Most Popular

    Sorry. No data so far.


Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Patients Say Fibromyalgia Drugs Make Things Worse, Rest is Best

For the live-updated, interactive version of this infographic, click here.

The FDA has approved three drugs for Fibromyalgia, a condition of widespread pain and fatigue that affects 2-4% of the population. The three drugs are Lyrica, Cymbalta, and Savella. At CureTogether, 1,144 patients with Fibromyalgia came together to rate these drugs, among other treatments.

We were surprised to find that patients rate Lyrica, Cymbalta, and Savella as making their Fibromyalgia worse, not better (see the red part of the chart above.)

The treatments that help most, in the top right corner of the chart, are simple lifestyle changes: rest, heat, sleep, stress reduction.

While this is just one study, it suggests that the relative cost (financial and physical pain) of administering FDA-approved Fibromyalgia drugs compared to free, easy lifestyle changes should be considered when choosing a treatment for Fibromyalgia.

The rest of the results are in the graph above, which is divided into four squares…

- Top right: the most popular and effective treatments (including Rest and Heat)

- Top left: effective treatments that not many people have tried, so they may be options to think about (including LDN and Hydrotherapy)

- Lower right: very popular but not very effective (including Lyrica and Cymbalta)

- Lower left: neither popular nor effective (including Savella and Effexor)

Where did this data come from? This is the result of a 3-year CureTogether study on FibromyalgiaTo thank everyone for participating, we’re publishing this study openly and freely.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Fibromyalgia. Thank you!


You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

AddThis Social Bookmark Button

24 Responses to “Patients Say Fibromyalgia Drugs Make Things Worse, Rest is Best”

  1. janet price Says:

    I have had wonderful pain relief from lyrica with only a few mild side effects.

    what are the dosages these patients who say it makes things worse on?

  2. Les Tarlton Says:

    My name is Les Tarlton. I am an independent researcher whose step mother died from all the medicine doctors gave her to resolve FibroMyalgia. Therefore, I made it my cause to find out what causes it and how to cure it.

    “Fibromylagia is caused by a reaction to high doses of High Fructose Corn Syrup. Simply eliminate the majority of High Fructose Corn Syrup from your diet and the symptoms all go away. They will return as soon as you get concentrated doses in your system again.” ©

    Why does HFCS cause this reaction? I have not discovered that yet, but beleive it may be due to the presence of genetically altered corn in the mix or it may be an allergic reaction to so much corn in one dose.

    Since it goes away so easily with the removal of the HFCS I do not think it will kill you, but will amke your life miserable and may contribute to other things like Diabetes and arthritus.

    Les Tarlton, Independent Statistical Medical Researcher

  3. I agree that the treatments in the upper right quadrant are extremely helpful. Tramadol has been a huge help in my pain management (and I see that it has squeaked into the upper right).

    I’d also like to share with others that my experience with Savella has been entirely positive. If side effects have kept others from trying it, here is how I started: My pain management doctor took the two-week titration pack and cut all the doses in half, so that I ramped up over a month, not two weeks. It then took just a little longer to hit the therapeutic dose. With this dosing schedule, the only side effect I experienced was loss of appetite. What I gained, though, is immeasurable: a lifting of most of the brain fog that had depressed and upset me.

    Thank you, CureTogether, for publishing your research!

  4. There is no difinitive proof that fibromyalgia is caused by high fructose corn syrup. In fact, the medical community still are not sure what the cause of fibromyalgia is.
    I take Lyrica, which is extremly helpful in dealing with my pain. I also take Savella, which is also helpfu in dealing with my pain & depression. Were it not for these two medications, I would not be able to get out of bed and walk everyday.
    I did try Cymbalta, which was of no help. It did nothing for my pain and made my depression even worse. It did not get rid of the suicidal thoughts.
    Every person is different, as is the way a medication works with each person. Don’t be afraid to try anything to ease your pain and suffering.

  5. I desperately need Lyrica for my fibromyalgia. Right now, my mail-in pharmacy has not gotten me my scrip and I am feeling the fibro pretty badly. I keep feeling like things are biting and stinging me. Even though I know it’s the fibro, I keep jumping every time a nerve erupts. I’ve only missed a few doses of Lyrica.

    I had used LDN for the last 8 months for the fibro fog. It has worked like a miracle. My speech has returned at full speed, my vocabulary has come back, and I can finish my sentences without help from my family. I will not be without my LDN again. My doctor prescribes it for me from a compounding pharmacy. I take 3.0 mg right now, but have taken 4.5 most of the time.

    I have taken Effexor for years for depression. I don’t know if this has any effect on the fibro, but it works amazingly well for my depression. I was surprised that it was on the list for fibro.

