Ask the Doctors: Is Fibromyalgia Progressive?

Ask the Doctors: Is Fibromyalgia Progressive?

By Donna Gregory Burch

donnasnowday

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

Dr. Dan Clauw

Dr. Dan Clauw

“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

Fleming_Kevin_C_12AP

Dr. Kevin Fleming

“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

Randall-Gates-Reno-Chiropractic-Neurologist

Dr. Randall Gates

(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.

Martin-Rutherford-Chiropractor-Reno

Dr. Martin Rutherford

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

Dr Carmen Gota

Dr. Carmen Gota

“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

Ginevra Liptan, MD

Dr. Ginevra Liptan

“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

Dr. Nathan

Dr. Neil Nathan

“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

DrPodell

Dr. Richard Podell

“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

Dr. Jacob Teitelbaum

Dr. Jacob Teitelbaum

“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.

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Authored by: Donna Gregory Burch

There are 22 comments for this article
  1. connie at 8:07 am

    Grace, My point is that I TRY to communicate with people dealing with fibromyalgia and other chronic pain issues but being technologically challenged have been unable to find any real communication. I have found blogs but no chats where I can really make friends and TALK to people. Haven’t found any personal communication of any kind. The feeling of total isolation I am certain isn’t something I am alone in.

  2. Grace at 8:33 pm

    Connie, I guess that you’re doing that (communicating with people who know what you are experiencing) right now. Also, there are several support groups on FB. I guess Yahoo is a bit outdated.

  3. StevefromMA at 9:54 am

    I’m afraid a lot of us are in the same boat with pain and isolation. A great website is

    http://www.healthrising.org

    Free, lots of blog posts, many forums.

    I’m going to try hypnotherapy for pain, they want me to go on opiates, not my wish. I’ve run out of treatments, meds, and supplements to try. For such a terrible disorder, we have pretty bad medical care.

  4. connie at 9:28 pm

    To Charlotte B, I know all to well where you are. My biggest problem beyond the pain and exhaustion is feeling so alone. Living 25 miles from civilization and dealing with fibromyalgia I haven’t been able to make friends. I used to go to Yahoo groups to find friends but since they no longer exist I am alone many hours a day. I am pretty sure that explains the depression for me. Does anyone know where to chat with and meet people with similar circumstances on line? I haven’t had any luck with Facebook.

  5. charlotte b at 4:00 pm

    I agree with a lot of comments here and elsewhere too that it’s not taken seriously. Often people who have heard of fibromyalgia say things like oh yes, my friend/mum/grandma has that. Yeah, she has a full time job/ just had her third child’ etc. I’ve decided I can’t manage children if there are lots of days when I can barely manage to dress myself. That’s if I ever met someone!

    Fibromyalgia is too varied. Most people I’ve met/know of live great lives with fibromyalgia. Yet as I’ve said, most days i barely have the energy to dress and brush my teeth. Who are these people?!

    It’s not a condition taken seriously at all. I feel embarrassed and ashamed for being ill and for my extremely dependent existence.

  6. charlotte b at 3:52 pm

    (From the UK)
    I’ve been diagnosed for nearly ten years. I’m now 30. I have various symptoms/conditions which are apparently related to the fibromyalgia. I live a pathetic life. I’ve been depressed and anxious (diagnosed I mean, not just saying I feel that way) since before my teenage years and I think my fibromyalgia started in my late teens due to various other factors. I used to be very fit, then I went to university and despite loads of exercise I seemed to be exhausted all of the time and never became fitter. I finished uni after struggling through with depression, and 6 months later was sent home from my job and since then I’ve been stuck at home unable to work, socialize or exercise. Socializing is infrequent… the fatigue is atrocious and has become much worse over the years. The pain I’ve become much more used to, and I have a great GP who cares and has tried all she can treatment wise. I’m under the care of zero specialists, they don’t give a toss- the only decent doctor I saw moved hospitals. So I’m stuck going nowhere, I can’t work, my fibromyalgia is totally unpredictable. I have practically no friends and a family that are used to my condition, and don’t care or don’t ask anymore. Yes it gets worse over time. There is no hope given, no belief in the suffering of people by health care professionals. I’ve had a lot of tests for other potential conditions but not a thorough investigation, so I could have a whole host of undiagnosed issues. Yes it’s progressive, yes it’s miserable, yes it’s cr*p. Until the medical world puts in some work were destined to suffer until we shrivel and die from frustration. I don’t know what it’s like in the rest of the world, the USA seems to be the centre of knowledge, but obviously people there have to pay for treatment and get no financial support… it difficult.

