FDA Hears From Fibromyalgia Patients

Dozens of fibromyalgia sufferers -– some of them in tears -– told a Food and Drug Administration panel today that many of the drugs and treatments they take for the disorder don’t work, leaving them fatigued, depressed and in chronic pain.

The FDA’s public hearing in Silver Springs, Maryland was held to get input from patients about the impact of fibromyalgia on their daily lives and the currently available therapies to treat the condition.

fda-logo4“I’ve experienced more types of pain that I’ve ever known a body can create, I have pain 24/7,” said Lori Galpeer, who has suffered from fibromyalgia for 18 years. She said her pain is so bad at times she “wants to rip my skin off.”

“My worst fear is that I’ll have to live the rest of my life this way,” Galpeer told the panel. “On my bad days, if the world fell apart, I would not care. Sometimes I’m too tired to even take a nighttime shower.

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by chronic deep tissue pain, fatigue, headaches, depression, anxiety, and lack of sleep. There is no known cure and the disorder is difficult to treat.

The FDA has approved only three prescription drugs – Lyrica, Cymbalta and Savella – to treat fibromyalgia. But many patients who’ve tried them say the medications don’t work or cause intolerable side effects.

“Lyrica made me sleepy, stupid and angry,” said Sue. “Cymbalta after six days gave me reduced vision.”

“Savella was wonderful for the pain, but after a year of soldiering through it, I felt like Groundhog Day in the first trimester of pregnancy. I had morning sickness every day. It was like a year of continuing morning sickness.

“I’m on Cymbalta and that helps and gives me energy,” said Gwenn Herman, who has suffered from fibromyalgia for 19 years.

“I have gained a lot of weight. Some of the medicines put weight on me unbelievably. And then I have to decide what the pros and cons are.”

Herman, like many other fibromyalgia sufferers, also uses non-conventional therapies such as Chinese medicine, acupuncture, heating pads, lotions and even crossword puzzles – to treat her “brain fog”.

“The downside is my current treatment regimen does not make the pain go away,” said Herman. “I have pain 24 hours a day and I’m still looking for something to give me a better quality of life.”

Nancy Ryan said she’s tried so many different therapies she felt like a “human guinea pig”.

“I found the FDA approved drugs Lyrica and Cymbalta cause more problems and didn’t alleviate the pain,” said Ryan. “Lyrica addressed sleep, but it did this too well. I felt like a walking zombie and wanted to sleep all the time and had no motivation. It did not address my pain at all.”

Ryan said it would be “a tall order” for any drug to address the multiple symptoms caused by fibromyalgia and the different ways it effects patients.

“There is no plain vanilla fibromyalgia patient. We are a Baskin and Robbins array of varied symptoms and presentations. To expect there to be one medication that will address all of the symptoms of this diverse population is naïve,” said Ryan.

“Fibromyalgia researchers do not appear to have generated scientifically acceptable and testable hypothesis of causation. Until efforts are directed to this very important matter, fibromyalgia research will continue to remain in a state of limbo and treatment will continue to be hit or miss.”

FDA officials acknowledged that many of the current drug therapies for fibromyalgia are ineffective.

“We recognize that those have limited utility and don’t work for all patients. And so we want to hear about that as well, which drugs are working for you and which are not, and what ways they are working or not working. Some drugs work fairly well generally for people with a particular disorder and others only work for small subpopulations,” said Bob Rappaport, MD, Director of the FDA’s Division of Anesthesia, Analgesia, and Addiction Products.

Fibromyalgia patients can still submit statements to the FDA until May 26, 2014. To submit your comments, go to: http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004.

Fibromyalgia sufferers are also invited to participate in an online survey asking patients about the quality of their treatment and whether the drugs they’ve taken are effective. The survey is being conducted by the National Pain Foundation. The results will be available on the National Pain Report in mid-April.

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37 Responses

  1. Tamara Wiley says:

    Well said Larry

  2. LarryK says:

    Tamara:
    I completely agree. Weight is not the issue. Before the pain kicked in (and even for a bit after while the pain was ramping up) I was VERY active. Mountain biking 4 to 5 days a week, with each session being at least 8 miles. I did hiking, I snowboarded in the winter and my job was pretty physical. I also worked out at the gym with friends. We would work out for 45 mins, spar for another 15 and that was all followed up by 2 to 3 racquetball games.

