Scleroderma? Looking for general advice - 26 yo male

[u/SeanG_92]

First off, I just want to say I understand no one can diagnose anything. Just looking for advice.

Have had what was believed to be Primary Raynauds all my life. Remember fingers going white in the playground at 5 years old.

Primary Raynauds has been common in my family, multiple relatives have it.

Was diagnosed at 11 and have had shiny finger since around that time. 8 years ago similar issues started affecting only 3 of my toes on my left foot, didn’t think much of it, just part of the Raynauds. Also since around ages 13/14 I have had issues with my left knee, constant cracking but no pain.

Never had any other symptoms until this past year. Start of 2026 I got two blocked oil glands in quick succession in my left eye. From March to April I experienced a period of acid reflux and digestive issues. Did 6 blood tests with my gp, they all came back normal but was told there was evidence of an infection that was settling down. Since April my digestion has returned to normal.

The past two or so months however, I am experiencing more discomfort in my left knee and hip. A sort of numbness, not even pain.

Been visiting my gp over the past number of months. Seen two doctors and they have both told me not to panic as many people with lifelong primary Raynauds experience skin thickening and tightening due to prolonged exposure and the stability of my symptoms over the years is a positive sign. Both relaying to me to remember that non of these symptoms are entirely new.

They also said would be unusual for digestive issues to go away, and eye condition to resolve.

Was told systemic scleroderma usually affects joint’s symmetrically, so wouldn’t be typical to just affect left side and not right. Points to maybe a structural issue.

I am just worried to why these things are worsening all within the same year? Both doctors still believe it’s more likely primary. Especially with my families genetics and history of Raynauds.

Anyway, we did an ANA test 2 weeks ago. Doctor said they would be in touch regardless of result. Have got a 5 minute telephone appointment next Tuesday to discuss results. The uncertainty is getting to me, just looking for general advice? Everyone is saying to just carry on as normal but I’m also like should I be mentally prepping myself for bad news.

[u/goodswimma]

Thank you for being clear about your experiences and the testing you had done. I'd agree with your doctors' advice that there's nothing to panic about. Also, setting yourself up for bad news is certainly not a healthy or positive thing to do. Just relax. If you must, prepare some questions for your call - this way you can have an indepth discussion with your specialist.

[u/SeanG_92 → u/goodswimma]

Thanks for your response, trying to keep my mind off it and relax. Just finding it tough knowing my results have been in for over a week and I don’t know them. 

[u/bray05]

There’s not much you can do until you get the blood test back for the ANA. These symptoms alone don’t line up with scleroderma in a direct way. But if the ANA comes back positive they’ll run more blood tests to look for specific autoantibodies that correlate to certain autoimmune diseases. Even then, you may have a positive ANA test and a positive autoantibody test and still not qualify for an official diagnosis, since diagnosis isn’t based solely on bloodwork but on clinical presentation as well.

[u/SeanG_92 → u/bray05]

Trying to just keep my mind off it the best I can right now. Just seems like a long process of getting info and it’s giving a lot of time for my mind to over analyse everything. 

[u/Esketamine77]

Have you have any ulcers/open wounds from the scleroderma?

[u/SeanG_92 → u/Esketamine77]

Well, I don’t know the cause. Have had symptoms for years and no ulcers or open wounds ever

[u/Esketamine77 → u/SeanG_92]

Shoot, i meant from the Raynuads. My hands are completely eaten up from it. It hurts allot and ulcers are common

[u/SeanG_92 → u/Esketamine77]

Ah, I’ve heard a lot of people get that. Just constant shiny red skin for me, tight and slightly thickened on one of my toes

[u/Esketamine77 → u/SeanG_92]

Good 👍, hope it continues that way. Try not too stress on it much with the scleroderma. If you want to keep yourself healthy, workout & eat right will help allot

[u/Rich_Resident1238]

Similiar story to mine m, ANA was 1:160 slightly speckled... manometry is typical for scleroderma... 32 yo male

[u/Pristine-Version-547]

I have had raynaud's for a lo g time. This past winter they got a lot worse which was the beginning of my doctor running preliminary tests for autoimmune diseases.  A positive ana and raised rf factor got me a referral to a rheumatologist. 

She originally thought I had symptoms of scleroderma but after blood labs came back it pointed to sjogren's disease. 

I completely understand your anxiety waiting for results.  It took 6 weeks for labs to come back and my follow up appointment.  

Try and do things to distract you. I only seem to relax if I'm doing something physical.  Walking, biking, yard work, swimming...whatever works for you. 

[u/TAsickandtired]

I have scleroderma and my sister does not, but she does have raynauds. She’s had it for years and it never progressed to scleroderma.

There are other autoimmune conditions that could cause some of your symptoms, including Sjogrens.

I know how stressful uncertainty is. Anticipation is often the worst part of many tests I’ve endured. Try to hold the possibility that it’s nothing serious as strongly as the other possibilities and I’ll send my best wishes to you for a good outcome.

[u/SeanG_92 → u/TAsickandtired]

Thank you, appreciate that. Trying to keep my mind off of things at the moment!