08.10.2016

Ask the doctors: Is fibromyalgia progressive?

Share on FacebookTweet about this on TwitterPin on PinterestShare on Google+Email this to someone

This article, “Ask the Doctors: Is fibromyalgia progressive?,” was originally published on NationalPainReport.com. It is being republished here with permission from the editor. 

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.

(This post may contain affiliate links.)

I asked fibromyalgia specialists around the country to weigh in on one question: Is fibromyalgia progressive? Do symptoms worsen over time? Here's what they had to say.

 

Is fibromyalgia progressive?

Dr. Dan Clauw, University of Michigan Medical School’s Chronic Pain & Fatigue Research Center, Ann Arbor, Michigan

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

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. Dr. Rutherford is diagnosed with fibromyalgia. 

(Editor’s note: Dr. Gates and Rutherford have a YouTube channel where they regularly discuss fibromyalgia and its common comorbidities. In my opinion, it’s some of the best fibro-related content on YouTube!)

Dr. Randall Gates (right) and Dr. Martin Rutherford“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 (June 2016). 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

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. Dr. Liptan was diagnosed with fibro while attending medical school. 

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. 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 infectious (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

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. Teitelbaum was diagnosed with fibro while attending medical school. 

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.”

Now it’s your turn: Do you think fibromyalgia is progressive? Share your thoughts in the comments below!

You might also like…

A few of my favorite things for relieving the pain and fatigue of fibromyalgia.

As fibromyalgia patients, our physicians often tell us that opioids won't decrease our pain, but what does the research REALLY say about using opioids for fibromyalgia? You might be surprised!

Struggling to sleep? Read about five unusual things to improve sleep!

Each week, FedUpwithFatigue.com covers the latest news, research and practical tips to help you live better with fibromyalgia and ME/CFS. If you liked this post, sign up for updates below!








Sign up for updates and receive my free report, “There’s an effective drug for fibromyalgia and/or ME/CFS that your doctor might not know about.”

Share on FacebookTweet about this on TwitterPin on PinterestShare on Google+Email this to someone

Comments

  1. Lucie says:

    I have allodynia which is one of fibromyalgia’s symptoms. A simple brushing of fabric on my skin feels like sand paper on a sunburn. After two years of suffering from a chronic neck pain allodynia started. Initially it was the size of a clothing label. It progressed over the course of a few months to cover my entire upperbody. I can only tolerate a silk blouse without any seam directly  on my skin and silk bed linen. The good news is that I found a sensitivity rehabilitation program. It works! The level of pain and area affected are diminishing. It’s a long process given the large area affected but to date it brings a significant amount of relief. I am starting to progressively and slowly (a few seconds or minutes per day) reintroducing other fabrics… It is a relatively new program. My therapist had her training in Switzerland. You can get more information at http://www.neuropain.ch/therapists

    I also found a physiotherapist that uses the Busquet muscle chain approach to get relief for my neck pain. http://www.methode-busquet.com/en/method-busquet/ hope it works…
    I hope this information is useful.

  2. Mandie Finley says:

    I have had Fibromyalgia since I was a child. Each year something new pops up to add to the pain, frustration and overall fatigue. In the last 3 years, I have been diagnosed with a pineal cyst. Which interferes with sleep even more than fibromyalgia. I sleep for about 3-5 hours max. My pain is intensified from lack of sleep. I’m allergic to pain meds, most of the fibromyalgia meds give me adverse reactions. I rely heavily on muscle relaxers and antiinflammatories. Which I have to switch up on because my body gets used to them and they no longer work. D
    So in short, I firmly believe that my fibromyalgia has progressively worse.

    • Stephanie W. says:

      I agree. MS was ruled out yesterday because after 15 years of all those meds. I have progressively worsened deity being active daily due to the anxiety. The neurologist still says after my neck surgery/carpal tunnels and two ankle surgeries that’s it’s fibro.

    • I also agree. I have had fibromyalgia since I was in my 30’s and am now 80 years old. The pain is so debilitating. Also for years now I have had vertigo which is also debilitating. I firmly believe it is a progressive disease and I also am allergic to so many medications I am only able to take childrens pain medications. It is a life long illness that most family and friends just do not understand. If you look good they then think you are good. Not true. I put on an act when I am in public and suffer when I get home.

      • Marti Murphy says:

        Flo, if you have not yet tried Low Dose Naltrexone, please consider it. I get it from the River Pharmacy in Canada, online. They are so helpful in how to use it, and it is very inexpensive. It comes to me from India (where your neighborhood pharmacy gets it). I started with 3 mls. and am now at 4.5 mls I needed no Rx for it, and I dilute it myself. River Pharmacy will help you do this. BTW, I am 75 yrs old.

