By Donna Gregory Burch
At one time or another, all of us with fibromyalgia have wondered (and maybe even feared), “Is fibromyalgia progressive? Are my symptoms going to worsen over time?”
Based on current research, fibromyalgia doesn’t appear to be degenerative, but I know a lot of us who live with this debilitating condition – myself included – question that conclusion. For many of us, it definitely feels like it’s getting worse! Without a doubt, my symptoms have advanced and my quality of life has declined since I became sick a few years ago. I know too many of you have had the same experience.
Since the research is still emerging, I thought I would pose the question to a few noted fibromyalgia specialists and researchers and get their opinions on the issue: Is fibromyalgia progressive? I think you’ll find their responses both diverse and interesting.
Dr. Dan Clauw, University of Michigan Medical School’s Chronic Pain & Fatigue Research Center, Ann Arbor, Michigan
“It is very common for individuals with fibromyalgia to progressively worsen over time, but that does not mean the disease is progressive (which I do not believe it is). Most of us believe that the slow gradual worsening of chronic pain patients over time is due to downstream consequences of poorly controlled pain and other symptoms, wherein individuals then progressively get less active, sleep worse, are under more stress and unknowingly develop bad habits which worsen pain and other symptoms.
“In this regard any chronic illness is progressive if the disease is not well managed. If we leave rheumatoid arthritis or gout untreated for decades, these are progressive disorders, but if we treat them effectively when people initially develop symptoms, then they are not. Individuals with fibromyalgia whose symptoms are well managed will not typically worsen over time.”
Dr. Kevin Fleming, Mayo Clinic Fibromyalgia and Chronic Fatigue Clinic, Rochester, Minnesota
“In short, no. Fibromyalgia (FM) is felt to be a disorder of pain processing in the central nervous system, especially the brain. FM symptoms wax and wane, and can progressively worsen in some patients, but FM is not progressive in the medical sense that it is non-deforming, non-degenerative and nonfatal (unlike, for example, lupus or Parkinson’s disease).
“The longer one has had pain symptoms, the greater the pain has been, and the more non-pain physical symptoms also present, the more likely the symptoms will remain chronic. But symptoms can and do improve, permitting normal daily function, even if pain symptoms never fully resolve. Although the origin of FM remains unclear, fibromyalgia is likely in part a response to environmental factors in genetically predisposed individuals.”
Dr. Randall Gates and Dr. Martin Rutherford, Power Health Rehab and Wellness Center, Reno, Nevada
(Note: Drs. Gates and Rutherford have a YouTube channel where they regularly discuss the treatment of fibromyalgia and its common comorbidities. In my opinion, it’s some of the best fibro-related material on YouTube.)
“For a minority of fibromyalgia sufferers, the pain and associated symptoms can indeed improve without treatment. This was documented in the recent publication of the Journal of Pain Research. However, such improvements are not the case for the majority of those with fibromyalgia, and in our observation, fibromyalgia does become progressively worse over time.
“Likely the gradual decline seen with fibromyalgia is due to the chronic, autoimmune and or degenerative nature of the underlying causes associated with the condition.
For example, upwards of 50 percent of fibromyalgia sufferers have small fiber peripheral neuropathy (where for all intents and purposes the pain nerves degenerate), and this is identified as a peripheral generator of pain.Other associated causes and factors of fibromyalgia include abnormal pain receptor transmission (seen in upwards of 80 percent of those with fibromyalgia), a form of autoimmune thyroid disease referred to as Hashimoto’s thyroiditis, non-celiac gluten sensitivity, post-traumatic stress disorder secondary to childhood abuse and insomnia.
“In addition to the myriad of causes, the majority of fibromyalgia patients do become progressively worse as their pain results in deconditioning. Though told to exercise, the pain can prohibit this, leading to less tolerance for activities of daily living.”
Dr. Carmen Gota, Cleveland Clinic Fibromyalgia Management Program
“All patients present with the same symptoms, but each patient has his or her own fibromyalgia ‘fingerprint,’ meaning that beside the diagnosis of fibromyalgia lie a number of risk factors or aggravating factors that need to be identified and targeted. These include genetic predisposition, certain personality types, various emotional, physical or sexual stressors, as well as sleep disorders, lack of exercise and mood disorders.
