every fiber of your being! There are SO many ppl who abuse the meds that we so direly need that to alot of des, oxycontin is a bad word! My pain is so severe without my meds that I have contemplated suicide several times….i was NEVER like that before! I now continually suffer not only from pain but also high anxiety and frequent panic attacks for fear of losing yet another Dr! I pray for each and every one of you who suffer from this evil monster we call pain! I pray that one day a cure is found and that we can finally get back to normal and find the peace that we all so deserve! God bless you ALL my chronic pain friends…keep your chins up and take care! Here’s to a pain free day 🙂

  4. Cheryl Davis at 2:47 pm

    I have had RSD since 1996. It started when I had foot surgery to remove a neuroma. I kept telling my dr’s that the pain was beginning, and the neuroma kept growing back and they kept doing surgery. Each time my pain kept getting worse. The burning, the stabbing pain, etc., all that comes with RSD.

    I had my first SCS in 1998. My battery had to be replaced New Year’s Eve 1999 because the battery malfunctioned. Three monts later I had another SCS implanted. 5 years later I had the battery replaced. In Oct. 2012 I had to have another battery replacement. The next day the right side of the SCS stopped working. My Dr. was trying to figure out the problem and while he was I developed a bad infection and had to have emergency surgery. I had an affection all down my stimulator and it had to be removed.

    However, between the 2010-2011 years, my RSD went full body. I had a job for 20 years and had to quit because the RSD has gotten so bad.

    My short-term memory is gone. The pain is so bad I have to use a walker and am waiting for my wheelchair. Basically all I can do is go to the Dr. appointment I have and then lay in bed and try not to move. I cannot make plans because more than likely I will have to cancel them.

    I have lost all my friends and am alone. People say they understand, but that is just to sympathize. They truly do not understand what it is like to have chronic pain 24/7, every single day of the week.

    The depression is bad. Pain medications no longer work so I have nothing to take for the pain.

    I found it interesting that women who were sexually abused and RSD have a commonality. I was sexually abused by my father from the ages of 6 – 13. At 14 I began drinking and am now in recovery.

    Chronic pain has destroyed my life. My job defined who I was. I gave up on getting my hopes up because it usually leads to disappointment and then more depression.

    I go nights without sleep because of the pain. I am angry all the time because my body has been stolen because of chronic pain. I pray one day a cure will be found for RSD.

  5. Donna Visco at 11:26 am

    I am a 50 year old female that has been suffering for many years…only to find out half heartedly that I have RSD. I have been diagnosed with everything under the sun only to have that diagnosis removed…spent hundreds of thousands of dollars to find out what is wrong…even went to the mayo clinic for two weeks. I saw a foot Dr. Trying to get shoes to fit my feet when he told me what I have. Since researching this, I believe this is exactly what it is. I am not sure exactly what injury caused this, as I have suffered in pain since the age of about 25. It did get drastically worse since my heart surgery in 2000 tho. I was not able to wear shoes for over 2 years due to not only the pain, but couldn’t find one shoe big enough for my foot due to swelling. I tried a pain stimulator trial, but waited for permianent surgery until I got back from the mayo clinic…then was refused by insurance co because I waited. I tried filing for SS, but was denied. My pain meds cost 500 dollars AFTER insurance a month, and that does NOT include other meds I need. After researching this I believe I am in stage 3 . My feet and legs are red, black and blue, the skin is shiney, but is peeling as well due to extreme swelling. The pain affects both hands and wrists, because they told me I had carpel tunnel and operated on both hands. They tore my shoulder during heart surgery, so the pain is in both shoulders. My right leg was the newest. About 8 months ago (and this is how it began in both legs) I felt as if I had a deep bruise in my right leg, just under the knee. I had no knowledge of any injury. The sore spot turned red purple, and the pain wrapped around the right knee, went down right side of leg, wrapped around ankle, then up the inside of foot to big toe. Shortly afterwords the swelling began and has not gone down since. The left leg started about 3 years ago, I woke up to having a lump on my left leg about the size of an olive, about half way down my leg below the knee….directly in front, and it felt brused. In hours the lump grew to the size of hard boiled egg, I then went to ER. In a matter of a few days my foot swelled triple the size or larger. The pain was mostly from the lump site in front, all the way down the top of my foot. I could not move my toes. The swelling lasted more than two years. Both of my hips hurt as well, and it’s difficult to sit, lay or stay in any position for more than a few minutes without adjusting or changing positions. I could not tell you how long it’s been since I have slept more than an hour at a time. I have just recently switched to fentonol patch, and although pain is still way more than I want, this med works much better than the rest I have tried.