    Even with the pain, I still keep somewhat active. I have a variety of hobbies that I do. Each with varying difficulties, so that I can tailor my activity level to my pain and fatigue.

    During my youth, I was very active as well. I could run a mile in under 5 mins, consistently. I had 3 acres of land I mowed and worked on (building fences, taking down fences and buildings and a lot of farm work.) My weight was 155 @ 6’2″ before going in the military. My weight after basic was 175. After getting to my base, I maintained 195. That was until a little after the pain started. I still stay around 220. That is not overweight at 6’2″.

    They need to stop trying and blame the sufferers for their inability to find a cause. It’s not in our heads (psychosomatic.) It’s not issues with weight. It’s not inactivity. It’s not diet. When the medical community stops making any of those claims, then we can finally make some real progress.

  3. Tamara says:

    There is not one answer. I personally eat an all organic diet. I eat grass-fed and hormone free meat. I drink milk and water. I know where the milk comes from which is grass-fed, hormone free cows. I do every healthy thing possible. I lifted weights and ran 5 miles a day prior to this illness. At my lowest weight, I was in the most pain I have ever been in. So, you can get over the statements of “it’s because of the weight.” That is complete bull. The meds are the reason for the weight. How do we know this? Simple, we go off the meds and lose the weight without changing anything else in our lives. I firmly believe depot lupron is the culprit for me. I have endometriosis and went through a series of these shots. During these shots is when I started having symptoms. There is even a lawsuit against the company who makes depot lupron because there are thousands of women with the same complaints I have after going through depot lupron treatments. So, before you assume you know anything about me, my diet, and lifestyle why don’t you ask. Ignorant comments do not help people like me. I not only have to deal with the challenges of my illness, but also the chronic stupidity of others. Which is not easy task by the way. Since you do not know what you are talking about just zip it.

  4. Susie H says:

    LarryK: I have some weird issues in my past and ongoing that were never explained to me fully. Let me just say that I do not have an exact diagnosis. They have narrowed my symptoms down to RA or FM. But we do not have insurance yet so I cannot afford to go to the specialist. I have seen every other specialist though. I used to faint for no reason. My mother never took me to the doctor over it. I broke out in hives every day for about a year when I was about 12. The doctor said it was nerves. I did get a diagnosis of low blood sugar when I was pregnant at 22 but I managed it though diet. I have to take thyroid medication and another medicine to keep swelling down. This started at about 30. I have been menopausal since about 35 (the doctor said this was not the problem since I was so young) There are a host of other things going on which I won’t discuss here. Bottom line is I feel my doctor thinks I am just a hypochondriac. I think he humors me. My husband sees where things are different with me and we both have said the same thing..that my body is just different. I have opposite reactions to medications. I personally think that it could all be linked to my thyroid. They just don’t know enough about it. Thank God my family is supportive. Best wishes to you and thank you for your input.

  5. from my own FB page: ALL the more reason to drink seltzer with lemon, lime or orange, cherries etc! I have only ONCE my life ACCIDENTALLY ingested diet soda, the RESULTING INSTANTLY INTENSE 3 DAY HEADACHE, initially blamed on high altitudes of travel, was then discovered to be the fault of “DIET GINGERALE!”

    DO you drink this crap and have headaches, migraines, etc?!

    Know what you put into your body!
    Rerad this article

    http://www.nbcnews.com/health/diet-fitness/diet-drinks-linked-heart-disease-death-n66476

    Diet Drinks Linked With Heart Disease, Death – NBC Newswww.nbcnews.comWomen who drink the most diet sodas may also be more likely to develop heart disease and even to die, according to a new study published Saturday.Researchers…
    and I do NOT doubt that those diagnsoed with “Fibromyaglia” who’ve had an MRI withcontraast, whether once or more than once is actually sufferign from FIBROSIS, a sGadolinium contrast is toxic heavy metal and is NOT chelating from the bodies of patients! NIEO Nothing In Everything Out in order to diagnose a patient with health issues!

