r/scleroderma

Hi i have SLS!
Im 36 and i can tell about my early symptoms!
I had first of all inflammatory part on my fingers, it’s red, bigger and painful near the joint and when it goes away it become petechies it was WORST when i was doing sports, mostly climbing so i stopped :(
A lot of joint pain and pressure feeling in the knee and the hand.
Raynaud in the water or cold wind and fatigue +++
Sometimes i feel i can’t swallow meat, like if i was going to choke but i don’t know if it’s that or just in my head like the rhumatologist said!

I knew i had something, it’s knew for me.

Thank you:)

Hey yall, I have had my colonoscopy/endoscopy with no findings other than a tiny polyp that has been removed and a hiatal hernia. I have been prescribed pantoprazole, which is helping with my reflux. My issue now is choking - frequently! Not necessarily requiring intervention, but choking on water, air, or food at least once a day. Is it worth asking GI since nothing was seen? Is there anything that can be done? Thx!

I’m not confirmed with the diagnosis yet. I have to meet with a rheumatologist first. What are some things you’d want people to know? What are some misconceptions? What advice would you have? What products or self treatments do you swear by? (If anyone has a weighted heated blanket I would love if you linked it!)

I want to know everything about everything. I did something similar when I originally thought it to be fibromyalgia.

I feel like my condition barely counts, not much for physical symptoms, but the labs say otherwise.

Thanks for your time! 💕

Does anyone feel that this disease is like a roller coaster? When I'm not in a flare I can sometimes feel so good that I question whether I actually have this Scl thing. When I'm in a flare it's clear that I have it - there are no doubts. It makes me crazy. Is this normal? I was diagnosed in January and haven't really accepted it yet.

About a year ago, it started with my fingertips and the tips of my toes going numb. At first, I honestly thought it was from working too hard or overuse. Ibuprofen helped in the beginning, so I didn’t think much of it.

Fast forward about six months, and things got worse. My hands and feet were constantly going numb, with a pins-and-needles feeling that was always there. It became painful and hard to ignore.

Three weeks ago, it reached a point where I just couldn’t take the pain anymore. I went to the emergency room three different times on three consecutive days. Finally, they were able to review my lab results, and my ANA came back abnormally high. On the third ER visit, they ran more tests and confirmed it is scleroderma.

Since then, things have continued to progress. My ears are constantly ringing, I have headaches, pain in my back and sides, chest discomfort, and digestion problems.

Right now, I’m trying to get in with a rheumatologist, but it’s almost impossible to get a sooner appointment. The wait times are long, and I feel stuck in the middle of it all. In the meantime, I’m wondering what I can do while waiting. Any advice, experiences, or suggestions would be really appreciated.

I've had this lovely condition called scleroderma for decades. I also have a plethora of autoimmune disorders. I recently got my first finger ulcer and another one is forming. I showed my Dr the first one. He dug his fingernails in it to find out something. I'm not really sure what, but it wasn't pleasant.

For those that have finger ulcers, how long does it take to form? Do they always open up? Any advice? Cover it, don't cover it, lotion, keep it dry, etc?

Thanks!

My recent labs showed ANA 1:640, Scl-70 > 8, and RNP 1.
I also have Raynaud's. My joint X-rays were completely clear, so my doctor just recommended monitoring every 2 months.

Recently, I’ve noticed the skin on my fingers, especially over the joints/knuckles, is getting noticeably darker.
Has anyone experienced this?

