Remission from Fibromyalgia?

Fibromyalgia is a pain syndrome that is usually triggered by a physically stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles, and the tendons that support the joints, lending to severe, widespread pain and joint stiffness, but without actual inflammation. The syndrome does not damage the joints, muscles, or any organs–it just feels like it! There is an extreme sensitivity to pressure (allodynia): Things that would not normally hurt, such as receiving a gentle hug, become extremely and lingeringly painful. The pain never stops, is absolutely everywhere, all the time, and may particularly revolve around the tender point locations necessary for diagnosis.* Someone with FM will be hurting when they are sitting, standing, walking, and lying down.

Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches. Irritable bowel syndrome is also extremely common. Sleep problems may include an inability to fall asleep, but particularly revolve around problems staying asleep. Someone with FM may wake up every single hour at night, due to the brain’s inability to conduct normal sleep waves–in this case known as an alpha-wave intrusion, causing bursts of brain activity during what should otherwise be restorative sleep. FM is thus also accompanied by a great degree of fatigue that may or may not be manageable. Cognitive problems are multiple and very prominent, including things like an almost complete lack of short-term memory, working memory, any ability to recall the names of everyday items, and silly things like placing the television remote in the freezer and the popsicles on the coffee table. (Or pouring your cup of tea into the sink instead of your cup… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, sensitivity to weather changes (instead of turning on the local news, ask your Local Person with FM if there’s rain or snow coming), and a high rate of restless legs syndrome.

Stress is NOT the cause of fibromyalgia, but stress exacerbates any chronic illness, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.


We know Fibromyalgia can disappear on its own when it’s associated with Myalgic Encephalomyelitis.** But what about otherwise? Does treating the disease that triggers FM always make the FM go away? That certainly wasn’t the case when I fell ill: Although M.E. triggered my fibromyalgia, when the M.E. went into remission, the FM remained to torment me…until it, too, slowly abated a year or so later, ironically right as the M.E. relapsed/returned. I halfway expected that additional neurological trauma might re-awaken the fibromyalgia, but even throughout the Lyme disease ordeal that followed, the FM never returned (although I am now left with permanent, disabling pain).

So, does it ever naturally remit on its own in other circumstances? We may never know, because the consistent over-diagnosis of FM has severely muddied scientific research. For instance, there may be thousands of people diagnosed with FM who also have M.E., who just had the unfortunate circumstance of being diagnosed with FM first then stopped looking for additional explanations. Also, nearly everyone I know battling Lyme disease–I am not exaggerating–initially had a diagnosis of either Chronic Fatigue Syndrome, Fibromyalgia, or both. It was only their persistent digging that eventually afforded them the actual cause of their progressing pain, fatigue, brainfog, and neurological disturbance. If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen Lyme Literate medical specialist, you probably do–you can read this and call IGeneX to order a test kit for your doctor, as they test for all possible bands (just the most common thirteen available on standard testing). Additionally you may watch Under Our Skin, a film containing people with FM who found out Lyme was the cause of their symptoms.

I don’t claim any of the tips below to be a cure–I think my FM most likely remitted naturally of its own accord–but I can at least share how I treated the syndrome while I endured it, in case that might be of help to others. I could always, always tell when I was forgetting one of them.

  1. Magnesium

    You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article over-analyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain old Magnesium oxide with chelated Zinc from Walmart and it worked without fail. One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

  2. Foam mattress topper

    Actually, this might ought to be number one… It’s that important. Fibromyalgia is made worse by pressure on the 18 tender points…which are practically everywhere. It should be easy to grasp, then, why relieving this pressure whilst sleeping is essential to easing your symptoms: You’re pressing on them for eight hours at once! Invest in this, no matter what. You will not regret it. Personally I couldn’t sleep on anything that didn’t have two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would awaken after just a couple of hours in excruciating pain, all from the pressure on these tender points. Also, sleeping better will help improve your cognitive abilities (memory and mental functions) and fatigue.

    • For TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!
  3. Protein

    You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world renown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians it might be soy, or something similarly protein-rich that contains all essential amino acids. I noticed I had more energy and wasn’t as weak. I highly recommend you try the same test.

