Remission from Fibromyalgia?

I don’t talk much about Fibromyalgia (FM) because it’s been so many years since I had it. A topic I read about even less, is the remission from this syndrome. But I still remember what it felt like and what it entailed, particularly before its supposed symptoms got muddied by research done on people who have innumerable other conditions, or co-morbid conditions.

I suppose I’ll start with an explaination of what is it/how it feels. Then I’ll explain what I did to help my own case, that eventually led to a remission.


Fibromyalgia is a a pain syndrome that is usually triggered by a 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 pain and joint stiffness, but without inflammation. The syndrome does not actually damage the joints or muscles–it just feels like it! There is an extreme sensitivity to pressure (allodynia). Things that would normally not hurt, such as getting a gentle hug, become extremely and lingeringly painful. The pain never stops, and is absolutely everywhere, all the time, but may focus more around the tender point locations necessary for diagnosis. Someone with FM will be hurting when they are sitting, standing, and lying down. Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches.

Sleep problems include an inability to fall asleep, but particularly staying asleep. Someone with FM may wake up every hour, all night long, without anything to help cure the root of the problem, which is the brain’s inability to conduct normal sleep waves. FM is thus also accompanied by a great degree of fatigue, that may or may not be managable. 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 every day items, and silly things like placing the television remote in the freezer and the frozen peas on top the entertainment center. (Or pouring your milk in the trash and the tea down the sink… 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, cold sensitivity (someone with FM can always tell when the weather is about to change), and a high rate of restless legs syndrome. Stress is not the cause of fibromyalgia, but stress exacerbates any chronic disease, 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 when it is associated with Myalgic Encephalomyelitis. But what about otherwise? Does treating the main disease causing the FM, make the FM go away? That certain wasn’t the case when I fell ill; my FM stayed when the M.E. went into remission, and went away after I got Lyme disease! What makes this even more difficult to determine, is its consistent over-diagnosis. For instance, there are probably thousands of people who have been diagnosed with FM who actually have M.E., who just had the unfortunate circumstance of being diagnosed with FM first, and just stopped looking for other explanations. And nearly everyone I know with Lyme disease initially had a diagnosis of Chronic Fatigue Syndrome or Fibromyalgia (or both) before they found out the actual cause of their symptoms; I wish I were only exaggerating!

I’m not sure where I fit in with that group. Things happened to me in the reverse order that would otherwise “make sense.” But I will write about that next, in a post describing the differences between CFS, M.E., FM, and Lyme disease.

For right now, I want to talk a little about how I treated the syndrome, in case that might be of help to others. I don’t claim these to be the cure–I think it most likely remitted of its own natural accord–but they did help me immensely, and I could always, always tell when I was forgetting one of them. Maybe someone else will also find relief?

  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 overanalyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain ole 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

    This might should actually be number one… It’s that important. You have to understand that fibromyalgia is made worse by contact (in general, really, but especially) with the pressure points…which, if you’ve been diagnosed, you might know are practically everywhere. It should then be easy to grasp why relieving this pressure whilst sleeping is absolutely essential to easing your symptoms, especially when you’re pressing on them for eight hours at once. Invest in this, no matter what. You will not regret it. I couldn’t sleep on something that didn’t have my two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would wake up after a couple of hours in excrutiating pain, from the pressure on these tender points. Sleeping better will also help your cognitive abilities (memory and mental functions) improve.

    • Also, 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 reknown 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 or inabilities 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, but I noticed I had more energy and was not 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 than sugar, containing mostly fructose and glucose (instead of sucrose), so your body can use more of its properties 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 most IBS sufferers cycle in-and-out throughout, sometimes, even the same day). I’ve had people tell me they’ve even been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction?

