The Fibromyalgia Sorority- Update

Ping Pong game by Parker Brothers, The Childre...

Ping Pong game by Parker Brothers, The Children’s Museum of Indianapolis. (Photo credit: Wikipedia)

August 5, 2012

I promised an update and I keep my promises but it’s nothing “earth shattering” as my Mom is fond of saying. It’s just the same old, same old. I did go back to the neurologist for results but everything was fine. To me, that was good. He figured out that the tingling and imbalance could have been caused by the drug Topomax, but why I fell flat on my face for no reason he couldn’t answer. To him, he looked vaguely disappointed a) because he couldn’t help me and b) I was no longer of interest to him. He made that VERY obvious. The difference between the first and second appointments were like night and day. I stopped Topomax which now leaves me to go back to the Rheumatologist but I am not in any hurry. He was the one who prescribed Topomax. (Did he not know better?) From one doctor to another, I feel like a ping-pong ball.

Today, it is beastly hot and humid and I can barely get from the house to the car, this weather is not ideal for those of us with chronic pain, imbalance, weakness. There’s only a couple of days during a few weeks when we have ideal weather but that does not guarantee feeling well.  The winter is really rough, icy winds and snow but the summer’s humidity feels like I’m suffocating.

I went with my daughter to one store for shopping for college and there was no way I was going to miss it but I sure wish there were more chairs and benches to sit on for those of us who need a break. I’ve found holding on to a carriage is helpful and sometimes, if I really feel bad while I am there I can use the electric carts. I didn’t want to do that with my daughter but that’s a blog post of a different kind…..I’m sure those of you with teenage daughters understand.

How can we look forward to any day when we don’t know how we will feel? I used to set things up in advance, make plans with friends, go into the city, or to a movie or a museum. Now, it’s like the earth has to be aligned in 940 ways before I even think about it. Not too hot, not too cold, not humid, not torrential downpours and then we have the symptom assessment. What hurts, what doesn’t (rarely an answer there) have I slept well? Everything is so complicated now. I envy my old life, pre-Fibro, but I have accepted it is gone. I wish one or two of my family members would accept that too.

People still say stupid things and most people, unless they have Fibromyalgia, JUST DON’T GET IT.  Those of us who have it are unlucky members of a very big club. We understand EACH OTHER.  Fibro sufferers, if nothing else, be glad we have each other. Perhaps we could all become sisters (and some brothers) in a Fibromyalgia Sorority. Fi Kappa Fibro anyone?

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Calling Myself A Complete Idiot Would Be A Supreme Compliment

Stir Crazy 3

Stir Crazy 3 (Photo credit: The Michael)

A few weeks ago I posted a very disturbing blog post that scared me and some of my friends and readers. It was called “Worried Sick: One Crazy Ass Blog” and people I didn’t even know got worried about me. Days later and a tears shed, it prompted me to write a gushing thank you post and sincere apology.

That said, I now believe I am a stupid and utter asshole, although I can’t say for sure. However, I realized today that I think I did something totally silly and possibly quite dangerous. In my “fibro-haze/know it all “frame of mind, I realized that I had stopped taking one of my Fibromyalgia drugs, Topomax (used also for epilepsy and a variety of other illnesses) cold turkey. What makes it even more insane is that I had checked this out once before and knew to taper it. My excuse? I forgot. Reason? Fibro Fog Forgetfulness. We just can’t win, can we?

I researched it today and found out that yes, stopping the medicine without tapering it can produce some significant and intolerable symptoms including severe anxiety, discomfort AND tingling of the hands and feet etc. I’m just lucky I didn’t end up in the Emergency Room (although that was listed too.) However, I was curled up in the fetal position in bed feeling a bit suicidal.

I won’t ever be that cavalier again. I think what happens with those of us with chronic pain is that we take so many different medications (none that seem to help us at all) that we figure stopping one won’t make a bit of difference. Wrong.

I was totally out of my mind to have not thought it through in my search to lower the amount of pills I was taking. Again, when they say “consult your physician” as much as we may hate to, understandably so, at least we should call our local pharmacist. Besides, at least we know their number by heart.