  3. Liselotte Hanström says:

    HI.
    I’ve had fibromyalgi a since my late teens, I’m now 45. I got my diagnoses last year. Things moves slowly in Sweden…
    My fibromyalgi is definitely getting worse. The flares last longer my last flare has been ongoing over two years now. My other diagnoses like collagen colitis and neuropathy and psoriasis and psoriasisartrit migreans vision loss and so on is also getting worse . And one real problem is that in Sweden fibromyalgi is not really seen as an serious diagnoses. Now 2017 or late last year the debate if it really not is psychological got on the rise again. So darn tired some…
    It’s really hard to be taken seriously with fibromyalgi here.
    Some years ago you could get disability but it’s not possible to day. Now you don’t even get to be on sick leave while the flares are at there worst.
    This is mainly because our government has taken a lot of bad decisions over the years and set off an immigration avalanche and let to many people in so the money is gone. If you are swede you get nothing if you are immigrant you get every thing including free dental care…

    The only option I have is to keep on working and hope I get a Hart attack because I have no means to live disabled.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so sorry, Liselotte. It seems like we are misunderstood no matter where we live. I keep hoping there will be a breakthrough on the cause of fibro so they can finally figure out how to treat it. Obviously something is wrong – our bodies aren’t just doing this for no reason. Sending hugs to you.

      • Liselotte says:

        Hi
        I have hope that doctors will take this more seriusly now when Men with fibro are getting out of the closet. It is a strange fakt that men generellly..that loks miss spelled.. is taken more seriosly than women in the healthcare system. At least here So go men 👍
        Hugs to you to

        • It’s not about the government denying it. They know it. There are just too many people that have it. Like being a diabetic. They can’t give out disability anymore. Maybe they should spend some money and tell us why we are all sick.

    • Janette Weiss says:

      Fibro is now in the top 5 for recieving disability benifits..well at least in Ontario anyway..i have fibro and many more issues to follow..i applied for ccp disability and they called me at home and told me..they didnt even bat an eye or turn down my claim because of fibro..
      If you live in ontario u should maybe do somemore research on how to get it..
      I have helped alot of people not just in ontario but all over the world get some kind of disability..and also apply for the ontario disability tax credit and also medical maruanna..you never know if you dont try for these things and just because they deni ur claim the first time around re apply and keep re applying…
      One most important thing is….
      Make sure your Dr or Specialist is very detailed in what they write that is the most importants of there desion weather or not you will recieve it..good luck and dont give up trying..

  4. I have had fibro since I was 13, beginning with PTSD, then hypoglycemia, then cluster headaches, and running through all the related specific physical and emotional issues until I had them all. I am now 51. For me, it has been progressive. Extremely so lately. Opioids work for me and allow me to function, but I can’t get them because evidently I don’t know what I’m talking about and Lyrica will save me for $600 per month (even though Cymbalta, gabapentin and the rest didn’t work)! I have reached the point where I don’t believe I’ll be able to get out of bed and go to work much longer, missing more and more work. I quit doing housework and taking care of my family at home (other than paying the bills) a long time ago. The constant pain is extreme now. The exhaustion is worse. My skin historically didn’t hurt. Now it causes me to yell if something touches me in the wrong spot. What is that if not progression of my symptoms? I have no faith in the medical industry left. I’ve been trying to get help for almost 40 years. 40. Years.

    • Simone says:

      I am 52 (in February) and have had similar experiences. I had severe social anxiety since my exit from the womb. LOL I think fibromyalgia is an “end stage” of PTSD caused by various kinds of traumas – physical, mental and emotional – and the body & brain just start unraveling, causing the central nervous system disorder and immune problems. We are just too sensitive for this world. I keep thinking that if I was actually crazy that would be a relief – a padded room sounds like paradise. But how many people have spent hundreds of dollars padding their bed with softest things, and yet still are like the princess and the pea? What I have encountered in the “progression” of this disease is a slow INDIFFERENCE to my body. It has stripped me almost every enjoyment I have ever had. I have to force myself to take care of it now. When I was younger I was much more optimistic about my future. Just being honest. I am still setting goals to try to improve my situation though.