I’ve been on my medical journey to find out what is wrong with me for a couple years now. Based off everyone who has seen me they like no way it isn’t autoimmune. I thought FORSURE I had RA given how painful my joints are in my hands (mind you I am 27!) but while positive for RA my levels are within normal range. My ANA test is negative. Lupus is negative. I do have abnormal results but nothing points to anything. Rheumatologist ordered a scleroderma panel and I was so disappointed still having no answers I waited til last minute to do the bloodwork. I am a very hard stick often needing to use an ultrasound machine so it can be a long process. They always say I have thick skin as well. So I thought might as well just do it to cross it off the list. The results came back and everything is normal besides 1. The th/to one which is 18. When I looked it up it scared the heck out of me. But if everything else is normal that’s means it’s not it? My lungs are not in great shape. I’ve had asthma since a baby and did have many attacks that were crazy but none after 18 but my lungs were no better because the asthma made me susceptible for sickness. I had bronchitis and pneumonia every year. It caused damage to my lungs. I haven’t had a scan on them in a LONG time but I did have a CT scan on my abdomen for other reasons and the findings showed the bottom half of my lungs and it listed the damage to them. So even though I feel like my lungs are okay they’re not lol it’s just all I’ve ever known. Seeing what the th/to can do to the lungs and heart absolutely scare me. I had an ultrasound on my heart from cardio after 6 abnormal EKGs and the cardio said my heart is all good. I will now list everything I deal with
-joint pain mainly in my hands
-swelling in my hands and on really bad days my arms too. Sometimes I’ll have good weeks where only 1 day it will be swollen. Other times it is everyday. Most the time it’s that I wake up with the swelling and it calms down throughout the day unless it’s real bad. But people can notice it even when it’s down. Rare times it will start up at night before bed. The joint pain and swelling started in 2018 and it started as a once a month thing and became this now.
-redness /splotchiness. Especially in my hands and feet but has now spread my entire arm. It used to go away but now it’s “permanent” … purple shades as well.
-whole body stiffness when I wake up it is so intense now. This started around 2016 but not as bad as it is now. I stretch every night to help. When I get up to walk some morning I straddle like a penguin. It is so hard to move my joints. It’s like it makes my muscles ache sometimes.

-I have POTS and low BP. I used to take meds to raise my BP but it hasn’t been needed. Diet really helps. But oh man when I have those days when my pots/bp is low and I wake up with the stiffness and be weak on top of swollen af it really sucks. Whole day is spent in pain and can’t do anything.

-I do have nerve damage. In my back left upper side. The developed during having to nurse and rock my infant over 4 years ago and still hurts. Sometimes parts of my upper thighs though this has improved! My left big toe which seems to be spreading still causes pain like my back.
-GI issues. Colitis I think? Idk if that was a one off diagnosis and I don’t have it anymore I don’t know. I had the CT scan showed colon was infected and inflammation. I deal with severe constipation and now take linzess which helps a ton. While on it for a bit I had a colonoscopy they said my colon wasn’t inflamed anymore but I had a pre cancerous polyp which was removed. I’ve dealt with pretty bad bloating my whole life. Literally look so pregnant. I wish I atleast was a bigger person cause it looks so odd being small and have a huge belly. It used to go away during the night and I’d wake up with a flat belly now I’m lucky if that even happens but when it does I all of a sudden have abs 🤣
-my facial rosacea has gotten worse. I’ve seen much worse than mine but for me myself it’s worse. It never calms down.
-KP bumps. Used to just be on the back of my upper arms and come and go. It’s been permanent since 2018 now and have spread to my legs and every part of my arms. No matter what I do it doesn’t go away. I’ve had prescription cream even. I figured the KP is why my skin is thicker but I don’t know.
-I’m allergic to vibration (yes lol it’s a real thing!!)
-when I get out the shower my skin is so itchy. Cold water has no effect. It’s got to be warmer /hot water. This started around 2020? Maybe a bit sooner.

-if I do too much the day before my swelling is going to be worse.
-I bruise easily.
-endodontist thinks I could have something wrong connective tissue wise because show badly my gums or whatever respond to dental work. I have to be prescribed a steroid (which helps a ton immediately)

I may have forgot something and I know some of this is not related at all but I wanted to give a full picture of what I am dealing with. The swelling and joint pain has caused me so much pain I just want answers already and to treat it finally. And it so embarrassing leaving my house even strangers ask me what is wrong with me why am I so red and swollen. Im literally looking into getting some body foundation lol

Will be starting this medication next month. In addition to stressing about potential side effects, now I'm also worrying about the size of the pills as I've always had trouble with larger pills. Sadly though I also have trouble taking oral medication if I don't like the taste. Anyone else in the same boat and which option did you go with?

