Wednesday, May 18, 2011

It's been a while.

Yep, it's me again - the long lost blogger. I haven't blogged in so long as I've had many things going on and zero leftover energy. I'm at a point now where I'm coming back to myself, and so here I am.

That whole feeling like hell every day of my life thing that was going on? It has a name now - Fibromyalgia.

In the interest of perhaps helping someone else who may be struggling, I'm going to get into the gory details.

After going through every test known to man, that's the diagnosis. It's a baffling and confusing disease, and it's a little bit different for everyone, but here's what mine looks like:

Constant fatigue
Pain - everywhere, everyday - making things like walking up a flight of stairs, or trying to brush my hair nearly impossible
Extra clumsiness - I had many unfortunate accidents with furniture and the like
Brain "fog" - aphasia, not remembering words that were at the tip of my tongue, multi-tasking was out the window
Insomnia
Migraines - oh the migraines -
Irritable Bowel Symptoms (fun fun)
TMJ
Painful menstrual periods
Having to cancel plans CONSTANTLY because I literally couldn't get out of bed, putting major strain on friendships
Sensitivity to everything (light, odors, sounds, temperature - too hot, too cold)
Being so sore I don't even want to be touched/hugged
Sensitive to clothes, especially tags or anything with texture
Vicodin didn't work at ALL
and generally feeling completely worthless.

Trying to pick up my electric guitar and play - impossible. The pain brought me to my knees.

Exercise? HAH! I would stumble into bed as soon as humanely possible after work, IF I was able to go to work. Forget about motorcycle riding and standing for hours at concerts - you know, the things that put me in a state of bliss? The things that made me me? GONE.

So in the last six months I've been learning how to make peace with this chronic disease. At first I thought it was just the grief of losing my dad, and I was having a hard time. But soon it became clear that the things that have haunted me my whole life (tummy troubles and headaches, clumsiness) had been turned up to an 11 on the scale of 1-10, and something was wrong.

I finally made my way to a wonderful rheumatologist in March, who ruled out arthiritis (turns out I do have a bit in my hands, and with both parents having major issues with this, it is also in my future) and took one look at me, touched my "trigger points" (which about made me fly off of her table), and knew what was up. I was also diagnosed with Restless Leg Syndrome, which actually can affect yours arms too (as it does in me) Literally, thank God for her and her knowledge!!

She took my blood samples and I was dangerously deficient in magnesium, iron, and Vitamin D. So I get to take 50,000IU of Vit D a week now (don't try this at home kids), I take Magnesium Malate at 625mg daily, and am no longer a vegetarian.

Yeah, huge changes.

But the upside is, um, I really like bacon. HA I need to move into a more "low carb" lifestyle, to avoid insulin resistance, which is already an issue for me, and common also in Fibro.

As far as the med regimen, here's what that looks like:

Cymbalta 60mg (daily) - I was already on this dose for depression, turns out it helps fibromyalgia too

Flexeril - 5mg-10mg as needed - this is a muscle relaxer

Ultram - 50-100mg as needed - this is a pain killer, that is not an opiate like Vicodin, and it works BETTER for fibromyalgia than Vicodin

(Note: there is a risk of seizure with the combo of the above three meds, as they all increase serotonin, which can lead to serotonin syndrome - which has a very specific list of symptoms, and fortunately this has not been an issue with me)

and my new BEST FRIEND - the MIRACLE in my life - Gabapentin, 300mg, 3X a day - I've just contacted Doc to see if I can take this 4X a day, as I'm discovering between hour 5 and 6 it wears off and the pain starts stabbing into me again. The first dose I took it knocked me OUT cold and I woke up feeling like I was 15 again and high on pot. Dose two went much better (no pass out) and by dose three it was like I had my life back. I could have cried, but that just would have given me a headache. ;)

The downside is some people gain weight on it. I have noticed I want to eat, oh, everything in sight, and it's almost like the pot induced "munchies" so I do have to be careful here, as I don't need "help" in that department either...ugh

I am a bit "loopy" on the gabapentin, which I guess will fade in time with the gabapentin, but it's like a complete relief not having that constant agony. I can WORK. I can THINK better, not trying to grit my teeth through the pain and literally count the minutes until I can get out my clothes and into my soft, worn jammies and pass out.

So while everyone's chemistry is different, I thought I'd share my brand of Fibro cocktail.

Job is going well - I applied for FMLA when I got the fibro diagnosis, and was approved - so now that I'm basically out of sick and vacation time, I can have unpaid time due to the Fibro as needed and not get fired - which is a huge relief. It's hard, because I don't like being "sick" but at the same time I need to be open with friends/family/employer what's going on.

To top things off, my mother doesn't think Fibromyalgia is "real" - it's a hypochondriac disease. Yeah... that's why a med for nerve pain works miracles Ma, it's all in my head. Sigh. Unfortunately this stance of hers has alienated me somewhat from her and hurt my feelings, and we are a bit distanced at the time. I don't like it, but at the same time she can be toxic about things like this, and adapt a "know it all" attitude about things, and I do NOT need that right now.

Dave has been an absolute champion - picking up the slack when I'm too tired and sore to cook, clean, help with homework, etc - not getting pissed at me when I'm too sore to have sex, when I cry about how horrible I feel, when I am a huge blubbering mess. Thank God I married a good man.

I also have to give a shout out to diabetic socks - I could not handle the pain/pressure regular socks brought, and someone suggested this fix - and man, did that help!

5 comments:

  1. I really wish there was a "like" button for blogs... Love you, doods.

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  2. So sorry to hear you haven't been well! I too have fibro - its now about 12 years and along with some meds, I have found the Meyer's Cocktail to have saved me and given me back my life. I have mentioned the Meyers in my blog before - this IV treatment gets the magnesium straight into the body along with some other vitamins like C. If you want more information, we can use email! So glad though that you have a diagnosis and that you are back in blogland - I have missed you!

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  3. Have you had your Vitamin D levels tested? Fatigue, cognitive difficulties, menstrual pain, muscle aches, bone pain, and insomnia can all symptoms of a vitamin D deficiency. It's pretty common and a quick blood test can tell you whether or not it's an issue.

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  4. Thank goodness for the good things in life like bacon and someone to take care ofus when we're down! And this gabapentin sounds wonderful! Oh too feel like I were 15 again. Mind you those awful giant glasses might not be so wonderful...
    Thank you for sharing something so personal and welcome back to the blogging community!

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