  5. Jacqueline Edelman says:

    I am hoping that one doctor will read this and do something about it.I’m from the Netherlands so forgive me if my writing is not oké.
    In my teens i had a poisining with salmonella.For 20 years I struggled with all kind of pains.It seems simular to fybro.
    One day better than the other but life wasn4t easy.No one believed me and I was told that on my age I could jump over a house.
    By “incident” I met a man who developed a cure for salmonella.Salmonella when youre body can get it out restores in the tissue nearby the organs.Not found in the blood.Sympatisch and parasympatisch nervsystem will take over so one day or week you are feeling fine and then worse than ever.
    I believe fybro is the same kind of disorder.May be caused by lyme??I have fybro now and there is no docter who believes me.I’m sure it has nothing to do with neuro transmitters.
    The man I consulted for the salmonella had a treatment during 6 weeks he had patent on the cure.
    .It worked and I was pain free and not ill anymore.The good fellow is dead now so I go on alone.
    Docters must know we are NOT FAKING but have to do rechearch in another way.

  6. I was originally diagnosed with Fibromyalgia in the early 90’s when most doctors used it as a catch-all for symptoms they couldn’t explain but they really didn’t believe it to exist. I had one specialist tell me I was “faking it” and another tell me that I needed to just suck it up and not be such a baby about pain. My GP was the only one on my side back then. There weren’t any real treatments. In the late 90’s a local hospital put on a Fibromyalgia clinic which I attended. There were about a dozen women in the group and it consisted of group sessions where we talked about symptoms, causes, etc.; an exercise session; relaxation time and one on one counseling. My counselor worked with me and gained my trust…until the last session where she tried to recruit me for her Amway business. I cried all the way home. I thought I had found a place that understood what I was going through and it was blown in an instance. I have other health issues as well, so I just sort of through the Fibro into the corner and ignored it…or tried to. It wasn’t until I started blogging and connecting with other patients that I realized a lot has changed and much more is known about it. But in my experience it does progress. I am much worse now that I was 20 years ago. Yes, other conditions overlap, but the more I read up on Fibromyalgia these days the more I think it is at the core of my problems and the others are offshoots from it.

  7. Breanna Stratmann says:

    I’ve had fm going on 12 years now and have had so many meds thrown at me it’s sickening, I was told lose weight, I did , I went from 250 lbs to 136 lbs as of today , and let me say pushing through the pain has been very excruciating for me , has it helped to reduce the flare ups ? Nope!! It took me 4 years to do this , and it DOES PROGRESS. It’s true fm won’t kill you ,but all the medications will. My suggestion, get in a pool, it is the only thing I’ve found to help , so you Dr’s are Very WRONG ,,,

  8. Agnes says:

    Thank you Donna for these articles, it is very much appreciated. I too have seen it progress, the pain is constant, there are no good days and bad days, no waxing and waning. Every day is a pain day, no sleep, and then there are really bad days where all you’d like to do is cry but that would just make things worse. I recently came across another blog where someone mentioned they found out they had Ehler-Danlos syndrome. It is a genetic problem with some of the genes that make collagen. After researching this to some extent, this would make sense why I feel like I’m coming apart at the seams (what I’ve been saying for some time jokingly) but may actually be doing so. From what I understood, the more active you are, the more you’re destroying the connective tissues and hence more pain and fatigue. But the opposite is also true whereby the less you do the worse it gets. So the key is to find that delicate balance and do gentle stretches and movements to keep from degenerating too quickly. It seems to affect people at varying degrees, that would also maybe explain some of the great variety of pain we all suffer. I am so sick and tired of doctors telling us exercise more. Please, someone out there, look for the biological cause(s) so that we can find a cure or at least know exactly what we’re dealing with rather than trying to throw umpteen medications/exercise at trying to manage symptoms, that often don’t help and may be making things worse. And stop looking for psychological reasons! Good grief, I’ve gone through a lot in my life and have always tried to find the silver lining to any bad situation and use it as a life lesson; I am strong, strong willed and determined and I am also fed-up with all the judgments that are out there. I am coming to accept my condition and grieve the person that I was. With that, I am also more able to disregard the judgment I see others doing of me (after all, I don’t look sick!), bless them, may they enjoy their good health and take good care of it and never know the pain we live every day. This illness has taught me some very valuable lessons, number one being don’t judge a book by its cover; we have to decondition ourselves to judging, that is very difficult and we all do it.

    • Kelie D says:

      You are so right! I feel like I am saying “this is me” “this is me” at your every sentence. I’m just diagnosed this week; but have been fighting for years and years to figure out why I’ve always been in some sort of pain. I have some skepticism about the reasons why I lost strength in my legs and was put in a wheelchair for the last 5 months? This doesn’t seem to fit the profile except for me to think that I was in the most extreme flare ever? They thought MS at the hospital until tests came back negative for everything. Learning about this disease and reading these blogs on this site and from this author I am thoroughly convinced it is FM. Ive been in pain for soooooo long and this to me would surely make it seem progressive; or for at least during the most severe flares? But who can afford to have an extreme flare last 5 plus months? I’m just wondering if it progresses to other diseases or problems. . Or this disease itself is the cause of other specific diseases. In turn making drs say FM stays the same but oh by the way you have paralplegia for no reason. It HAS to be progressive. I know now i must have had this disease for years and is only getting much worse. The progression is the adding on of more and more FM symptoms over time. I’m brand newly dx’d but my history would make it seem very very progressive. Sorry for the huge comment. So much to say! Thank you.

