The Winning Treatments for Fibromyalgia Are… (Not Drugs)
For the live-updated, interactive version of this infographic, click here.
Imagine being a woman living every day in chronic pain and being super sensitive to pressure or touch on your body. For 2-4% of the population, Fibromyalgia is part of daily existence. The ratio of women to men affected is 9:1, and there is no current cure.
At CureTogether, 376 people with Fibromyalgia have come together to share 1,567 data points about treatments they had tried and how well they worked or didn’t work.
So what are the winning treatments that patients have reported? From the infographic above:
rest, heat, relaxation, dietary changes, and Codeine
The top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so presumably if more people tried these, they would be helped (gluten-free and sugar-reduced diets, codeine).
Treatments in the lower-right quadrant are ones that lots of people have tried but that have below-average effectiveness, so presumably if fewer people tried these, they would be free to find more effective treatments elsewhere (Lyrica, Elavil).
Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. We anonymized, analyzed, and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.
This is the seventh in a series of infographics we’ll be publishing over the coming weeks. Stay tuned and please give your feedback or thoughts on this result in the comments below – or write to me at alexandra@curetogether.com.
Please tweet, blog, or pass this along to anyone who can benefit or is interested in Fibromyalgia. Thank you!
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September 10th, 2010 at 8:53 am
As a chronic pain sufferer but not a fibromyalgia sufferer, these data are tangientially interesting to me. I must say, I think you’ve given dietary changes (avoiding sugar and gluten) more credance than I would have, considering the low number of adherents, especially since, at those low numbers, Savella and Codein appear to have been more effective.
I’m curious about the effect of heat. Heat has no lasting value for me. It works while I’m in the shower but results in higher rebound pain. I actually have more luck with ice packs. (Again, different type of pain.) Also, how do you differentiate rest from relaxation? Does “rest” mean sleep?
I’m also surprised to see no other opioids on the list. Codein can be torture to your guts in a short period of time. I would have thought Tramadol or Hydrocodone would be less destructive.
September 10th, 2010 at 9:49 am
hi,
The use of LDN was the best thing i have ever done!
Mike.
September 10th, 2010 at 10:00 am
This is fantastic so see visually. I plan to print it out and bring along on my next doctor trip.
I have tried lots of things in the high popularity areas (both low and high effectiveness) and very few in the high effectiveness / low popularity area. And the only things that work are those top three – rest, heat, hot shower (I prefer a hot bath). But, the heat and hot bath only last while the heat / hot water is touching my body. Within minutes afterward everything is back to the way it was before the treatment.
It is true, the top three for both areas really do seem to be the best. Which I could live in a hot tub non-stop! But maybe combining these with a few of the less popular therapies I will find more relief, even if only a little more it will help on those days I just can’t take it any more. As for the codeine, I find it is terrible on my stomach. I use perciset (sp?) which does the job as well but makes me sick if I take more than one a day. Marijuana works the best I’ve found(discovered in a trip to Holland – cured my raging migraine as well after taking $100 worth of rescue meds – two puffs from someone I bumped into there – yeah, crazy to see someone you know abroad!! – two puffs and all pains gone, able to continue my tour), but it is not legal in my state yet (and I have no other means for supply). It takes the edge off the pain and lets you think about something other than the pain. It is still there but it seems to become somehow irrelevant allowing me to do menial tasks I was unable to complete previously, like just touring a new country.
September 10th, 2010 at 1:34 pm
Thank you for this report. I have found rest and warm
showers, help for a short time. Some days, I am so tired,
rest is my only option. Cymbalta, has no effect, what so
ever. Massage, the all over soreness would prevent me
from selecting this option
September 10th, 2010 at 2:32 pm
I think doctors still rarely distinguish between various causes of widespread bodily pain. I would expect heat to work well on muscle pain or pain related to lack of circulation, NSAIDs to work on inflammatory pain, diet to work on autoimmune/gluten sensitive arthritis, and anti-seizure meds to work on nerve pain. Physical therapy I’d expect to work regarding improved mobility but not necessarily with pain reduction. I’ve seen people use a ketogenic diet for epilepsy…has anyone tried it for pain treatment?
September 11th, 2010 at 11:23 am
At present I am Cymbalta, which may be making a minimal difference in my FM symptoms. Sleep is still a problem due to headaches; I sleep with icepacks on my neck. I take Soma, some Darvocet, Celebrex, Xanax when needed, Tylenol PM. No combination of these seems to be doing much. I am searching for a Dr. who will help me try LDN. If I don’t find one within a week, I will mail order from Canada (50 mg) and have a pharmacist friend teach me to make a suspension in distilled water, which I will use with a baby liquid med. “syringe”.
