WARNING - SUPERLONG AND PROBABLY VERY BORING
This post is some background on my physical condition and what my body and I have experienced over the past year. Feel free to skip this stuff or anything else on this blog ftm, I prefer the idea of people reading it in theory. It's rambling, in rough stages and I will probably continue to edit. It will be a work in progress. I have the ulterior motive of finding a way to put a comprehensive history together for my upcoming appt. at RIC for a FMS/Spinal deterioration and chronic pain evaluation. I've haven't been able to do that yet and I know it's important.I want to focus on the past year because that's when I first learned words like "Demyelination", Stenosis, Ankylosing Spondolitis and a whole bunch of other words that get tagged by spellcheck.
I researched others I had heard but never bothered to really learn what they meant. After all they were those words you see on other peoples blogs and msg.brd postings. They are headlines, sound bites, and homemade fliers wrapped around extra large mayonnaise jars placed next to cash registers. They belong to the world I live in not to me, they belong to *Other People* . Words like "Multiple Sclerosis", "Rheumatoid Arthritis", "Lyme Disease", "Central Nervous System Disorder", "Muscular Dystrophy", "Fibromyalgia". Some other words I'm too embarrassed to post.
And then there's the really bad words. Words like "No Cure" and "Disabled", and "Fatigue". And of course, "Severe, Chronic Pain". Severe. Chronic. Pain. I never really believed in those words. I do now. It doesn't stop, it doesn't go away. Sometimes it gets a little better. It changes and moves and I never know from moment to moment what my body's going to do next.
Below is something I posted on a fibro board. It's an overly verbose ramble trying to describe my pain and it was finally made me do the blog. At least this way no one has to read it.
Hi Wanda and Jess,
Well, to try and answer your original question, "How did I first feel before someone mentioned FM to me?" I'll have to leave a pretty long post, so my apologies to all in advance and consider yourselves warned
My understanding is that it's different for everyone but I can tell you for me it started with an unbearable pain in my hip. I wasn't doing anything, just sitting on the train on my way home. The pain was so bad I could barely walk for 3 days. I actually literally draped myself in thermacare patches and did my best not to limp in public. Than it seemed to move to my leg and butt. One night my daughter and I watched the muscles in my thigh jump of their own volition (am i weird for saying that was kind of cool
?).Anyway the pain moved to my back but I was used to due to back injuries I sustained over several car accidents - I am a magnet for IDLV, Idiots Driving Lage Vehicles, lol. But my legs continued to spasm and get progressively weaker, especially my left. I started losing my balance, having dizzy spells. My neck and shoulders were killing me and I would have random shooting pains everywhere. My head, arms, hands and legs tingled and migraines became a daily occurrence. I would have periodic numb spots on my thighs, arms and face. I grew weaker and weaker and more exhausted. I could barely walk.
I finally gave in and went on STD. I was under the care of a neuro, an MRI had shown signs of demyelination in my brain. I underwent a battery of tests all which came back negative except for exacerbation of my previous spine injuries and some chronic muscle damage, probably from when I was a gymnast. They tried PT, (e-stim and ultrasound) but it did nothing for me. Neither did Neurontin, or increasing my effexor, or putting me on clonazapam. When I wasn't at the doctor, I was sleeping. After about 2 months of tests they decided what was wrong with me was all the drugs they had put me on, including my blood pressure meds.
So I stopped everything but the effexor and went back to work, part time for a few weeks and than back to full. I felt fantastic for two full weeks, the memory is on my current top ten desert island must haves. Then slowly but surely I stated to wear down again. I feel like a worn out toy who is left turned on all the time. My limp returned. I started to have muscle spasms all over, not just my legs. Things started to really hurt again. Added bonus, my skin often started feeling as if I had been sunburnt....or flayed from the inside. There were/are times my bf will just gently caress me and I have to beg him to stop because it feels like his fingers are stroking me with trails of fire. More than anyone, he's witnessed what's happened to me. How much I've changed. At this point my neuro referred me to an anasthesiologist for an epidural for my lumbar spine. Ah, tricky, devious illness that I may or may not have, by the time I went to see him, the pain had moved mostly to my upper back. But fate intervened, they had lost my records so no shot for me!(needs a soup nazi icon).
The anesthesiologist was the one who focused on FM. My neuro and gp had both gave it about 5 seconds thought and discounted it. Their dx consisted of "Well, we know you have some kind of neuromuscular disorder, we just don't know what.
So here I am today, close to one year to when it all began.
My legs are once again extremely shaky and weak. I'm afraid to walk because they give out and I fall - a lot. I can't seem to eat much. I'm nauseated most of the time and my body's thermometer is in worse shape than my cars - and trust me that's pretty sad, lol. I constantly have hot flashes and cold sweats. My left shoulder is in terrible pain, I can barely lift that arm. Often it feels like the muscles and tendons have been replaced by rubber bands, I feel like one of those jointed dolls on the little platforms. You push in the bottom and it pulls the bands connecting the joints and causes the figure to contort in kinds of positions. That's me.
There is a spot just under my shoulder and another at the base of my skull that both feel like someone is working 24/7, boring a steady hole there with a dull, burning awl. And sometimes when I'm standing up or trying to walk, my hips twitch like Shakira (actually not so bad, the bf likes it and it cracks my daughter up when I ask her if she wants to do the bump
) For me, most of my best moments these days are when I can make my daughter laugh, or at least smile. Obviously I'm out of work again. I lasted aprox. 3 months before ending up like I currently am - pretty much bed ridden and back on a whole slew of meds again, which while not fixing anything, are at least making it more bearable to get through the days and nights. I have an appt. on 12/7 to go for a fibro / spinal injury evaluation and pain management program at a local rehabilitation hospital.
Anyway, if you actually stayed reading this overlong ramble, I once again apologize. And Wanda and Jess, i hope this answered your original question
Peace to all,
a
