Fibro Doctors Chose Pfizer Over You

by Kristin Thorson, Editor, Fibromyalgia Network
Posted: May 30, 2012

Editorial

Do you like Lyrica, Cymbalta or Savella? Have any of these meds cured you? Or has cognitive behavioral therapy been the answer for your fibromyalgia symptoms? According to the FibroCollaborative, a program funded by Pfizer and made up of 25 physicians, these would be your only options.1 This is what they promote as the roadmap to success, but actually, it is the roadmap to doom for all fibromyalgia patients.

You may have initially viewed the FDA-approval of Lyrica as a milestone, but chances are you did not know what was brewing behind the scenes. Soon after the FDA-approval of the three drugs, new criteria for fibromyalgia appeared in print in early 2010.2,3,4 They don’t require a doctor to examine or talk to you; identifying your illness has been reduced to filling out a 2-page form. The criteria were disguised as an easier way for primary care providers to diagnose fibromyalgia, but more than likely, it expands the diagnosis to anyone who has muscle pain and trouble sleeping.

This new way to sell more drugs (even though each one only works in one out of 8 to 15 patients) can be credited with one of the big chiefs of the FibroCollaborative, Daniel J. Clauw, M.D., of the University of Michigan in Ann Arbor.5 Clauw is the author of many research papers, but lately, the majority have just been about pushing certain drugs. He and his Pfizer-affiliated colleagues want all primary care doctors to know there are three drugs for treating fibro: Lyrica, Cymbalta, and Savella. Although many medicines are available to treat you, few others are mentioned.

While everyone thinks of researchers as working on the patient’s behalf, when it comes to the 25 members working on Pfizer’s behalf, it is hard to believe that your interests will trump profits. But don’t think this money-making plan was solely cooked up by Clauw. He shares the podium with:

Lesley M. Arnold, M.D., of the University of Cincinnati,
Bill H. McCarberg, M.D., of Kaiser Permanente,
L. Jean Dunegan M.D., JD, of Brighton, MI,
and Dennis C. Turk, Ph.D., of the University of Washington.

What’s more, there are another 20 members who dance to Pfizer’s tune that deserve acknowledgment as well:

Kenneth Barrow, PA–C, MHS – Wilmington, NC
*Lucinda Bateman, M.D. – Salt Lake City, UT
Larry Culpepper M.D., MPH, – Boston University
Cassandra Curtis, M.D. – Greenfield, IN
Yvonne D’Arcy, M.S., CRNP – Johns Hopkins
Kevin B. Gebke, M.D. – Indiana University
*Robert Gerwin, M.D. – Bethesda, MD
*Don L. Goldenberg, M.D. – Newton-Wellesley Hospital
James I. Hudson, M.D., ScD – McLean Hospital
Rakesh Jain, M.D., MPH – Lake Jackson, TX
Arnold L. Katz, M.D. – Overland Park Medical Center, KS
Andrew G. Kowal, M.D. – Burlington, MA
*Charles Lapp, M.D. – Charlotte, NC
*Michael McNett, M.D. – Chicago, IL
*Philip J. Mease, M.D. – Seattle, WA
Danielle Petersel, M.D. – Pfizer, NY
*I. Jon Russell, M.D., PhD – San Antonio, TX
Stephen M. Stahl, M.D., PhD – San Diego, CA
*Roland Staud, M.D. – Gainesville, FL
Alvin F. Well, M.D., PhD – Oak Creek, WI

Those with an asterisk used to advocate for fibromyalgia patients (along with Clauw), but how can anyone view their actions with integrity given their alliance with a drug initiative that only promotes three medications for treating fibro? If you need something to help you fall asleep at night, you best get hip with Lapp’s behavior modification program.

Perhaps it is good news that Lapp’s behavior program is free on his website. Of course, once you have given all of your contact details on the website, who is to say they won’t get passed along to Pfizer?

While talented physicians and researchers have placed their loyalty to the drug company, rather than remaining independent-minded scientists, the question is: why? There had to be a draw to the drug company’s scheme. Money? Power? Or maybe a little of both? Regardless of the reasons, it appears that treating patients is no longer their primary interest.

These days, one may automatically assume patient organizations are working in collaboration with the drug companies. It can be a sneaky way of connecting you to Pfizer’s initiative, to collect info about you as a fibro consumer in order to improve their marketing strategies. Is that really what you want as a patient, to be viewed as marketing income from the organizations you trust to have your back?

Take for example, the National Fibromyalgia Association (NFA), who even in the midst of legal troubles keeps sending out emails to patients to collect more data on you. They have a disconnected phone number and an address that is nothing more than a box. Now the National Fibromyalgia and Chronic Pain Association (NFMCPA) out of Utah has taken over the patient-related reins of the NFA. They promote the FibroCollaborative on their website, so perhaps they sit at the same table with the NFA, the American Chronic Pain Association, and others to help Pfizer’s bottom line.

This is not the case for the Fibromyalgia Network (or the American Fibromyalgia Syndrome Association). There is a price to pay for not being a puppet on Pfizer’s or anyone else’s string. Although the Network makes lots of info available for free, we have to charge for our publications. That’s the price you pay for objectivity.

1. Arnold LM, Clauw DJ, et al. Mayo Clin Proc 87:488-96, 2012.
2. Wolfe F, Clauw DJ, et al. Arthritis Care Res 62:600-10, 2010.
3. Wolfe F, Clauw DJ, et al. J Rheumatol 38:1113-22, 2011.
4. Arnold LM, Clauw DJ, et al. Mayo Clin Proc 86:457-64, 2011.
5. Clauw DJ, et al. Mayo Clinic Proc 86:907-11, 2011.

162 Responses to Fibro Doctors Chose Pfizer Over You

  1. judy zehnder says:

    Really wish I could find a Doc to help me better I think all my meds are not working like they use to and my doc won’t give me nothing stronger for pain

    • Rhonda says:

      I know exactly how you feel! I just went to a new GP yesterday, because I have been to about 5 different family physicians that just want to put me on heavy meds or meds that don’t agree with me and they really don’t seem to understand or even care about the way I feel. I wish that I could find a more caring and understanding doctor!

    • Julie says:

      I crashed really hard when i went off of savella…i’m still on cymbalta which helps with the depression, but right now my dr. tried a new drug for me…it is a patch called BuTrans…it along with diet and getting my vitamin/iron/magnesium….levels all right is helping huge! Get this, my lack of energy is because of my low hormone levels.

    • Linda says:

      Lyrica almost destroyed my life after taking it for only 2 weeks. I went through hell and have lived with the dilibitating results for 7 years. I wouldn’t take any of the other two listed if I was paid millions. My life will never be the same again because of this drug. These are powerful drugs only a board certified neurologist should be allowed to prescribe.

      • Helen says:

        Please listen to what Kathy said “Sadly, with Lyrica the pain was reduced but so was my brain function. Regular Fibro fog is a walk in the park compared to what Lyrica did.”

        Lyrica is also an anti-seizure medication! I know from experience that anti seizure medication slows down brain function, effects memory and cognitive ability!

      • Cynthia says:

        Lyrica made my life hell!!!! My doctor added several other drugs just to deal with the side effects of Lyrica. And then getting off the drug was a nightmare too! I had to call in sick for 3 days because I was withdrawing so bad. And it was under a doctors supervision (not cold turkey). Now on Savella but it basically just helps me cope w/ this nightmare of FM.