  6. Kirby Accardo at 7:02 pm

    I have lived with Complex Regional Pain Syndrome II for 17 years. An Ortho Surgeon clamped my posterior tibal nerve in two places during a heel spur surgery (DO NOT EVER HAVE DONE). I woke immediately from surgery with greater pain then I should have. I was sent to a Pain Management doctor 5 months after surgery and that began my 17 years of spinal shots (2x a week for years), cryo procedures, medications to many to list, 13 attempts at a spinal cord stimulator, a peripheral stimulator that I cant use cause it causes more pain. I had an Intrathecal Pain Pump and had to have it taken out within 7 months because it was shutting down my endocrinology system. I developed a Pulmonary Embolism within 3 days of begin released from the surgery to remove the pump. Spent 2 weeks in the hospital without putting my feet on the floor and 6 months on blood thinners. Drove over 18 hours to see Dr. Gabor Racz at International Pain Clinic in Lubbock, TX. Finally got a spinal stimulator to help in 2007. It however only helps sometimes. Tried 3 inpatient Ketamine treatments with severe hallucinations in 2002. Always reset with no pain meds and no pain but each time it reset within a week and I was back to pain. I now manage pain via meds. It is not a life I would wish for my worst enemy. I also suffer from Degenerative Disk Disease in all disk from T-12 down, I have spinal stenosis between L3-L4 and arthritis in lower back. I cannot stand or walk for very long or for any distance. I cannot bend or lift anything. I have fought insurance for years each time I needed a procedure or medication. We have spent all of our funds and I live on SSDI and Medicare. I am 53 and have missed out on so much of my childrens lives. I wish there were times I could have shared more but I did the best I could. I wish there was more research on neurological issues. I have a wonderful family who support me and help me stay involved. For that I am truly blessed.

  7. Adina Monson at 11:44 am

    I Was born with a congenital foot amputation and over many year of ill fitting orthotic made from hard ridged plastics my foot gave out and pain settled in. At first many doctors thought it was in my mind as a 6 year old my imagination was wanting attention and so not much was done for me. After a doctor suggested a EMDR test (which when horribly wrong) they knew it was more than my mind. But what to call it!!! I was told Inflammation, damaged nerves but never the truth until 7 years later when the pain was to much to handle I was sent to a pain clinic.

    Oh! you have was is called Reflex Sympathetic Dystrophy and by the way your a little to late for recovery but nerve block can ease your suffering (not).

    Anyways, almost 30 years laters, after feeling like a guinea pig to the medical community, lied to and told I was a mental case I have found some hope, not a cure but relief. I have a pain doctor who listens, a family doctor willing to help and a large support team of family and homeopathic doctor at my call. I know I will never be cured but I now have days that are normal to me.

    I am a strong women that live not only with RSD, but TMJ and Ehlers Danlos, I should have a medical degree for I have more initial after my name than any doctor and know more about what is happening to my body then any doctor.