  9. Colleen says:

    Aggravated by these doctors and many more, I have had fibro for over 5 years, 2 years ago I had major surgery for rare cancer (medullary- cancer of the c cells). I had to have a neck dissection and a lot of tissue and lymph nodes were removed in my central and left neck (a 7 hour surgery) since then my fibro pain increased so severely and not just that but the list of symptoms has grown quite a bit. I seen quite a few Rhumatologist and none knew much about fibro only arthritis. I am planning on seeing a neurologist as a last hope. I also did the new fibromyalgia blood test called FM/a (my insurance paid for it) https://thefibromyalgiatest.com
    Also here is the most detailed symptom list I have found. It was scary checking off most on this list, I had no idea these symptoms were fibro related.
    http://www.fibronetwork.org.au/images/downloads/The%20ridiculously%20long%20list%20of%20Fibro%20symptoms.pdf

  10. Susie says:

    (DIS)credit

  11. Susie says:

    My FM has absolutely progressed! Started with just horrible pain in my elbows but now I feel it just about everywhere! I was able to work the first 17 years but not for the last 7. Fibro fog wasn’t experienced until year 10. I understand that much is brought on by medications and general wear & tear the aging process brings on. Neurontin put 80 lbs on me BUT it’s the only med that is really effective on my pain. I’m currently off of it and have lost 12 lbs but I’m hurting like crazy! So now what do I do? I’d scream, cry & stomp my feet but that would just make my head hurt worse. Maybe a good cry is in order.

    • Simone says:

      Hey, I found out that a good cry does work to alleviate pain. About ten years ago I was working nights at the same clinic that was giving me treatment for fibromyalgia. I was also working another part time job, and not managing well. I was always accustomed to “pushing through” my disability and working until I physically collapsed. My doctor was on duty frequently in the building and I was too proud to report my difficulty in the moment, and allow her to see my vulnerability. I think this is a wonky side affect of the fight/flight dysfunction aspect of fibromyalgia. We hide our vulnerability like injured animals. We are more comfortable talking about a breakdown at home than exposing ourselves in public. My husband calls this my ZOMBIE MODE when my eyes glaze over and I soldier on until my body collapses. I do not do that to myself anymore. But the irony was that I was suffering so profoundly under the nose of my doctor, who seemed to be out to prove I was faking it, because she dismissed so many of my concerns. I spent twenty minutes in the break room every night crying, and that cry and rest enabled me to finish my shift. That was the worst job experience of my life, and the last time I worked outside the home.

  12. Lyzz P says:

    I agree most with the opinions of the Dr’s that actually have FMS. I see conflicting info here and there, or at least a difference in the emphasis of what the ’cause’ or ‘cure’ is. I know a lot of Dr’s that say “You have to move even if it’s bad” no. If I do that I fall asleep at work, or start nodding off while driving, or just plain don’t wake up at all for a day or two and lose my job. I know how much I can give and do before it wears on me too much.
    It does feel progressive in the sense that being in pain every single day is exhausting and I wonder how long I can keep working.

    I’m honestly a little offended at the Dr who acts like it can be cured by finding the underlying cause in each patient. If that were how it works, Dr’s would work way harder trying to figure out if they knew they could cure us.

    I really do like hearing these opinions though and gaining insight, even if I think the opinion is trash I think it’s good to know it’s there.

    Lastly, I don’t think that rheumatologists should be treating stand alone Fibro. I see a neurologist for my fibro. It’s a disease of the central nervous system… why would I not see a neurologist?

    Thanks!

  13. Sherry A. Gamble says:

    I’m fed up with fibro! I’m a medically retired nurse of 36 years & diagnosed w/fibro in 1991. My symptoms have “progressed” & new symptoms appear frequently. I used to think it was just my own “idiosyncrasies”, but in fact, can now blame them on fibro. I’ve seen numerous Drs. over the years. The only one that truly helped me was a D.O. She did extensive testing from scans to labs,etc. After 2 yrs. of intensive physical therapy w/out pain relief, she offered me acupuncture. It worked! After 7 treatments, I was pain free for 2 years & the pain finally returned. Now, I can no longer afford acupuncture, but physical therapy & “non” aerobic exercising helps some. I take multiple vitamins for specific reasons w/advice from my IM Dr. But the chronicity of pain & multiple symptoms is overwhelming. I’ve read over all the Dr. postings & don’t necessarily agree w/them, but am appreciative to know that research & empathetic clinicians continue to work towards finding solutions in making day to day living w/fibro somewhat tolerable.

