For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.

 

I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., I guess you do have headaches). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy… Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing which should be diagnosed after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because my TS does act up when I get new infections, however, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years, so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…

Which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.

 

The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

 

a rainbow at night

Unpopular opinion time: Which is better?

I don’t know why this is an unpopular opinion, but it is:

I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.

If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, would not have given me the lessons I was meant to learn, so here I am.

Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.

All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had.

This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which simply seek to be realistic, accept What Is, and not live life in a constant state of wanting. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but that suffering also exists– as a fact and not a punishment.

Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating.

I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it. But while you’re waiting for things to change, you have to accept the way things currently are; you have to realize what you have, and realize how blessed/fortunate you are to even have that. If you have something that the majority of the world does not, you are blessed.

You have to realize how amazing it is that you have methods to help manage your illness; medicine to help ease your pain; things like soft beds to lie in; the right food to eat when so many of us have allergies and intolerances, a place to live that has temperature control when most of us have dysautonomia. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do.

I can’t forget that if I were somewhere else without these accomodations, I would perish.

Of course it is disappointing when there exists external items to help you even further, that are created for the purpose of helping–like money, certain foods, certain medical treatments–and for whatever reason, you don’t have access to them.

All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both seperate, distinct conditions). I see people with Lyme disease and its related infections trying to raise funds for their own treatment and cure which DOES exist, but because our government does not currently believe in our illness, getting access to it is sometimes impossible. I see people who are disabled and, due to the system we’ve created, should be able to receive benefits to live on, but are not getting them. Things are not perfect.

But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago?

Sometimes when I am in those situations–lacking things that I “should” have, but do not–I try to find gratitude for those that do have them. I try to be happy for those whose test results and various means of funding enabled them to get PICC lines and ports and hyperbaric oxygen therapy; somewhere there is a person who cannot get any antibiotics, who wishes they had the medication I do. Somewhere out there is a person who wishes they had a doctor who believed them; adequate pain management; funding to get accomodations for daily living; friends who were there for them; family who supported them.

I’m still going to be extremely disgruntled when my head feels like it’d be better off removed.

I’m still going to feel like crying when I hear another child with M.E. has been forced into asylym because their doctors do not understand what they’re doing.

I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system is too poor to make the tests show my positive antibiodies.

Again, I am not saying we are to be emotionless zombies without a reaction to anything. I don’t want to type this and make it seem like I live in another world where nothing bothers me. I am trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.

I just find it better to guide our thoughts into being thankful, instead of dedicating so much of our time and energy to things we do not possess; self-compassion is better than self-pity. I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled, but blessed that we got sick in a place where anything at all could be done for us.

I just find it better to live in gratitude.

 

a rainbow at night

(Postscript: I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed it enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)

I have a hive? You’ve got to be kidding me.

How can the mycoplasma pneumonia still be alive?!

…Or at least, that was my first thought when this all-too-familiar hive popped up on my leg, in the same spot it always does when, what I’ve always suspected to be the mycoplasma, flares up.

It usually went something like:

Get hive on leg → Concurrent lung problems and coughing/sometimes pleurisy → ER visit or an otherwise-very-close-call

The hive part usually happens–from observing my own patterns and bloodwork–because of eosinophilia, associated with the mycoplasma infection. Bartonella (and whatever else I got from the fleas) causes it as well (so when I got them BOTH back in 2008, my eosinophils were really high)…but the bart should be gone, right? I didn’t get hives when I got re-infected with bartonella (and again, whatever else I got from those fleas) back in August 2011, so I’m thinking that leads further evidence toward hives being associated with mycoplasma.

You’d think it’d be dead by now after being on Rifampin a year, and Zithro for several simultaneous months with it, but since Mycoplasma is slow-replicating like Lyme disease (roughly replicating every three weeks, from what I’ve been able to find, and experience), I guess it makes sense that it’d take more along the lines of years to fully eradicate, just like Lyme disease. (Antibiotics, specifically the bacteriostatic ones, mainly kill when the bug replicates.)

Additionally, checking my tags, the last time I had a hive was right before I had to stop the Zithro because it stopped working for the bartonella. Right before that happened, I was beginning to get another severe flare-of-“unknown”-origin, with the proverbial-possibly-mycoplasma-hive warning sign before it started…

Then after switching from the Zithro to Bactrim (still with the Rifampin, to finish off the bartonella) I haven’t had a hive since.

Until now, that is. After starting the minocycline. Which also kills mycoplasma. More specifically, which also kills mycoplasma in the same way that Zithro kills mycoplasma. Hmmmmmmm.

So apparently this is a herx? And if I do get the impending very-bad-flare-up, I doubt it’ll result in an ER visit, since I’m not near as sick as I was before.

But still, this is disturbing, and.. I just wish the mycoplasma were dead!!

Time will tell what Mr. Hive has to say about my infectious status. Til then, I’m glad to be on minocycline…

Oh, also, I’m buying a shower chair. Yeah.

a rainbow at night

On livers and Lyme and dystonia and…another antibiotic break.

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics, beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street, no rainbows at night, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania has the exact same problems I do (also hypertonia, also brain lesions) and despite telling her this, she really didn’t “get” that we were having the same issues or that I really did understand what she meant when she explained them! Then one day I guess I explained it pretty well, and she understood, and didn’t feel so alone. I wish all of us Lymies could record ourselves having these problems and put them on YouTube to give each other some comfort that we’re not alone…but I don’t know how many would go through with it. I know I don’t want people to see me when I’m having these problems; like most, I’d rather just wait it out! :\

Anyway. So a typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was giving them the action I wanted them to perform but everything was going very..very…..slow…… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above, for another it was all I could do just to roll onto my back and take medicine, another was gastrointestinal nerve problems that immobilized me in pain, then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares; it has been an incredibly difficult couple of weeks! What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city. Well, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.

 

I’ve been doing a lot of art lately to help me cope, so here are a few pieces. Three photos, three paintings. You can click on “Permalink” when they open in the gallery, to read more about any piece you want.

Things I want to add into this post but have no idea how:

  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

a rainbow at night

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