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 a 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 (NOT just the most common thirteen available on standard testing). Additionally you may watch Under Our Skin, am excellent documentary film containing people with FM (as well as other diseases like Multiple Sclerosis and Parkinson’s) 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.
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.
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!
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.
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 can’t stomach the drinkable form so I’ve been taking them daily in capsules for eleven years. While aloe vera 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 these freeze dried aloe vera juice capsules from Pharm-Aloe are much simpler, if you ask me.
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.
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