  6. Thanks for this study. Rest and sleep definitely improve active symptoms, however, my quality of life is better due to Savella. Like Rose, I titrated the medication very slowly; and any side affects have been tolerable. I found relief from fatigue, pain and brain fog. I also find pain relief in yoga and swimming in warm water. We are all different so there is no one answer, but keep trying and don’t give up!!

  7. For Les Tarlton. In 1997 I had a full work-up by researcher Paul Cheney, M.D. At that time he was quite prominent. He tested my blood for all allergies. Avoiding what a person with fibromyalgia is allergic to will decrease symptoms! As you already know when an allergic reaction sets up, inflammation rises it’s ugly head and the “PAIN TRAIN” ROARS DOWN THE TRACK! Some will be sensitive to High Fructose Corn Syrup and more.
    The ALCAT test is the test of choice. Dr. Cheney explained that some are allergic to the base ingredient scratch testing solutions are made from. The ALCAT test takes a blood sample and runs it through a computer, giving you an accurate picture of the patients sensitivities, including chemicals, environmental, food, etc. A LIFE CHANGER FOR ME. A life with much less pain. Falling of the “wagon” can result in excruciating pain, you will know when you have gotten hold of an offending substance. To a life with less pain, worth testing and trying it!

  8. I have been using low dose naltrexone for several months now and have seen a major difference. I was happy to see it on the list!

  9. marsha greene Says:

    I use LDN for my RA but it has probably helped the Fibro also. I’m now looking at Mucinex for the Fibro based on book “what your doctor may not tell you about Fibromyalgia”. It makes the most sense out of anything I’ve seen so far. I’ve also used Release Technique and Emotion Code to deal with the emotional issues and they have helped immensely. I’ve also not had any High Fructose Corn Syrup for over two years and my symptoms have not improved.

  10. I live in Australia and have never had HFCS. So what caused mine???!!! I’m on Lyrica and I do have facial muscle twitches as a side effect, which is a bit embarrassing. I was on 600mg., but have tried to reduce down to 300 with no success. I have to be on 450 mg. for it to be effective. I’m also on Duloxetine, as well as Mobic, for my osteoarthritis. I also have a norspan patch. I’m curious about LDN. My memory seems worse now.

  11. I wonder what the sample size on LDN was?
    I would be tempted to go and ask my doctor about it if nortriptyline hadn’t been so effective (with no side effects). Why this isn’t used in the US I don’t know. I definitely had some improvement with exercise, particularly Yoga, and magnesium, which got me out of the worst of it where I could only really get ~20hrs per week of effective study done, up to about 30. Since starting on nortripyline I’ve gone from 30 to 45hrs of study a week, less pain and a lot less fatique, in 6 months.
    As for the sleep thing, well duh, I’ve known for years that I need 9-10hrs/night to function. Though recently I have been skipping some sleep to get work done and handling it much better than I used to.

  12. Ok, so I can’t find any actual stats on this survey, so I’ll take it with a grain of salt until I see a proper research results summary.

  13. Hi Cathy,
    What kind of stats are you looking for? We’d be happy to provide.
    Alex

  14. Sample size, mostly. I.e. how many people had tried the things listed to rate them.
    Just took the survey and ticked Elavil since nortriptyline wasn’t on there.
    You might want to include melatonin, Alexander Technique, TMG and limiting carbonated drinks. And if you’re going to have adequate sleep etc as a treatment, why not ergonomic equipment etc. For instance I found a kneeling chair to help a lot with my back.

  15. So LDN is surprisingly effective. does anyone know a physician in New England treating fibromylagia patients who will prescribe it?

  16. Hi Cathy,
    Thanks for your reply! You can find numbers on how many people tried each treatment at http://curetogether.com/fibromyalgia/treatments/.
    I just added your suggestions to the survey, too.
    Alex