  14. Jamie Lewis says:

    I have been DX with FM since 2012. I have seen my health worsen. My sleep pattern sucks. I ache all over, my back hurts, my legs hurt, my neck and arms hurt. I’m tired of hurting!!! Going to pain management now for help.

  15. Michelle Alvarez says:

    It does get worse over time, at least for me it has. I LOVE the articles here. Thank you for putting your own much needed energy into them. I am very appreciative of any information regarding this hideous thing called fibromyalgia.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks, Michelle! Comments like yours keep me motivated! 🙂

  16. Karen Reed says:

    Thank you for posting this. I’ve had fibro for 11 years and have found that over the years I have developed new symptoms, some that have made my daily life so much worse. I was exercising and having physical therapy which seemed to work in the first few years but then it started leaving me in more pain than I was initially in so my primary doctor stopped the physical therapy altogether and suggested that I try to stretch each day, even if it’s just for a little bit and I do it when I can. I have to stretch just to get out of bed each day.
    While I understand what most of these doctors are saying about it not being “progressive” in the way that MS and Parkinson’s is, I find that it is most definitely progressive in that the symptoms that we have DO get worse and we get new symptoms to deal with. I felt lucky that I didn’t have fibro fog like others but that’s what I got this year and it’s horrible! It has definitely affected my level of depression as well.
    I think that one of the most difficult things about having fibro is that every time I do get a new symptom I’m told “that’s part of fibro” What if it’s not fibro-related? That’s the part that really scares me. The other really difficult thing about having fibro is that no matter how caring and loving my friends and family members are I KNOW they don’t get it. I can tell by the looks and replies I get that they’re tired of it (and the limitations I have). I have to remind myself that unless someone has it, or some other type of chronic pain, they really just can’t understand it. Not that I would wish it on someone, not even for one day, but it’s one of the most frustrating things about fibro for me. Thanks again for posting this.
    By the way, are there any doctors that you know of that have fibro themselves? I’m new to your page (but will follow it now) so you may have posted something from one of them in the past. Just thought i’d ask.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Karen, yes, three of the doctors included in the “Is fibromyalgia progressive?” post have been diagnosed w/ fibro: Dr. Ginevra Liptan, Dr. Martin Rutherford and Dr. Jacob Teitelbaum. I did an interview w/ Dr. Liptan a few months ago when she released her new book, “The FibroManual.” Here’s a link to that interview: http://fedupwithfatigue.com/ginevra-liptan-interview/ I really enjoyed her book. It’s one of the better fibro books that I’ve read. She takes a very holistic approach to treatment and has a good grasp of the challenges b/c she manages fibro herself. Dr. Teitelbaum’s “Fatigue and Fibromyalgia Solution” book is also good. Happy to have you as a new reader!

  17. Susan Acevedo says:

    I’m in agreement with all the other people on the site. If doctors have this they would not be saying that we are under educated, lazy and not trying. I read everything I can on this disease and I try to exercise as much as I can and I still can’t get any sleep without a pill. I did do a trip the other day in the car that lasted 6 hours and I slept like a baby but I can’t do that everyday just to get to sleep. My medication is a joke, it doesn’t matter what I take I still get no relief. I don’t think this is Progressive but I do think we all progressed to our own level of pain and will stay there. Thank God it’s not fatal

  18. Marie Thompson says:

    I am tired of hearing this nonsense coming out of Doctors mouths. I would like to hear from a Doctor that has it. He would be a bit more honest. Let’s face it they do not have a clue what to do about Fibromyalgia. The fact that we don’t sleep much due to pain has sent them on this looney little trip of feeding us Amitriptyline in multiples of 50mg. Well yes I get this kind of doped sleep from the meds, but I wouldn’t call it reparable sleep. It just knocks us out for a bit, which makes it a little easier to deal with the pain that rattles through our bodies whenever it wants. Good grief they don’t even have a clue about the so called brain fog. I find this more debilitating that the pain. Typing this comment has taken me 4 times longer that it would have before fibromyalgia. I use to type at 80 wpm with a 99% accuracy it doesn’t bear to think what my speed is like now. I just wish somebody would take us seriously instead of them running behind their Drs door and making things up as they go along.