  6. LarryK says:

    Susie H:

    I have almost zero (if not absolute zero) of aspertine in my diet. I use only pure sugar, and I drink almost exclusively water or tea (decaf green tea, home made.) If I drink a soda, it is maybe 1 pint every 3 months. Most times its less. I’ve been this way since at least 2001. My fibro pain didn’t start until early 2006.

    What I am curious on, is if pain may be one of the last set of symptoms to manifest. When I sit and think about it, I’ve had fatigue for some time. Since likely 2004. Memory started to go downhill around that time as well. Hotter than normal also started before the pain. I used to be able to go barefoot in snow and wear shorts in snow. I used to get hot flashes as well (I’m a 35 y/o male, so no reason for that to happen.) At work, I used to have 2 BDU tops with me. I’d freeze one, and wear the other. Then swap out. I’d do that all day. My coworkers thought it weird. There are a number of other odd symptoms that I thought nothing about, but started before the actual pain kicked in. There have been a few other things to pop up after the pain. Until this meeting, there were things I thought just oddities. I chalked it up to, “well, my body runs a bit different.” I’m not so sure that is the case anymore. I’d be interested to see if others with fibro have some of the same experiences.

  7. Susie H says:

    Has anyone checked into the possibility of aspartame poisoning? I have read a lot on the subject and the symptoms seem to fit what we are all going through. I have been a diet coke addict for years. I am trying to quit drinking it and hoping these symptoms will ease. Curious to know if any of you have any experience with this. Thanks!

  8. michele fournier says:

    I have had diagnosed FM since 2004. I have been on many medication but have had the best success with lyrics, cymbalta and transadone for sleep .

  9. Pixie says:

    I consider myself to be a fairly normal, intelligent middle aged woman. For the past eight years, I have lost that person and have become someone who lives in chronic and constant pain. Dear darling Cymbalta gave me the jitters and 30 extra pounds. Now I take Tramadol every once in awhile for pain, but it really doesn’t help much. I take Trazodone at night to sleep and that does help, once I can get past my aching and restless and cramping legs. I can’t mix the Tramadol and Trazodone together as it makes me very nauseous. As others have mentioned, just standing and taking a shower is a difficult task. I work 24 hours a week at a mostly desk job, but still I am just exhausted every day and sleep half the day away on my days off. I could really use the money from a full time job, but there is no way in the world I could make a 40 hour work week feeling like this. I feel foggy and tired, depressed and hopeless. I hurt. I could cry for the me I used to be. I have lost her, she is on the shelf somewhere and I cannot find her. I don’t tell many people what is going on with me because I know they think this is some “made up” ailment or that I am just depressed or lazy. My husband is very supportive and for that I am thankful and grateful. I wish every day for some breakthrough. I miss me.

  10. dave says:

    Shannon- I’m sorry for what you’ve been through to obtain some decent care. We need to work together if we want the powers that be in the health care industry to hear us and respond in a humane way to us. That is why i wrote the American Pain Rights Act- a petition to change pain care and give people in pain a real voice in pain care. Please when you are up to it look at it and you can sign on to it fairly quickly-and “painlessly”. http://www.petitiononline.com/painra/petition.html

  11. ShannonT says:

    this problem isnt just fda, its drs insurance companies, research, everything. for the past 12 years my life has been drs. hospitals, blood work, cts, mris,xrays, nerve tests and medication after medications. and i was constantly told it was in my head, im depressed, etc. i used to work 12 hour graveyard shifts as ab emergency animal technician, then i had 2 boys to take care of a house, i was a soccor coach for both their teams, i loved being active. im not lazy, not depressed, not a drug addict, etc. yet im constantly labeled as them. now i am nothing but a useless life in bed 80%+ of my life. my pain, numbness, spasms, nausea, etc has taken over. i lost my job, its hard to care for anything let alone myself. my house, kids, animals, family, friends, career, LIFE has suffered. its not even just pain…. swelling, migraines, loss of hand control, and now i can barley walk, shower, change my clothes. my legs are weak, i get dizzy, and my feet are so numb and stinging they just dont work anymore. and yet no dr. will help. nuero, ortho, general, and on and on. ive been on everything at one point i was taking 9 different meds everyday. the only thing that helped a little was norco or oxy/acet. but i dont get that relief because of rules or judgement. i dont drink, i dont over do, and they have control!!!! the amount, doses, refills everything. im being prosecuted fir others mistakes, and when i get frusturated or upset then i need to see psyc. god forbid i have a voice! doctors take an oath, i live in pain, ive lost me, and i feel like the ppl ive been begging for help who are suppose to help dont care. ive been through hell with doctors, insurance companies, govt financial help, everyone has let me down. when I was diagnosed finally after 12 years, i was told antidepressants will help and thats it. i was stunned, i flipped. ive been through the “thorazin” shuffle for years. . im not depressed! ive had over 7 different diagnosis constantly being changed and never had a doctor actually listen. we need awareness, research, acknowledgement, respect, help, a cure. dont say were not as important, or no big deal when with this disease there is a huge suicide rate. sounds pretty terminal to me!!! its really sad when someone is suffering so deep they feel thats their only choice, freedom from torture. im almost completely unable to walk! when does it end, when does someone start to listen!!!!

