fibromyalgia

XMRV research and "neuro-immune diseases"

I've mentioned here before that I have Fibromyalgia.

Once upon a time, that word wasn't anything to me. It was syllables coming through the phone line, crossing two thousand miles from my sister's home to mine, as she told me she had been diagnosed with this strange-sounding thing. I had no clue what it was. She mentioned it because she knew I'd been having some troubles for the past four or five years (at the time) and her doctor said the chance of me having it went up because I had a family member who had it.

Then, there was the day I decided I really wanted that rather large rock by the side of the road. Randy and I planned a quick excursion. It failed and resulted in a badly pinched finger. Turns out that rock was not as small as I thought and would have required equipment to move it.

When I started have problems in my upper back (left shoulder blade, neck, down the back of my left arm), Randy teased me that I'd hurt my back trying to lift that rock with him. We went to a GP doctor who gave me a shot in the shoulder blade, prescribed physical therapy and gave me some drugs. Good drugs. smile Whenever the drugs ran out, I'd call for a refill. No problem. The physical therapist recommended a TENS unit. Insurance paid and covered the replacement pads.

But the pain wasn't going away.Finally, when I called for a refill, the doctor said, "Uhm, it's been nine months. You need to see a specialist." I went, the doctor ordered some tests... and I'm a little fuzzy on what happened next. I think I never went in for the tests. I didn't like that doctor and my feeling was reinforced when there was zero follow-up on the lack of results coming in for the tests I never went for.

I muddled along for a while longer, though by now I really had enough personal data to see the likely outcome was, "You have Fibromyalgia." It's strange how we desperately seek answers, a name for what's going on inside. And yet, when I finally got a doctor to say those magic words, it was just the beginning of the frustration.

Now, I know the name. I know what is wrong. I know I have limits. I know people who don't know me can't see I'm not equally as able-bodied as they are. I don't turn 40 until February, but some days I feel 80. Other days, I forget I've got those shorter limits and do things like I'm 20...and I pay for it for a week.

Hearing about Fibromyalgia in a commercial was kinda cool for a while there. Then I was over-saturated with the Cymbalta advertisements.

Hearing people say, "Oh, I've heard of that. My [insert family relationship here] has it." helped me feel like people would not give me a hard time. That feeling is usually broken by their next sentence, where they say something like, "But she can still work full-time. Why can't you?" Or "But she's got this great exercise program you should try out." Or.. Or.. Or..

Now, I learn{*} there's a paper in the latest Science magazine about a retroviral infection XMRV, which seems to appear... crap. I've tried to write this in my own words about five times now. Let me quote:

We have detected the retroviral infection XMRV is(sic) greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.

Source: Whittemore Peterson Institute for Neuro-Immune Disease

I don't understand all the medical-speak in these articles, but I'm seriously going to try to grab a copy of Science for my shelves. This may not change my life, but it could determine whether my son (rare, but still possible) or his (way, way, way) future daughters might find their choices and dreams radically changed by such an invisible disease.

{*} Randy mentioned an article about CFS in the news the other day. I kinda glossed over what he was saying. Sure, that's cool. I know someone who has CFS but she's never available to talk to, so I guess she'll have to find out about the article on her own. Definitely a "hurrah" for medical science. I wonder if he's going to tap me on the head and say, "Duh! Same article!"

Smelly good overdose

I have a little bit of a rant I'd like to let loose with today.

My regular readers (all what---three of you? grin) know I have fibromyalgia. One of the symptoms that can be frustrating and annoying is a sensitive olfactory sense. Have I ever told the story about the time I found a long overdue-for-the-trash onion by the smell? ::shudders::

I'm very cautious about the scents I select for myself---and when I wear them. I know all too well what it's like to be stuck behind someone who used their cologne as a bath. The cloud of smell is painful and sometimes nauseating. I think most people have forgotten a basic fact about noses: if you're around it, no matter how much you use, you will soon not smell it because your brain has tuned it out. So, a dab will do you! I'm more interested in the faint, not-quite-there hint of a cologne that encourages me to seek it out, than I am in wading through the wall of smell.

This time of year is always worse, when it comes to nauseating smells. People are out in greater quantity, so my nose is battling even more clouds of cologne. Stores are pimping more colognes for the people who are clueless about gift-giving---and thus creating an even greater cloud of colognes as the teenagers grab freebie spritzes to smell "even yummier". Then there's the potpourri and the fresh-cut trees.

Now, stop and think about your daily routine: shower with shampoo, conditioner and soap. Do your hair with---how many additional products? Now body lotion, deodorant and, for the ladies, all the make-up one face can hold. Along with each of those comes a separate scent. By the time you are ready to walk out the door---oops, a splash, okay, two, of cologne---you are a walking cloud of stink.

Multiply that by the hundreds and thousands of people trailing their clouds of stink through malls, trapping that chaos of smell with not enough ventilation to clear it out.

::shudder::

Please, for me or for someone much closer to you, skip a couple layers of eau de stink and make Christmas shopping a little easier on those of us who smell you coming!

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