  19. Aileen Gimlin says:

    I would like to have seen an opinion from Dr. St. Amand, fibromyalgiatreatment.com.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’ll keep him in mind for future “Ask the Doctors” posts. Thanks for the suggestion!

  20. Julie Waterman says:

    It upsets me that for a lot of them it seems to come down to yet again to lack of exercise and one even says bad habits!! So this perpetuates the myth that we are lazy and if we only got off our butts we would improve. If only anaecdotedly this has been disproved thousands of times!! Think about it, this would mean those that continue to be very active eg working full time should improve, this is sadly not the case.

    • Simone says:

      Well, I never found a doctor who really paid attention where I live, but I think most the doctor’s above are breaking new ground in treating fibromyalgia because of their experiences with it, especially Dr. Lipton. She is not my doctor, but I read her first book long before she opened a specialized clinic in Oregon, and I thought she was on the right track. She is also a supporter of Devin Starlanyl research http://www.fmcmpd.org which was revolutionary in figuring out my symptoms. I could not get my doctor to read anything. Dr. Lipton admits that SHE treated her own fibromyalgia within the first ten years of onset before severe damage was done to her brain, spinal cord and central nervous system. Many of us do not have the advantages that she had early on. Many of us suffer quietly, trusting doctors who are inadequately treating us and not pursuing the underlying causes until we wake up fifteen years later realizing “chronic” means permanent and quality of life is really up to us and WE have to figure out how we are going to live. That may mean getting off our butt and doing at least one new thing a day to help ourselves (without hurting ourselves). I am surviving fibromyalgia, chronic myofascia pain disease and diabetes on my own without doctors supervision or prescription meds right now, so am very aware that my success and failure is entirely in my own hands each day.

  21. Yves Hudson says:

    Yes it has got worse. I was only diagnosed 2 years ago but have had it for at least 20 years getting progressively worse, stopping me functioning at work. My sleep got worse and random shooting pains like someone sticking a needle in. This carried on travelling up my body to become a fixed burning stabbing pain up my spine and across my shoulders, headed into my neck and up into the front of my head. Started getting visual disturbances 9 years ago, eye test, optic nerve had been hit by something, in both eyes the same. The spasms and cramps started about 15 years ago and the pain became unbearable. Left arm became pretty useless as did both hands, fingers swollen and twisted, tingling and stabbing pains. Worth noting that the first real indication was about 25 years ago following a car accident I was unable to stay still anymore and could no sit or sleep in one position because my skin and muscle became too painful in certain spots. Bottom of back, thighs, sides of knees, back of shoulder, elbows, I could not kneel, or lean on things, started carrying cushions around or soft scarfs. So what came first fibro? actual nerve damage in a car crash? arthritis deterioration, accepted had that since first op at 19yrs. All I know is now I am so exhausted and permanently in pain, no more flares with free bits in between to recover, just bad days and really, really bad days. My life is about managing my illness, staying as mobile as I can, staying as functional as I can and above all not letting it completely take over my family and friends lives, as it has mine. So yes, whatever anyone says this is a degenerative disease and like many diseases that were not understood, Fibromyalgia is currently not understood, not a side effect, not because you are of low education or lazy, not because you had a bad diet or suffered depression etc. I am 2 post grads educated, had a family, husband and climbing career even with fibro for at least 10 years, have always eaten a healthy diet and do not have any medical conditions such as high blood pressure etc. It’s time that these people who think they know about fibro and its victims stopped looking for ways to pocket us and concentrated on the disease and the victim. Socio-economics play no part in this, it can get anyone, anytime and it must be dealt with.

    • It sounds like CRPS to me that you have on top of fibro

    • Terry says:

      I have to agree with you! I have many of the same exact symptoms as you. The optic nerve damage, is real as I suffer from permanent visual loss. Many of my doctors have run every blood test they can think of and once they can’t make a diagnosis with what they know and understand they basically just look at me as if I’m a nut case. Maybe I am but I have become progressively worse. And though family & friends say they understand and I know they love me, they really don’t know the depth of what I endure everyday. I push myself everyday to get up & going this is my life and I’m trying to make the best of it. My hope is that someday these brilliant doctors will figure it out, they haven’t so far.