  12. dave says:

    Sheryl-government and the health care industry won’t hear the
    dried voices of people in pain unless we band together and demand better research, more effective treatments, more caring doctors and insurers and pharmacists who won’t burden us. I made a petition to improve pain care in 2010- The American Pain Rights Act- which anyone can sign.
    There are many treatments for fibromyalgia that most doctors don’t know about. Having had fibromyalgia- I know how difficult life can be and that hope can be hard to hold on to- but I hope you will soon enough find something that will work better for you.

  13. Sheryl says:

    I have been diagnosed with Fibromyalgia for 7 years now, but had symptoms for 11+ years. I’ve been to many Doctors, & even been told it’s in my head. We go through tremendous difficulty just to get a diagnosis. I have been on Gabapentin, Cymbalta, Neurontin, Nortriptyline, Methocarbamol, Naproxin, and Cyclobenzaprine to name a few. Nothing has relieved my pain & symptoms except Hydrocodone. It takes the sharp edge off, but I still suffer greatly. My Doctor is Compassionate & Believes my pain is real, however, she is limited in prescribing pain medication. The laws make it extremely difficult for us to receive the medications we need. We suffer enough already! Why are we being punished for others crimes? I believe it is abuse & inhumane to make pain patients suffer when there are means of making our lives more bearable. It is a dark, lonely existence to suffer in incredible pain & not be able to perform simple everyday tasks. Confined to a Life Sentence in a Body Infested in Pain, it is a struggle to just exist & make it through each day. I desperately want to escape my body to seek relief. Suicide crosses the minds of those in extreme pain when no relief is in sight. Please don’t let that be the only available prescription for relief. I pray none of you or your faimly members ever have to experience this level of pain in your lifetime, but if you do, I wish you a cure or relief of pain. I am a Mother of 3, a Business Owner & a Wife. My marriage is suffering, I can’t work most days & my business is suffering. I feel like I let my children down daily & they suffer too. Please, I Beg of Your Mercy & Compassion, Help Me & All Fibromyalgia Patients Find Relief & Become Productive Again.

  14. sandra says:

    I have had fibromyalgia for 18 years. and have many other illnesses, and I’m on oxycodone, and soma just 2 out of the 13 meds I take. I’m in a motorized chair, have a hospital bed and use so many helping devices I cant list them all. It comes down to quality of life. I am on SSDI and have been for years .The pain is so bad at times I just don’t know how to explain to people what its like. I have a great Doctor that I’m so thankful for. but we need a cure, please try to help us.

  15. Jill Dredge says:

    I have taken so many medications over the years I have lost count long ago. None of them worked or if they helped at all the side effects were worse than chronic pain. The pharmaceutical companies are only interested in making their billions of dollars, they have no interest whatsoever in curing any disease. If they cured something they would not continue to make money off the sick person. So never consider them an option to look for a cure! That is what fibromyalgia needs, some real research by a real scientist, not people who stumble across something and think it may help. This disease causes unimaginable anguish by destroying any life we had and leaving us with a roller coaster existence wondering what treatment may be helpful. Then it turns out, none of them are! These 3 drugs seem to help a few people, however they did not work for me. And if they work it is NOT a cure. We want a cure, we want our lives back, we want to be normal again.

