Monday, September 22, 2014

I have some nerves, or... More fun with fibromyalgia!

Mix Bakeshop
12oz Soy Mocha
Double-Chocolate Cookie
Almond Pineapple Sage Macaroon
(don't judge... it's a heavy-flow day...)

 I wrote a while ago about my fun times with fibromyalgia, which was mainly an overview of advice for people dealing with it (or people who are supporting someone dealing with it).  But there are some important updates and amendments and some tantalizing questions to share...

First, most of the advice still stands, though I would like to go back and tweak some of it, add a few asterisks, and such.  I would also recommend reading the handful of comments, because they include something I forgot to mention in the body of the article.  I mentioned there that I have wacky internal temperature regulation and I speculated that that might have something to do with the underlying cause of the condition, especially since my first signs of illness - a random and mysterious breakout of hives - appeared following a day of prolonged exposure to intense heat (I was at an uncovered bus stop for almost an hour in about 105 degree heat).

It turns out, I was totally right.

Last summer, there were a handful of stories about researchers claiming to have found the cause of fibromyalgia pain.  It goes something like this...

People with fibromyalgia were found to have an exceptionally high number of nerves surrounding the blood vessels in the skin on their palms.  These blood vessels are responsible for opening or closing to allow more or less blood flow to the extremities.  This is how we regulate our internal temperature when we are exposed to different external temps.  Fibromyalgiers, however, seem to have a dysfunction in this process, which doesn't just cause us discomfort, it seems to impede the whole circulatory process for our blood flow throughout our body.  These means deeper muscles may not be getting the blood they need to purge that lactic acid that then builds and causes so much pain at any given place throughout the body.

Hurray!  It's not in all in our heads!  Everybody was very pleased with themselves, as if the whole matter was solved.  But I had way more questions...

First, how does just having more nerves make them dysfunctional?  What is the stress link, since that seems to be a necessary trigger for the condition?  Are we born with all these nerves, or does our body grow them for some reason?

Reflecting on my own life, and talking with other family members, I believe I was born with the preconditions for the disease, but it still took a trigger to kick it off.  My mother, for instance, has the same wonky temperature traits that I always have.  Like me, she's freezing in cold weather and can't seem to get warm, until she finally heats up, but is, by then, overheated and now can't cool down.  Likewise, in hot weather.  There are hot days when I'm shivering and have to put on a sweater - and then I'm burning up and have to lay motionless in the air conditioning until I'm okay again.  But, while my mom and I share these and other quirks, my mother does not have fibromyalgia.

So, with this new info in mind, I want to amend my recommendation on exercise: Don't just do 5 minutes a day to start and then increase to longer duration walks or other low-impact workouts.  Instead, do five minute sessions of movement - stretches, walking, whatever - every hour or so throughout the day.  Or something along those lines.  The issue is keeping the circulation going throughout your body throughout the day.  Keep it gentle and rest until you are fully cooled down again.  I have come to accept that lying on the floor is not being lazy.  I can literally feel the inflammation of my muscles go down if I lie down long enough.

Circulation and inflammation - these are your battles.  I mentioned aiming for an anti-inflammatory diet and encouraged anti-inflammatory supplements (like vitamins E and C, or turmeric, which has also had encouraging results in some recent studies, but I recommend looking into that more because my experience with different brands has been very mixed), but I didn't really appreciate my level of inflammation until I had a blood test to measure it.  We were measuring my CRP levels (I believe) and they were more than 4 times higher than the usual range.

Oh, I said.

I decided to put more emphasis on the anti-inflammatory pieces of my supplement regimen.  I also recently watched the documentary "Fat, Sick, and Nearly Dead" which followed one man's (then more people's) efforts to heal his body through an extended juice fast.  That kind of fruit and vegetable centered diet has strong anti-inflammatory effect.  When he started, was suffering from the same chronic urticaria (hives) that I suffered from when my fibromyalgia symptoms kicked off.  It took several years for me to figure out how to get rid of those, but the (semi-)cure was essentially along the same lines - healing that inflamed, deteriorated gut.