Add to the above that I'm a grazer and like to eat and drink iced tea all day and that I prefer to leave my days unscheduled. The morning dose is no issue but finding 3 hours where I'm not eating or drinking later in the day will be tough for me. Because I'm a late riser and a night owl, I'm thinking of eating up until about 8/8:30 in the evening and then taking my evening dose at 10/10:30 p.m. Any and all scheduling advice is appreciated!

Let me preface this with the fact that I know how annoying these 'do i have scleroderma!?' posts are. I've waited a while to make a post and have been thoroughly evaluated w/ copious blood work.

Long story short: 24y/o male, developed Raynauds and visibly enlarged/hemorrhaging capillaries in my nailfolds 3 months ago. No other symptoms. Perfectly normal CBC, two separate results of ESR 2mm/h & CRP <3mg/L (one in mid Feb, one last week), 3 negative ANAs (via IFA), AVISE panel with 50+ antibodies on it all negative. My capillaroscopy was 'nonspecific, possibly early scleroderma pattern'.

My rheumatologist says at this point it's likely that I have some sort of benign microvascular fragility that is causing the Raynauds and enlarged/hemorrhaging nailfold capillaries and scheduled me to come back in 6 months to reevaluate.

Are there any other tests that can offer more information? I'm generally an anxious person and would love more reassurance than 'probably nothing, let's wait and see', though I understand that might be the only option.

Within the last few months I (23f) have been experiencing extreme fatigue, terrible brain fog, joint pain, muscle pain/weakness & frequent cold-like respiratory illnesses. I am also very prone to GI issues like bloating, abdominal pain & constipation. I just ended up in the ER with chest pain, tachycardia, shortness of breath & dizziness/feeling like the blood is rushing to my head. I also have been experiencing what I assumed was blood pooling in my hands. They get mottled and feel tingly. The doctor in the ER said it was hard to tell but that it could possibly be Raynauds. I then received a working diagnosis of POTS & have been wearing a heart monitor. I was suspecting something auto immune related and more labs revealed ANA titler at 1:320, >8 Centromere B antibodies and elevated sedimentation rate. Would you say these symptoms and results point towards scleroderma? I am particularly worried because my EKG results in the ER indicated potential right atrial enlargement. The doctor I saw following my ER visit told me that was nothing to worry about and tested my vitals in different positions leading to her suspecting POTS. I’m now worried given my other test results that it could be Scleroderma-associated Pulmonary Arterial Hypertension. I have a pulmonary test scheduled for June 11th. Would it be wise to schedule an immediate echocardiogram as well? This is all really stressing me out.

Sorry this is a bit long - I need to learn how to edit more! So, I have been diagnosed with En Coup De Sabre for the past couple of years, although I believe it's been there for about a decade. It was only when I was having systemic issues that I realised what it was. My rheumatologist first diagnosed it, but I've seen two dermatologists since who confirmed it.

It's on my forehead in the centre and I have some extending onto my scalp along the top and around the back. There are possibly one or two more developing on my forehead and two slightly suspicious looking dents on my chin that are fairly recent. I'm diagnosed with Undifferentiated Connective Tissue Disease and microvascular APS, but symptoms and test results seem to point to Lupus, APS & Sjögrens.

Dermatologist seems to think Lupus too and thought it was a bit ridiculous I'm not on immunosuppresants. He wrote to the rheumatologist to ask them to consider it. Haematology think I have microvascular APS (mAPS), but as anticoagulation hasn't improved my symptoms, they have stopped them and discharging me! There's no clear guidelines on treating mAPS, but immunosuppresants are usually more successful. Rheumatology told Haematology I don't need immunosuppresants, despite having not seen or spoken to me for 8 months (I contacted them twice 6 weeks ago and was sent an appointment in June instead of a phone call to discuss anything).