  16. Jo says:

    Please help

  17. Teresa Avila says:

    I was diagnosed with fibromyalgia in 2004. None of the 9 different FDA anti-depressants my doctor had me try helped me with the pain. They added to my health issues…including weight gain, irritability, excessive sweating, and a very, very, scary one…blanking out a few times while driving and not knowing how I got from point A to point B!
    The last drug I took in 2005 was 60mg Cymbalta per day and within a month and a half, my right retina detached and the left retina was well on it’s way to detaching. My vision is permanently screwed. I couldn’t wean myself off fast enough when I put two and two together! There were horrible side effects for weeks…like nausea and extreme dizziness. I found another woman who had the same thing happen to her. Also others at AskAPatient dot com. I reported it to MedWatch but nothing ever came of it.
    I have kept some of the fibro symptoms in check by trying to stay away from the triggers…stress, white sugars and flours, and trying to get whatever exercise my body will allow and taking a good multi-vitamin and supplements specifically for joints, etc.
    I cannot work because of thepain, and the stress caused by being around too many people at once…and the sensory overload it causes in my brain. At that point it just shuts down. That alone has been a dramatic cut to our family income and that causes more stress. This illness feels like it is never-ending.

  18. Tina says:

    I am in constant pain. I have tried all three approved medications and I either had severe side effects or no results at all. I am currently not taking anything but vicodin. To be honest I rarely even take it because it really doesn’t help. I have lost my career and pretty much my life. I can’t sleep most activity is minimal because the pain is so intense. This disease is more devastating than I ever imagined!!!

  19. Crystal HOffman says:

    I am on Cymbalta, Ultram, Nuerontin, and Naproxen for my fibromyalgia; and Doxepin for sleep. You might think that would handle the pain, but it doesn’t. I do not like taking all these medicines – I would love one pill that might help with the pain. I hate the side effects, I’ve gained weight, I still can’t sleep. I’m still depressed. When the Doctor told me what was wrong with me, I cried. I knew from what friends had told me, my life was now over as I had known it.
    I cannot do many household chores, half of the time – taking a shower wears me out as it’s painful to stand, sit, or lay in the same position for very long.
    I would just like to hear or know that someone is taking us seriously, that our health matters.

  20. rosina fornabaio says:

    I am allergic to all of the meds for fibromyaliga except for Metanx the FDA considers this medication a vitamin supplement and yet its effects on my fibromyalgia is astonishing, as it is not classed as a medication but as a vitamin it is not covered by insurance it currently costs 110 to 140 per mo for this medication. In order to try to save money I tried reducing the amount I am taking and to my utter shock my pain levels went thru the roof, I also take a tincture made from medical marijuana the combination helps me significantly but at the same time not enough, I have constant struggles with some things and on my good days I burn out quickly, am constantly tired and mentally struggling. I also take vicodin my doctors have recommended that I switch to morphine but I think my quality of life is more important than getting better pain relief. I should also point out I am a type I diabetic for about 40 yrs so yes there are cross over symptoms and I also have diabetic neuropathy, and a need for constant tendon and other surgeries to help with the various problems associated with both fibro and diabetes. It is very frustrating about how little is known about this disease and even more frustrating about how little interest there seems to be by anyone in the medical profession, and it makes me wonder if with the recent changes doctors are so over whelmed with just trying to keep their practices open that there is little time and interest in doing research or documenting their patients issues.

  21. Brenda Johnston says:

    I am on Lyrica 50mg 3 times per day for my Fibromyalgia. It helps with some of my symptoms but I am still in constant pain. When I have “Flare Ups” I cannot sit, stand or even lay down without excrutiating pain. I would love to have a quality of life but honestly I don’t see how right now.

  22. Steve says:

    Antidepressants (Cymbalta, Savella, Effexor) and mood stabilizers (Lyrica, Neurontin) are ridiculous treatments for PHYSICAL ILLNESS.

    I thank God every day that my doctor put me on opioids after every antidepressant failed me.

    BTW: tramadol & Nucynta/tapentadol are SSNRIs (like Cymbalta), with mild opioid activity. They can cause serotonin syndrome, especially if combined with antidepressants, triptans (Imitrex, Relpax, etc), and others.

  23. Tamara Wiley says:

    Amen, Dawn!