    All we can do is get through each day and pray for the legalisation of marijuana because morphine isn’t working anymore for me (if it ever did).

    Please accept my apologies for the rant, this is the first time in about 5+ years I’ve spoken about these things if at all!

  7. Grace from Australia at 5:42 am

    I am 65 years old right now and, looking back, I’ve had FM since my teenage years. Yes it is getting worse. The pain, the sleeplessness, the tiredness and also cognitive symptoms that are often not taken into account. Not just the ‘cotton wool’ brain but mood swings and feelings of guilt after snapping or ‘hulking’. I cannot work anymore the way I used to do. Last week I refused a Resume preparation job as I could not face the complexity of the resume. I just could not face it. I am still fighting back, doing work in the garden but in short spurts. I do my house work but find it increasingly hard to do the vacuum cleaning even when doing it room by room. However whenever I do exercise on a regular basis I end up with knotted and sore muscles that take weeks to heal. Like, I discovered table tennis and really enjoyed it. After two months I had to stop as my heels and feet were so sore I felt like walking on glass.

  8. Lara Berman at 10:15 am

    The issue not mentioned was the fact that the inability to earn an income gets compounded over the years and therefore options for treatment lessen. In many countries there is no viable disability income for FM sufferers so articles about treating the symptoms and managing the chronic pain in order to not feel like the symptoms are getting worse is incredibly frustrating. This is where Depression becomes a huge issue and why suicide is a continued factor. If you do not have any other means of financial support (a spouse, investments, family) the chances of managing FM and keeping everything on an even keel is very slim. The idea of it not progressing is just theoretical and based on an idealistic situation. They don’t take the compounding factors into account (except for 1 p.o.v). When you deal with chronic pain and fatigue for years on end, with no end in sight, despite excellent care, your ability to keep fighting progressively reduces. And then you do feel like you are getting worse each successive year.

  9. Kim Miller at 4:43 pm

    I have to ponder the overall question of Fibromyalgia as a progressive disease, in that I have certainly accumulated more comorbidities directly related to Fibromyalgia as time goes by. Now that I have all of these comorbidities, many of which do get worse with time, do we consider that my Fibromyalgia is progressing or do we single out the comorbidities and only consider them as progressive?

    This is a question I saw no answer for in this article. My neuropathy is not getting better, that’s for sure! I would like some answers to questions like this. When considering the nature of progression in this disease, do doctors consider the offshoots of it and how those progress?

  10. StevefromMA at 11:26 am

    A lot of us are in the same boat, Kathy, if it makes you feel any better to know there is a community of fellows also toughing it out, with very great difficulty.

    GLTA.

  11. Kath G at 9:08 pm

    Over the past decade my fibromyalgia has worsened. Despite exercising daily, overhauling my diet, trying to maintain stress levels, etc., it continues to get worse. I actually had a rheumatologist tell me my case was severe and progressive, and that there was nothing he could do for me (at least he was honest). So now I do the best I can. Which basically equates to a whole lot of suffering and struggling.

  12. Connie at 7:45 am

    Yes fibromyalgia is progressive! Until doctors begin listening and pack their egos and bank accounts away we will not get effective treatment. I keep hearing how exercise is the key yet everyday i read another story of some who was an athlete and knows how to push and build up their bodies end up in bed writhing in pain. Depression is not the same as being depressed. a true depression will change the chemistry in the brain while depression does not, therefore antidepressants are not going to be effective. “Procedures” that are ineffective at best and cause more pain need to be outlawed! Treating us worse than addicts who get free needles and drugs is certainly not the answer. It boils down to putting away the egos and wallets while actually listening to those of us who fight this demon daily, only then will we find the answers and effective treatments that we so desperately need!

  13. Kit Kelley at 5:40 am

    In my opinion an expert in Fibromyalgia is someone who has fibromialgia not someone who studies it! Talk to some of us that have Fibromyalgia and asked us if it’s getting worse & listen to us!