  17. I am a nurse, and was diagnosed with FM the week the diagnosis criteria was established, although I had symptoms and been treated for chronic pain long before then. Despite excellent care and treatment with the best that Western medicine offered, along with a balanced life and alternative and complementary approaches to assist in maintaining my health, my illness progressed. I wish that curing fibromyalgia was a simple as diet changes, but that has not been my experience. I participated in 3 clinical trials of drugs for fibromyalgia, in the placebo arm for a Lyrica and Cymbalta trial. The third there was no benefit shown, and the drug did not get approved by the FDA. 20+ years after my diagnosis, I was facing disability and my quality of life was very poor. The side effects from the FDA approved drugs were intolerable. Lyrica put me on the fast track to disability, as I felt stoned and could not function at all on the lowest dose available. Cymbalta caused me to develop serotonin syndrome. It is obvious that some of people do benefit from these drugs, otherwise they never would have gotten FDA approval. In a desperate search to feel better, I learned about LDN. As a nurse I had been involved in humor therapy for cancer patients, I knew the value of increasing endorphin production. My doctor had experience prescribing naltrexone, and had no concerns about prescribing it off label in low doses. The morning after my first dose, I was able to stretch for the first time in years. I felt like I woke up in a new body. I’ve had so much more than pain relief with LDN… I’ve gotten my life back. I continue to work full time at 60 and can attest that LDN has done much more to facilitate healing than every therapy combined that I have tried in the past. Perhaps just a handful of people taking LDN responded to this survey, but that does not discount the fact that it is worth considering. Few doctors know about this alternative, since this drug is not a cash cow for the pharmaceutical industry. For an explanation of how LDN works and links to all the research on LDN go to http://www.ldnscience.org. This amazing, cheap drug is working wonders for many autoimmune conditions. Leading doctors now believe that fibromyalgia also is classified as an autoimmune condition, and LDN is the only drug being prescribed for FM/CFS that addresses immune function.

    @ Cathy. Call your local compounding pharmacy to see who is describing it in your area. There are many people on Patients like Me that are taking LDN, and you will find links in the fibromyalgia room if that doesn’t work.

  18. Eliminating HFCS (and even regular corn syrup, sugar, processed foods, artificial sweeteners, salt, etc) has done nothing for my fibro pain. I lost weight, so I’m happy about that, but the pain is still there. Swimming is very helpful for range of motion.

  19. [...] As the newest online patient community, CureTogether launched in 2008 allows people to connect and share information on over 500 medical conditions.  Patients discuss symptoms and rate treatment options giving others the opportunity to discover alternative ways to manage and treat their conditions.  CureTogether publishes some of their findings about how users rank various treatment options and scanning through some of the company’s blog postings, the value of crowdsourced health becomes clear.  For example, 1144 CureTogether users suffering from Fybromyalgia came together to rank the three FDA approved drugs used to treat the condition.  Collectively, it was revealed that two of the drugs actually made symptoms worse while simple lifestyle changes like more rest, sleep, heat, and stress reduction worked the best to relieve symptoms.  (See the full posting here). [...]

  20. Marti Murphy Says:

    Yes, LDN has been a lifesaver for me. I could not find a Dr. interested in learning about it. I order it from the River Pharmacy (an international pharmacy) in Canada (they are online). They send it to me via India!

    It comes amazingly rapidly, and costs $139 for 10 months worth of tablets. I crush one 50 mg. tab and mix it with 50ml distilled H2O. Use brown glass dropper bottles (from Amazon) and dispense 4.5 ml at bedtime daily.

    It does not interact negatively with any Rx meds EXCEPT OPIATES. Gotta give those up while on LDN. Has no side effects. Amazing stuff!!

  21. Alexandra O'Brien Says:

    I found that rest and minimal stress/anxiety help best. Very light stretching, then slowly adding more exercise is also great. But you can’t do too much when adrenaline and endorphins are flowing!

    When I’m in a flare and can’t just make the world disappear, Lyrica helps a TON with the all-over pain and sensory-sensitivities. People who say they don’t feel better or feel worse are upset enough by the side-effects (like weight gain) to not notice the help. When I go down 100mg, wait a few weeks, then go back up I realize how much better I feel within 48 hrs. But then may accept more responsibilities, and then do more, and then feel worse…

    Vicodin is okay to patch over the pain, but is only a patch and allows you to run yourself further into the ground.

    Cymbalta does little for me, as does Savella, as does anything homeopathic I’ve tried, incl. massage.

    But I’m open to trying LDN like I haven’t been open to anything in a while.

  22. Eric Peterman Says:

    Stanford University did a study on LDN for fibromyalgia and found it quite effective. Although the sample size was small and the treatment period relatively short, note that the chart shows fibro symptoms continuing to decline through the end of the treatment period.

    http://snapl.stanford.edu/research/ldn.html

  23. Wonderful, Eric, thanks for the link!!

  24. I’ve been on LDN for about 9 months and no other treatment of combination of treatments has been nearly as helpful. I feel this medication saved my life. I got an Rx from my internist (my rheumatologist was dismissive) and I get it compounded from the original pharmacy that Dr. Bihari used, Irmat Pharmacy. The pharmacy participates in my insurance plan making it even cheaper. Google LDN naltrexone. There are a few reliable websites who have doctors and patient advocates available to answer your preliminary questions.

Leave a comment or question