        • Janet says:

          please use extreme caution with the Savella!!!! It made life Hell for me and I became a mean nasty person over night & became suicidal. Only God’s Hand stopped this from happening as I was unaware that I had gone that far. All of you out there, look for publication of “Worst Pills/Best Pills” I thinl they have put all 3 meds on there black box list of drugs not to take.

          • cymbaltas hell says:

            Ever see one of their drug reps walk into the office, ignorantly bumping your appointment back as she tells the receptionist shes got a lunchion to get to. Like a whore she walks out of the buiding in her prostitute_red colored high heels. SHe gets into her Mercedes Benz and speeds off to the next one… She is big pharmas weapon she spreads her advice like a disease!

    • pat says:

      I suppose I am one of the lucky ones for whom Lyrica has been a God Send. It is probably because I have fibro as a symptom of an auto-immune disease called Sjorens . I started the Lyrica when the neuropathy pain in my feel & legs was so extreme I could not walk. I was in a wheel-chair of jazzi outside of the house. Lyrica stopped the labor like pain in my legs, and as an extra helped fibro too.

      • Sand P. says:

        Lyric has done wonders for my neuropathy leg pain, I’ve not noticed any side effects and it also seem to reduce my fibro pain.

      • Carol says:

        One doctor my sister saw told her that Lyrica was the same as Gabapentin/neurotin. It was just packaged and sold under a different name. Same medication…more money for them.
        I tried the Sevella and Cymbalta and like many it was a nightmare. Many other drugs I was put on made my life a living hell as well. Years later I am still suffering the consequences of them.

        • Marsha says:

          Lyrica was so horrible that I didn’t last a week on it. I felt like I was in a coma when I woke up & couldn’t move or get out of bed. The insulting commercials had are family & friends telling me or my husband that they had seen a CURE for fibromyalgia! Cymbalta was prescribed for my husbands depression, he became psychotic & I looked up the side effects & told him to stop ASAP.

    • Shelia says:

      I have been on all three of the meds. Lyrica caused me to put on about 30lbs in 2 months. Cymbalta only helped with the depression but not the pain. Savella is giving me really bad headaches and I am constantly in a bad mood. None of them help with the pain and my doctor will not write a script for anything else for the pain.

      • Darla says:

        I am taking Lyrica. It took a while for my body to adjust to it but it initally reduced the amount of pain I was having. That was five years ago…it is not helping much anymore. So my doctor put me on Savalla as well and I was on it for one month. In that months time, I developed the worst migraine ever, numbness on my left side and vertigo. I became a monster, tearing up my house, & cryng cons

    • Mandy Case says:

      I read all side effects of the meds I take. No one makes us take them. I have taken lyrica since it was approved by the FDA. I couldn’t aford it, I wrote to Pfizer they sent me a form for my doctor and I to fill out. I haven’t been pain free since Lyrica. As one post said I would rather put up with the weight gain than the pain.

    • Drucilla says:

      Find a reputable, caring pain management Dr. Preferably a neurologist.(I know I’ve said this before). But if I would have stayed with the rheumatologist I would be in true sorry shape right now. Not that I am doing back hand springs anymore but I was much worse.

    • Gaileileen says:

      I tried all of these to no avail….Cymbalta did NOTHING for my pain, Lyrica made me feel like I was on speed or something creepy and ONE SINGLE DOSE of Savella made me so sick with my heart racing & wanting to vomit! I REFUSE TO TAKE ANYMORE MAN MADE DRUGS WITH WORSE SIDE EFFECTS THAN THE PAIN I AM TAKING THEM FOR…PHARM COMPANIES ONLY WANT THE $ & DON’T CARE WHAT ELSE THEY R DOING.

  2. Valerie says:

    I don’t understand why these drug companies think they need to push to make more money it’s like they forgot about the people who need help… When some of the drugs are actually harming us because of the chemicals they are using. They are like the illegal drug lord that are overseas they don’t care about anything except for the money.

  3. amy says:

    I am so grateful my doctor is working with & backing me!

  4. Michael says:

    Who cares about any of this as long as the med works? Lyrica has pulled me out of a deep pit of pain and fatigue. Without it, I’m useless.

    • Sheryl says:

      Thank you SO much for this information. The drug companies have had their main focus on money for years. But it makes me sick that some of the familiar names in Fibromyalgia research are collaborating with big Pharma to the detriment of their patients. Shame on them! The whole list of them make all doctors look bad. Dr Clauw, I hope you can’t sleep at night. Kudos to Fibromyalgia Network!

    • Dellybean says:

      Michael, I glad that Lyrica is saving your life. I tried it and had all the side effects and then some. So my doc tried me on Cymbalta. Luckily that is working pretty well and have no side-effects. What about those who have side-effects to all three? What do they do now?

      • Kathy says:

        Sadly, with Lyrica the pain was reduced but so was my brain function. Regular Fibro fog is a walk in the park compared to what Lyrica did. I spent the better part of 2 years not being able to function on Lyrica even though the pain was a bit lessened. As to Cymbalta? 0 success; I was told by my rhemat. Dr. the Savella is the same pretty much as Lyrica.

      • Lozetta Sandin says:

        I am very disappointed in Drs. Clauw, Goldenburg and Johnson. Their research and explanations made it easier to accept what was happening. At least Dr. Bennett of Oregon was not on that list—that I saw at least. I reacted unfavorably to all three of those medications. Now it’s just Tramadol for pain—and that takes so long to act to get any relief. Plus I’m so fatigued only a nap will help.

      • joan says:

        I am the person that all three meds don’t work for. It IS a big deal for us if they have changed the ‘outline’ for what fibro is. This means that we once again, have been thrown into a non-specific category. It also means that the docs that have been working for us, are now being paid off to work for Pfizer. It is huge. It could mean that I would lose my disability if anyone with pain has…

        • Ellen Hilts-Gossett says:

          I’m VERY sensitive to everything I ingest (including vitamins). My GP gave me some sample bottles of Lyrica. I came home and took two pills within two hours. Sitting on a chair I fell into such a deep sleep I came to with my husband screaming my name. Then I started walking into walls. Trying now to manage through common sense. Only I know what’s best for me & don’t trust pharma. Be careful.

    • Kate says:

      Well, I care. First, I’d like to say I’m so glad Lyrica is working for you. But for my sister and myself, the product not only didn’t help the fibromyalgia, but threw our bodies into more pain. So, I’d like to know that doctors and drug manufacturers are still looking for something that will work for me.

  5. Phyllis says:

    Thank God I have a primary care Physician who understands Fibromyalgia, the extreme chemical sensitivity I deal with and who responds to my complaints with discussion and treatment plans that are for me. She does not simply prescribe the latest, what I refer to and the “drug of the day”, but knows in my case, drugs, all drugs are not in the equation.

  6. Phyllis says:

    I wanted to also thank Kristen and the network for working on behalf of Fibromyalgia patients, not the interests of the drug industry and the insurance industry.
    I remember well the effort of Wyeth Labs to get the FDA to outlaw Compounding Pharmacies and to prevent women’s physicians from prescribing Bio-Identical Hormone Replacement Therapy with Estradiol.

  7. Joanne Finnegan says:

    Well I’m not surprised. Money talks!!! I can not take any of the 3 drugs. The Cymbalta raised my liver function tests. The savella raised my blood pressure. The lyrica makes you spacy and you put on alot of weight. All their doing is putting a band-aid over a problem. How about getting to the root of the problem. I had a Dr. insist I take Lyrica after I went over all my concerns with him.