  8. Liz Lindsay at 2:47 am

    I have CRPS and Fibromyalgia. I was injured at a desk job of all places. I got up out of my desk to grab a file & my body went one way my left ankle got caught on the old carpet & went the other. Complete dislocation. I have had numerous reconstructive surgeries, metal put, & taken out. Then a year after the accident when things should simmered down, the pains really started escalating. My ortho. Dr. Figured it was RSD (now CRPS). I was sent to a pain management Dr. & it was confirmed. So then all the treatments were started. Lumbar blocks, site injections, patches, & pain pills like crazy. Then the talk turned to a spinal cord stimulator. Workman’s Comp. made me wait for a good 6-8 months to approve this. I got it done, it worked then, but 3 years into it, it stopped working. Meanwhile I had tried to go back to work, it was difficult since I never knew if it would be a good day or bad. Plus my employers & Workman’s Comp. were starting to fight me on everything. So I retained an awesome attourney. Soon after the company let me go. Eventually though my case came to a head & I won it. But… I had to fight everyday and it felt like I had to “prove” thaot I was actually disabled to these people. I even had to tell one of their Dr’s that I know this is not all in my head because I already take an antidepressant for that. My hope for everyone who reads this. 1st – it’s not all in your head, chronic pain is legitimate. 2nd – ask to see a pain management Dr. they make a world of difference. 3rd – If you feel depressed during your illness talk with someone, it is not a weakness to admit you need help. 4th – if you are like me & fighting Workman’s Comp. Don’t give up & think of seeking out an attourney if you’re not getting your treatments. & last – be happy God does not give you more than you can handle – be good to yourself. With hope & love Liz

  9. Mandy at 10:54 pm

    Having RSD/CRPS for 12+ years since I was a small child, it’s comforting to see how many other people understand what living with chronic pain is like.

  10. Kelly Sipes Re: My Annie at 9:34 pm

    As a mom and a 20+year RN, with a 15 yo daughter that has had CRPS for over 2 years now I have a completely different outlook on chronic pain. My daughter was very active in competitive cheer, traveling all over California performing and the next day was in such agony she could not walk. The MD’s are not sure what brought on her CRPS but she has been through so many different treatments, injections, medications 15+ hospitalizations without success. It was not until we found the Pain Management Team at Lucile Packard Childrens’ Hospital to finally find the combination of therapies and medication to help decrease her pain to a somewhat functional level. She continues to have severe flair ups but with the awesome support and treatment regimen she is able to return to school, wear shoes, smile and enjoy life. As a matter of fact, she is being admitted again in 3 days for additional Ketamine infusions and intensive therapy. She was able to go 8 weeks with tolerable pain! Its a record. This is her She is not letting the pain define her. It is so very important that you keep active, keep moving regardless of the pain. Annie often cries in agony as we rub her legs, move her ankles, put shoes on her feet, but the repetition and consistency is the key. It is also very important to have the psychological support, to allow you to grieve. You have lost the life you once had and now have to deal with a new “normal”. Keep busy, stay involved in school, church or support groups. Talk to people. Use the internet to find resources. What works for one may not work for the other, as we found out. Do not let this ruin your life!!! Your brain is such a powerful beast……keep fighting.
    If you would like to talk leave a comment with your email or cell number and I will be notified. Don’t loose faith!!! GOOD LUCK!!

  11. Melissa at 6:44 pm

    I cannot be more happy that this article was written. Being a 31 year old woman and living with Complex Regional Pain Syndrome, my life was very normal before my diagnosis 8 years ago. I was in college and working full time. Before my CRPS diagnosis I had a few surgeries to remove rare vascular tumors that erode my bone (all in my foot). I was fine after a few surgeries, healed, recovered and was still able to walk. I kept going back to my Orthopedic Surgeon because I was in absolute agony. This pain was different from the normal “bone” pain I would have. I was sent for a lot of testing and then to a Neurologist who then diagnosed me with Complex Regional Pain Syndrome. Nobody in my family even knew what it was all those years ago. I have tried everything from patches, to creams to heavy narcotics, to injections, you name it I have tried it and all under my doctors care. And sadly, there is nothing that helps or cures this dreadful disease. Complex Regional Pain Syndrome happened to me because of the trauma of all the surgeries I’ve had on my foot. As I have come to talk to people just about my CRPS, the number of girls and women I have talked to is astronomical in comparison to men. In closing, I want to say that I wish and I push myself beyond my limits to try to be normal as possible. My life, this pain, has completely changed my life. But had I not ended up with this I’d never be who I am and I’d never know who I truly am. Pain has made me learn about myself and others. And I want all those suffering with pain to know even though you feel so very alone, you aren’t. I am right here dealing with this 24 hours a day 7 days a week. And I thank my doctors, my close family (and of course my pets) and God, for helping me get through those very dark days.