    Puritan’s Pride recently changed their aloe vera gel capsules, and I’ve noticed that even though the strength hasn’t changed, I now need two of these daily to give me the same effect as one of their old-model capsules. :\ But I’ve been taking one (well now, two) a day for at least eight years. It has many other health benefits, but mostly, it’s to protect the intestinal tract and help keep things from acting out, whether one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just the ground leaf, like you may also find if you’re searching for an aloe vera product. People have also told me they get relief from drinking it, but the gel capsules are much simpler, if you ask me.

  5. Flexeril.

    This is one of the first things your doctor used to give you for Fibromyalgia before Lyrica came around. It’s a muscle relaxant that some say is similar to tricyclic antidepressants (but you’re not taking it to cure some delusional illness belief), while others say it’s more similar to cyproheptadine (which is typically an allergy medication that has an extensive list of other uses)… My vote is on the latter, because I’m extremely sensitive to it, like I am to cyproheptadine. The point is this: People with fibromyalgia do not enter the restorative stage of sleep as often as healthy people, so whenever you do, you have to make it count.

    Flexeril (and other similar drugs, but this is the one usually handed out) 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 noticable, particular when you’re in one of those “waking up every hour” phases that leave you a zombie during the day, and contributes substantially to the “fibro fog” part of the illness. You may not be able to keep from awakening fifty times a night, but at least you’ll get the most out of whatever sleep you do get. Now, I eventually had to switch to Robaxin (methocarbamol, another muscle relaxant) because I couldn’t tolerate the sedative effect of Flexeril, 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 (1) how much exercise is essential for fibromyalgia, nor (2) how difficult it is to get started. Second to no other treatment does it improve fatigue and stamina, and only second to the mattress topper did it improve my pain (i.e., it helped a lot). 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 don’t mistake this for being a treatment for M.E., which again, is not the same as CFS. I absolutely could not exercise until my 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. At first, I could only walk laps around my house in five increments of three minutes each, spread out across the day. Next, I moved on to three increments of five minutes each (i.e., more activity at once). Also, every morning I would sit up, and very slowly rotate all of my joints, to fight the terrible morning stiffness; it was practically the only way I could move, particularly during the colder months. Then I started adding in the gentle stretching, using a similar method: First, five minutes a day of very slow, gentle stretching, only as far as my muscles could go, and eventually I was able to stretch for a full fifteen minute routine at once, with some music to make it more enjoyable.

    Do not try to do it all at once at first, nor force yourself to stretch like a “normal” person would–you are not normal! Even with this graded approach, it was still unbelievably painful, and followed the next day by a huge increase in pain. But with fibromyalgia, you don’t stop just because it hurts the next day; you cannot, or you will lose whatever progress your body has accomplished. The first two weeks were absolute hell. I was exhausted and beyond sore the next day, and moreso the day after that, and so forth, until “the pain stage” (as I not-so-affectionately call it) finally passed. Then I started to reap the benefits of my very hard labor, and noticed that my symptoms were actually worse if I didn’t exercise. (Only someone with FM can understand how mind-numbingly painful it is just to try and stretch for five minutes at a time!)

    Important: This is the exact opposite of treating myalgic encephalomyelitis, and in my opinion, the biggest proof that M.E., CFS, and FM are not the same thing. If your muscles become inconsolably weak and begin to fail the next day, and worser still every additional day to the point that they may even literally stop working, you have more going on than “just” Fibromyalgia. Additional exercise will causes illness progression in M.E., so STOP. (Also possible, if not M.E., is that you may have Lyme disease and/or Babesiosis, chronic viral infection, hyperthyroidism, et cetera; i.e. other illnesses that cause muscle weakness in response to exercise, with no eventual benefit.) But this is NOT the same as experiencing more pain or fatigue like you would with Fibromyalgia, because let me be the first to state the obvious: You are going to hurt, and be 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 herx from my medicine, a day of severe stress, a storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and leads me to think the mechanisms behind it may not actually be gone as much as they’re just not currently active. But I no longer suffer from its trademark symptoms. Even the type of cognitive problems I experience now, with the M.E. and Lyme disease, are different than that which accompanied the Fibromyalgia. And I no longer have chronic pain in all of my muscles and tendons, irritable bowel syndrome, or trouble waking up 10-20 times per night.