  8. Joanne Finnegan says:

    One other thing about fibro. Nobody ever told me to have a gluten allergy test. I read on the celiac website that anyone diagnosed with chronic fatigue or fibromyalgia should have this blood test done. I proved the Dr wrong who insisted I go on Lyrica because my pain is much better on a gluten free diet!! All these Dr.s do is hand out one prescription after another.

    • Cathy says:

      I was diagnosed with Fibromyalgia 9 years ago…and Gluten was never mentioned. I went Gluten free 3 weeks ago…surprise! No more joint pain, muscle cramping or fatigue! I have been completely off pain meds for 10 days and am now reducing my Savella.

      • Nancy Kovitz says:

        I can’t tolerate any of the meds and the only things I found that helped at all was going gluten free. Exercise is good if you can do it. I’ve tried just about everything in alternatives. I do meditate one hour a day and that helps me to keep going. Narcotics make you feel worse the next day, because you probably overdid it. I’m on 2mg klonopin a night and wish I could find a good Dr. in…

  9. Mo says:

    Lyrica did not cure me but it has given me a far far better quality of life than the hell I went through day by day before lyrica. I could NOT live without its help.

  10. Lee Ann says:

    I have a great doctor. I had another great doctor until he moved. Due to his careful attention to my computerized med records, he attached all of my labs and exrays to the medical charting. And I got SSDI in 118 days. He then moved away. My doctor now is just as wonderful and very supportive. In NW Iowa.

  11. Simone says:

    Cymbalta was prescribed to me because the med I was on previous to it was ‘contra-indicated’ and my liver was becoming quite a mess. Fortunately, that was 2 years ago and the Cymbalta appears to have no side effects. In saying that, I am on 6 other meds, am & pm and 1 biological, so the Cymbalta is not the only answer to my needs.
    Lyrica did NOTHING for me. An expensive med with zero…

  12. Felicia says:

    It would be nice to hear what all of our options are instead of hearing just the 3 that Pfizer is choosing as alternatives. I personally have treid all 3 and have benefited from Cymbalta.

  13. Cheryl says:

    Everyone’s different. Some meds work for some folks & not others. Weaning down on Cymbalta because after 3 1/2 months, all it did was add 40 lbs. of weight. Did nothing for pain; only slightly helped mental focus from fibro fog. 4 days after pulling back dosage, developed dizziness, heart palpitations, face tingling; BP through the roof! Now on BP med through withdrawal process! Cymbalta=poison.

    • Cherice says:

      Cymbalta is the worst drug in the world. If you are sleep deprived and no appetite, it causes you to feel very down down down and very much alone. I tried to get weaned off by a primary and begged them to help me wean off. The primary told me she could not be bothered and told me that she would baker act me instead. I tried one other time and had very bad suicidal thoughts, am on 120mg of cymbalta

  14. sherrill says:

    Thank goodness for the work you do! Please keep exposing the truth. I also have hep c and the drug company research is so tainted by greed that it is disgusting. They only look at patients as potential profit. So please keep spreading this information. Information is power.

  15. Patricia says:

    Clauw, Turk, Goldenberg, and Russell have all helped to further the medical field’s understanding of FMS. I have cited research from them in my dissertation concerning FMS because they furthered understanding of FMS as medical condition versus psychiatric. I know not what possible nefarious connection they hold w/Pfizer. I appreciate their contributions.
    This is the first I have heard of.

  16. Lynn Wagra says:

    I feel betrayed by Dr. I. John Russel. He was one of the first Drs. to stand up for Fibro patients and say yes Fibromyalgia is real. He did more for us than any other Dr. I feel. I am hurt, dissappointed and feel
    betrayed by this man who was once my champion. :(

  17. Deborah says:

    It is truly so limiting to have only 3 drugs presented for FM. I tried Cymbalta (1/16th of a dose every other day!) and went crazy 3 months to recover. So…I don’t touch the other two. But, a tiny dose of Gabapentin has helped…and that is worth loads. BUT here’s the rub…most of the things that TRULY have helped are FREE!!! …choosing the right-for-me foods, exercise, a quiet life etc

  18. Diane Vigar says:

    I have a good rheumatologist to work worth- and since I was a research scientistfor 25 years for one of the largest pharma companies (not Pfizer), we find ourselves on the same page whenever we review drugs to treat my fibro. We decided to try Lyrica, even though in his experience his other fibro patients reacted poorly to the drug. Within 1 week, I agreed with his other patients.

  19. Tricia Bartolucci says:

    Again we have you to thank for your objectivity. NFSA seemed entrenched with drug companies. When I attended 1 meeting they handed out tons of literature for Lyrica and started the meeting with a commercial for the drug company. It is truly a shame these Fibro experts are promoting biased information to others MDs so we pay the price of the misinformation.

  20. RICHARD NIELSON says:

    Diagnosed with fibromyalgia in 1993, I was eventually ordered to take Cymbalta a few years ago. I have had type 2 diabetes since 2005 and have gained nearly 100 pounds since being put on insulin in 2007. My dieticians tell me that I am in a starvation mode and need to eat more in order to lose weight, while my doctors say that I need more exercise and that I must be eating too much. Please help.

    • Katy Parkhurst says:

      I can identify. Am on strict food plan, write and commit food daily and record weights. Docs saw my journals. Doc says cut calories. Dietician says I’m starving. Then, there’s the aging factor.
      I’ve gained about 25 pounds and now on severe calorie restriction temporarily. Tried gluten free, no response. Difficult to exercise. Cymbalta and other meds help. Keep researching and trying…

      • JO says:

        I CANNOT TAKE ANY OF THESE MEDS. THEY ARE ALL VERY DANGEROUS. NOW ON GABAPENTIN, AND HAVING SIDE EFFECTS THAT ARE NOT GOOD. SO WHAT AM I TO DO? EXERCISE IS BEING PUSHED ON US. I CANNOT DO IT AFTER, I AM IN SUCH PAIN I CANNOT FUNCTION…… WORSE PAIN IN MY HEELS, FEET, LEGS, BACK. AND HANDS. ACHE ALL OVER. THIS MED. COORDINATION IS BAD…HEADACHES, VISION.

  21. Mary says:

    Diagnosed 5 years ago I was on Lyrica and Cymbalta. Weight gain, not that much difference in the pain management except at higher dosage which made me into a zombie. Off meds and on supplements only for about three years and, while I can’t do what I used to do, at least I can function at an acceptable level. Meds are conveient and easy but not always the best idea.

  22. mf kahn M.D. says:

    In Fibromyalgia like in other fileds,independance is a precious gift ! I am very suspicious about the Pfizer program !

  23. Jenny says:

    This won’t work for everybody but since I quit eating anything with gluten in it my aches and pains have subsided by about 60-70 %. My bad days aren’t as bad and my good days are much better!

  24. connie asimakopoulos says:

    OMG unbelievable, thought there was something fishy going on with PFITZERS . I have been on Lyricca for bout 6 years now and it has definately helped me but I am sending this on to my doctor and hopefully she will keep it in mind whilst assisting me with a plan of management. I thank you ten fold for keeping us informed with all sorts of info. Keep it going please.