  14. marty at 2:54 am

    I love the way Doctor’s with no personal knowledge of living with Fibro can even reply. They have no clue. I worked 2 jobs for over 20 years with fibro. Took naps on my lunch hours and in between jobs. Each year it got harder and harder. The pain got worse and worse and my old body started breaking down. I couldn’t work anymore as the pain over took my every day skills and my mind just went blank. 5 years later I am the worse I have ever been. I don’t know this person in this body or how they make it thru the day. My depression grew so bad that I have gone back to work 3 mornings a week for a few hours just to try and function like I used to and not be closed off from everyone> I’m not sure how much longer I can last. I spend 2 hours getting ready in the morning crying. finally ready my walker and I head out to the car for my few hours of work. I must keep going. I’m still worth something aren’t I?

  15. Kim at 5:08 pm

    How can anyone of you truley answer that question when your not suffering from this condition. Everyone has an opinion. College degrees doesnt make you right. Thirty years suffering and yes I am much worse. Listen to your patients. We do know. We suffer.

  16. Toni at 2:04 pm

    Every dr seems to say something different and no one seems to really care about our quality of life at all now, They just push the nerve meds that make us gain weight then scold us for gaining weight and tell us to exercise more. The cycle of pain never ends and in this year of 2016 with pain meds available, we are told to suffer because we might get addicted. It is a sad state of things when Americans have to suffer each and every single day and then a few drs come out with a couple of articles that mean nothing to our quality of life.

  17. Marcia Eckert at 2:04 pm

    Yes, I do believe it is progressive. Just a note, I really can’t take the above answer/answers seriously from those doctors promoting their own agend.. There are far too many claiming a CURE or treatment for Fibromyalgia, taking hard earned money with no refund when we are not cured or improved. I have had Fibromyalgia for 30 years and have yet to find anything that is helpful. As for a CURE, I know of, nor have read, anything believable about a CURE. I am tired of witch doctors telling me and others like me they can cure us, giving us false hope. Let’s face it, Fibromyalgia has become a big money making diagnoses.

  18. Melissa Reynolds at 12:05 pm

    I believe Fibromyalgia seems to worsen because age degenerates the body…making it harder to keep up. It’s disheartening to see the Drs who mentioned sleep disorders and insomnia as a reason for us to get worse, I read an article once that called sleep deprivation the thing that speeds aging – gets us to death faster – and my most recent pain clinic specialist told me medicine won’t make a difference and I should try sleep hygiene. Sigh. When we are these drs going to see they’re making us worse.

  19. Kim wilhoyte at 10:37 am

    I wish Dr Fleming would read more medical journals and get up to Darwin Fibro. It is no longer considered a central nerve processing disorder. Check with the creator of the fibromyalgia blood test fm/a. It’s a problem with out blood cells.

    Doctors need to stay up to date on the latest and greatest information in purse to beat serve their patients. His comments do a disservice to those of us who trust doctors and are looking for help.

  20. StevefromMA at 10:03 am

    Yes, interesting, as Kimberly says, but I just keep getting worse and suffering more pain. I would guess that, after thirty years of FM and now age 68, my body’s nervous system has just declined and my ability to modulate pain has followed that. I’m afraid that we just try to survive the days. I have a referral to yet another pain specialist but I’m not optimistic, just realistic. A lot of smiling doctors here don’t really have much to offer and I don’t believe Dr. Teitelbaum’s statistics.

  21. Crystal Jones at 7:30 am

    I think it is well established here that we are getting “stuck” on terminology.
    “Progressive” in medical terms typically means changes that can be seen via radiography, labs, etc. As in RA, Lupus, MS.
    However, the diagnostic protocol for Fibronyalgia is the LACK of such evidence in the presence of such symptoms.
    They all seem to agree in their own terms, that is IS a progressive disease, whether that being the secondary causation or not, is irrelevant.
    Ask those of us who have had it for thirty years. Yes, it is progressive, whether you want to make the case that Fibro, alone, is not the causation.
    Lack of medical care, insurance, understanding, inability to afford medications that have been labeled to help Fibro patients (Lyrica @ $500.00 a month, anyone?)
    Factor in quality of life. Pain is a disease on it’s own. So is the insomnia, so is the depression and anxiety, and so is the actual, visual symptoms that ARE objective (Swelling, heat, fluid, decreased ROM).
    Perhaps a few gains have been made in the study of Fibromyalgia, but the stigma remains. This needs to be recognized for the debilitating and disabling condition that is very well is.

  22. Kimberly Fox at 6:45 am

    I appreciated reading the articles by the different doctors. I participated in a study by Dr Clauw. My problem is that no one I go to knows how to treat fibromyalgia so I just suffer. I don’t know where to turn next.