Symptoms may have started over two years ago but started seeing primary care 2 yrs ago. Syptoms come and go - some last days while others may last weeks and or hours:
joint pain shoulders/knees mostly since age 16 (25yrs ago)
age 20 diagnosed with raynauds
numbness / tingly hands feet
numbness in arms/shoulders mild during day horrible at night to point disturbs sleep. Nuero did nerve test recently said I had mild damage both elbows.
possible mild grade fevers - mostly afternoons 99.3-99.5
extreme dry mouth
sometimes dry eyes
can't tolerate cold
weakness in hands at times
bladder - what feels like a bladder infection, can last weeks - very irritated feeling, feels like I have to pee all the tiem : 2009 urine test and internal ultra sound both negative, another neg urine test 2010
flu like symptoms - achey, weak, short of breath, shaky inside - these days I have to stay on couch
face burning - can last a few hours and cheeks get very red, this only happens a few times per month - next few days my skin is super dry and peels
extreme fatigue (I'm normally a super active person full of energy, not since two years ago, now I have to take naps, even at work or I feel horrible) can go on for several weeks or come down like a curtain suddenly.
some brain fog - type wrong letters, pay wrong bills - can't think straight
Over the last two years I've seen 2 ENT's, a spinal Dr for neck burning/pain, two lymph node Dr's, and a neurologist.
Had: all negative: MRI, cat scan of neck, endless blood work - complete panels, inflammation low to negative autoimmune diseases, thryroid, vitamin B etc. All normal except RA positive (low titer) and bit highthyroid peroxidase
Rheumatologist first thought I had RA, said that's why I was tired and had mild fevers. Six months later she says I don't have it and or i could have very mild case. So she sent me back to my primary care PA.
Saw her today. ultimately she said she had been seeing me for two years and all of the specialists can't find anything, so there is nothing wrong with me. She stated that I'm getting all the same aches and pains everyone does but I'm sensitive to them. I disagreed with her stating that I've put up with the joint paint for over 25 years, to the point i've had days I can't brush my hair and or drag my leg (this isn't the norm) I've worked one job 8 years with only 4 days off, the next job 3 years with 3 days off. If nobody is around to help me i'll get it DONE - like laying a carpet or moving the washer outside. I'm used to working four days or more plus volunteering 40 hrs per work for an animal shelter without getting tired. I worked from the time I got up till 10 pm at night. I can't do any of this anymore since the last two years. So needless to say I disagreed with her. She told me there was nothing more she could do for me and walked out.
I did go to Tufts Dental several weeks ago and has salava test done that show extreme dryness and lack of salava. He sent me home with tons of stuff to increase fluids in my mouth - in addition my teeth and gums are in poor shape. They plan to do a biopsy for sjogrens, but for some reason they can't set it up for several months. I did tell her about this but she blew me off.
Sorry for any errors, very tired. Fatique is one of my worst symptoms, I now have to pace myself. I can't do 1/2 of what i did before.
My options for new Dr's is limited
- I lost my ability for health insurance when I lost my full time client two years ago. Since then I can only work part time as i'm either too exhuasted and or feel super crappy - the little work i'm doing is trying to keep up with all the medical bills i've created the last two years. Some days I can manage, while other days can be simply horrible. I like to call them the symptoms of the 'day'.