  25. FitWith Fibro says:

    I took back control of my health after handing it over to a doc. I do not respond well with the mainstream medical model of drugs!!! My body is very chemically sensitive, it is sensitive to the fluoride that is forced upon us in our water supply, it is sensitive to all of the drug residue that is in our water supply & because of toxic food because of Monsanto. Natural healing methods are best.

    • yvonne says:

      I am very sensitive to medicines and chemicals. I refuse to take prescription medicines. I have enough problems, I don’t need the side effects. I have had fibro for around 15 -20 years. I am taking charge of my own health because there is really nothing dr.’s can do and I have no insurance. I will try the gluten free diet and watch my nutrition, to see if that helps.

  26. Veronica says:

    Haven’t tried any of the drugs mentioned and don’t intend to. I’ve used gabapentin (Neurontin) for years with no known side effects for years. My doctor says why change if I’m getting relief. I’m not depressed; I’m just perpetually tired and in pain.

    • Joyce says:

      I, too, have been on neurontin for a number of years. I think it is the most important medicine in my long list of meds. I tried Lyrica, but the side effects were clearly very negative. My fibro is a result of PTSD, so I take several meds for anxiety, sleep. I also take Arthrotec. It greatly affects my generalized pain & burning sensation

    • Karen Alexander says:

      I do not take the 3 drugs mentioned, but have been on Neurontin for about 6 mo. The first month, it was wonderful. No side effects and the pain was gone! Then Boom, it quit working. My Dr was very unsympathetic and acted like I purposely stopped the positive effects. He refuses to give me any type of pain meds at all. So I cope from day to day. 20 + yrs with fibor and never any real relief. Ideas?

  27. Linda T says:

    I am grateful there are people doing research to help FM patients; at least they acknowledge it is real! Personally, I know meds affect each differently. Lyrica=immediate wt gain, Cymbalta=slower wt gain, now Savella 25 mg. helps a lot. 50 mg caused heart issues. I, too, love FM network because it offers help, support and knowledge for us! My rheumatologist is great! Warm water exercise helps!

  28. ruth says:

    I’m astonished that Dr. Robert Gerwin has gone over to the dark side.He
    knows that trigger points play a huge role in the pain of FMS & MPS, and
    that these drugs do NOT address trigger points. Years ago, he sent me to Dr.Roberta Shapiro, who is gifted at treating TP’s. Trigger point injections work, but only if performed by a qualified practitioner.If
    they use steroids, that’s a big no no.

  29. Deb J says:

    None of the 3 work for me. I take Cymbalta for the anxiety the pain creates but it does not touch my pain. I’m sorry to hear this about all of the docs. I used to be a patient of Dr. Lapp’s partner Dr. Black. I could no longer afford to see them since my insurance woudn’t cover it and since I did not feel I was getting that much help.

  30. Debra Blecher says:

    My 1st Dr. diagnosed Fibro. He started me on Ambien, and Tylenol with Codeine. When I needed stronger meds, he told me to find another Dr.! I called lots of Dr.’s but they would not prescribe opioids. Found 1 thru a Dr. friend -he prescribed the best drugs for me -Ms Contin(gen), Clonaz-
    pam for restless legs, Flexeril(gen), Trazadone for sleeping. I drink alot of coffee, but this works for me!

  31. Rebecca B says:

    I tried Lyrica and while it helped quite a bit with the pain, but I was gaining 10 lbs a week on average. I went online and found that many had the same problem and that the weight gain never stopped. Stopped that drug, began savella. I had to half-dose Savella due to nausea, but it helps.
    I also have MS and Lupus. Besides the meds, healthy diet and movement (stretching at least) helps soo much.

  32. Cinda A Rickel says:

    Clauw, Russell, Lapp, etc.? Seriously? Long-respected researchers now sitting on a drug company panel that recognizes only three expensive, often ineffective and/or dangerous drugs for fibro? I can only assume that you are there to affect positive change in the drug industry’s ethics and methods. Because the alternative can only mean you’ve sold out your reputations and our health for $.

  33. Cinda A Rickel says:

    Clauw, Russell, Lapp…? Seriously? Long-respected researchers now sitting on a drug company panel that recognizes only three expensive, often ineffective and/or dangerous drugs for fibro? I can only assume that you are there to affect positive change in the drug industry’s ethics and methods. Because the alternative can only mean you’ve sold out your reputations and our health for $. Shameful!

  34. Marcia Brislane says:

    I have been taking Cymbalta for about a year now and these replies are convincing me that I should take another talk with my pyschiatrist.
    I have a pretty bad case of fibro (I guess they are all bad). I was forced to retire from my job after I came back from a knee replacement. This is absolutely the worst year I have ever had with pain and confusion and lack of attention. 3 mths cost $1,382.00

  35. Margo says:

    The problem is the pharmaceutical companies….not the doctors. The doctors only know what they are told about the medicine, they do not know if it will work or not…thus the phrase “Practicing Medicine”. Things change and peoples lifestyles are very different. Not everyone is going to be helped by the same thing, not to mention there is no CURE for these debilitating diseases.

  36. Patricia says:

    No drugs for me. They did not work and gave me other conditions like IBS, GERD, oh and 50# weight gain on Lyrica. I take a Neurontin at bedtime but no other pain meds. I use White willow bark for stiffness. Exercise is the best med yet. I can easily overdo and have nerve pain thus the pm Neurontin. Brain fog/fatigue are my worst so I have a supplement regimen that helps me feel almost normal

    • joan says:

      Patricia – I want to know more about what you are doing. The last month I have taken myself off of everything but Tramadol 2X for pain, a nasal spray, and 1/2 Xanax .025 i think. Everything else makes my life worse. Can you contact me? I am on Facebook – Joan Breckler. Thank You!

  37. Henri Joan says:

    I have had Fibro and CFS since 1987 and was 1st diagnosed (in 1991) by my PCP, Dr Ron Waltz in Lake Forest Park, WA. Ron is a superior doc! I’m surprised that no one has mentioned talking with a pharmacist about these drug regimes; they often know much more than doctors. I get relief from Lyrica and Norco, but I know I’m lucky. Keep on keeping on, everyone! Peace, Henri

  38. Jill says:

    Savella saved my life, I now have a life because of this drug. I am now returning to school to work in the medical profession, I sleep better, have a part time job and I can run again! I also would like to point out that I am receiving the medication for FREE through a assistance program because I cannot afford to pay for it on my own and i do not have health insurance because I have FM aka a…

  39. Madeline says:

    I tried Lyrica when it first came out. The first pill was ok, but the second!!! OMG!!! Within minutes I literally passed out. I hardly made it from my chair to the sofa. I was out for about 24 hours. Guess I was just sleeping, but it was very odd and scarey. Savella is helping me, along with Cymbalta and 5 mg of methadone twice a day which is a tiny dose, but just takes the edge off of my pain.

  40. James Malicoat says:

    I have tried all three,Lyrica just made me crave chocolate and gain over 60lbs,even at the highest level. Cymbalta turned me into a zombie that couldn’t pee, and Savella did nothing. I have had this disease for over twenty years and have taken so many different drugs I’m surprised Im not dead. I can get some things done, but only small things.Nothing helps the Neropathy anymore .