Rheumatology seem to be doing everything they can to convince everyone there's not much going on and it seems unfortunate I'm stuck with a set of rare symptoms/conditions (I have Erythromelalgia and Raynaud's too). I'm only on Hydroxychloroquine right now and she even said I could stop that if I wanted. I'm probably more worried about blood clots and strokes right now, but I also don't want to end up with several indentations on my face. I'm finding the whole thing quite distressing now as well as feeling very unwell. I am looking for a private rheumatologist more specialised in Lupus & APS.

Has anyone else been in a situation like this or have any suggestions on what to do? Get back in contact with the dermatologist? He said he didn't feel like it was his place to initiate it. This is the NHS in that UK and I already asked for a second opinion a couple of years ago, so I don't feel like I can keep doing that.

I (23f) was screened for ANA’s due to suspecting possible autoimmune disease. I’ve been having excessive fatigue, joint pain, major brain fog and back to back cold-like respiratory illnesses. I’ve also began having tachycardia, shortness of breath, dizziness, blood rushing to my head and mottling in my hands typically accompanied by tingling sensations, that I suspected was blood pooling in my hands however the ER doctor did say it could potentially be Raynauds. They have attributed these symptoms to POTS as of right now. My ANA titer was in the negative range at 1:320, however my Centromere B was >8. From my research it seems this result is rare. My question is, is it more likely ANA is a false negative or centromere B is a false positive? And are there circumstances in which high levels of centromere B are normal and not indicative of an autoimmune condition? Additionally, do my symptoms seem as if they could be the beginning symptoms of systemic sclerosis?

https://i.redd.it/thbofvysbm0h1.gif

I just printed some adapters for the faucets I have throughout my house so my wife can use the knobs more easily (she has a disability). I’m sharing them here in case anyone has these faucets (FV brand, Arizona model) and knows someone who has difficulty turning them or lacks hand strength (people with Rheumatoid Arthritis, Scleroderma, elderly people, etc.).

I recommend printing them in PETG with 0.20 mm layer height, 6 walls/perimeters, and 35% infill.

Here is the link to download for free:
https://makerworld.com/es/models/2789042-adaptador-discapacidad-pomo-grifo-fv-arizona-b1p#profileId-3100960

https://preview.redd.it/ep1ubm1xbm0h1.png?width=604&format=png&auto=webp&s=9a808e28530a57a7ad011e90360e6f222c607466

https://preview.redd.it/f5e357ovbm0h1.png?width=1871&format=png&auto=webp&s=bd3b66c5f0571c2c55a4a54a26f3503412fa57a1

https://preview.redd.it/yh2mwl2zbm0h1.png?width=298&format=png&auto=webp&s=7654d28af3338904020912ad9d80d7f6f2e0b360

https://preview.redd.it/69ht87lacm0h1.png?width=310&format=png&auto=webp&s=4cba8d4a409ab055368d218aa55b8c68c1e84dc7

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I was diagnosed with systemic Scleroderma earlier this year and it's been wreaking havoc on my lungs. I have fibrosis on both lungs and possible emphysema. I was wondering if anyone living here in Oklahoma might have some recommendations for a good pulmonologist to see?

I was supposed to see one a few months ago, but can't get a call back. I was hoping maybe someone could help me find a decent doctor. I have a hard time researching doctors because hardly any of them have actual honest reviews on their websites and I've had bad experiences with doctors before after supposed "good" reviews. I know everybody's definition of a decent doctor can be a little different, too, but I just need a place to start.

Thank you in advance!

My wife was diagnosed with Diffuse Systemic Sclerosis in december 2025, her Rodnan Skin Score is 36.

Her arms are extremly hard and she suffers each time she has a vaccine, blood test or IV: The force that nurses apply to pierce the needdle through the skin hurt her veins once is hit. Also the skin is so thick that nurses can't find the veins in the first place.

How do you cope with this problem? I live in a poor country in South America, maybe in other places in the world, nurses use others methods for patients with hardened skin.

Thanks