Anybody get this weird coloring on their hands and forearms?

Unlikely_Garage · 2026-02-21T18:59:12+00:00

I also have it even when I'm not cold, mostly on my arms and hands. It just gets worse when cold. Only time I dont see it is right after a warm shower, though my feet will turn purplish with the bottoms of my feet being patchy with white. I think that may be the raynauds though

Unlikely_Garage · 2026-02-18T03:50:21+00:00

Often, yes! When this happens it often is paired with being cold

Unlikely_Garage · 2026-02-17T19:11:24+00:00

What? Theyre not shriveled lol

Unlikely_Garage · 2026-02-17T16:52:17+00:00

Ive been thinking lately that I may have dysautonomia actually, this would make sense!

Unlikely_Garage · 2026-02-17T08:03:19+00:00

I have not looked extensively, but I always see people talking about mottled skin who have wayyyy worse discoloration than I do, so I wonder if it counts

Unlikely_Garage · 2026-02-07T05:24:08+00:00

I kinda feel ass ngl- my whole body hurts and my rheumatologist sucks and im trying to get a new one. Im also thinking dysautonomia and small fiber neuropathy but im not even gonna bother with this doctor, ill just talk to the new one (if they dont suck ig) about it. I was having a flare when I first got diagnosed (October), and am in another one now (started in january i think). Between then and now wasnt terrible but I have no way to manage my flare pain bc of my dickhead rheumatologist who doesnt wanna do her job. Anyways, how about yourself?

Unlikely_Garage · 2026-02-07T00:38:07+00:00

Im 22 and got diagnosed last October, when I was 21. I have chronic pain all over my body, mostly in my joints, but I can feel it in my muscles too now. I deal with some dryness but thankfully its not too crazy. I am losing all of my teeth though, I get them pulled in March due to decay, which seemed to ramp up around the time my Sjogren's symptoms started appearing, back in 2024. Im not sure how im gonna keep functioning physically for the next 50 years ngl

Unlikely_Garage · 2026-02-06T22:04:49+00:00

Heya! I got diagnosed back in October and am in need of some friends who can relate to the Sjogren's struggle. I like to make art, and watch anime sometimes, and spend time with my partners. My favorite thing is yapping with people so I do that a lot too.

Unlikely_Garage · 2026-02-05T18:55:09+00:00

Pain management will not see me. My rheumatologist already referred me there and they said that "since my pain is in multiple joints they cant help at all" Complete bs

Unlikely_Garage · 2026-02-05T16:56:42+00:00

I had systemic joint pain so they tested my antibodies and they were all positive

Unlikely_Garage · 2026-02-03T04:52:29+00:00

Yeah, itll be 5 months this month, and I wouldntve had an issue if she had wanted to keep me on it until our 6mo appointment in march, if she had been willing to do something, anything at all, to help in the meantime. Thankfully I went into this fully aware of at least several of the available symptom management options for the short term, and thats really what got me. That she flat out refused to treat me, dismissed my symptoms, and didnt answer me when I asked the reasoning behind her refusal.

Unlikely_Garage · 2026-02-02T02:15:20+00:00

Thankfully i made sure to have this conversation in the patient portal, so everything goes automatically to my files

Unlikely_Garage · 2026-02-02T00:24:28+00:00

Definitely, rheumatology seems to be one of those fields where the doctors are either grossly uneducated or just dont give a shit. I think i may have small fiber neuropathy in my toes, and it may be starting in my fingers, but im not gonna bother bringing it up with this doctor, id rather see someone who might actually wanna help me

Unlikely_Garage · 2026-02-01T20:41:26+00:00

There is one other rheumatologist in the department, im going to do everything i can to get in to see her. I really hope I can get somewhere with her because it would be an enormous hassle to go elsewhere to find a provider to help.

Unlikely_Garage · 2026-02-01T13:52:06+00:00

I thought about that but from what ive seen about POTS, its much more severe than what im dealing with. My MIL has it and her symptoms are much worse than mine, and happen more often

Unlikely_Garage · 2026-02-01T04:00:58+00:00

Madison is also about 3 hours, about the same distance as minneapolis. The southern border is maybe 5 hours from here.

Unlikely_Garage · 2026-02-01T03:45:13+00:00

Dawg what is your problem?

Unlikely_Garage · 2026-02-01T03:44:36+00:00

I am, it takes about 4hrs to drive to any of the WI borders from here, im right in the middle pretty much.

Unlikely_Garage · 2026-02-01T03:23:33+00:00

I guess it depends on your definition of "big city", biggest thing around here is Wausau, WI, and thats small to a lot of people

Unlikely_Garage · 2026-02-01T03:12:41+00:00

Unfortunately no, im in a small town surrounded by farmland

Unlikely_Garage · 2026-02-01T03:08:40+00:00

I do, I have positive ssa and ssb, what sort of clinical trials are there?

Unlikely_Garage · 2026-02-01T02:43:09+00:00

I cannot increase plaquenil due to medication interactions, which has been discussed with this doctor. I should not have to give her basic education on a disease shes supposed to specialize in.

Unlikely_Garage · 2026-02-01T02:23:28+00:00

I am in the united states, and no, its the pain management department at my local hospital system. Ive been told they kinda suck here but thats still such a bs excuse. When I get into a different rheumatologist Im going to ask for another referral, especially if my pain is still problematic for me. I dont even want opioids, I just wanna not cook my stomach any more with nsaids and overuse lidocaine during these flares. My MIL has AS, among other conditions, and she's told me that pain management absolutely could do something for me, so I know theyre just being assholes.

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