I realize we're not doctors. I'm just asking for other objective opinions since mine may be biased. I'm also trying not to write a book, but I'm not sure how much of that can be avoided and yet explain the situation thoroughly - so please, bare with me.
My main issues have been
1- I can't think -sometimes I can't even add 15 to 22- other days it's basically fine although what basic is keeps getting lower -the neurocognitive testing supported that I have permanent loss of mental ability, specifically visualspatial intelligence and my right hemisphere isn't processing information correctly but I don't have the full report back- the neuropsych said those results were very obvious
2- sometimes I'm bruised extensively, but its always limited to my arms and legs- and bruises have been known to end right at my armpit -other times I bruise easy but not like that - it goes in spurts - i'll bruise like that for months at a time then go back to just bruising easily-bruising is never on my torso or face- when i bruise easy, i get paw prints from my 5 pound cat jumping on my lap for heaven's sake or finger prints from the kids just touching me
3- my vision will get blurry for no reason, i usually notice because i suddenly can't read
4- I get confused and don't know what I'm doing or what day it is -in October I went to Wal-mart with my girls and thought it was anywhere from june-november while we were there - this has affected my ability to work in a field that I've worked in for 20 years because i can't remember the basics - I've also noticed that the more bruised I am the worse the confusion is but that makes logical sense to me because if i'm bruising that extensively of course, the blood isn't necessarily reaching my brain like it should
5 - i can't adjust to temperatures- if I go for a slow stroll when its over 80 degrees outside i'm covered in sweat, clothes are soaked, and look like i've been doing heavy exercise when it was over 100 degrees - if it's under 70 my fingers turn blue -= my hands and feet get extremely cold
6- i can't remember words i want to say - sometimes i can only remember a, the, and, etc or i say the wrong word constantly - this is also worse during the time periods that i bruise extensively
7 - recently my joints started hurting, especially my fingers, but sometimes my elbow, shoulder, knees, but almost always just my finger and/or right elbow- i can't always move my hands like i want and keep dropping things because i can't pick them up- sometimes i can't
open jars or even pop lids - it gets worse during the coarse of a day, it's not worse in the morning that's when its at its best - I've also developed these nodules on the joints with my fingers- not the furthermost joint from the hand but the middle joint where the fingers bend the most - there were some in the palms of my left hand but those are finally getting smaller after being there for years
8 - my memory sucks - i lose everything and then find them in rooms I don't even remember being in, at all - the kids tell me I do things or say things that i don't remember
9 - i get dizzy and have to catch myself or i'll fall on my butt
my primary sent me to a rhuemotoligst who said he believed it was fibro, but my concern is that i just fit his profile for someone with fibromyalgia instead of him actually looking- he kept telling me women, type a personality, ocd (because I folded my clothes, really? - i was bored so while waiting i folded them), been abused as children, etc. and he kept pushing that didn't i want that "sob" to get his- i made my pieace with it years ago -when he pushed the trigger points, only some hurt (elbow, shoulder blades,and knee - under the head not when he pushed but when he asked if i got headaches extending from there) the rest didn't hurt at all.
The questions I asked him, he seemed to write off- like I asked about
the nodules on my fingers, so he felt the ends of my fingers (not the joints with the nodules) and said it was normal for someone my age- I asked about
the bruises which he first said was due to skin thinning as we aged then after I showed him a picture to show how extensive it was he said it was obvious trauma when I tried to explain it wasn't and that I had been driving with my arm out the window like always he said that driving with your arm out the window was obvious trauma- the pictures were of the other arm and my arm is always out the window and my children touching me is not trauma - I usually don't fall asleep until 1-3 am but I've always been that way even as a child and i stay asleep - unless i didn't get enough sleep i feel "rested" in the morning just takes me awhile to wake up. The rheumy turned that into insomnia (not all night persons are insomniacs) and non-restorative sleep just because i'm not a morning person and it takes me awhile to wake up fully which he kept saying was non-restorative sleep - again, seriously? because i need a few hours to wake up doesn't mean i didn't get enough sleep it just means I take awhile to wake up which has been true my entire life-- coworkers and classmates as far back as junior high used to comment that I never said a word until at least 10 am and after that i didn't shut up.
Everyone I've ever heard of with fibromyalgia has put pain as their number one issue and fatigue as number 2. I do wake up hurting but that's because of my bladder - there were so many adhesions when they did a hysterectomy (several large ovarian cysts and adenomyosis or something like that) that the doctor cut into it = they'd taken a scope and looked into my bladder and saw a scar from it being cut into, several fibroids and other I can't remember what he called them but they looked like freckles everywhere but because my bladder was cut into of course it hurts plus I'm sure some of that fibrous tissue has grown back since that surgery so the ovary they left has probably adhered to the bladder, i get kidney stones periodically since i was in my 20's (hereditary so do all my siblings and my dad started getting them when he was 19) and my fingers hurt, but I don't hurt all over. I'm also not fatigued.
I recently had to go to my primary again (brother had a "massive" heart attack and he's only 38) and she said the rhuemotologist was very knowledgeable and good at what he does, but she's not sure fibromyalgia is correct. She said she's always thought it was CREST with definite reynauds- skin thickening and tightness (hands and feet - i have huge callouses that break off and snag my socks and my fingers now crack
open and do the same thing) - GERD/swallowing issues - calcium deposits on my finger joints -and the spider veins (calves, under my nose, ankles, feet). She indicated that she had been paying attention for awhile and the rhuemotologist doesn't know me very well yet plus it may be too early for him to differentiate. She also thinks the memory issues are separate.
The ANA test was negative so was the clotting factor and most of the blood test, except my vitamin d was way low. She hasn't done a c-reactive protein yet. An MRI and EEG were also normal. I have a very strong family history for coronary artery disease, venous insufficiency, autoimmune disorders (mother has sclero and 2 of 3 bio children have rarer autoimmune disorders plus aunts/uncles/cousins with various ones)
so objectively does this match what anyone of you have noticed?
Post Edited (Circe68) : 12/5/2013 2:04:34 PM (GMT-7)