    • We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different from sugar, containing mostly fructose and glucose (instead of sucrose), which is fancy language for: Your body can use more of it for energy instead of donating it to your fat reserves.
  4. Aloe vera

    If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and many IBS sufferers cycle in-and-out, sometimes even within the same day). I’ve had people tell me they’ve been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction?

    • I’ve always taken Puritan’s Pride aloe vera gel capsules because I can’t stomach the drinkable form. I’ve been taking them daily for eleven years and while it has many other health benefits, it’s mostly to protect the intestinal tract and help keep things from acting out, whether to one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just ground up aloe vera leaf like you may accidentally purchase if you’re not paying attention…or having a healthy dose of brain fog. You can get the same relief from drinking it, but the gel capsules are much simpler, if you ask me.
  5. Flexeril

    This is a muscle relaxant that used to be one of the only things your doctor could give you for Fibromyalgia, before Lyrica and all the others came around. People with fibromyalgia do not enter the restorative stage of sleep as often as they need, so the next best thing is to make it count whenever you do. Flexeril makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticeable, particularly when you’re in one of those “waking up every hour” phases that leave you a zombie during the day (which contributes substantially to the “fibro fog” part of the illness). If sleeping aids cannot keep you from from awakening fifty times a night, at least you’ll get the most rest out of whatever REM sleep you do get. I personally had to switch to Robaxin (methocarbamol, another muscle relaxant), but just be sure to try something.

  6. Exercise daily

    If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough how essential exercise is for fibromyalgia…nor how difficult it is to get started. But second to none does it improve fatigue and stamina, and second only to perhaps the mattress topper did it so quickly improve my pain. I.e., it helps a lot...and you probably want to start with all the others first (except the aloe vera, which is just for intestinal troubles), to give your body the best chance of recovering from the exercise. I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but do not mistake this for being a treatment for M.E. (which is not the same as CFS). I absolutely could not exercise until the M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

    The first goal is to have fifteen minutes of activity a day. In the beginning I could only walk around my house for three minutes at a time, five times a day. Next, I moved up to five minutes at a time, but just three times a day, so still fifteen minutes total but more activity at once. When I felt comfortable with that level of activity, every morning I began rotating my joints across their range of motion; it was practically the only way I could fight the terrible morning stiffness, especially in the colder months. Feeling less stiff, I finally started adding in very gentle stretching exercises, similar to the ones you’d do before a run. First, just five minutes a day of very slow stretching, only as far as my muscles could go without feeling a strain. Eventually I was able to work this up to a full fifteen minutes straight of stretching, using my favourite music to make it more enjoyable.

    DO NOT try to do it all at once and DO NOT force yourself to exercise like a completely able-bodied person would. Right now you have an illness to manage. Just because you can’t do things the way you used to, doesn’t mean you can’t do them at all–you just have to do it differently, and that is okay.

    Even with this graded approach, it was still unbelievably painful. The first two weeks will be absolute hell. Probably not the best motivation, I know, but I want you to be prepared. Plan in advance to take care of yourself extra well. With fibromyalgia, you can’t stop just because it hurts the next day: If you do, it’s the same as stopping a new medicine, and you will lose whatever progress your body has accomplished. When I started this, I was exhausted and beyond sore the next day, then more-so the next day, then even more-so the day after that and so forth…until the breakthrough happened. “The pain stage” finally passed, I started to reap the benefits of my exquisitely difficult labor, and from then on? My symptoms were actually worse if I didn’t exercise! There *is* a light after the tunnel. I wouldn’t recommend this for any other reason.

    Important: This is the exact opposite of treating myalgic encephalomyelitis, and part of the biggest proof that M.E., CFS, and FM are not the same entities. If your muscles begin to slow down the next day and are accompanied by burning muscle pain only upon movement, and these symptoms become worse every additional day until you are experiencing paralysis, you have more going on than “just” Fibromyalgia. If you’re suspected of the viral-induced neuromuscular disease myalgic encephalomyelitis, exercise will only cause symptom progression and irreparable damage, so STOP immediately. Other illnesses that cause different types of progressive muscle weakness in response to exertion are: Lyme disease, babesiosis, chronic viral infections such as CMV, EBV, and HHV-6, hyperthyroidism, and myasthenia gravis (which also results in paralysis). However, this is NOT AT ALL the same as experiencing more pain, more soreness, and more fatigue like you would with Fibromyalgia, because let me restate the obvious: You are going to hurt, be more exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.

