The National Pain Report recently released the results of its fibromyalgia survey examining treatment effectiveness and other questions. Almost 1,500 people participated.
(Please note that the percentages in this table are different from those in the National Pain Report Survey. I used the number of people who tried each treatment to get the percentages. I divided the total of number of people who tried each treatment into the number of people the treatment helped a lot, helped somewhat, etc., and then multiplied those numbers by 100 to get the percentages.)
The Big (Little) Three
| Drug | Helped Alot | Helped Somewhat | No Effect | Side Effects Prevented | Total Tried | Percent Tried |
| Lyrica | 9.6% | 22% | 20% | 42% | 1133 | 79% |
| Opioids | 29% | 47% | 11% | 13% | 1085 | 75% |
| Cymbalta | 9% | 25% | 24% | 43% | 1009 | 70% |
| Savella | 9% | 13% | 29% | 49% | 375 | 26% |
| Medical Marijuana | 55% | 30% | 6% | 9% | 380 | 26% |
| Low Dose Naltrexone | 9% | 18% | 42% | 31% | 234 | 16% |
The survey suggested that people with FM are, for the most part, getting access to the FDA drugs approved for fibromyalgia. Almost 80% of the respondents had tried Lyrica and 70% had tried Cymbalta.
Getting access wasn’t the same as getting much relief, though. Only 9% of the people who tried them found that Lyrica and Cymbalta helped a lot, and only 22-25% found that it helped somewhat.
With only 26% of respondents having tried it, Savella, the last of the big three, isn’t getting around as much, but it didn’t appear that most FM patients were missing much. Only 9% of respondents found that Savella helped a lot and 25% felt that it helped somewhat.
Side effects were problematic for all three FDA approved drugs with from 40-50% of respondents stating side effects prevented them from using them.
The news on the FDA approved drugs was not particularly good but the future may provide better possibilities. A hopefully more potent and safer form of Lyrica is currently in clinical trials. Several other upgrades to drugs used in FM may be approved over the next couple of years as well.
Opioids More Effective Than FM Drugs
Opioids have gotten a lot of flack recently, but this survey suggests they’re working better for FM patients than the FDA approved drugs. With a whopping 76% of respondents stating that opioids had helped either a lot (29%) or somewhat (47%) the opioids were far more effective than any of the three FDA approved drugs.
The low percentage of FM patients (13%) with significant side effect problems suggested they were safer than the FDA approved drugs as well, and that FM patients were using them responsibly.
The higher effectiveness and better toleration of the opioids was a surprise given research findings suggesting that opioids might not work in FM. More people had also tried opioids than any of the other drugs with the exception of Lyrica.
A Clear Winner
Medical marijuana was far and away the most effective drug
The clear winner in the treatment sweepstakes, though, was medical marijuana with an astonishing 55% of respondents stating that it helped them a lot and 30% stating that it helped them somewhat. Despite the fact that MM is virtually unregulated and can require considerable experimentation to find the right brand, no other treatments approached its effectiveness. Given these results one wonders how effective a MM based drug aimed at FM patients would be..
Word about MM’s effectiveness has gotten around as almost 80% of the survey participants said they would try MM if they had access to it. With over half the states in the U.S. with medical marijuana programs, though, it’s possible that some may not understand that they have access to it, or are having their access blocked in other ways.
Medical marijuana was the run-away favorite but with only 26% of respondents reporting they’d tried it, it was also one of the least used treatments.’
Movement on the Medical Marijuana Front
There is some good news on the medical marijuana front. Pennsylvania has begun the process of writing regulations for its medical marijuana industry. Louisiana’s governor just signed its MM bill into law. The Illinois senate just sent an extension of the Illinois pilot MM program to the governor.
Congress recently passed a bill that allows the Veteran Affairs doctors to prescribe MM in states where it’s legal, and the DEA, perhaps foreshadowing new, less restrictive regulations, recently upped marijuana production for research purposes this year to 650,000 grams from 21,000 grams.
In April, the DEA stated that it hopes to make a decision on reclassifying marijuana from a controlled schedule I substance to a schedule II substance. Schedule I substances such as heroin, ecstasy and yes, marijuana, have, according to the government “no medical use and a high potential for abuse”.