And I thank God for that, because if I had to deal with that terrible illness on top of the severe disease I already battle, I don’t know what my life would be like, or if I’d even still have one. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the reoccurence of FM in myalgic encephalomyelitis… I have the feeling though, that with all I’ve been through the past five years, if it were going to reappear, wouldn’t it have already done so?

a rainbow at night

Black bean brownies, anyone?

Time for something lighthearted now, yes? Last week I made black bean brownies. Yes, you read correctly: Brownies made from black beans. The recipe I used is this one, but I altered it so that in addition to being gluten free, dairy free, and soy free, they’re also sugar free. :) Use these directions if you’re feeling brave enough to consider a baked delight with beans instead of flour (and remember, chocolate comes from beans!).

Ingredients

  • 1 (15.5 ounce) can black beans, rinsed and drained
  • 3 eggs
  • 3 tablespoons vegetable oil
  • 1/4 cup unsweetened cocoa powder
  • 1 pinch salt
  • 1 teaspoon vanilla extract
  • 1 cup Xylitol
  • 1 teaspoon instant coffee (technically optional, but highly recommended)
  • 1 teaspoon baking powder (also optional, but recommended if you want cake-like brownies)

Directions

  1. Preheat oven to 325 degrees F (160 degrees C). Lightly grease an 8×8 square baking dish.
  2. Combine the black beans, eggs, oil, cocoa powder, salt, vanilla extract, xylitol, instant coffee, and any optional ingredients in a blender; blend until smooth; pour the mixture into the prepared baking dish.
  3. Bake in the preheated oven until the top is dry and the edges start to pull away from the sides of the pan, about 30 minutes.

Nutritional Information

Serving Size 1/16 of a recipe
Servings Per Recipe 16

Amount Per Serving
Calories 126
Calories from Fat 48

% Daily Value *
Total Fat 5.3g 8 %
Saturated Fat 1.8g 9 %
Cholesterol 40mg 13 %
Sodium 144mg 6 %
Potassium 139mg 4 %
Total Carbohydrates 18.1g 6 %
Dietary Fiber 2.6g 11 %
Protein 3.3g 7 %

Vitamin A < 1 %
Vitamin C 1 %
Calcium 2 %
Iron 10 %
Thiamin 5 %
Niacin 7 %
Vitamin B6 2 %
Magnesium 8 %
Folate 12 %
* Percent Daily Values are based on a 2,000 calorie diet. Your daily values may be higher or lower depending on your calorie needs.

Of course you can add walnuts or anything else you might like. The purpose of the instant coffee is to bring out the flavor of the cocoa. Also, I didn’t use baking powder, and my entire family was thrown off by the texture, so you probably want to add it; I’ve never met a brownie I didn’t like–fudge-like or cake-like–so it didn’t matter to me!

For my version of these, I lowered the original recipe’s temperature because Xylitol requires this. Xylitol is a popular sweetener in the Lyme world, because not only is it a natural alternative sweetener for folks like us who need to be on reduced-carb and reduced-sugar diets, but it actually helps reduce levels of candida yeast! It tastes exactly like sugar, but please don’t take this as an excuse to over-indulge. First off, studies have shown that the absence of sugar (glucose) is actually more beneficial to the reduction of candida levels than is the addition of Xylitol. In other words, don’t think that just because you eat still sugar but also eat xylitol, that the xylitol will take care of the candida, because it won’t. Also, xylitol (like all sugar alcohols) can have a laxitive effect if you consume too much!

But otherwise, happy sweet tooths, my dear readers. :) You can find Xylitol at most all health food stores, but it’s also available online under names like XyloSweet.

a rainbow at night

A positive post, with more improvement!

I’ve set some goals for myself:

  1. Brush teeth standing up.
  2. Get out of wheelchair.
  3. Cook for myself.
  4. DRIVE again.
  5. Be able to sit up straight, before I get back problems.