  41. Ellen Leahy says:

    I fortunately DO get much needed pain relief from Lyrica but, like many of you, turn into a zombie as well. I’m really disappointed however at how the medical mainstream just cannot help themselves from being sucked in by the drug companies. Money talks louder than anything. Remedies that don’t generate cash never have the chance to get fully tested, marketed and provided to us fibro…

  42. carol says:

    I visited a new rheumatologist, and the first think he said was, “Have you taken Cymbalta?” I said, “Are you interested in why I’m here.?” After listening, he put down any alternatative things I was doing and pushed the drug again. I went on it and felt like a new person, emotionally and physically, and then after a few months it stopped working. Tried a higher dose, but side-effects were…

  43. Angela says:

    Why take the more expensive Lyrica when the generic form of Neurotin gives the same result? Of course the drug company does a great job of pushing the more profitable product.
    I tried but cannot take Cymbalta.
    I am thankful my doctor does not question my need for an opiod. I take Valium for muscle spasm, again thanks to my doc for trusting me with the drugs that help me the most.

  44. Izzie says:

    I, too, had an example of a doctor pushing these three drugs. I went back to rheumatologist at urging of family doc. The rheumatologist asked me if I wanted to try Savella. I objected because of all meds I have tried . He said, “But you haven’t tried Savella.” He wrote RX — for 3 months. I took three, had side effects. That trial cost me $82! I will not go to him again.

  45. jane says:

    I have had Fibro for 22 years and was diagnosed and treated by Dr.Barbara Gordon-Cohen, DO and Associate Professor at the NY Osteopathic Institute. She is comes highly respected and recommended by all of her patients for her caring and methods. Dr.Barbara uses Osteopathic manipulation and trigger point injections, among other things, to relieve pain and stress. She is the best in the business

    • Terrie Williams says:

      I too have had great success working an osteopath, Dr. Jeffrey L Brown, in Henderson, Nevada. I started with him last October. Right away he found out I have hyperthyroid, gluten sensitivity, low hormones and malabsorption issues. my pain has reduced from an average of 7-8, to about 2. Unbelievable! Now I am weaning off lyrica and I never take hydrocodone anymore. Tylenol works now.

  46. Charlene Allison says:

    Cymbalta was a complete disaster for me. I was almost a zombie, blood pressure went up 10 points for every 10 mg of Cymbalta, and could hardly walk a block. The effects got much worse over time. I noticed Philip Mease on your list. He was the first doctor I saw for my FM, and he helped quite a bit. Then, he started having ARNPs see his long-term patients and do the prescribing. A disaster!

  47. Mary L says:

    I am working with an acupuncturist and slowly doing better. Many of my symptoms are because of meds, likely gabapentin. . I tried to manage with diet & aquatics exercise, but have had to add Cymbalta & nuvigil to long-term NSAIDS for OA. Weaning slowly & hopefully, but the warnings about being on or going off Cymb are scary. Glad to have help, but Don’t know how these get approved.

  48. Suzie says:

    Diagnosed over 20 yrs. ago. My doc refuses to put me on Lyrica or Cymbalta…not good for me she says. Took Savella. Went off of cold turkey. It was driving me to have episodes of irrational anger outbursts, paranoia, and aggravate my tendency to be somewhat OCD…smile! I’m back on Neurontin (generic) and Zoloft. Much better emotionally but pain is not controlled in any sense of the word.

  49. Judith Murphy says:

    Lyrica has given me a great deal of pain relief. Cymbalta helped awhile but like the many other antidepressants I’ve taken over the last 30 yrs stopped working. The side effects of Savella made Lyrica a walk in the park. Fibro patients are different and doctors must work with them as individuals. I’ve trusted FMnet for 10+ yrs. Thanks for bringing us truth. Trust Big Pharma? No Way!

  50. Dr. Linda B. Greer says:

    If you’ve had a serious adverse effect from any drug, this should be reported to the Food and Drug Administration as well as the manufacturer. The FDA is on the side of public health in these matters and has the right to pull a drug off the market if enough adverse data is gathered.

  51. Cathy Carpenter says:

    I have had fibromyalgia since 1982. I have a great network of providers now. I hate the doctors that sit on pharmeceutical panels for money rather than for their patients. I have read everything I could, starting with the first researchers of fibromyalgia and how they continued to work on this issue when most did not believe. Keep yourself informed and fire doctors that don’t get it. Cathy. :)

  52. kathy jossendal says:

    I’m happy for those people who have been “helped” by these drugs. However, I have to wonder, in the long term, what the after affects will be. Consider the great Hormone cure for menopause, only to find out it in fact was not good the heart, and good for the body, in fact caused problems. Pfizer and large drug companies are DRIVEN by money…… you, especially women are guinea pigs… fight…

  53. Charles Lapp, MD, Fibrocollaborator says:

    You have noted side effects of these medications. As an investigator for the development of Lyrica and Cymbalta, I will admit that we did experience some side effects. Most were transient and the benefits usually outweighed the effects. When these medications work, pain is reduced, and sleep and quality of life are frequently improved.

    • Judith Murphy says:

      I’ve a lot of respect for the work you have done. One of the worst side effects of Lyrica is weight gain. I am now experiencing this. When I started Lyrica the recommended dosage was much too high. Starting at 25mg and working up to the 150mg I take now greatly reduced the dizziness and nausea.

      I worry over the influence the drug industry has in the diagnosis and management of fibro.

  54. Charles Lapp, MD, Fibrocollaborator says:

    Thanks to Lyrica TV ads many people now realize that they have FM; and many more doctors recognize the illness. Pfizer’s Fibrocollaborative developed a roadmap for future studies; we educated hundreds of doctors on how to diagnose and treat FM; we published a “Framework for the Management of FM” in the prestigious Mayo Clinic Proceedings; and a website that educates doctors on management

  55. Karen says:

    Please Cynthia, be very careful with Savella. I was on it for 2 years and became suicidal. I am not the only person who had this “side effect”. If you have to take it, please keep your dosage as low as possible.

  56. Deb says:

    My doctor has worked with me to use meds that actually do me some good instead of making people rich. Sertraline and trazodone are generics that help my sleep and pain. Arthritis Pain Relief is my pain med, so long as the FDA doesn’t mess it up because people can’t read labels and end up taking too much acetaminophen by mixing meds. They’ve already taken Darvocet away.

  57. Anne says:

    I sometimes wonder if it is the “process” of prescribing that has some alternative perspectives being excluded from an effective prescription.

    When it becomes is “easier” to prescribe the pharma solutions… Will that be the route a time-pressed doctor will take?

  58. Lynn says:

    My Dr and friend, which helps, is fantastic. I have a 6mth check up including meds review and blood tests as well. He’s very understanding and takes the lead from me because I know how my body feels, not him. He never pushes a drug if I say No.
    Corruption is huge in drug companies as it is in so many other big companies. It would seen everyone has their price, very sad.

  59. Elena Rios says:

    This really is a shame. I have asked time and again for natural approaches to treatment and, instead, always get a prescription for yet another type of low cost medication treatment that target individual symptoms. I want long-term natural and effective relief! Not a lifetime of chemical dependency!

  60. Beth Stowers says:

    Sadly, Pharmaceutical companies are very profit-driven. I am grateful that when I was first diagnosed with Fibro, my specialist encouraged me to make lifestyle changes: more sleep, better nutrition, less stress, etc.

    My Dad, who also has Fibro, just got off of either Cymbalta or Lyrica and was at risk of heart problems as he weaned himself off. But he was at a higher risk when on the med.