    • Laurel says:

      I agree with you it gets worse I also think we become immune to the pain medication and that starts the addictive drugs. Dr started me on narcotics and the doses increased each time the body became less receptive to the medicine. Besides dealing with the pain while not becoming a addicted to the medication. The sleep disturbances are nutty, I may sleep one night better than others then I would lapse and stay in bed for two days straight. The fog is bad upon waking and my morning medication does not help so come my noon dose it kicks in to help fog subside. Then it is a constant flip of the coin to switch medication until the right combo is found and the process repeats itself over time. I have severe degenaritive disc disease hitch there is nothing they can do for it outside of living with the pain so the pain medication has to help both conditions. I find my feet fall asleep quickly, I have carpa tunnel in both hands and my arms have been going numb for years either from the damage in my cervical disk damage or the pinch nerve in the neck, even if you sit wrong it all gets thrown out of whack adding the lower back pain, the leg and hip pain. It becomesthisnever ending circle, you start to feel like “Alice in Wonderland” one pill to make you small and the next pill go make you big and so on. The anxiety and depression is bad and there are ore pills to treat that. The medication made that helps Fybro is hit or miss, I could not take them and had very bad reactions to Cimbalta, Lyrica and so on. I was becoming non functional on the huge doses of of all addictive drugs and it took me a year And a half to wean off because I was unwilling to replace it with another narcotic to get off of them, seemed to be a nutty solution for wanting to be rid of them. Now I am on Mobic along with Tremadol for break thru pain, I am on diazepam 3 time aday along with the amphetamine 3 times a day, my antidepressant is Citalopram 1 daily and Wellbutrin 2 times daily adding he muscle relaxers of Soma-compuound and flexeral at bed time oh I can’t forget my allergy medication in the evening of Singular and Allegra Combo, if my allergies become very bad it effects my breathing so I have Advil disc to keep lungs open. The only things I have found so far that helps ease the pain I’d meditation (guided), the spa near me has a BioMat which can give relief and make the pain more tolerable for two weeks or so. They say water excercise is good and not as painful, I would not recommend a chiropractor unless they are knowledgable of Fybro. If they hit those pressure points you go thru the roof, it’s agony. Have not tried acupuncture yet with the cost of the monthly Doctor visits and cost of medication. Heat helps me but the rainy weather and winters are a perfect storm for flare up. I applied for SSDI in 2010 was refused 2 times and had cold hard facts why I was qualified, the lawyer I has said the usually get a yes when you go to court and seethe judge. So I went to court in January was approved after waiting for advising over a month, then had to wait a few more months to start income and it took over 7 months to send the pro rata amount due. They send you a large check which by rights is your money, which you contributed into the system working hard for over 25 years. The but is, because my husband makes over the pathetic poverty numbers which is so low it’s pitiful and your could not sustain one person let along a household so they will be taxing the large check when filing next year so it’s your money that will now been double taxed. So you don’t get the benefit of the full amount to help catch up. As this process was not easy because they are still not treating Fybro as if it’s a condition that paralyzed you, like they always said “It’s In Your Head”. So over many years of struggle, worry and anxiety that you may lose everything you worked so hard to obtain so the husband kills himself taking all overtime available to pay the biills. you willl lose all you have and I watch you husband break him back working after the struggle over many years to decide you have to pay the doctor and need your medication so the debts you have been unable to pay because the money was going to medical and basic home costs. Along with home repairs not foreseeable in the future, I have had a hole in the ceiling of my downstairs bathroom for years unable to pay for that repair along with other maintenance needed on the house, I am not talking about buying a designer bag, this is necessary not a luxury but they will have their hand out for their portion in taxes, naturally the sum has increased your tax bracket so more to pay the government and ironically it was taxed and now being taxed again so it leaves you with just nough to repair a few items but will not help to pay the bills you could not sfford to pay since 2010 bringing your credits pit score down so low you would think it flat Lined! normal wear and tear you have to keep up with one home, so it is not which the money received would be applied to but no they hsve to tax it p Plus iiyour lucky you can be left with enough to get some stuff done. That is another issue in our government, all the chirpy, state and federal government showing they don’t care it’s not affecting them so it is not a priority. check over the past years or the repairs and maintenance on your home straightwhich they would not go back to the disability date in 2010, they started the pro rata date in 2012. Now to add insult to injury the lump sum that is severely needed to cover years of debt and even to get you car running while it sits in the driveway with a dead battery, tires going flat and he trunk that had water seep in from God only knows where. So it has now dried into a lovely one inch high, pure white coating of mold and it needs to be cleaned and disinfected with every I item in there ruined and to be thrown away. Sorry I went on a tangen babbling. I will pray for everyone to find the best treatment and keep the pain levels at the very least tolerable. Wishing you all a peaceful and pain free night of rest. PS: I am surprised to hear that two of the male physicians have fibro I though it was on,y women? Well at least they can be the best one to help others suffering daily. We need so much more research and study of the condition which is very real and SSDI still has the mindset it is not so bad that you can’t do anything. They are eve gout to review my case in 2018 to see if there is an improvement allowing me to go back to work, I guess they don’t understand the word degerative disc disease? Even if they still think Fybro is not that bad. Until you all I I Es shoes you have no right to judge or comment on the limited data available to truly comprehend the scope of this condition. Ok sorry one more thing, I was losing muscle mass not being active and unable to get any form of excercise so I make a protein shake each day sand it is helping my muscle mass stay more firm and stronger. I don’t want atrophy to set in, lol. Sorry so lengthy, wishing you all love, light, laughter and smiles 😃 LaurelAnn

  22. Georgene says:

    This was a great article! Thank you for taking the time to interview these people in order to help us! You really go to a lot of work to bless those of us who read your blog!