September 11th, 2010 at 11:29 am
One more very important thing slipped my mind (as so many things do, these days!). My husband is a medical massage therapist and he works on my neck, shoulders and back three times a day. Highly recommended!
September 12th, 2010 at 7:15 pm
I got overnight relief from LDN – and it has continued for more than a year now. Cymbalta and Flexoril just knocked me out, and one of them caused central apnea. I hurt less, but that just isn’t much good if I’m too wiped out to function. With LDN I function beautifully, sleep better than I have in decades without sleep aids, and if I do start to hurt, heat takes care of it for the day. I can now exercise (before exercise exacerbated the pain) fairly vigorously and things just get better.
Sue
September 12th, 2010 at 9:39 pm
what is LDN?
September 13th, 2010 at 11:02 am
Thanks for the question! LDN = Low-Dose Naltrexone, and we’re starting up a trial on it at CureTogether. More details here – http://curetogether.com/blog/2010/09/13/new-study-low-dose-naltrexone/
September 13th, 2010 at 1:23 pm
Hi, I have suffered from Fibromyalgia and trigeminal neuralgia for the past 11years. I have tried just about everything but nothing helped at all. I was so ill I didn’t want to go on living. My love for my 4 children gave me the courage to get through each day. 3 weeks ago I found a Doctor here in Ireland who put me on LDN. It’s wonderful. I can now look forward to having a future and hope to be able to enjoy some quality time with family and friends. I have so much more energy during the day and my mood is great. I still have pain but nothing like before. The only down side is that I am not sleeping at night but I feel in the past few days that too is improving. I think this is an amazing drug and I feel it is very safe as the dose is so low. You just have to make sure it doesn’t clash with some pain killers. I am not taking anything else just a few vitamins and a sleeping tablet. I feel so sorry for people who continue to live with pain and could benefit from this drug. I am spreading the good news about LDN to everyone I know with Chronic pain. I am very happy to have found this site and to learn from other peoples experiences
September 19th, 2010 at 6:10 am
I live in Ireland too and have Fibro and CFS. Can you tell me the name of the Doctor who prescribed LDN for you. I just want to feel well.
September 21st, 2010 at 10:59 am
Phil,
Go to DrEdmund o Flaherty
Stillorgen road
Stillorgen
Tel 01 2881425
Mike.
September 22nd, 2010 at 2:43 am
Hi, OMG am so delighted to actually find a site that mentions Ireland and the name of a doc who will prescribe LDN. Im at my wits end at the moment and can totally associate with Anne when she says its only the love for her children that get her through. Before I stumbled on this site I was just having a cry and thinking that I didnt know if I could go on living- I so hate this disease and the life it has robbed from me, I consider Im just existing for the past few years and not living at all, Its very hard to remain opptomistic and positive all the time when basically you feel like crap! Im gonna give this doctor a call and see if he will see me. Fingers crossed!!
November 12th, 2010 at 7:34 pm
Recent research links fibromyalgia to mast cells, in which case agents that block mast cells might be effective for fibromyalgia.
link and comment: http://painmuse.org/?p=369#comment-46649
julie gregory says:
August 8, 2010 at 10:10 am
Great research. I have also linked degranulating mast cells to all of the conditions you have listed, with the exception of TMJ. I am very interested in your musings on stabilizing mast cells.
I am DXed with a condition called mast cell activation syndrome/disorder MCAS/MCAD by Dr. Marianna Castells at Brigham & Women’s.
I must take daily doses of H-1′s (zyrtec AM/atarax PM), H-2 (ranitidine), and singulair to prevent symptoms. With these meds, I am practically symptom free. Without them, I am incredibly ill including anaphylactoid episodes despite the fact that I have NO allergies.
August 7th, 2011 at 1:42 pm
Hi All, Based on the info here on LDN I visited Dr Edmund 3 days ago. I’m on 2 mg tonight and looking forward to seeing any benefits. I have fibromayalgia but mostly feel like I am poisoned a lot of the time. Trying to work is hard but the kids and hubby are fab so thats a plus!! Does anyone else have cracking and clicking in their joints?
September 20th, 2011 at 11:00 pm
how to get to sleep, sleeping problems, sleep insomnia, sleep…
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