  61. kay says:

    I was diagnosed with fibro back in march very upset with it. I am on the drugs u mentioned Cymbalta not side effects and also lucria and no side effects. i go on my treadmill when Im not tired at night after a day of work. My hands hurt the back of my legs hurt my back hurts and they wont give me anything for pain nothing!!!! going to see famly doctor today and see specialist in June for check up!

  62. kay says:

    i just want to know what other meds can make me sleep very restless. for the pain its awful. has anyone heard of a disability company from the government u get money from. I dont have the info infront of me but i can get the number and see if anyone has heard about it. They want your bank account number. no i havent given any info yet finding out from doctor first today if hes heard of them.

    • Violet says:

      Ann when you talk about Low Dopamine levels, does one have to get a
      test to see where their Dopamine levels are? Also the 2 supplements,
      (they are supplements right?) . What site do you recommend to do
      some research on this. Thank you for an help. Violet.

    • kim says:

      Kay to your question about govermant contacting a great big NO this person is trying to scam you.The only time the social security office will contact you is if you have a appointment with one of there reps. and that would happen after you signed up for your social security or ssi.

  63. kay says:

    i just want to know what other meds can make me sleep very restless. for the pain its awful. has anyone heard of a disability company from the government u get money from. I dont have the info infront of me but i can get the number and see if anyone has heard about it. They want your bank account number. no i havent given any info yet finding out from doctor first today if hes heard of them.

  64. Janet says:

    I’m heart sick that these RESPECTED DR’S have left us in the trash can. we have already been through enough & lost quality of life & all 3 meds made my life worse along w/ a train load of others. chemical sensitivities! Thank you for telling us about these DR’s who now have to live w/ themselves, if they can. shame on the sponsoring university and clinical associations.

  65. Lorna says:

    I need advise on how to deal with the fatigue?It is awful ESP. in the mornings.I go to a pain clinic and I have 2 pain prescriptions,Cymbalta, Zanaflex Clonazpam,Methocarbamol and Nuvigil.The Nuvigil is a low dose and it helps some days but most mornings I can sleep until 1:00 and that is not living and I go to bed by 9:30-10:00. Thanks for any help.

  66. Ellen says:

    Thanks for your editorial, Kristin. I’m shocked to see that these people, whose important research used to be cited in the FM Network’s newsletters as groundbreaking work on behalf of patients, have now become shills for Pfizer. These drugs might work for some, but they do not work for all! Keep up the good work in advocating for patients. We need all of the unbiased info we can get!

  67. Ellen says:

    As for the Lyrica ads that Dr. Lapp thinks are so great, I disagree. They make it seem as if our only issue is pain. What about our lack of energy, sleep problems, fibro fog, and all of the other body-wide symptoms that most of us have? These ads make Lyrica sound like THE answer to FM! Also, the more people who think they have FM, the better for Pfizer. I wonder how many really do have FM.

    • Gail says:

      Agree totally with you on tv ads. More people think if take a pill then you can function & no problem. Where’s the statistics on how many people Lyrica & other 2 drugs help? Kudos to drug co’s acknowledging FM is real & need for treatment. Must remember they are business & FM is new market for them. It’s just business to them.

  68. CHARLENE says:

    oUR STORY’W ARE SO ALIKE. I tried Lyrica, gained 20 lbs in one month so stopped. I am addicted to Ambien which I hate.
    I just finished going through breast cancer and radiation for that. It has been two months now and I have NO energy to do anything. All I do is sleep around the clock, even without Ambien. And my pain levels are so high. Has anyone gone threw having breast cancer along with fibro?

    • Melanie says:

      Fibro 20+ yrs. I had bi-lateral mastectomies in ’08 & Tram-flap reconstruction in ’10. Inherited BRCA1 gene, Fibro & sleep apnea from Dad. Upon waking I get waves of pain where nerves were severed. Gabapentin takes the edge off. Lyrica & Suvella made me dopey. I participated in a yr long study of Cymbalta for Fibro. It helped w/pain but slept 14hrs/day, no energy & no interest in life. No life!

  69. Ann says:

    I have never taken any of the three prescriptions because their side effects would make things worse. Amitriptiline helps sleep but puts on 50 lbs. Low Dopamine levels cause the brain to not shut off pain.
    After two months on L-Tyrosine and L-Phenylalanine have helped me to have a 2-5 pain level. Research for yourself. I have cut back at least half on my pain meds. Previous pain a 12.

  70. Ann says:

    Low Dopamine levels cause the brain to not block out pain. L-Tyrosine and L-Phenyelalanine have helped my daily 12 pain to be only 2-5. After 8 weeks I feel its a miracle. Info from this site gave me the original info on dopamine. Found the other info by research. Check with your doctor. I have cut back at least half on my pain meds.
    The burning in my arms is almost gone. Also, in legs.

  71. Thomas hennessy jr says:

    Cymbalta helped with pain, but almost killed me!!
    Lyrics was awful!!! Destroyed my eyesight and made me gain 24 lbs around my waist in just 5 weeks!!! NEVER again!!!

  72. Janet says:

    I live in Florida where new laws against the use of pain meds has created my nightmare, uncontrolled pain for 6 mons. w/ all my chemical sensativities & the many drugs tried in past, I was taking hydrocodone 10/325, lexapro 30 mg, diazepam to relax muscles & help sleep, allergy meds & felt most stable. since this time I feel worse than ever & I’ve been disabled since 2007. U Drs killed hope 4us

  73. Louise Olszewski says:

    Savella – horrible headaches, , sleeplessness. Cymbalta – horrible nausea, fainted 1st day I took it. Lyrica – no side effects, no help either. In addition new laws in TN make it difficult for doctors to prescibe narcotic pain med. I was recently subjected to a mandatory drug screening by my doctor for routine visit. Cost of screening: $800.00! We need effective affordable treatment, soon!

  74. Louise Olszewski says:

    Ann – I want to know more about L-Tyrosine and L-Phenyelalanine. Is this a supplement that you can purchase over the counter? Will try to find article on this site.

  75. Lori Page says:

    I just have to say that lyrica changed my life.I know what works for 1 person may not work for another,but with lyrica I am able to sleep,pain is not gone but reduced.Because of this I am able to exercise which makes me feel better,its a circle.
    And the commercials lend credibility to the diagnosis.It is not all bad.

  76. Nancy Allen says:

    Savella side effects resulted in 2 hospital admissions in our support group.
    We need some research on structure and function. Body position affects our symptoms, as does prolonged standing and sitting.
    Thank you, Kristin. We all appreciate this important investigative reporting. Now, we should all write letters to these doctors.

  77. Vicki says:

    The turn towards big pharma is also what happened to good diagnosis and treatment of thyroid probs, particularly hypothyroid. Let’s hope it doesn’t happen with Fibro.
    Doctors were brainwashed by pharma reps and new criteria became the yardstick (TSH). Synthetic thyroid replacement(T4-only) became standard Rx. We are CASH COWS.
    Thanks to Fibromyalgia Network for being there for us!