  23. I feel like it waxes and wanes. I have been diagnosed for two years. I have also lost two jobs due to fibro fog and cognition problems. There are better days, there are bad days. I am willing to exercise and am unable due to shoulder and knee troubles. I have intense swelling from knee pain. It has had a MRI two months after meniscus surgery was done bilaterally. Structurally sound. I do feel better after working out when I am well but getting there is exhausting and painful. If only my doctor could write a prescription for a large deep, heated and cooled pool with a massage therapist/ Physical therapist on duty for me.

  24. Jamie Miller says:

    I am 26. For me, my fibromyalgia has been progressive even since getting diagnosed and getting treatment. I see mental health doctors regularly, I go to a Psychiatrist led chronic pain group weekly, I see my primary care physician at LEAST every 4 weeks. I get blood work done every 6 months. I have gotten much worse even being very proactive in my treatment.

  25. I Don’t really care what doctors think about this issue. I have had Fibro (diagnosed) for 18 years and it is getting worse!!! In my 50’s it was aggravating; I had to quit my job. But I eventually had days of feeling able to participate in life. Throughout my 60’s it has become impossible to cope with, which, of course, affects my mental state, as well. I just don’t get it. I don’t think anybody does. So when doctors say they don’t believe it gets worse, it irks me, because we are all learning about this as we go along. The medical profession could just say they don’t know and call it a day.

    • Punkin says:

      Oh Judi, your words and frank reply are music to my ears today!! I am going to be 69 in August.. I got CFS in my 40’s and I thought that was rough, because it completely changed my life.. Now I have been diagnosed with fibromyalgia for the last five years…. I HAVE NEVER KNOWN SUCH PAIN!! It’s almost paralyzing.
      I have never read about others that may feel like I do on rear good days,that if I had half of my old energy, my brain still thinks the same as when I was well in my 40’s?!! Perhaps I could view it’s a cruel joke, but for me it’s a brief sliver of hope!; )

    • Susie says:

      I’m with you, Judi! Once the fog settled solidly into my brain (started in 2003 & took 6 years to get to this point), I was ‘let go’ at my job. “Are you kidding me?” I thought. I’d worked since age 15 & was 53 when that happened. With reflection I realized I wouldn’t hire myself either so I applied for & eventually got disability. At 60 now, I feel like I’m 80…at least! My Daddy lived to 90 so I Could still have a LONG time left to deal with this crappy DISORDER. Doctors can call it whatever, form whatever opinions they want but WE KNOW this thing inside out so LISTEN TO ME when I come see you!!! Make sure anything new isn’t from something else—don’t just (dos)credit it to FM & CFS. Ok. Rant over. Carry on, Warriors!

  26. I actually like what Dr. Carmen Gota said about Patients with FM have their own “fingerprint”. Everyone has their own triggers and levels of pain. I have been suffering for 10 yrs and it doesn’t get better, at least not for myself. I have learned to become more tolerant of the pain but that doesn’t mean the pain has diminished. I have tried many different cocktails of medications and to be honest, what really works? At the end of the day, underneath the medications we take, our bodies are under constant stress.

  27. Sue barwell says:

    I have fm, cf, n lower bk pain. Neck n wrist problem. I think y sone off us think the fm is getting worse is may not so much the fm it’s self, but all 100 plus other things that we have to suffer as part of the fm. I thought I ad accepted my fm well, how ever when I went to do to diff Drs bout the pain in bk of head n behind my ears , n then was told its was the beverage in my head , n it was part off fm, that’s when I new I ad not accepted it as well as I ad thought, but in fairness I was not expecting so other things to happen within my body because of fm. So does it get worse, it defy aggivated lot by stress n the pain defy gets worse. Think does not help some off us with fm, as some Drs don’t know enough about it, n people like job centres giving us added stress etc. It’s brill research is being done for us with fm. Still lot of professionals still need to b per educated more bout fm. Thank you for all you do, hope I’ve put this clear enough as got blurred vision at mo aswell.

Speak Your Mind

*


Wordpress content guard plugin by JaspreetChahal.org