That designation has tied researchers hands for decades. Jarred Younger recently said it would take all his time to comply with the government regulations needed to study MM. According to John Hudak of the Center for Effective Public Management getting approval for a MM study can take six to ten years. A Utah politician framed the situation well.
“To me, it’s odd that the federal government’s not enforcing its marijuana laws, and yet it won’t allow drug companies and the FDA to see if marijuana can be used productively as a medicine. It’s like the worst of both worlds.”
Meanwhile California – often the tip of the spear in such matters – passed a bill allowing researchers to employ small amounts of marijuana in their studies. The media report put California’s medical marijuana economy – which it called the most advanced in the world – at roughly $2 billion a year.
Currently nearly half the states in the U.S. allow medical marijuana. It has been decriminalized for recreational use in three (Colorado, Oregon and Washington).
The Surprise
Low dose naltrexone has received a great of attention but with only 27% of respondents reporting it helped them a lot or somewhat, it was among the lower rated drugs.
Alternative Treatments
As with most of the drugs alternative approaches to FM (changes in diet, using relaxation practices and exercise) provided moderate help but rarely made a major difference. From 40-45% of the participants said these approaches helped somewhat but only 10% or so said they were really effective. Except for exercise which caused significant side effects in 27% of those surveyed, the alternative treatments rarely produced problems with side effects.
Like most fibromyalgia treatments exercise can help but rarely packs a major punch.
It appears that the dozens and dozens of studies done on exercise and FM have gotten the word out; almost 100% of those surveyed said they had tried exercise. Despite being described as a ‘first-line treatment” few experienced a great deal of relief, however.
| Treatment | Helped A Lot | Helped Somewhat | No Help | Side Effects Prevented us | Total Tried | Percent Tried |
| Diet Change | 10% | 40% | 49% | 2% | 989 | 70% |
| Relaxation Practices | 10% | 42% | 27% | 8% | 1,106 | 77% |
| Exercise | 8% | 46% | 20% | 27% | 1407 | 98% |
Conclusion
The National Pain Report survey documented much of what we already know and provided some surprises. The FDA approved drugs for FM provide relief for a relatively small number of people and really powerful relief for only a few.
Medical marijuana continues to shine in the National Pain Report surveys. An out of date federal designation continues, however, to severely limit medical research in the U.S. With medical marijuana allowed in half the states of the U.S., it’s hard to see how the feds can keep classifying the drug as having no medical use. The good news for the fibromyalgia community is that over time more and more FM patients will likely have access to a treatment that can apparently work quite well.
The opioids surprised with their relatively high effectiveness ratings and common usage. Relatively low problems with side effects suggested that the feds have little to worry about opioid abuse in this group.
Low dose naltrexone, surprisingly, was rated less effective than the FDA approved drugs.
Future FM drugs will hopefully provide more relief.
- The 1,000 Patient Fibromyalgia Study
- The Future Fibromyalgia Drugs?
- Medical Marijuana Resources
- National Pain Report Fibromyalgia Survey
IVE ALWAYS KNOWN THIS ABOUT MARIJUANA. WHAT A SHAME HALF OF THE USA STATES ARE STILL IN “THE DARK AGES”. ESPECIALLY THE SOUTH…..
The South seems to insist on remaining in the Dark Ages, passing laws on all fronts to ensure it.
Javen, One step at time is the way this will be accomplished.
We must as I am sure you know be our own advocate, I myself have discussed Marijuana as a treatment with my Doctors for a few years, they are well aware as soon as it is available I want a script. ( Living PA it is about 18 months away ).
Thanks for this information, Cort. I did a Google search to see if NY State even has a medical marijuana program, and it does. When I looked at the slide show at one site on the 15 conditions that are covered, I was shocked to find that included were:
* severe or persistent muscle spasms
* severe or chronic pain, and
* neuropathy
The other listed conditions are illnesses like cancer, MS, spinal cord injury, ALS, etc
However, I would have to find a doctor willing to prescribe it for me, I guess, since I KNOW none of my doctors would even consider it. They all prefer the pharmaceutical route, unfortunately. I’ll do some more research and see if there’s a route for me to possibly get it.
As always, appreciate all your great research and work bringing us all this information!
