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I am very confused and don't know how to go about writing what I have to say since there's so much that's occurred through out the years on and off. strange things physically out of the blue, like my psoas muscle became inflamed and very painful for no reason. I had to get an injection in it which worked.
It all began in the year 1998 right after my divorce.
I went to work on a cold wintery day and by the time I got to work, my fingers were KILLING me! The pharmacist whom I worked for told me to put them under warm water which hurt worst.
they turned colors and eventually went back to normal when I got warm.
went to a dr. who said it was raynauds syndrome. gave me a beta blocker and explained how the tiny vessels go into spasm and cause the pain and discoloring.
I can't even hold a container of ice cream for too long in the store.
my poor toes get it too. In the car. and forget about mittens rather than gloves, NOTHING works to keep my fingers from hurting come winter time.

years later, started getting arthritis. found out by testing. different family dr now. In spine, neck, I think shoulders because the pain is horrible at night time when I'm sleeping and can't open arm at elbow some nights. goes into a tight like grip and have to pry it open slowly.
scalp goes numb and tingly, and face when laying on my husbands chest watching t.v., I guess neuropathy of the hands and arms. Hands, fingers and up to elbows my arms go numb in the night. One night I fell asleep without knowing my arm was above my head. when I woke up, I couldn't feel my arm or hand. it was as if I had a stroke and couldn't lift it to bring it down, I had to flop it down with my other hand and when blood flow came back in it, I wanted to cry it hurt so bad. I freaked out screaming I couldn't feel my arm.
lol.. I can laugh now, but at the time it was very frightening.

I have the hair thinning and hair loss with new hair growing back in short pieces, along front and side of scalp and the new hair is a different fuzzy texture and color. grey.
I kept having my dr. check me for rheumatoid arthritis and C-reactive and was elevated a couple times. Was sent to a rheumy and diagnosed at having fibromyalgia. this was YEARS ago. the first rheumy dr.
I also have osteoporosis in my spine and hip many years now and haven't had another test in many years. I stopped going to doctors because I got so sick of it. never getting clear cut answers, and always feeling like I was a hypochondriac. I just changed my diet slowly from an acidic diet to an alkaline diet and started taking supplements and minerals.
the 3rd and last rheumy dr. I had a couple yrs ago tested my vit. D level and I was deficient. I can't recall the number right now but it was very very low.
she gave me an RX for a couple months and I could finally turn my neck while driving without screaming in pain.
I finally could walk up a small incline of a hill to return from lunch to work.
there were days I looked so pale, weak and sick that my new boss told me to go home. I eventually lost that job unaware that there was a probation period that you can only miss so many days in a certain period.
I loved that job. all because of some mysterious illness I lost my favorite job that paid the best out of all my jobs I've been through.

I continue to see my family Dr. once or twice a year. I went to him when I broke out with a small rash on my back by the bra line which turned wide spread on my back towards my hips.
sand paper texture that itched like crazy and wouldn't go away.

next year. rash again started on right side of rib area. two weeks later torn the meniscus in my left knee just from mopping a floor. I don't go to a gym and have never been an athletic type of gal. I always got picked last in gym to be on the teams. I'm more artistic.
how on earth out of no where could I just tear my meniscus??? that was the left knee. I waited 3 months to see my dr. the joint kept sliding in and out when I squatted down to do something. it would swell and go down on and off it would feel fine and then not again. that's what made me go when it almost got stuck out of joint permanently.
got an MRI, was sent to surgeon, just had surgery last tues. meniscus was torn from left to right.
the day after I injured my left knee, the right knee started acting up. It feels like there's something growing in it. I can't explain it. it clicks when I walk too. I told my dr the day I saw him for my left knee but he didn't want to focus on both he said. just the critical one.
I used to have to wear braces on my wrists years ago because the pain was so bad I couldn't hold dishes, or pots and pans, etc. I used to wrap them with ace bandages. that eventually went away.
then the thumb joints in both hands swelled and bone grew and hurt. pain went away but disfigurement didn't.
2nd rheumy dr I only saw a few months said I had very weak knees just by looking at them. I should have started therapy THEN! He also said I didn't have RA.
sorry If I'm jumping around. it's hard to recall in order what's been going on. I'm sure I've left things out.
as I stated above, I just stopped going to doctors. until I got ANOTHER body rash. This happened right around the time of my knee problems. On both side of my pelvic joints, a small, red, bumpy sand paper texture rash appeared again!!!! It lasted weeks and weeks. It even left the skin looking darker than before. no explanation from family dr.other than he thinks I might have Lupus. It's the very first time he's mentioned it. being both knees are acting up and I discovered through my own research by asking the Dr to give me copies of all my blood work that were positive ANAs.
It started back in 2012. Ive had prior blood work which never had positive ana's. only c-reactive protein and something else was positive.
I made an appnt. with a new rheumy dr. 3 months ago. she's so good that it was so hard to get in. the day of my appnt. I went to start my car and the battery was dead. can you believe it!!!!! I had to reschedule. now I have to wait ANOTHER 3 months to get in.
I figured I've waited this long, why not more.
My mother used to get a reddish, rash on facial cheeks and bridge of nose. This was many years ago mind you. My mom has since passed away. She had some type of bone disease because she eventually went from standing straight, to bent over looking at her feet as she walked. her knee caps bent inwards and her toes were all gnarled and could only fit into one type of sandal and one type of winter boot in winter. she NEVER went to the doctor., nor did my father. both stubborn Europeans from Slovakia. which means she never brought my twin brother and I to dr. either. maybe that's a good thing. no antibiotics growing up. lol
when she fell down and broke her hip and she was in recovery, the surgeon came out to me and reprimanded me stating she had something, but I didnt' write it down and wasn't aware of medical conditions then. we all thought she just had osteoarthritis. bad osteo.
so now I'll never know what she had. I was just at my sisters house last week and I saw a picture with my mother in it and guess what? she has the butterfly rash on her face. I can bring this picture to my rheumy dr. when it comes time for family history. My older brother also has a very rare bone disease called "gorhams disease", or " vanishing bone disease". back in the 60's when he complained of bone pain In his ribs, they didnt' have a clue what he had. he was in the Air Force then.
He's been on pain meds now for many many years and has two knee replacments. he can sneeze and crack a rib.
THERE! I'm done. I've written a book for crying out loud.
This is the reason I don't want to go to a new doctor.. because it will be confusing to have to explain such a lengthy history of problems.
My blood work says, the ANA screen and ANA titer are positive with the count of 1:80, homogeneous pattern. it states that it's above high normal.

I have copd, I get sores on one side of the inside of my nose and it's painful. had swollen tubes one year,( hydronephrosis? ) that leads to the kidneys and bladder one year, and my liver looked pocked marked as my gyno explained when he scoped me for an ovarian cyst. He asked me if I drank heavily. I didn't. he made me feel horrible. it had a thin gauze like film over it too.
I've had multiple abdominal surgeries since and liver has healed because the dr. said it looked fine to her.
I used to have high blood pressure which I was put on meds for, but that eventually stopped all together. so I stopped the pills and now my blood pressure is super low. crazy.
does anyone else here reading this have a similar situation? does it sound familiar? do you think it could be Lupus? or connective tissue disorder?
should I go to the rheumy and seek out a diagnosis? or just forget about it all together? I'm confused. I just dont' want to wind up bent over and knee knocked like my mother, even though I love her, God Bless her.
I wish you all well.





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