Am I cured forever? Maybe. I have days where something strange will happen–a Lyme herx, a day of severe stress, a strong storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and this leads me to think maybe the mechanisms behind it are not actually gone as much as they’re just not currently active… But I no longer suffer from its trademark symptoms. I no longer have a dull, gnawing, all-encompassing ache in my entire body that never quits and doesn’t respond to any painkiller, that makes it difficult to move any joint from the stiffness, that makes it impossible to sit or stand in one place too long because the pressure causes a flare up in most of the tender points; I no longer have irritable bowel syndrome; I no longer wake up 10-20 times per night; I no longer have the specific sleep-deprivation-like brain fog that accompanies it.

Granted, I am still very much disabled, in constant pain, and live with cognitive impairments that sometimes make forming a sentence impossible…along with dozens of other symptoms. But at least it’s not fibromyalgia. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the recurrence of fibromyalgia-like pain syndromes in myalgic encephalomyelitis… But I have the feeling, with all I’ve been through the past eight years, if it were going to reappear wouldn’t it have already done so?

a rainbow at night

* Well, not anymore. The criteria for being diagnosed with FM no longer require you to have any tender points.
** You can read The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) to read about the various pain syndromes that accompany the disease; an FM syndrome is known to occur then slowly abate after several years, which is what happened to me, even though I still experience severe, incapacitating pain as a result of M.E. + damage from neuroborreliosis.

21 thoughts on “Remission from Fibromyalgia?

  1. Very informative article, indeed. Thank you for writing this! As I scrolled down, I said to myself, “YES, that I have heard before”. Be Well and Thank YOU so much for being YOU.

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  2. I have fallen out of remission after a tough and stressful spring/summer. Thank you for giving me hope and a road map towards getting back into remission. I also shared your blog with family and friends. It’s so hard for them to understand what it feels like to be in this body. You did a great job of explaining it…..Best of Luck to you!

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    • Until “someday” comes, I hope you can take advantage of all the information currently available to help you get through day to day life with a chronic pain condition, most of which is thoughtfully provided by fellow patients who share its reality. Your life, as it unfolds moment by moment, is the only one you’ll ever have, even when there is an illness, and you deserve to find what brings you joy.

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  3. A lot of this info is so incorrect. FM is never cured #1, studies are showing it’s not just problems with your muscles, joints tendons but central nervous system causing nerve fibers to go crazy and they are slowly connecting neuropathy to this and over 75% of fibro sufferers cannot exercise!

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    • Just as thirty years ago there was only Myalgic encephalomyelitis, with its specific symptoms, but then CFS was coined and the patient pool became severely diluted and research has been contradictory and AWFUL ever since, so has the pool of Fibromyalgia been diluted. The information is not incorrect, it just stems from a time when people with fibromyalgia weren’t diagnosed at the drop off a hat, allowing millions into the diagnosis who don’t actually have it.

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    • I know someone who was diagnosed with incurable cancer and the doctors told him he would be dead in six months.He declined treatment,sold his firm and went on a trip round the world with his wife and when he came back the cancer had miraculously disappeared.
      It is never helpful to tell anyone that something cannot be cured.Maybe it can´t but it is still better to have hope.
      I was diagnosed with fibromyalgia a couple of years ago and had a really bad time for 8 years, often not being able to leave my flat at all.But I,too, found that magnesium and exercise helps a lot and have been much better for over a year now. So please don´t discourage people – even scientists and doctors are at a loss sometimes and give explanations that may not encompass the whole truth.
      Thank you,Rainbow, for taking the trouble to inform people, I can only say my experience has been pretty much the same as yours although I didn´t try Aloe Vera but I did grow and eat leaves of Jiaogulan.