Cheers! Judith
I hope everyone will keep in mind that most people , I don’t care how sick are not going to admit that diet and exercise helped them. I can tell you for a fact that diet and Yoga and upping my Probiotics to 3 times the amount helped me.If I go off of any of these , I can tell a difference. Also B-12 injections and Immune Globulin only have cut back on the immune Globulin due to the mfg change. Diet , Diet, and controlled Rest.NO Sugar!!!!
I’m a member of facebook groups for FM, and the ones who believe that diet change and exercise has helped them, can’t shut up about it, and bring it into every discussion.
Diet, maybe can help Fibromyalgia in the same way a good shower helps you. Clean up your body, get all the crap out of it. Sure, you will feel better!
How do they justify exercise?
I have had this for over 20 years. A former athlete, I was beridden for four years. I never thought I would get out of bed.
Most days, I feel accomplished if I can make it down three flights of stairs to the mailbox.
Exercise, takes me cow, fast. It sounds cruel to suggest this as a cure.
Please explain:
-mfg change due to immune gobulin
-Controlled rest
Diet. List foods to avoid and foods and other that help with pain and/or inflamation.
Many thanks
about 4 months ago I went to a basically gluten free, aspertane free diet, nitrate free. I am amazed at how it has reduced my pain level. Really amazed. I also increased my protein intake, women are supposed to take it like 48 gms of protein a day. I was lucky to get that much in a week b/c I don’t like meat much & allergic to seafood, eggs, & cheese my favorite food causes a flareup. Increased my nutrient rich foods ie fruits & vegatables, I have also lost almost 20 pounds in 3 months. I have not been able to loose weight even though I didn’t eat much. My neurologist also started me on amantadine for energy. (it’s an antiviral that sometimes helps people with MS..they are still up in the air about that diagnosis) Not sure how/ why works, just thanking God it does. I find if I “cheat” and eat a little bit of gluten like a pasta, I have a bad day following.
Congratulations on your success and good luck with the amantadine – you have a good neurologist…
I’ve never heard this.
Don’t be fooled about Illinois — since driving w/ any marijuana in your system is in violation of DWI laws, any pilot program is/would be totally meaningless to me (I have ME/CFS, not FM) or anyone without enough outside help that they need to drive to live.
Uh. Mm is legal in Illinois. If you have a prescription and/or a MM card, you are ok in Illinois. You cannot leave the state.
I don’t agree with the comment that most people will not admit diet and exercise helped them. I would be THRILLED if they helped, and would be sure to share that with other patients.
I agree with you Nancy. I have tried all sorts of diet and exciting changes. I actually have always eaten healthy and stay as active as I can. But I still have fibromyalgia and it still gets really bad at times. MM has helped the most. I’ve had this thing for 36 years. I’ve tried just about everything!
I agree! I tried an elimination diet when I was first diagnosed with RA and fibromyalgia, and I would have been so happy if eliminating anything from my diet had provided me with any relief. Most of us are desperate to feel better, and it’s insulting to suggest that we wouldn’t “admit” if something helped us.
Yes ! Why wouldn’t we admit if something helped???? We are sick, not ignorant !!?
Diet and non-aerobic, stretching and gentle movement exercises have helped and the diet helped immensely (gluten free, milk, low sugar, and as fresh as possible).
What about cannabinoids like cesamet or nabilone. That’s what made a big difference in lowering my pain. Is it available in the States?
I believe that nabilone is available but others would know better than me.
Where did the numbers for the first table come from? The numbers in the first table don’t match the numbers from the Survey Monkey link. For example in the table in this article it shows that 55% of respondents say that medical marijuana helped a lot but on the Survey Monkey link it shows just 14.49%.
Yes, original article stated that 14.49% of all people in the survey found that medical marijuana helped them. The NPR divided the number of people who tried MM and found that it helped them a lot into the total number of people who took the survey.
The survey, however, stated that 1,062 people never tried MM. I subtracted 1,062 from the total number of participants (1442) = 380 and then divided the number of people who said MM helped them alot (209) into that number (x 100) = to get the percentage; 55% of the people who actually tried MM said it helped them a lot. I did that same process for every treatment. Hopefully my math is right (!)
