Still undecided…and rambling.

I am still undecided on the issue I mentioned in the prior post. Do I? Do I not? Does it really matter? Will it help someone? Will it harm me to dredge it all up again on “paper”? Do I want it out there for everyone to read? If I DO submit, do I do it under Tigger or another name? Do I link back to here or not? It’s not like family knows about either blog, and neither do my friends. Well, they know I have one but they don’t know where it is. And I’ve been careful (I think) not to associate my real name with them so they can’t find me. And my story is…a lot of vagueness. A lot of misty thoughts, memories, etc. There are only a few concrete things, and even those are…not remembered so well.
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In other news…well, there really isn’t any. The weather might be shaping up so I can start walking again. I tried to get into a clinical research trial for neuropathic pain, but they think my fibro is going to exclude me. I don’t know WHY, when fibro IS neuropathic pain…but whatever.

I was doing some research today and found a lot of really interesting info on fibro from a biological standpoint. It got me to thinking: I was diagnosed with TMJ when I was 16, and hypoglycemia at 17. I have had so many digestive issues over the years. If someone comes up and pokes me, or I brush up against something, I feel a “memory” of that for a good 5-10 minutes…and have recently discovered that not everyone feels that! I never knew it was unusual. I thought I had really tense muscles or good muscle memory!

I often get asked by docs if anything worsens my symptoms and when I tell them yes, everything…they look at me blankly. I’m not sure why: An epidemiology study consisting of an internet-based survey of 2,596 people with fibromyalgia reported that the most frequently cited factors perceived to worsen fibromyalgia symptoms were emotional distress (83%), weather changes (80%), sleeping problems (79%), strenuous activity (70%), mental stress (68%), worrying (60%), car travel (57%), family conflicts (52%), physical injuries (50%) and physical inactivity (50%). Other factors included infections, allergies, lack of emotional support, perfectionism, side effects of medications, and chemical exposures. (Same wiki article I linked before) And they wonder why I tell them everything makes it worse, nothing makes it better.

After reading this article and a few others, I at least feel a little better mentally. I’ve been wondering if it really WAS all in my head (well, it is because it’s my brain that doesn’t work, which we all know, but you know what I mean…) and that I was imagining things. I’ve wondered why it settles in my hips, when there is nothing wrong with them. I wondered why it hurts more when I’ve been resting and not when I’m working – but I hurt like a mother fucker when I’m done cleaning.

I still rage against this disease that isn’t really classified as a disease, but must be a disease because insurance companies don’t have codes for imaginary things. I hate having this – I doubt anyone likes it – but I can’t fix it. It’s gotten to the point where I can’t wash my own hair, because I can’t keep my arms up long enough to get all the soap out (my hair is 19″ long, but I really don’t want to cut it). I can’t brush my hair after the shower either – my husband has to help me with both things. This interferes with my life and personal care…and yet it is not eligible for disability because it isn’t REAL. There is no “scientific test” that will detect it, no lab work, nothing. You can have some symptoms and not others, some people have a little pain, others so much it’s not to be belived. And yet…no, it’s not REAL. I could scream.

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3 Comments

  1. Jess

     /  April 14, 2010

    Ugh, boo. It really sucks that you're dealing with that all the time, on top of LIFE, after all. 😦

    Reply
  2. I feel your pain… or at least some of it. My husband laments my short hair- but some days it literally feels like it might kill me to wash/brush it.

    And most definitely there are things that make it worse, but nothing that makes fibro better. The only salvation I have found is to try to maintain a positive outlook. Rejoice in those times when you are having better days, and take it easy on yourself when you have days when it seems that even breathing hurts.

    Best of luck to you in all your endeavors!

    Reply
  3. I have MS and unexplained infertility (we adopted). Anyway, whenever I have my monthly visitor my symptoms are worse.

    Reply

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