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  4. My name is Elias and I have fibromyalgia. I had it in 2008 for about 6 months from February 5 (felt nauseous and dizzy, foggy at onset) to sometime in August 2008 and actually wrote a journal of symptoms. It’s now 2014 and here’s the crazy part. My fibro is back started on feb 10 2014 to current. It was completely gone for 5+ years. I mean zero symptoms and now it’s back. So I know it goes into remission. Only thing is I don’t have any reason why it came back and last time just went away on its own. I tried the antidepressants but didn’t like how they made me feel so I took nothing at all. Just went away. But I did exercise a lot on good days. Fibro sucks and caused a lot of anxiety the first time around. This time I have less anxiety because I know what to expect. Also crazy thing is my symptoms are following my journal symptoms from first bout exactly. The symptoms have a pattern or life cycle for me at least. When I was waking up with tops of my hands and feet numb and morning stiffness in my hands in journal is same as when I’m having it now. So basically it’s a timeline of sorts. It has a life cycle! I’m now in the stage where I am getting muscle twitches and muscle fatigue/ stiffness and nausea and getting tired from not sleeping right. I will be okay you just have to believe!

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  5. Elias, you are exactly right! It does come and go and can go away for a very long time. I do believe in total healing. However, I believe we need to continue on the same healthy course to “stay” well. I don’t believe it is not curable. How can a doctor say it’s not curable, but we don’t know the actual cause. It’s impossible to know there is no cure when you don’t even know the cause. So it’s complete bologna for doctors to convince people that there are always going to battle FM. I have been in remission many times and I know that mine comes back because I feel so good that I stop exercising, meditating, stretching and I am a type A personality, so I stress all the time. I love sugar when I’m stressed, so I know this is another big factor in my flares. I usually have all sorts of scary symptoms that eventually fade away. They used to last for 3 months at a time and then go away for about 6 months to a year. The last flare I had only lasted for about 1 to 1 1/2 months and went away for about a year and a half. Another time is was gone for 3 years. If you just relax through the pain, exercise, eat healthy, take what works for you, as rainbow said, and stretch while doing deep breathing; things will improve and go into remission. I think the most important thing to remember is, If you have been convinced that you will never get better and that you will battle this syndrome forever, and that it only gets worse; then, it will. But if you believe that you can get better, you will find ways of coping and find that your body is capable of healing itself when you do the things to help it heal. This time around I plan to make notes to remind myself to continue to stretch and keep an active healthy lifestyle to stay well. I hope this has encouraged someone else. And, know, that you can get better and you will get better if you believe it and pursue it.
    God Bless! You are on your way to full recovery!

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    • “If you just relax through the pain, exercise, eat healthy, take what works for you, as rainbow said, and stretch while doing deep breathing; things will improve and go into remission.”

      Hi policewoman,

      I know this comment isn’t specifically for me, but since you mentioned me in this post I want to reiterate that I NEVER said if you just live a “healthy” life and do what’s “right” it’ll go away. I don’t even think you’re suggesting I said that, but I don’t want anyone to half-heartedly see your comment and think I did. :)

      Mine went into remission because that’s what it can do when caused by myalgic encephalomyelitis; that’s a known possibility in people with M.E. and secondary Fibromyalgia. I only purport the things in this post to suggest that IMPROVEMENT is possible with the above recommendations, because they helped me.

      I don’t personally know the chances of going in remission for fibromyalgia caused by things other than M.E., so I won’t comment on that. I do not claim the above things to have cured me, because it most likely went away on its own. What my recommendations DID do, was help me manage my symptoms whilst I had them. A lot of people with FMS-symptoms caused by other things than M.E. do seem to experience periods of relief, just like a lot of people go into remission from cancer. I also believe Fibromyalgia today is very overdiagnosed, and this affects the outlook society has on it, and the research. A lot of people say it has a lifecycle like Elias did, and you. I’m sure the various triggers can affect how each subset responds, and to what.