Thanks Cort! I won’t pretend that I could follow that completely, but I trust you. I know that you are trying to put the most honest and accurate information out there for all of us.
Good work on the math adjustments Cort. Wish all journalists, including those on dailies, would delve into the numbers as in your example to get the most meaningful reading.
Cane sugar gives me itchy zits on my upper arms and back that when scratched off bleed into my clothes. (When I had “severe cervical pre-cancer,” I had itchy forearms.) Icing sugar gives me a mouth canker. Anyway, it’s hard to avoid cane sugar, which is in almost every processed food. I can’t digest meat, and wake up in the middle of the night after eating it. Two glasses of cider, and my lips go noticeably numb. Anyway, I’m convinced diet makes a difference, as in, if I don’t adhere to a certain diet, I get worse, but diet doesn’t necessarily make me better. There’s a difference.
I am confused about whether medical marijuana must contain THC to help with Fibromyalgia pain. I asked my dr. about using it to replace Cymbalta, Lyrica and Gabapentin. One of my concerns was travel to states where it is not lawful for medical use. Another concern is being able to drive a vehicle and go about daily activities if THC is a necessary component. I would like to see these issues addressed as well as what types of products are available.
There is CBD oil. It has very low to null THC and is being used by people for seizures. It does not have the same psychoactive effects as the THC. Google Charlotte’s Web. Also, some people eat the plant raw or in smoothies. It is the heat that activates the THC to give the psychoactive effects. I have not tried either yet but looking into.
THC is important especially for fibromyalgia. There are different ways to take it. If you’re concerned about the effects of driving, take it
at night. Once you’re onto how it works for you you’ll be able to dose yourself for the best outcome.
I am convinced enough about medical marijuana, to be willing to try it.
But the problem with “exercise” is that it is so hard to get it right. I regard it in my case, as having “helped a lot” once I got it right, and in fact I regard it as the essential ingredient in multidisciplinary protocols; it makes the difference with other simultaneous treatments effectiveness. I spent 20 years not getting it right, so I understand everyone’s skepticism.
I think the best guide to finding the right intensity, is using a heart rate monitor and aiming for “fat burning” intensity – 65% of theoretical maximum heart rate. This avoids lactate production from exercise (and a low carb, ketogenic diet avoids it even more), while still stimulating the flushing, mobilising effect of exercise on muscle tissue.
Also avoid exertion of “strength” even if for short duration that does not push the heart rate up much. Anything that would be regarded as a “muscle strengthening” routine should be avoided. I believe these exertions cause formation of trigger points in the muscles involved, and damage to fibers that does not heal like a normal person would.
I would argue that the association of exercise with “does not help” responses, is because like me for 20 years, FM sufferers have not discovered “the narrow door and straightened way” to getting it right. It is SO easy, when you are in the full grip of FM debilitation, to “overdo it”. There have been stories told on this blog, of extremely debilitated cases where the right exercise has been nothing more than gentle movements in a hydrotherapy pool. In my own case, I found that initially, even walking at a normal pace was too intense, I had to take it very slow. Swimming was almost impossible to do gently enough, but aqua jogging was ideal, with the flotation aids eliminating a lot of the stress of “staying afloat”.
I said a lot more on this thread a couple of days ago:
https://www.healthrising.org/forums/threads/have-doctors-gone-too-far-on-exercise-for-fibromyalgia.4457/
recreational marijuana is also legal in oregon.
Elizabeth was unable to leave her comment but thankfully passed it onto me. My apologies for the problem Elizabeth
She wrote:
“From my own experience, certain narcotics do work for the muscle and and joint pain. Moreover, they clear up the brain fog for 2-3 days with a very small dose.
When in a crunch (no longer can stand the endless pain), I will take a half dose of Vicodin 5mg/325mg and it provides me with the ability to take care of pending matters.
Anti-inflammatories work well with it, but, unfortunately, I have Congestive Heart Failure and these wreck havoc on the the heart. (I have both diastolic and systolic CHF).”
Not surprising to see medical marijuana at the top in terms of effectiveness with a lower incidence of side effects. A clear winner.