  24. Marty says:

    I am on Lyrica. I didn’t think it was working anymore and I had gained 50lbs so I gradually started weaning myself off it. Boy was I wrong about it not working. Within 2 weeks the pain and depression was unbearable and sleep was 10 minutes at a time. My body felt like melting rubber. So I resumed the Lyrica and almost immediately could see the difference. What works for some doesn’t always work for others but I am grateful for it since there aren’t a whole lot of drugs that I can take without bad side effects.

  25. Laurir says:

    My partner was diagnosed with FM in the past six months and, like all of you, it has been very difficult for her. Just like congress we need to be clear with our doctors and tell them whatever it is they are trying isn’t working. When you tell a doctor this and they fail to respond, it is time for a new doctor. Or ask your doctor where their knowledge of FM comes from. You might be surprised at the answer.

  26. Susan Romero says:

    Living in pain everyday and not being able to get a restful and restoring amount of sleep takes it toll on your Body, Mind, & Soul. With the approved meds not giving any relief of pain whatsoever, I exist each day…not live. I have no quality of life at all. I am currently on 2 meds for depression, 2 for pain, and 1 for the anxiety of having to deal with it all. I can’t tell you how many times I’ve wished to be in a body that works and is free of pain just so I could have a normal life again. Being here and not being able to enjoy life with family and friends is depleting my soul. I’m losing faith that they will ever find a medicine or treatment to give me and others suffering from this horrible debilitating disease. There are many nights when I go to bed I wish I just wouldn’t wake up in the morning. Especially on the really bad pain days. The idea of ending it all & not having to deal with this 24/7 life stealing disease anymore is very appealing when your soul is low, and your body & mind are just so tired of dealing with it all. Why be here if you can’t even enjoy the little things in life anymore. Support websites and people you can talk to, who are also experiencing the wrath of this disease are a wonderful outlet when you start to feel alone in your battle of getting through your days. They can encourage you and feed your soul to give you hope to carry on in your battle. Please FDA help me get back a little of my dignity and life by finding something to help me win this daily struggle of battling Fibromyalgia Pain so I can have somewhat of a normal life again. I miss out on so many events with Family & Friends because of what this disease is doing to me physically as well as mentally. Please have mercy and push forward in your research to find a pain substance that can let me live in comfort to enjoy life until you find a cure for Fibromyalgia.

  27. Amy Outhouse says:

    I’ve had Fibromyalgia since 1994. I am never 100% pain free! Every year it has gotten progressively worst. I can no longer work as a result! I’m on Lyrica with not much relief. Cymbalta did not work at all. I haven’t tried Savella yet. I pray ever day for a cure. I hope more drugs get approved for it!

  28. Diane D. says:

    I have suffered with every aspect of this awful debilitating disease. I have seen more Dr.’s than I care to remember. MRI’s, CT scans & God knows how many blood tests. I have this issue for some 20 years, Cymbalta, Lyrica,Neurontin & Savella are dreadful meds. with so many side effects. We need a medication for pain & insomnia. Most of us become depressed due to the fact that FIBROMYALGIA pain depletes your quality of life. We are sick & tired of being sick & tired with very little hope from Doctors that do not know what to give us except pain meds. & the new drug laws do not want to give them to us. Please help us “SMILE” & relieve our misery.

  29. Dawn G says:

    I have been suffering with fibro, for {12} yrs. there are days when my husband has too help me out of bed, and I am so hunched over from the pain in my back. this disease is out of control, and the FDA, Is doing nothing at all. If they ever get off their asses and do something to help us with this pain,then maybe we can lead a normal life. My fibro, is so bad at times, I can’t even dress myself. the burning I have all the time Is enough too drive a sane person nuts!!. And then there’s the numbness in the arms, and the pain in the fingers and the hands all the time,plus the headaches, constantly!!, this Is real people, get your head out of your asses and do something too help us!!!

