u/Grand_Pool2709 — reddlx

Bumps turning into ulcers, anyone else??

I have no idea if this is autoimmune related or not but wondered if anyone else has experienced this?

A month ago I woke up with a tiny pimple sized bump on my stomach..I had been gardening the day before, so I assumed it was a bug bite. A week later the bump grew and got sore and seemed infected. It was very very painful by then and had a large lump under it. I was put on antibiotics that didn't help and a week later I changed to stronger ones. It is basically healed now but took forever.

10 days ago... a new small bump appears a couple inches from the first. It has progressed into a gross, weepy ulcer now too. I realize the first one likely was never a bug bite and this has to be something else. I am going to go to a clinic today or tomorrow (my doctor has no appointments), but could this be autoimmune related? It reminds me of a time a few years ago when I had the same 'bug bite' sort of thing on my cheek that behaved the same way as these have. Maybe that was never a bug bite either.

u/Grand_Pool2709 — 10 days ago

▲ 12 r/Rheumatology+1 crossposts

How do I know what symptoms are important??? I don't want to waste the rheumatologist time.

I have an apt with a rheumatologist in july. I was not expecting abnormal results. I went to the doctor because I had weird muscle issues with my thighs. I injured one while sitting and eating lunch...it was so painful I could barely walk for 3 days. Then the same feeling started on the other thigh. I had to be so careful how moved of I felt like my muscles were tearing apart. That has now gone... but it was the reason for tests. I thought it was maybe a perimenopause symptom. My doctor said 'something Williston in the tests, but you aren't going to like it.' I attached my results.

I am struggling trying to figure out what are symptoms, and what are important to tell the rheumatologist. The weird muscle stuff is important, and I also get random shooting pains in my hip that come and go. X-ray showed nothing. Another big one is heat/sun sensitivity. I get headaches and migraines from it, feel sick to my stomach, weak and exhausted after being in the sun for long. That has been for years. I have Raynaud's, hypermobility of the joints (some joints), lately have had issues with infected skin legions, maybe boils? I needed multiple courses of antibiotics and it still has returned. Brain fog is another, and overall stiffness. Also I have reflux and have been on meds for it for years. I have a numb patch on my calf about the size of a lemon. My hands go numb and tingly very easily, like when holding an umbrella. My feet and legs fall asleep super easily too.

There are others. But... how do I know what is important??? Anyone else have these sorts of symptoms? I am worried the rheumatologist will think I am wasting their time since I am functioning.

u/Grand_Pool2709 — 13 days ago

▲ 5 r/Sjogrens

I feel disoriented. Anyone else experience this in the beginning?

I want to start by saying I don't have a real diagnoses yet as I haven't seen the rheumatologist. That is coming in July. My doctor has told me I have sjogrens, along with other things 'for sure' which is why I am on this forum. I realize he is likely premature in saying that with certainty. But what I know is that there is something autoimmune going on. High ANA, high ds dna, high SSA, positive ESR so far.

Here is the thing. I am a person who rarely goes to the doctor. I go if something is serious and I know it is, or I just deal with it myself and don't complain. I minimize things, suffer through etc... It's just how I've always been. I have had a lot of symptoms, both currently, and going back as far as childhood. Some quite serious, but eventually they passed and life moved on. Like as a teen I had episodes of painful swollen and bruised hands randomly for months. It was investigated, never explained. I was tested for Lupus, I assume ANA? And nothing showed. It passed and I forgot about it. Or heart trouble I had in my early 20's that was never explained. My heart would race to over 200bmp with no explanation. I saw multiple doctors, spent time in hospital even the ICU. Never explained... it passed. And Weird muscle things where I would experience extreme pain, but it would pass eventually and then I just move on, as you do. I have always had photosensitivity. It has gotten worse over the years, but even as a kid I remember day long hikes at summer camp. Every time, at campfire that night I would have a terrible headache and feel like I was going to throw up. I have Raynaud's, and hypermobility of the joints. There are many things.

I have never tried to link any of these things. I have never really given them much attention. So now I am trying to see what symptoms to mention to the rheumatologist and I am not sire what things to mention. I am even feeling unsure about what is normal and what isn't since some began in childhood. Did anyone else feel like this? How do you make sense of it? In some ways it feels validating and a bit of a relief. Like permission to be an inconvenience and listen to my body rather than struggle through. In other ways I feel confused, and and unsure how big a deal this is, or how much weight I should give it. It's just a bit disorienting.

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u/Grand_Pool2709 — 22 days ago

▲ 4 r/Sjogrens

Newly positive SSA + PCP confident of Sjögren’s. Did your rheumatologist agree?

I am at the beginning of this journey, and I am expecting it to be a while before diagnoses are finalized. I had a strongly positive ANA, positive double strand DNA antibody test, and strongly positive SSA test. My PCP says, “we know you for sure have Sjögren’s, but we don’t know what else is going on yet.” I have an appointment with a rheumatologist in July. I am curious if my PCP can be certain I have Sjögren’s. I’m prepared for the rheumatologist to say something different, or even to just monitor it for a while.

I have multiple symptoms. At this point I have no clue what is autoimmune and what isn’t. I’m just learning how many things I discounted could actually have a reason.

I have been sun and heat intolerant for many years, as far back as childhood. That is a massive one for me. I get migraines, nausea, dizziness, and weakness from being in the sun too long. I have hypermobility of the joints, Raynaud’s, muscle symptoms... so many things. I am trying to figure out what it means for the future, and what changes I should make. It is a bit overwhelming.

I would like to hear from others about your experiences with this condition and what it has meant for you. What changes did you make? What do you wish you knew at the beginning of your journey?

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u/Grand_Pool2709 — 23 days ago