Anyone taking an opiate should be careful not to combine it with a benzodiazepine (such as Klonopin or Ativan). Those are a particularly dangerous combination of drugs.
http://www.desmoinesaddictiontreatment.com/rehab-guide/dangers-of-using-benzodiazepines-with-opiates/
Personally I know my cousin who went to rehab for addiction to combination of hydrocodone and Xanax. His physician told him that by comparison use of cocaine is “not that bad” to give some perspective.
Obviously the pharmaceutical world gets an “F” or a “D” at best in the low efficacy of their drugs combined with high incidence of side effects.
Clearly the states that are prohibiting use of medicinal marijuana need to reevaluate this policy (and add some scrutiny to potential dangers of some pharmaceutical drugs).
All of these articles have saved me a lot of hecheadas.
Hash cookies seem to help with pain a bit. Not much though
Pleeeeezzzz..as with all other diseases the “big decision” makers should live with fibro and chronic fatigue for ONE day. Their tune would change. I have lost 25 lbs. take cymbalta and walk 2 miles a day. Surprise! In a fibro crash mode today. Could not get out of bed until 6 pm today and I haven’t eaten because I cannot get up to cook for myself. I don’t want to hear about your long term research!
Live with this and you wish God would take you.
I understand what you are saying. And live with it all your life and become totally frustrated and sick of trying everything in the book. Sick of getting hopes up or dealing with this poison they push on us.I wasn’t this bad until after my hist.. Then the roof fell I . No one is working with hormones anymore. One doc did and got the hormone pellets almost perfect. They were plany based and except opiods the best treatment ever. But then insurances stopped paying for them, and they are too expensive for most of us to pay out of pocket. Hummmm maybe we could get refunds from all the bad drugs we put in our bodies so
we could aford the pellets.M@ybethey got too close to really helping us and big pharma got scared?!?! Anyway now that I had to stop them I am pretty much back to house bound and miserable. But I did great on the hormone pellets. The out come was, on pellets, I would have at the most 1 to 2 Maybe 3 days a week where I was down. Without the pellets I am 6 to 7 days down. I used them for 7 years. So that counts for something….I have left this message or one similar at least 5 times.. No
response from anyone that have I been made aware of. Why. Anyone ?? and yes, I know hormones are fround upon, but so far no one else has done as well with finding help.
Maria I feel the same way regarding divine intervention to end the pain. I know mm works I used it for six months risking going to prison here in backwards Texas. It’s so risky to buy mm off the street or by mail. I could take three good hits of a sativa called Bluedream which is 80% sativa and 20% indica. The sativa would stop my pain for two days. We won’t ever see mm in Texas, not in my lifetime I’m 47. When my wonderful Wife retires were moving to a mm state so I can have some semblance of a life. She misses her pain free Husband who good do things around the house and walk the dogs. Instead, I’m on Tramadol and Soma which barely touches the pain. I don’t want a stronger opiod to cause more constipation.
I completely understand. I, too, walj 2 miles a day. And here I am on the couch, sore, tired, my thighs are on fire. I take gabapentin, have been for the better part if 17 years. I tried lyrica and felt great, then woke up one morning swollen all over, so back to the gabapentin. It seems to flucuate in its effectiveness. Anyone else have this problem?
I have had FM since 92 with it gradually getting worse until now it is even difficult to ride my motorcycle which is my greatest enjoyment at 70. I have tried Lyrica two times. The first put me into the most suicidal depression I have ever experienced. Fortunately I was away from home and did not have a gun with me. The overpowering desire to end my life upon waking up in the morning was incredible and one of the most shocking experiences I had ever had. Of course I immediately dropped it. At the time I was also trying a new antidepressant which I can not recall the name now. The doctor though it might have been that or a combination that caused such a profound side effect. I also dropped it and returned to a generic form of “Lexapro” an old standby that I have been on for a long time. It doesn’t seem to help much but is the only antidepressant I have ever used that did not have serious side effects. My first experience with the Lyrica was six years ago and with the recent opioid cut backs the doc suggested I try Lyrica again. This time I did not have the suicidal impact of the past but the sedating impact was so profound that I was sleep walking and could not seem to wake up completely during the day so I got off of it again. I am stuck with the use of Oxycodone 10 mg up to six a day. It works but only for a short time and it is hard to make it from one dose to another. Very depressing that anything I do causes such extreme fatigue that it debilitates me sometimes for days at a time. I had hoped that as I aged it might actually improve but it just isn’t so. I hope others have better luck with this. Before I had to retire at 55 I could type up to 100 wpm and wrote all the time. Now it takes a good day to write something like this and most of the time it is just hunt and peck. I hope someone finds something soon. I live in Oregon where the mm laws are relatively open to it’s use but I can not bring myself to use it. I work in Law Enforcement for 35 years and never even dreamed of using anything like mj and find that I still have very subconscious and conscious resistance to any thought of using it.