  30. Liz L says:

    I have had Fibro for 17 years ,but was not diagnosed until 2 years ago during a horrific 7 week “flare”. I have tried Cymbalta and Lyrica, but they both made me so terribly depressed, I wasn’t able to even get out of bed. I currently take Celebrex, Hydrocodone and a muscle relaxer at bedtime to help me sleep. I live in a constant state of level 5 pain at the least, up to a level 8 most days. I still work full time and take care of a home, but even with the pain meds, I still have to “push through” every moment of every day. Please, FDA, lighten the bad rap we with chronic pain get for taking pain killers – we are not “addicts”, we are dependent on them in order to even have a semblance of a normal life. And please continue to research each and every lead you have to help find us some relief! Not that I wish this pain on anyone, but if only the people who treat any aspect of Fibro were to have just ONE day of the pain we go through, I can’t help but believe things would move at a much faster pace in order to find a solution. This is a “real” condition, and deserves as much research as any other disease out there! Thank you!

  31. Misty Comstock says:

    I am on tramadol and cymbalta neither one help with the pain that I am in all of the time or the depression that I feel about all of the weight I have gained in the last 3 years the not being able to do simple chores that I used to do like the dishes or taking my dog for a walk

  32. Tamara Wiley says:

    I was a healthy and well educated individual who paid my own way through college and had dreams of attending graduate school before this illness stole my life from me. I used to run five miles a day. I now cannot even walk most days. I do not smoke, drink, or even eat unhealthy food. I have always been an active and healthy person who was meticulous about what I put into my body. The meds have terrible side effects and they just keep feeding me more which my insurance will not cover or they keep raising the cost. I already pay $700 per month just for monthly health insurance coverage. This price does not include co-pays for doctors or my meds. Highway robbery if you ask me. We deserve help. I have made healthy and positive choices my whole life and I feel like the government just spits on me. I have to support single moms, help pay for their college, food stamps, take care of former drug addicts, etc but I am spit on like I am nothing. It makes me so very angry that people like me who make good choices and try to lead successful lives are walked all over. Help us and care about us, stop throwing drugs at us.

  33. dave says:

    Tamara- I see things as you do with regard to the FDA.

    It is not enough for the FDA to allow people to express their free speech rights. For the FDA- just like NIH- is under new obligation to do more than allow people to express their free speech rights. Dr. Rappaport can go back to work tomorrow at the FDA as if he never heard from people with fibromyalgia. And the fact that people expressed considerable dissatisfaction with the medications the FDA approved of for fibromyalgia is clear evidence they are too far removed from the needs of people with fibromyalgia.
    The pharmaceutical industry is under no obligation to listen to the concerns of people with fibromyalgia in developing medications, either.

    The FDA should develop a way to ensure that the will of people with fibromyalgia(and other conditions) will be translated into positive outcomes to address the needs of the people suffering from fibromyalgia. We need people in pain to be on committees at the FDA. For the FDA is too focused on the needs of business and not focused enough on the needs of consumers.
    This is why I wrote the “American Pain Rights Act” which requires government agencies to have people in pain on their committees and to require fundamental changes on how government and the health care industry conducts its business.

  34. Tamara Wiley says:

    I would like the FDA and government to care about people like me. I personally feel like they do not. I know pumping people full of drugs keeps you in business, but it does not help me. Social security also needs a reality check. Fibromyalgia is a disability and needs to be recognized as one. There are many days we cannot even walk but you expect us to work full-time. There are plenty of “disabled” people who can do more than we can and you help them. It is wrong to help some but not others. I tire of the hypocrisy. I also tire of doctors who do tell us we need to limit this and limit that, but do not back us up when it comes to social security. Well, if I can work full-time like I used to than I should also be able to run 5 miles a day like I used to, etc but I can’t. The truth is you and our doctors do not give a damn about our quality of life. You pay them to not sign our disability documents and keep us in the work force so we can earn you money. We are simply fed medicine to keep the pharmaceutical industry and therefore the FDA in business. I’d like someone to care about us for once instead of just throwing pills at us. Just how I feel about it.

  35. Kim says:

    I’d like to know if pain medication was discussed. The FDA is wanting to limit so much of it and many sufferers rely on it. Then there is the stigma of using the pain meds….just a thought.

  36. I have been following this issue due to being a patient that suffers fibromyalgia. I need help!!!!!!!!!!!!

  37. LarryK says:

    I attended online, and I thought the meeting went fairly well. I think it could have easily been a 2 day thing, but I understand time is limited. A lot of good information was covered, and gotten out in the open. I’d love to see something like this done by the NIH. Covering diagnosis and possible causation of the disease.

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