F word

so let's start with fibromyalgia. it is the least complicated of what i have going on.

my fibromyalgia symptoms started very mildly around the age of 28. i started noticing increased sensation of pain duration (things were hurting longer than they should). over the years it progressed and my muscles got stiffer & my tenderness more widespread. i finally got my "official" fibromyalgia diagnosis earlier this year from a rheumatologist. i'd been trying to get into a rheumatologist for a few years- but all that i had called were unwilling to see me because of my EDS diagnosis. but, my geneticist sent me to one in her group, so he didn't have a choice. he was a graduating fellow, so there was also another doctor & a med student. my diagnosis went like this- history, physical examination, wow you really do have EDS, then, "you do have fibromyalgia. however, since you have EDS we think that for treatment you should see a pain management specialist" me, "but my pain management specialist is in ohio" them "well, still that is what we think" here is the really silly part of all that- there is currently only ONE medication that is approved to treat fibromyalgia. why they didn't want to even attempt to write me a script is beyond me, but they made the fibromyalgia diagnosis official. which is annoying cause the last thing i wanted was another label but helpful as it makes other doctors understand better as i don't sound like a crazy person going "i think i have this but i can't find a doctor to diagnose me"

so what is fibromyalgia? good question. so far they aren't really sure. but the good thing is they are starting to research it. it used to be a diagnosis of exclusion (ie, we can't find anything wrong with you so we'll call it this) but now it has its own diagnostic criteria:

1: Widespread pain in all four quadrants of the body for a minimum duration of three months
2: Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied
 
kindof vague criteria, but criteria none the less. and as far as causes (from the national fibromyalgia association website):
 
"While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function."
 
and another little tid bit that is well written by the folks at NFA, what is the difference between a disease and a syndrome?
 
"Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause."
 
that is important to me for a few reasons... first, it gets back to the whole "i am not sick!" bit that i am always trying to explain to people. i actually rarely get sick- as in something specific that i can pinpoint & fight. sore throats, flu (and i don't get flu shots), colds, sinus infections- i don't remember the last time i needed antibiotics. when i do get something little, it is usually barely noticeable & easily treated with the least invasive option such as tea. so for the record, i am actually really damn healthy! second, as far as syndrome goes- RSD, EDS & POTS are all syndromes.
 
there is a little side note here about "no identifiable cause" and that is EDS. it will take a few posts to really explain EDS but as many of you know it is genetic and for me, Fibromyalgia & POTS are both considered "secondary" to EDS. many patients with fibromyalgia do not have a primary diagnosis that relates to their fibromyalgia diagnosis. for me, the EDS does not directly cause the fibromyalgia- but it predisposes me to a greater possibility of developing it.
 
so, mostly what i covered in the "pain is a 4 letter word" blog describes what is going on with my fibromyalgia. pain, increased sensitivity to pain, increased pain duration & weird nerve sensations. it can change daily- some days i hardly notice it, other days i will have a flare up that will last 3-5days. there isn't a lot i can do to but a few things help. yoga- of course! sleep- sleeping in (mornings are rough especially if i have to use an alarm to wake up as it starts the day off with unexpected loud noise) & naps. pacing myself- a large portion of my day goes to planning how i am going to get through the rest of the day as my energy levels can be up one hour and then crash the next- this has a lot to do with POTS. acupuncture has been one of the biggest helps- today my acupuncturist cleared the flare up that has been in full force since friday in 20minutes (apparently there was something going on with my stomach/spleen) and i was able to take a nap for a full 2 hours this afternoon (probably the longest continuous sleep i've had since friday) which settled everything back down. sitting on soft vs hard chairs helps- i keep trying to not be one of those people that carries a pillow around... but don't be surprised if one day you see me with one.
 
so that is fibromyalgia. if you are interested in learning more, please visit the national fibromyalgia association at: http://www.fmaware.org/
 
if you have questions- post them cause i'm sure your not the only one.