      So far, mine has been gone for seven years straight, with no relapses in between, even though I’ve been unable to exercise for years at a time, and had periods where I ate a bunch of sugar. Neither retriggered FMS, because my FMS was caused by trauma to the nervous system, like it is for a lot of people. FMS symptoms caused by other things will respond differently.

      I’ll post your comment here, but I do not personally believe you can “think” yourself into staying sick, and I would personally never suggest that because I find that extremely harmful to tell people who could potentially be suicidal as a result of severe disease.

      This illness is not your fault. Fibromyalgia is no one’s fault. The management of stress will help, but not cure it.

      There, I’ll get off my necessary soapbox. If you want to get metaphysical, I think our soul chooses the path that’s going to help us to learn the most while we’re here. Sometimes that includes achieving recovery in order to follow other paths. Sometimes illness remains a part of our journey, our teacher. Both ways of life are valuable and have meaning.

      I think we do have responsibility for what we CAN control. It takes a lot of strength to follow your own path when people are saying do otherwise, and I bet you are a remarkable person. It also takes a lot of strength to have tried these suggestions–often for years on end, since most people have–and accept the things that aren’t going anywhere, also when people are saying do otherwise. “The serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

      Thank you for your words, and I hope both you and Elias experience long remissions from your symptoms.

      Kit

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  6. My son (33) possibly has fm. He has been in extreme pain for far to long, approx 6 years. Did you go to a rhematologist for a diagnosis? I have recently started him on MSM and am hoping that this will help him. We will try the exercize and stretching that you have suggested. Thanks for the pillow and foam bed topping suggestion. We figured out the foam bed but we are still searching for a proper chair for him to sit in and a good pillow. Thanks for your info, it is so helpful to know that you are in remission and possibly my son may be as well. Than jar taking the time to write your story. Bernadette

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    • Bernadette,

      “Possibly” worries me! Since fibromyalgia is very overdiagnosed these days, I highly, highly suggest he rule out Lyme disease, using IGeneX laboratories in specific, as the other brand of tests 99% of doctors use is so inaccurate even the CDC states they’re not effective, and that because of this, rates of Lyme disease may actually be 10 TIMES the rate that is KNOWN. Plus, most doctors won’t check for other infections spread by the same ticks, which can also be terrible. (He can go to http://www.igenex.com, call them and they will actually mail him the kit to bring to his doctor.) If he’s tested for those infections through IGeneX and it comes back negative, then there’s a low chance of Lyme and its passenger friends being the cause. But it’s important to PROPERLY rule those out, because Lyme and the infections that travel with it inside the tick can be progressive and fatal without treatment (a harsh truth, but a truth nonetheless). I’m mentioning this because again, nearly everyone I know with Lyme disease was first diagnosed with something like CFS or FM before finding out it wasn’t FM at all, and you might not hear this from your doctors who aren’t familiar with it. I hope it’s not something as awful as this! But if so, there are treatments available, whereas fibromyalgia only has a symptom-based approach like the ones I mentioned above. May you and your son find fulfillment and peace, whether coexisting with disease or not. Thank you very much for reading my post, and sharing your thoughts with me.

      xo Kit

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  7. Over the last 16 months i have worked hard to make improving my health number one. Having CFS, FM, IBS, Restkess Lefs and sleep time is only a bother. I decided to do a little changes on my own after 7 meds were not doing the trick. I got horribly sick from a hamburger and life changed. I was sick and tired of being sick and tired.
    I started eating clean in processed foods. Fresh. My stomach started feeling better. Then I started dropping weight. Then I olunged in and started doing a little walking then hiking then the gym and a kayak. Wow. I was having great energy and the weight coming off. I still have days of pain but I don’t have near the pain I endured while I was at peak. I no longer take meds with the occasional something to sleep because I’m up all night. I try not to be in a fog and can tell when my body is ready to shut down and I stoo and let it recover. No exercise equals a painful day the next day.
    The bed has been important to me too. No doubt. I will try a few of your tips because i don’t this FM has gone away I think I’m working hard to keep it a couple miles behind me.
    Thanks for your side of the story as I was on line trying to find a link for a friend to understand my FM and how I am kinda I a remission but not really stage.
    Blessings to you

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