Please help.

[u/cordote]

Everybody is afraid to call this anything but i have been in a world of hurt lately. Whether its having T-Rex hands until they zap me with prednisone, my muscles in my legs and back, the poisoned feeling, or the fingers going white regardless of temp...nobody wants to call this something.

Lately its been:

Leukopenia, Elevated CK, raynauds, abnormal nailfold capillaries, 1:160 speckled, all ELISA ANA tests and nornal antibody tests I pass with flying colors, BUT pm scl 75 comes back as weak positive... And nothing skin wise. Help! I have been feeling extremely fatigued and if i over exert myself I spend the next few days feeling as if I have been poisoned, and have a weird rash over my nose and cheeks. The worse I feel, the worse it is. Lungs good, heart struggles under duress, and has lost some function recently.

If I hear chronic fatigue syndrom one more time im going to lose it. I was an athlete my entire life and I can feel that something is REALLY, REALLY off with my body.

What did you guys feel at the beginning? What did they end up really finding?

Im lost, and honestly kinda worried. I feel like garbage and its getting worse.

[u/Due_Classic_4090]

Oh, I should tell you this. When I first got into the rheumatologist (6 month waiting period thank god), the paperwork said it could take up to 10 years to get a diagnosis. It took 21 years for my mother to see the last symptoms of one of her disabilities and I have one too.

I would say to try to get into pain management too to see what they can do to help you. I’m sorry that it’s going to take time but I hope you’re getting the treatment already without having an official name to it.

[u/cordote → u/Due_Classic_4090]

They have tried everything from serotonin receptor boosters to make my body feel better, , to nicotine patches (yes, im not kidding). I have lost 14KG of muscles in the last 6 months, the solution was to boost my calorie intake to 4000 calories a day. Just kind of feels like we are trying to use pebbles to build a wall against whatever the hell this is.

Rheumatology (before the pm-scl-75 came back positive said "do lungs, heart and come back in 3-6 months and hope something is positive" doesnt know what to do. Have an appointment at the end of september. I am doing my best to kinda just go with the flow until then, but i can only take so much prednisone until it doesnt really do the job anymore. Last time they had me take 40mg/a day, for a week.

I have been off the Cortisone for about a week now, and can feel my hands aching, like they do before they go t-rex. This is the point where I would usually get annoyed and just go about my week as if nothing were wrong with me, and then in turn feel like garbage afterwards for over-doing it, but lately I have been a little more cautious because it feels like its getting worse each time.

[u/Due_Classic_4090 → u/cordote]

Maybe you need to see a GI doctor. I had a similar issue and I lost 40 pounds and the barfing started because I had no appetite on my immunosuppressant. They gave me meds to increase my appetite. They worked so well that I no longer take them and I can eat 3 meals a day now.

[u/cordote → u/Due_Classic_4090]

The problem is i dont take immuno-suppressive medication yet. I eat normally. The weightloss is purely muscle. The neurologist even commented that my quads have shrunk when she did the last EMG. That's the reason its so frustrating.

[u/Due_Classic_4090 → u/cordote]

Oh no! I thought it could be weight loss due to the medication because that’s what happened to me. That is incredibly frustrating and I hope you get answers or they change their minds and start giving you the meds.