  12. Lisa Eichelser at 5:54 pm

    I am a chronic pain patient of 5 years, suffering from a Pancoast Tumor as the result of Non small cell Lung Cancer. A Pancoast tumor is somewhere in the 3% range of all diagnosed Lung Cancers and had invaded the upper right lobe of my lung and right upper posterior ribs. Thankfully the tumor was able to be surgically resected via thoracic surgery, a right upper lobectomy and resection of the involved right upper posterior ribs without reconstruction. The surgical approach was thoracotomy with a hemi clamshell incision. My sternum was wired together with titanium and I am left with an incredibly painful incision on top of my chest, around and under the right breast, up my right side, ending just below my right armpit. My heart goes out to all people suffering and living with chronic pain syndromes. My pain began as an auto immune response to the cancer, manifesting in my hands with color change, cold sensitivity, erupting ulcers and painful spasms that radiated up the right arm into the shoulder blade. Thank God after extensive chemotherapy, radiation, and. surgery, the cancer is gone, but the pain continues as the new norm to daily life after cancer.

  13. Megan Byrne at 5:39 pm

    I am 36. I have a mental illness and have to take numerous meds for symptom management. These medicines led to obesity, type II diabetes, which led to neuropathy. It started in my toes, numbness that moved up the tops and bottoms of my feet all the way to the middle of my leg. At first I did not mind it, as it was simply numbness. Then the acidic burning started, and pain shooting up my legs. I used to be thin, with beautiful hair, active, and self-employed. Now I am fat, losing my hair, always in pain, have lost my company, am on Social Security Disability Income (SSDI) and Social Supplemental Income (SSI). I am on Medicaid and have Medicare. These are my life savers. I can no longer walk without a cane, and that’s only ten or twenty feet. The rest of the time I am in a wheelchair. I live in public housing and my life is ruined. Sometimes I get suicidal, and because of that will start psychotherapy with a psychologist who specializes in pain patients. I am on two different opiates, both large doses, anti-seizure and nerve medication, in addition to my psych meds. My blood sugar is always elevated due to the psych meds, my GP says, and she is sympathetic. So because of my psych meds my blood sugar severs more nerves and the neuropathy becomes worse. My father will outlive me. I feel like I’m thirty years older, and I look at least ten years older. This is only part of my story. I have lost everything, all because of chronic pain and mental illness.

  14. Mallery N. at 12:44 pm

    I have an autoimmune disease, I have not been completely diagnosed yet. I have constant pain in all of my joints as well as chronic fatigue. I’ll be graduating college in 2 weeks. I want people with neurological pain to know that while it may slow you down, it doesn’t have to stop you from achieving your dreams.

  15. Anna at 10:19 am

    As I 16 year old young woman with CRPS- I totally identify with being completely brushed off by everyone!

  16. Julie C at 9:57 am

    I have been in pain for about 4 years now after a crush injury at a concert. There is tenderness at the original spots of the initial injury on my ribcage in addition to back and shoulder pain and mild PTSD.

    I have seen numerous doctors and had numerous test, but I still have not been diagnosed for the cause of my chronic pain. Doctors have not believed me in the past and dismissed me as a person looking for attention, but I finally managed to find a primary care doctor who is willing to try every approach.

    I was depressed for a while during this ordeal, but I’ve accepted the fact that I’ll most likely have this pain for the rest of my life and I’m taking comfort in my loved ones’ support for me. I refuse to let this pain take control of my life and take away my goals.

  17. Cheryl Theurer at 9:53 pm

    I think it is helpful to know what others go threw. I have post herpetic neurolgia from shingles above my eye. At first they treated me for a bug bite. It wasent till I read a newspaper article about. A person who had shingles and at first it felt like a bug crawling on their head. Then a bite looking place on a nerve. Several people had the same experience.

    I have had to change neurologists several times. I don’t think they believe me. I found one I did like and he quit his practice.

    I have lost eyesight in my right eye. And have this chronic pain. All from a shingles attack.

    This is a small part of my story.