“A study done on 1,555 patients with fibromyalgia from various rheumatology practices in the U.S. by Brian Wallitt from the National Institutes of Health found that only around 10 percent of patients get much better. Most patients continue to have a high burden of symptoms from fibromyalgia.
“Fibromyalgia can be a disabling condition, causing people to lose their jobs, income and causing a lot of stress on families. In patients in whom the condition is not recognized, and the factors behind fibromyalgia, such as lack of education, lack of exercise, severe mood disorders, and sleep disorders, as well as chronic stressors, are not addressed, the condition can get worse.
“In order to prevent fibromyalgia from getting worse, it is important to do the following things: 1) Diagnose it early. 2) Educate patients and families with regards to the nature of this condition. 3) Identify modifiable risk factors that can be treated, such as depression, sleep disorders, maladaptive responses to pain. 4) Ensure regular follow up with a primary-care physician as well as access to non-pharmacologic interventions, such as physical therapy and multidisciplinary care to prevent relapses.”
Dr. Ginevra Liptan, author of “The FibroManual” and founder of the Frida Center for Fibromyalgia near Portland, Oregon
“Is fibromyalgia progressive? First, a clarification is in order. What physicians mean by a ‘progressive’ illness is one in which function is lost over time – the classic example being multiple sclerosis, an illness characterized by progressive nerve damage and loss of muscle function. Using that definition, fibromyalgia is not progressive.
“But what most people are really asking with that question is does fibromyalgia get worse over time? In my experience it generally does not, but this depends on two competing factors. First, as we age we lose muscle strength and flexibility, develop wear and tear arthritis and sleep quality diminishes. All of these can cause pain, fatigue and fog to worsen over time.
“The opposing factor here is that over time we learn ways to better manage fibromyalgia and find ways to lessen symptoms, whether that is eliminating foods that trigger symptoms, finding what works for us to lessen pain or discovering the right sleep medication to get us into deeper sleep. Every person with fibromyalgia is different, and it is impossible to predict how these two competing factors will play out in each person’s life. But for most people, symptoms do not worsen over time.”
Dr. Neil Nathan, author of “Mold and Mycotoxins: Current Evaluation and Treatment 2016,” Redwood Valley Clinic, Redwood Valley, California
“The answer is that for some patients it is and for some it isn’t. It is important to understand for each patient, individually, the cause(s) of their fibromyalgia, which is not a ‘thing’ but a syndrome. First, it can be cured or improved only by identifying those causes, and whether or not it is progressive depends on whether and to what extent those causes are addressed.
“To be more specific, looking for infections (Lyme, viral), toxins (mold, heavy metals), endocrine (adrenal, thyroid, sex hormones), gastrointestinal (dysbiosis, food allergy), mineral deficiencies (magnesium), biochemical dysfunction (methylation, hypoglycemia) and/or dental causes are critical to answering this important question.”
Dr. Richard Podell, The Podell Medical Practice, Somerset, New Jersey
“For most people with moderate or severe fibromyalgia, there are better and worse periods but usually not major progression. For others progression does occur.
“Part of what the doctor should do is see whether other conditions are involved with the worsening e.g. missed diagnoses like Lyme, sleep issues, depression, spinal discs, etc.
“Consider going to my website, DrPodell.org. Go to ‘blog’ at the top of each page. Every so often, I post an evaluation of a potentially useful treatment. This blog also appears at ProHealth.com, the largest web-based fibromyalgia support site.”
Dr. Jacob Teitelbaum, author of “The Fatigue and Fibromyalgia Solution,” EndFatigue.com
“It varies from person to person. In most people though, it can progress to a certain level of severity and then tends to stay at that level until treated. It may spontaneously resolve in some, but is unlikely to do so on its own after five years.
“Our research shows that with using an integrated protocol called S.H.I.N.E. (sleep, hormonal support, infections, nutrition and exercise as able), 91 percent improve with an average 90 percent improvement in quality of life, no matter how long they’ve been ill. The study can be seen here.
“A free Energy Analysis Program at www.endfatigue.com can analyze the person’s symptoms and even labs to determine the underlying factors contributing to that individual’s fibromyalgia and tailor a treatment protocol to their case.”
So, now it’s your turn: Do you think fibromyalgia is progressive? Share your thoughts in the comments below!
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.