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|
|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.
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
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).
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.
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.
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|
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
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.