I was able to identify that my allergic reaction was definitely triggered by ingesting dairy.  So, while cutting lactose out of my diet, I started taking acidophilus supplements as well to re-seed my gut.  A condition that had needed to be managed with 40mg a day of Zyrtec for almost 4 years essentially vanished.  I still needed to take some dairy pills if I wanted to eat some ice cream, but I wouldn't be covered in hives afterward.  What I have since discovered, though, is that my continued stress continues to re-injure my gut and my intolerance will continue to flare up.  I also know now that it's not just the lactose but the protein in dairy as well that inflames my body.

It's important to appreciate how much a damaged gut affects our health.  I think I mentioned that last time, but given what I've been reading about nerves and the effects of different chemistry on them, I think it may be a crucial piece of the puzzle.  And in a roundabout way that brings me to an interesting condition I read about separate from my fibromyalgia reading that seems to be described exactly by the extra nerves around the blood vessels thing they just discovered with fibromyalgia.  Following me still?  Walk with me a little bit more...

So, Raynaud's disease seems to be present in people who don't have FM, but the symptoms are also found in many fibromyalgiers.  Some symptoms include - oh look! - blood vessels in the hands collapsing in cold weather or under intense emotional stress, or even numbness in the extremities, for instance...  The truly interesting thing I found while I was reading this was the mention of Calcium Channel Blockers among the treatments for the more serious versions of this disease.  Hmm, I thought... How do those work?

I will spare you the explanation of how those work.  Because it's long.  And technical.  And I'm tired.  The part of the explanation of CCBs as drugs (mainly used to reduce blood-pressure) was the mention that magnesium was a natural antagonist to the calcium ions in the blood, and could, therefore, intensify the effects.  Why is that interesting?  I mentioned that, although I tested for normal levels of magnesium in my blood, I benefited hugely from taking magnesium supplements.

I take a lot of magnesium.  A lot.  It is the most essential of all my pills.  Without it, I will quickly be incapacitated by the pain.  (I was reminded of this when I got sick a little while ago and couldn't keep any of my pills down - it didn't take a full 24 hours til I was in major suffering).  I understood it to be a muscle relaxer, but from what I was reading, it appears to work by keeping those blood vessels open.  Those pesky, malfunctioning blood vessels.  The magnesium is helping, at least to a certain extent, to keep things circulating.

Now, before you go out and chuck your calcium pills (which are shoved down every woman's throat in this country), be aware that I still take a calcium supplement.  I just take a much smaller amount.  Small doses are hard to find - I had to go with a gummy variety because the serving size was 2 gummies for a 500mg dose, so I can take just one if I need less.  And how much I need varies a lot - even by season, it seems.  I have gotten to know myself well enough to tease out the lack-of-calcium pain over the other varieties of pain I experience.

So what does this all mean?  I'm still not entirely sure, but my suspicion is that it comes down to whatever chemistry is being produced by our stress-damaged guts.  For example, from what I was reading, we don't produce more nerves in our body, but we can repair ones that we had.  There also seems to be a difference in the kind of nerves - longer ones versus many-branching ones - that can be regrown, by changing the molecules available to tell the nerves to regrow...

Or something.  Clearly, I am making due without all my available neurons.

All I can say is what I've said before - I believe it is both genetic and environmental.  My mother and I both seem to have more nerves (I believe in more than just the hand, though that is what those studies focused on) than we should (we've both been told we have odd or extra nerves by our dentists).  My mother also mentioned that she was told after a surgery that she had blood vessels in places she wasn't supposed to.  Related?  Quite possibly, I believe.  But the bottom line remains that it took more than just a predisposition to manifest the disease.  Perhaps, since my stresses started early in life and persisted, I was more likely to experience it while she was not.  Perhaps, it was the body's attempts to heal that inadvertently triggered the wrong kind of regrowth of stress-damaged nerves...

I really don't know.  I'm just speculating.  However long it takes us to understand all the mechanics, I believe that managing it remains essentially the same - healing the damage of stress.

It will be a long, long process to fully heal, but I think it is entirely possible.

Good golly, it's late.  No edits.  Night!

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