  78. Julie says:

    I am a RN & have fibro.A friend was a rep for Phizer when Lyrica came out.He is a very devout Christian&very honest.He showed me the literature from the training which said NO significant side effects were found! I have seen other pharm reps lie to nurses &encourage unapproved uses for chemotherapy meds!So there are multiple ways these companies lie. Diet, de-stress, sleep & moving about help lots

  79. Susan says:

    It makes me feel good to read all the comments written regarding the push of the “amighty 3″ meds that claim to work! I often feel alone and vunearble because none of those meds work for me and my doctors dont care.. When I explain the side effects I have had with those meds, my doctors look at me as if I’m lying…reading the inserts to the meds is mind blowing…

  80. michelle says:

    CHARLENE You mentioned Breast cancer…. ya been there done that! The radiation leaves you tired. Not sure if you are taking the hormone blocking drugs. I did for 5 years. It was a nightmare, Things got much worse, That was ten years ago, and seems that nothing has helped the pain, Would like to try hormone replacement but big no no for the type of cancer.

  81. LouAnn says:

    I have not been able to use any of the 3 drugs mentioned above. I have had fibro since the early 1980 which is helping me to g’. I am now taking 150 mg of Nucenta er

  82. Gay says:

    Try multivitamins (no Vit C), B Vitamins , iron, magnesium. Rest every day, no stress- learn to say “No”. No more than 10mg Prednisone gradually reducing over time (can get 1mg tablets). I can now play golf!. Got the problem when I was under stress (as did my sister who also got FM) and when I was having interior house painted – as did my sister Connection – stress or paintwork?.

  83. Frank M. Martin says:

    I’ve been dealing with the pain of FM since the early 90′s. I’ve tried Lyrica
    and Savella, both were of no help, did help me gain weight I’m still trying to
    lose. Cymbalta does provide some relief, but one capsule (60mg) was not
    sufficient for 24 hours. Discussed with my physician and after some tough
    convincing, he finally gave in and I’m on two 60 mg capsules daily.

  84. Theresa says:

    I’m interested to know if there are any other meds out there besides these 3 that may help. Also I live in the cleveland, ohio are, does anyone know of any good physicians, or where I could find that info?

  85. Melanie DeLuca says:

    Kristen, I just want to congratulate you on your courage and honesty about what is going on with “Big Pharma”, specifically Pfizer . I am sure there are ramifications for what you have printed !Our health care on almost every level is being overrun by corporate interests and their bottom lines.We need more people like you to expose these corporate lies and the Drs that further them. Thank You!

  86. Jenny says:

    I have to say that I have been in a lot of pain. I found a wonderful Dr. and he put me on Savella. You talk about one of the hardest drugs I have ever taken in my life. This is my opinoion. I have been diagnosite for almost a year now. I also have chronic menstural migranes that are hell on earth. I think it’s sad that this medications cost so much! I stop the med b/c I could not afford it. :(

  87. Jenny says:

    I also wanted to say I think that it is very important to make sure that we all keep educating ourselves, because the Dr’s. can only do so much. I was in Pharmacy for 10yrs so it helps. It make me sad that this medications as well as others cant be a little cheaper. But as we all know companys are out for money.

  88. Amy Anderson says:

    Rockefeller funded 1,100 med schools in the U.S. that made pharmacology the core curriculum. His “philanthropic” contribution to hospitals was self-serving, meant to create “ethical” drug pushers for the companies he owned while financing legislation that made allopathic “drugs-per-symptom” medicine the “legal standard” to shut out alternatives.

  89. sheryl w says:

    I hear u & all that u say.I have been thru it all.I have 18/18 points & the double whammy of myofascia a brain injury,neck to tailbone spinal injury’s for life with arthritis in my spine,toes,fingers & carpal tunnel both wrists.The pain & fatigue & all that comes with it.It seems i double dipped tripped & slipped when i should of ducked.

  90. sheryl w says:

    Happened to me & to u.Yes?No?Maybe the powers of doctors & others play their games of meds & money with no morals,principals or even integrity!But my own personal power & strength no matter how little will i let them take it from me!!Will you?What will you do??I am a woman with these diseases but i will not be defined as them or by them nor will i let my family be!Because you see what we have they

  91. sheryl w says:

    Can not take & bottle it in liquid or pill or powder form & sell back to me or u because its priceless & deep within. Our love, our laughter, our smiles or tears of joy & pain.

  92. Jan says:

    My Sister and I both have fibromyalgia and have been thru the hell when it wasn’t acknowledged to now – over 35 years. Cymbalta was the first drug that truly made us suicidal. Lucky we have each other to know this wasn’t normal. Lyrica thru us into a fog so deep it wasn’t worth it. We won’t be trying Savella even tho we were awaiting its release in the U.S.

  93. yasmin says:

    Anybody seen the you tube video on fibro new research linked to Stanford university? What would be your view to that?
    I think all fibro patients are being abused even by the medical practitioners they attend who often use them as guinea pigs yet chose to ignore sometimes invaluable information that comes to light by really listening to their patients feedback and acting on that .

  94. jennifer says:

    my neurologist tried putting me on cymbalta which made me emotional and suicidal. she then tried lyrica which put me in such a fog, i felt like i could hardly function. my primary changed the meds and also spoke with the neurologist. I recently had a follow up with the neurologist for other things and she wanted to put me back on cymbalta. i ended up walking out of the appointment.

  95. Mary McKennell says:

    What a disappointing article about doctors viewpoint when these guys have been leaders.
    Not really unhappy to read about NFA though. They were too on board with advertisers. It is why I continue to support your group Kristin.

  96. Donna says:

    Hi I was diagnosed with fibrommyalgia 6 months ago but I think that I have had it for many many years because of the symptoms. The question I have is about savella. I find that it helps my leg pain and sleep where the others do not but the head aches are bad. I am advancing slowly. What else can I do????
    any help please!!!!!!
    Thank you
    Donna

  97. Lisa says:

    I’ve been at this since the 80′s. Cymbalta made me want to commit suicide and take everybody w/me … be VERY wary! Lyrica and Savella … my WONDERFUL Rheum in Chi had me eagerly waiting for years for it. Both were failures … no help, weight gain, massive fog problems, and other exacerbations ~ which still continue. Back to off label KLONOPIN and pain management.

  98. Moe says:

    I have Fibro, IC and a few other conditions and they had me on tons of stuff. I lived in bed for 4 years on all that crap. I started using Cannabis and it has replaced ALL of it except my antidepressant which I can not mess with! Even pain meds are no longer needed. I pretty much instantly lost the 50 lbs I had gained on the pills that did more harm than good. Life is 100% better now.

  99. Donna says:

    Yep, when I “called out” one of the above-mentioned doctors on this, he “released” me as his patient. I am sick and on disability and paid to $$ to his doctor. When I realized what was going on and said something about it, I received a certified letter in the mail “releasing” me – it’s called “Usury” and I am going to notify the Medical Board and Congressional representatives.

  100. Donna says:

    Has anyone noticed that Dr. Lapp keeps commenting on this Post, advocating these drugs?
    The Lyrica & Cymbalta commercials/advertisements project these drugs like an aspirin – “just take this and your life will be back to normal.” Now, everyone experiencing “aches & pains” has fibromyalgia WHICH WE KNOW IS NOT TRUE. These commercials only hurt those who truly suffer with fibromyalgia.

  101. Donna says:

    There are soo many components to Fibromyalgia, how can we dare advocate commericals like Lyrica & Cymbalta??? No wonder, people think Fibro sufferers are mere hypochondriacs, lazy – no wonder it’s a struggle to get Social Security Disability – these drug advertisements minimize Fibromyalgia to nothing more than “general aches & pains.” Take our pill and get back to enjoying life – “NOT!”

