Fibromyalgia. Maybe.

2Sometime last year I went to the doctor for extreme tiredness, despite adequate sleep and regular exercise, and joint pain and, well really a list of things. He poked and prodded and listened and then told me I might have Fibromyalgia. I think I mentioned this once before here, right after he told me and I basically ignored him. I don’t want Fibromyalgia. No one really knows what to do with that, least of all me. So I went about ignoring it and hurting every now and again and ignoring that as well. Sure it crossed my mind every once in awhile. Wondering if I actually had said confusing disease. Is it even a disease? I honestly don’t remember because I did all my reading on it a few days after the possible diagnosis and then I, you guessed it, ignored it.

I even had several tests done because my hands kept going numb and I was having a lot of wrist pain. I was checked for carpal tunnel and nerve damage. I had very mild carpal tunnel and not really any nerve damage.  So since I wasn’t going to need to worry about those two things. I ignored any discomfort I had and moved on.

This past November I began having some issues again. For a week I was having heart palpitations. I figured it was stress related and it would go away in a day or so, since my mother in law had just died. A few days had gone by and I was still having them, along with feeling out of breath and convinced my heart was beating irregularly. Since I have predominate heart disease in my family my doctor sent me to the cardiologist. It was in his office that he asked me if I had Fibromyalgia, I’m assuming the chart said I did. It was then I remembered that I’d been told that a year or so ago.

The cardiologist did an EKG and a heart echo and a treadmill stress test. All came back fine. Diagnosis stress induced heart palpitations and the reminder that I quite possibly have Fibromyalgia. Dammit.

You may ask what my hang up with Fibro is? I would tell you quite honestly I don’t understand it. I don’t like that I don’t understand it and that it has a hold on me. Making me feel so tired and drained that if I sit down for long enough I fall asleep. I don’t nap, but when I’m having, what I now call an episode or flare up, of said misunderstood issue I sure do. Despite being able to physically do just about anything, the motivation to do it and the knowledge that I’m quite possibly going to hurt like hell for a few days after make me not even want to move. Despite all this I’m still going to the gym and working with my trainer, however during my flare up I’m doing good to go twice a week opposed to my three to four times a week.

During my two-week flare up or whatever the hell it is, I’ve noticed all kinds of things I’ve been ignoring. Like how it seems when I’m having a flare up I have vision issues. Like my eyes feel fuzzy or blurry. My head will get a weird feeling, that I can’t even explain and when I try to I just sound crazy and people look at me like, huh. My neck hurts a lot as does my back and I don’t sleep as well because my neck will wake me up. Are all these connected to fibromyalgia? I don’t know? I’ve tackle them one by one at some point or another over the years and it’s never been anything serious. I’ve tried to Google what other people feel or experience during a flare up, but there really doesn’t seem to be a site that I’m aware of that tells me that these things are fibromyalgia.

So, I get a bit frustrated and then I try to ignore it. I’m not dying and I don’t seem to have an illness, other than maybe a mild case of hypochondria.

So I guess I probably do have Fibromyalgia. I don’t like it and I don’t understand it fully. I don’t fully understand what it does or what it causes. However ignoring it is getting harder and harder.

Dammit.

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About theagnosticswife

Living in the bible belt, in middle America, with a once Christian husband who has turned Agnostic. I no longer know what I believe.
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17 Responses to Fibromyalgia. Maybe.

  1. ... Zoe ~ says:

    Although researchers initially thought the disease affected muscle tissue, we now know it is due to the impairment of pain processing mechanisms within the central nervous system. The preferred term today is “chronic widespread pain.” – quote about Fibromyalgia – The Arthritis Society

    I’ll send you the link in my next comment. Doing this on the fly.

  2. ... Zoe ~ says:

    Shoot that didn’t work. That’s what I get for doing it on the fly. Here’s the link but it won’t be a hyperlink.

    http://www.arthritis.ca/page.aspx?pid=928

  3. Jenny says:

    I’m sure they have checked your thyroid levels?

  4. Gina says:

    If your doctor has not already checked you, Please PLEASE get checked for Vitamin B12 deficiency and anemia/pernicious anemia. Google b12 deficiency and you can check symptoms and testing. Breathlessness is a huge sign of b12/anemia. It causes heart palps, pain, fatigue, dizziness, vision disturbances, everything you list.

    I have had “fibromyalgia” for years with many of the symptoms you have. A new GP finally figured it out and I had/have a very serious deficiency.

    What tests you need for sure are b12 serum, and MMA (Serum methylmalonic acid) and homocysteine levels. If your serum level is low and your MMA is high, you have a deficiency. Your doctor should also check folate levels, and CBC (to look for enlarged red blood cells), iron serum, etc. DO NOT let anyone give you any b12 supplements, tablets, shots, sublinguals, etc before you get fully tested or they will mess up the results thereby causing the doctor to miss a b12 deficiency. If you have a very low level deficiency, supplements will not help but only hinder test results. If your doctor doesn’t know what all that means, go to another. Another site that can help you is:
    http://b12awareness.org/

    I had to get “loading dose” injections of cyanocobamalin 1000mcg for five days straight, then have been getting shots (not often enough imho) which I will have to take monthly for two years. I feel so much better already but it will take time to heal all the nerves that were damaged. I feel I have had this deficiency for years and it has caused me a great deal of pain and suffering.

    I saw your blog through a google alert email that comes to me everyday. I set it up to get new items on the web about fibromyalgia when I was researching it. I hope this helps you. Maybe God sent me. Maybe it will not pan out, but at least you’ll know. My best to you.

    • Thank you for the info. Checking for b12 deficiency is a good idea. I have had a blood panel several times that check for several things. It has always been fine. I might be looking for a new GP soon I’ll address it at that time.

      I heard someone say if you take antacids it can affect your b12. Ivd not researched that yet though. Something to look into.

  5. jinkies says:

    I don’t have anything to offer, but I do hope that you’re able to start feeling better soon!

  6. Michael Mock says:

    Yeah, what jinkies said: I hope you feel better, soon.

  7. Ruth says:

    Yikes! What everybody else said. I’ve got nothing to add except that widespread pain and fatigue seem to be symptoms for a so many different diseases/disorders that it’s hard to diagnose. Hope you find some relief soon. I’m guessing you’ve already been tested for Lupus, RA and MS?

  8. ... Zoe ~ says:

    http://www.arthritis.ca/document.doc?id=325

    This is a link to the info in document form. Not sure if it will hyperlink from here. I sent you an email with the link too. Hope one of these works. :-)

    I’m considering a Mac when we get home.

  9. tlethbridge says:

    AW, I don’t know anything about fibromyalgia, but I did want to check on you since it has been so long since you posted. I hope everything is OK.

    • Yes, I’m doing ok. I’ve not had any issues for awhile now, hopefully that keeps up. I’ve been wanting to write for sometime now, but I just don’t know what to write about. Maybe something will come to me soon.

      Thank you for checking on me. :)

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