Cort:
I was so impressed by the Prindgen Trial. I have the type of Herpes they talked about and the symptoms I had when a cold sore erupted are similar, yet much milder, than Fibromyalgia symptoms. I would get so tired and achy. Joints ached so badly. I take Acylovir to treat my cold sores which keeps the symptoms down to just one day now. I was very excited at the promise of the combination of an anti viral and an anti-inflammatory drug. However I am on coumadin for a blood clotting disorder and can’t even have an aspirin, much less an NSAID of any kind. I’m wondering if this would eliminate this combo of drugs for me. Thanks!
Diet and exercise have helped me greatly along with supplements like tumeric. Where’s the data on that. Oh, no big pharma money to be made. I’ve been uneasy about drugs like Lyrics which seem to be a catch all for so many things and have many side effects including weight gain which can’t be good for joint and overall health.
More study is needed but the use of options is a dangerous option
I agree.And remenber, this is not a new diseas ! It has been around for ever. This and me cfs !! At this point we just need something for pain while every one is playing in their labs. Creating all this junk that is killing us . But don’t worry, there are going to be so many suicides from loss of pain meds that we won’t need the other meds. Just Join in and listen to any support group. And many like me have me cfs added into the equasion, and shingles erupting more times a year than I care to say, since I was 17. Now 64.Plus DDD. I need pain meds. That is first and foremost with many.
Hello friends. I have fibro. I use MM, and it really helps with pain relief. What is literally helping to cure it is by doing liver flushes. I’ve done seven so far, and every time I do one, I release hundreds of gallstones out of my liver. Read The Amazing Liver Cleanse by Andreas Moritz.
Wow…Did you know you had gallstones before that?
I tried edible medical marijuana, but it made me feel terrible and unable to function. I have severe M.E. as well as fibro. Does anyone have any advice for me? Do I need to trya bunch of different types?
I would start at a very, very low dose. Just a little bite of a candy worked well for me. If you take too much you can get really walloped.
Brenda Flippen, I have also found a doctor who prescribes hormones. He does not use a pellet but a compounded vaginal cream. It costs approximately $50 per month and is not covered by insurance. So far, I’ve not experienced much improvement and am considering using that money to obtain quality CBD oil (yes, I’m in the south, so no MM). I have access to opiates, but build up tolerance too fast resulting in increased pain. I wish that more money would be allotted to finding the cause(s) of Fibromyalgia instead of throwing drugs our way that may or may not work and may leave us more impaired than we were originally.
I believe that one of the biggest problems finding the right treatment for FM and ME/CFS, which I have both, is that everyone is different. Some people have low levels of B-12 and need more, others are low in other vitamins and minerals. Many of us also have other health issues to complicate things more such as IBS or/and Mood, Anxiety and other Psychological disorders. It truly takes doctors to look at each patient as an individual and treat them with what they need. Granted this is not good news for the Community of us who are plagued by these conditions. It does however make you really think. We need to find the right diet for us. A food, vitamin or nutrient that one person needs to increase may not be the answer for us. It is a wicked puzzle that we each have to figure out with the help of our doctors and the researchers finding new treatments. That is why we see different medications working for different people. MM may work for some, but I have an allergy to it. So that will not be the answer for me. Try different foods and different exercises or just movements to find what makes you feel better. This is only one woman’s opinion, but my experience tells me it’s a good one. I wish everyone good luck and many good blessings in finding your way to feeling better, maybe not perfect but better. 🙂
“With over half the states in the U.S. with medical marijuana programs, though, it’s possible that some may not understand that they have access to it, or are having their access blocked in other ways”
Unfortunately many of the states who have mm programs do not allow its use for chronic pain- many are exclusively seizures