  102. Donna says:

    Has anyone ever stopped and wondered why the majority of those Top 25 doctors don’t accept insurance, and why they charge an EXORBITANT fee for an office visit or phone-consult? GREED – they want it all. They can pocket 4 times as much money if they don’t accept insurance, not to mention the money they are getting from Pfizer (grant money, research money, etc.).

  103. Donna says:

    Cymbalta in addition to some other drugs worked semi-well for a couple of years and then backfired.
    Savella quickly caused my blood-pressure to rise to the point that I thought my head and body was going to explode.
    Lyrica caused severe sleep-paralysis.
    When I told one of those Top 25 doctors listed above my issues with the drugs, he simply said “I’ve never heard of that.” Haha, yeh, right.

  104. JO says:

    i have been told you are the only one with problems with these med. think we are stupid too? one dr. told a lady that she was healthy as a horse. she got up, took her purse and started out the door, the dr. ask where she was going? she told him to a veterinarian.

  105. Maranda LeCureux says:

    Just once I want to here of a drug that has GOOD side effects. Like may cause extreme sexiness, lol!

  106. Pam Ussery says:

    I am on all three of the med. they work for me, yes I am slower with with my brain fog, but when it comes between a little more brain fog and a lot less pain I will go with less pain every time. I am sorry there are so many people with so many problems. Everyone is different and everyone is after money. So why are we suprised that the drug companys are out for money? Everyone is.

  107. Rose Lunn says:

    I’ve now had FM for 30+ yrs. the lack of support from drs, esp. before FM was ‘real’, lead to mental breakdowns! The first dr to diagnose me said it was emotional,go back to my psych dr. Too many drs will only do the very least possible in the 15 min. you are given. Thanks to Dr. Simon and his group – finally found a regimen that worked – doesn’t incl. those 3!

    • Lou Robertson says:

      I too suffer from Fibro.
      Could you please tell me the regimen you found that helps.

      I don’t like taking pain meds either.

      Thanks Rose,

      Lou

  108. lunch@q.com says:

    I gained 30 lbs. on lyrica in 3 months. and Cymbalta almost killed me. Everytime I see these commercials I want to throw something HARD at the TV. DON’T TAKE THESE DRUGS. THEY DON’T WORK. SOME FAT CAT AT SOME PHARMACUTICAL COMPANY IS ENJOYING MY PAIN.

  109. Lynda Garza says:

    I don’t know whether to cry or be mad as hell at my dr. that I drive 100 miles, one way to see because I thought he was the only one who knew how to treat my fibro. I am so disgusted!!!!!! I’v gained 40 lbs. on Lyrica and suffered with awful fog for years.

  110. Lynda Garza says:

    I’ve devloped hypothyroidism since i’ve been on Lyrica and now I have prediabetes..

  111. grace rodriguez says:

    Currently on lyrica, cymbalta. WT GAIN !
    Ambien for at least 20 yrs. I have the lido patches. I was so excited about the Savella esp. since they said no wt gain, but sure enough I ended up in ER in hypertensive crisis. Use ultram or hydrocodone. I have tried several muscle relaxants….
    I live in Tx but am moving to Albuquerque. hoping for better lifestyle changes. LESS MEDS

  112. JIM MORELAND PA-C, MHS says:

    There are many ways to treat Fibro. Reading the response only verifies this. I have seen Dr. L for 12 years and I can say he literaly saved my life using many different regimes of medicine. The use of medicine is dictated by the conditions and in fibro there are many presentations and they are everchanging and a good practitioner is one who listens and adjust treatment. Dr. L “Listens”

  113. Donna says:

    I too tried Lyrica for about 6 months and then my legs started to swell and I had to get off Lyrica. Luckily, I just had 2 days of feeling miserable and had no other problems. I have read everyone’s emails about cymbalta and savella and feel I do not wish to try either one. I try and read everything I can about FMS and CFS and applaud the FMS Network and their newspaper.

  114. Laine says:

    I have been on Lyrica for five years, since developing FM and gradually Lyrica seemed to help the pain in my spine, hips and thighs.
    I also take Tramol (for pain), Naprosyn, Nexium and numerous supplements, magnesium, vit.C, vit. D, zinc, CoQ10 and calcium daily.
    I have a daily headache and have noticed a gain in weight and swelling of the feet. Even a short walk (no hills) aggravates fibro.

  115. Darlene says:

    My doctor had me try many different options. Finally, I asked to try Lyrica. I am so glad I did. I am back at work and functioning at a much more normal level. It hasn’t cured me, but I feel like it gave me my life back. I don’t know how long it will last, and I know it doesn’t work for most people, but I am really hopeful that Lyrica will continue to help me.

  116. Barb says:

    I have had Fibro for 30 years, and have been a loyal subscriber from the very start, I guess in the early 80′s. So first, I want to thank you Kristin, I appreciate your honesty, and loyalty to all of us. I’m disappointed, but not surprised about the Drs. and the big drug companies. And no, I did not get any releif from the three drugs. Lyrica made me suicidal, and I’m lucky to be here…

  117. Eve says:

    Well I have been on Lyrica, Savella and several other medications through my pain doctor and the shrink…they have made my life …livable again…Cymbalta I could not take due to the horrible thoughts I was having on it…I am on other anti depressants now…I am sorry for the others that this combination did not work for you…but I also know that Savella was a drug that came from Germany. So?

  118. Drucilla says:

    Dear Kristen ,I am on the medicines that you speak of in this article, these are no magic bullets. Thank you for your honesty in writing . I know it comes at a price, but you get to keep your soul. I signed up for Lapp’s program, boy do I feel gullible now. I will give any fibromite I meet your info. Thanks again.

  119. Grace says:

    I am sitting at my kitchen table it is 2:30 am I have not taken Lyrica 25mg for two days. My vision since starting that low dose has been blurry. I am so happy I did not listen to the Doctor and Pharmacist who told me to gradually increase the dosage. I have only been on it for a month and only 25 mg. I don’t feel well, so I will not be it taking anymore. I wish I never started.

  120. Stacy says:

    I have taken Cymbalta and Lyrica. They both have helped me to a degree although I do take other meds too. I still deal with a lot of pain and sleep issues among many other symptoms, but without these meds I would be more of a mess. They have allowed me to have more of a life. Before my pregnancy I was able to take more Lyrica, but I cannot get back to the higher dose and I feel all sped up.

  121. Jennifer says:

    Lorna…I had a extremely bad, life threatening reaction to Cymbalta…one of the reactions was the inability to sleep. I was up with no sleep at all for days on end..at the very end of it I couldn’t even physically close my eyes. I went off all my meds on after another until all that was left was the cymbalta. After I stopped taking it I gradually started to feel better. It took me 3 months…

  122. Marilyn says:

    I was on Cymbalta for a couple of years but it only helped the depression. Lyrica did nothing for me and Savella made me sicker than a dog. Has anyone been put on Keppra (Levetiracetam)? A pain management dr I went to last year put me on it and within a day the burning pain was gone. I take 500mg 3 times a day but I also take a narcotic for the overall pain and am on ViiBrid for depression.

  123. Jo-Anne says:

    Tried all these drugs for short period of time thank goodness never forgetting how useless they really were to be used for fibro. All really had horrible side effects felt like hell, never changed systems of fibro at all all should be banned and not used at all for fibro … we are not guinea pigs we are human beings. Were not effective at all.

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