Reprinted with the kind permission of Cort Johnson and Heath Rising.
What can you expect if you have fibromyalgia? Do most people tend to get better or worse? Do people with FM ever recover and, if so, how many people do?
Several studies have examined the progression of fibromyalgia over time. Bearing in mind two things: (a) studies report tendencies which may or may not apply to any one individual, (b) that studies may reflect the practices of the doctors in the areas the participants in the study derived from, and (c) the studies probably use doctors which do not incorporate many alternative methods into their practices, your results may vary. With that, let’s look at what the studies suggest about the average person’s future with fibromyalgia
The most recent study – which took place in the U.S. – followed 76 FM patients from 20 sites in five regions (West, Midwest, South, Northeast) over two years.
Fibromyalgia Outcomes Over Time: Results from a Prospective Observational Study in the United States. Caroline P. Schaefer, Edgar H. Adams, Margarita Udall, Elizabeth T. Masters, Rachael M. Mann, Shoshana R. Daniel, Heather J. McElroy, Joseph C. Cappelleri, Andrew G. Clair, Markay Hopps, Roland Staud, Philip Mease, and Stuart L. Silverman Open Rheumatol J. 2016; 10: 109–121.
The participants answered a variety of questionnaires (Brief Pain Inventory-Short Form (BPI-SF), modified (self-report) American College of Rheumatology (ACR 2010) Criteria, Fibromyalgia Impact Questionnaire-revised (FIQ-R), Medical Outcomes Study Sleep Scale (MOS-SS), 12-Item Short-Form Health Survey, version 2 (SF-12), and Work Productivity and Activity Impairment (WPAI) Questionnaire).
The researchers also learned how many doctor, hospitalizations and emergency room visits were made and what prescription medications, physical treatments, nonprescription medications, and herbs, vitamins, or other pain supplements were taken over the last three months.
The fact that over 80% of the patients were on some sort of prescription pain-killer both at the beginning of the study and at the end spoke to the high pain levels people with FM typically experienced.
Opioids Stand Out – Despite the fact that three drugs have been FDA-approved for FM – none of which are opioids – opioid pain-killing drugs were easily the most used pharmaceutical drug with about 30% of the FM patients both at baseline and two years later using them. A weaker opioid, tramadol, is often suggested for FM but more FM patients were on stronger opioids. Not only were more patients on strong opioids at baseline, the percentage of patients using strong opioid pain-killers actually increased over time. This, of course, indicates the important role these drugs play in pain management in FM – and speaks to the concerns several ME/CFS/FM doctors have that increasing restrictions on these drugs will leave some without an important means of help.
It also presents a worry as the chronic use of opioid drugs can actually increase pain sensitivity in some individuals. Paradoxically, some people with FM feel less pain after coming off opioid pain-killers.
NSAIDS were the next most commonly used drug and muscle relaxants were fourth. The fact that the use of both these drugs declined significantly over the two-year span of the study suggested that many found them not particularly helpful.
FDA Approved Drugs Not So Popular – Antidepressants of the SSRI class (Citalopram (Celexa), Escitalopram (Lexapro), Fluoxetine (Prozac), Paroxetine (Paxil, Pexeva), Sertraline (Zoloft) were the third most used drugs, tramadol was the fourth and SNRIs (Milnacipran (Savella), Duloxetine (Cymbalta) Venlafaxine (Effexor)) were the fifth most used drugs. Anti-epileptics (presumably Pregabalin (Lyrica), Clonazepam (Klonopin) and Gabapentin (Neurontin) were the sixth most used drug. Only about 15% of the FM patients used anti-epileptics.
A drop in the use of herbs, vitamins and other supplements from about thirty to about twenty percent of patients suggested that about a third of those trying them did not find them helpful either. On other hand, about 2/3rds of FM patients using continued using them.
Meanwhile, more FM patients (30-38%) began receiving physical therapy over time.
Little Progress in Twenty Years
The fact that their employment status, household income, BMI, and number of disease comorbidities did not change indicated little movement was made in these issues.
There was some good news as well. In general, FM patients reported statistically significant improvements in their symptoms (modified ACR 2010 Criteria) and how much pain interfered with their functioning (BPI-SF Pain Interference Index) and in their sleep (MOS-SS Overall Sleep Problems) were observed.
While improvements in pain were made, they were, however, relatively small with only about 15% of patients reporting a more than 2-point improvement in pain. Plus, even after the improvement, pain levels were still very high and another pain indice did not show any improvement. One could come to the conclusion that many FM patients simply became better at functioning despite their pain. Most patients, however, remained quite functionally impaired.
This study’s strength was its geographic spread; by following patients from 20 different clinics across five different regions, it was able to get a good snapshot of general FM practice. Its weakness was its relatively small sample size and relatively short duration. It was also impossible to tell which clinics were involved from the study.
Other studies, however, have come to similar conclusions. A very large (n=1555) 2011 5-10 year observational study found that while about 25% of FM patients did experience moderate or substantial improvement in their pain, about 35% got worse. In general, the levels of symptoms remained high.
Another study suggested that things haven’t changed much in the last twenty years. Despite the advent of three FDA approved drugs for FM and presumably much improved doctor knowledge, a large 1997 7-10 year study came to a disturbingly similar conclusion: the degree of pain, fatigue, sleep problems, depression, etc. were all essentially unchanged over time.
It should be noted that several studies show that remissions from fibromyalgia can occur. Full recovery is rare but you can find FM/ME/CFS Recovery Stories on Health Rising and other sites.
Because the studies examined whether or not patients met the criteria for FM, not whether they recovered or not, recovery rates from FM were not reported. However, the small percentage of patients reporting substantial improvements from pain suggests that recoveries are rare.
There are several provisos to these studies. It’s not clear if the practitioners in any of these studies were using low dose naltrexone (LDN) or tracking medical marijuana – two alternative treatments probably not available in many doctors’ practices. Given the low number of FM specialists available, we can probably conclude that they were not included in the surveys either. It’s possible that FM patients seeing practitioners who use a multidimensional approach that incorporates alternative health practices into their treatment regimens do better as well. Studies to determine whether FM specialists or alternative health MDs are more effective at treating FM are vitally needed.
In general, though, these studies suggest that the most FM patients seeing general practitioners or rheumatologists can hope for are modest improvement in pain and sleep. Much, obviously, remains to be done.
Some treatments may be on the way. An improved form of Lyrica is in Phase III trials and Dr. Pridgen is raising money to fund his Phase III antiviral trial.
High Burden of Illness – Low Funding Continues to Plague Fibromyalgia
Recent studies indicate that fibromyalgia places a high burden of illness both on the patient and their family, and on society. At about 50 cents a year, funding per fibromyalgia patient is, however, amongst the lowest at the NIH. Despite FM’s high prevalence and the high illness burden it imposes on patients and on society, the biggest research funder in the world – the National Institutes of Health (NIH) – is still clearly disinclined to study it.
Without more study, however, it’s unclear how FM patients’ lives are going to improve. It’s possible that better treatments could come from advances in our understanding of pain in general, but that’s uncertain. Determining exactly how the pain and other symptoms in FM are generated and creating treatments to tackle them is the best solution.
That’s probably not going to happen for a long time with the funding FM currently gets. The FM community has the numbers; if it can translate those numbers into effective advocacy, it can go far. Given FM’s past history at the NIH (its funding has actually dropped substantially), unfortunately, there’s no reason to expect anything to change absent a strong push from the patient community.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.