I’ve even already made progess with a few of them. The other day I was able to stand while brushing my teeth, and I’ve been doing it ever since. =) And I’ve been out of my wheelchair most of the time. Yesterday, I even danced! My POTS symptoms, as I mentioned in last post, are much improved but it just depends upon the time of day. I’m trying at various intervals to sit up straight, but I can’t push it too much. I only just now became able to sit up on my own at all; I mustn’t go too far! I now eat twice a day, every day, with lots of healthy snacks in between, and haven’t needed to supplement with Ensure as much. I don’t have as much digestion-related dysautonomia, so I don’t have to split up my meals like I have been for the past two months. It’s such a relief. Since my hospitalization, I was subsconsiously on edge because I never knew what would trigger that domino-effect of terrible symptoms, but I finally feel stable again.

I’m still seeing things. I get headaches every evening around 4-5 o’clock, which has been my pattern since starting the the Rifampin in January. After the Zithro in the late evening (around 6pm), they get worse. Last night my neck was very stiff; it was difficult to even turn my head to the side. I need ibuprofen almost daily at around the 4-5pm interval, as well. The lymph nodes in my throat begin to ache and I feel generally inflamed. I’m lucky that after a decade of taking it, I can still tolerate the ibuprofen, which I attribute to always, ALWAYS taking it with food, or a full glass of milk to coat the stomach. (The aloe vera gel I’ve taken every day for the past seven years probably doesn’t hurt, either.)

Probably the most amazing news I have, is that my 2nd Lyme flare cycle–which I’m near positive began after taking grapefruit seed extract (GFSE) in July of 2010–is, from what I can tell, vanishing. GFSE is known to be a cyst-buster, so my best assumption is that.. it actually did, and the result was another set of replicating Lyme bacteria? This 2nd flare cycle was always milder than my “main” flare cycle (which occurs roughly around the 16-20th), but still encompassed the same type of symptoms: Left sided problems, spine pain, cardiac arrhythmias, severe headaches, and higher fever.

I made a brief mention of this last month, while I was wearing the holter monitor and expecting it to pick up on the arrhythmias that would be happening near the beginning of April… Only to find out, nothing happened at the beginning of April! And this month is the same. I’ve not had any fever, nor severe headache, nor explosion of arrhythmia, nor spine problems. There was the neck pain from last night that I mentioned, and I had one episode of spontaneous arrhythmia yesterday, but this is nothing compared to what “should” be happening. This must mean something very good. =)

Also, I don’t think I ever got to mention my cardiologist appointment on the seventh. He basically said there was nothing there but a fast heartbeat…which is ludicrous, because 90% of the time when I had to press the alert button, I was lying down with a normal heart pace. :\ Unfortunately my appt was early in the morning and I wasn’t able to probe deeper and dispute his “it’s just fast” theory. Doctors are trained to not worry the patient unecessarily, so my best guess is, since he kept repeating “it’s nothing dangerous,” is that whatever was there, he doesn’t think is enough to cause concern. Because of this vanishing 2nd flare cycle, I never did get to record the main, most-troubling arrhytmias that I was having… Which is bittersweet, right? I’m glad that they’re gone, but I wish they had happened while something some recording!!!

I think I’ll end this entry with a new ability scale checkpoint. :) As of right now I think myself to be at.. 20% physical, 35% cognitive, and 28% symptom severity. I had went downwards since my last checkpoint, but I’m back up again, so my physical ability is about the same, I’m slighlty better cognitively, and much better (compared a 7%, at least) with symptom severity.

My mother and I are planning a trip to Walmart for tomorrow. Two sickly women with illnesses that contradict each other, plotting how to attack a supermarket. It should be interesting! I need to find the right time of day to approach so that I won’t need to wait 20 minutes for a mobile scooter to become available! This will be the first time I’ve left the house since that April doctor visit. I can’t wait.

a rainbow at night