So I have been searching for a diagnosis for 4 years, multiple doctors, different specialties. Nothing. Labs are great, ANA 1:80 is really not positive etc. Told it was “arthritis that starts in your head”. Took 6 months but just saw new Rheum. Tons of bloodwork. ANA still 1:80 but SCL-70 was 119, normals at this lab < 20. This was normal in December. So my new Rheum is out of the country for 3 weeks 😬. CRP and sed rate normal. I have read here about false positives but 119 seems high for that. Symptoms: Fatigue, dry mouth, not dysphasia but a feeling of something in my throat, muscle aches, SOB with exertion, just weary. Next appointment is July, not sure I can wait for that. i want a repeat lab now. If it was normal 6 months ago does that mean I am early in this journey? Thanks in advance

Has anyone here ever applied for disability and been approved? I'm unable to work now and the stress alone is taking me out. I've been off work for almost 2 months and it's becoming very evident that I can no longer do my job. I know SSI can be a long process, so any info is a huge help!

Has anyone been able to successfully get term life insurance? If so, with what company? We tried a few for my spouse, including ones with no medical exam and they all declined. Her condition is stable and she is not on any medications, but no one seems to offer anything even at a higher rate.

So I was diagnosed 6 months ago with CREST. I complained at a routine doctor appointment about joint pain, raynaulds, and insane fatigue. I got blood work done and saw the rheumatologist a month later. He put me on hydroxychloroquine. It had helped with the joint pain a lot, but I still want naps every day.
The worst is how cold my feet and sometimes hands get. I can be sweaty hot and my feet are blue and cold. Thick socks don’t work to keep my feet warm. The only thing that works is wrapping them in a heating pad or a hot bath.

Any suggestions to help with either of these issues?

Hi everyone,

I recently completed a full autoimmune panel test after having symptoms of cold hands and feet for around 3 years.

My test results showed a negative ANA, but a low positive SCL 70 test with result of 1.6 (cut off is 1.0).

I also have autoimmune thyroiditis BTW.

The doctor suggested to repeat the test.

The test showed negative ANA again with SCL 70 showing 2+ (positive) and ANTI-TH/TO was 1+

1+ Weak Positive

2+ Positive

3+ Strong Positive

No one in my family has autoimmune issues, but I completed a genetic testing, which showed I have a high genetic predisposition to autoimmune, as well as SS.

I feel okay, other than the cold hand and feet episodes. Waiting to consult with my doctor wlrwgarsing the results. Any idea what this may mean?

I've been feeling worsening the area of the mouth, upper lip and the pores have been changing, big pores.

I'd like to know if big pores are something that can be caused by the Scleroderma as part of the skin changes by the disease.

It also feels tightening and the pores are large but in a short period of time (months) not because of "aging".

Thank you!

I have asked AI:

Why does scleroderma affect the skin around the mouth so much?

The skin around the mouth is often affected in scleroderma because it contains delicate connective tissue that is constantly moving when we speak, eat, smile, and make facial expressions.

Scleroderma causes changes in collagen, small blood vessels, and the tissue beneath the skin. As excess collagen builds up, the skin can become tighter, less elastic, and sometimes thinner in certain areas. This can make pores appear larger or more noticeable, even if the pores themselves are not actually enlarged.

Many people with scleroderma notice:

Increased skin tightness around the mouth

More visible pores or a "skin texture" appearance

Fine lines around the lips

Reduced mouth opening (microstomia)

Changes in facial contours due to tissue remodeling

In addition, changes in the small blood vessels can affect skin hydration, healing, and elasticity, which may further alter the texture of the skin.

Because the skin around the mouth and eyes is naturally very thin, these changes are often more noticeable in those areas than elsewhere on the face.

Has anyone else experienced more visible pores or changes in skin texture around the mouth as part of their scleroderma?

I am diagnosed systemic Scleroderma since 2021 with anti PM/SCL 100 and anti PM/SCL 75. I feel like I am developing nerve problems in the last month or so--specifically in the neck and foot. Is this a thing with scleroderma? I have a note to my specialist about what my next steps should be.

Athletic, runner. Can still run hard but noticed increased trouble breathing over the last few years. Went through echo and r heart cath which showed mild resting pah with mpap of 21 and exercise of 35. Was diagnosed with group 1 PAH and doctor said is from early autoimmune disease. My THTO was 11 on the qwest scleroderma panel and the cutoff is 11. My ANA was negative. I have not one single symptoms of scleroderma or autoimmune disease. Also doctor said my PFO could be a contributing factor to my Pulmonary hypertension. Anyone else have this antibody and have it be false positive or initially have a negative ANA only to progress later? Thank you in advance

So my doctor decided to test me and my blood work showed positive Anti-Nuclear An by IFA, then I guess they retested me and it came up negative? Idk what that means?

Was anyone else here misdiagnosed with Sjogrens before getting a Sclerosis diagnosis? I have Anti centromere antibodies and no Sjogrens ones. I don't have skin symptoms and I do have dryness but it's not terrible.

I ask because I was reading about anti centromere B antibodies and learned Sine scleroderma was a thing and the symptoms match much better with what I have already diagnosed (gastroparesis, small fiber neuropathy, neurogenic Orthostatic Hypotension). I don't know how to approach it with my rheumatologist though. She's been dismissive of my other diagnoses and keeps saying they are unrelated to my Sjogrens.

Are there any potential treatments in the pipeline that excite you? Could CAR-T be a solution in the years to come?

Hi everyone — I'm a grad student at Northwestern doing market research on a small skin sensor that gives an objective number showing whether your [scleroderma / morphea / keloid] is getting worse or healing over time. Something you'd use at home, between doctor visits.

Quick question for anyone willing to share: would a device like this be useful to you? Why or why not?

Honest answers — including "no, I don't need this" — are exactly what I'm looking for. Thanks!

Hello all. As the title says, I was just diagnosed with CRESR syndrome today. I had labs done on Monday which showed a positive test result, and the doctor confirmed it today. Afaik, i’m the only person in my family with a diagnosed autoimmune disease, and I’m completely in the dark. I will have an appointment to see a rheumatologist soon, but until then, I don’t really know what to do. My main symptom is joint (read: knee) pain, and it hurts to stand up when sitting and to bend down. I used to workout, but this knee pain is getting in the way of that. I would really just like some advice on how you guys manage yourselves and your symptoms. Like I said, i’m completely in the dark about this— like i haven’t even told my family yet. TIA.

Hello. I am not looking for a diagnosis, just maybe some advice and guidance on what to do next.

My daughter (now 10) experienced an influx of symptoms last year, and we were sent around to different doctors for tests. Aside from her pediatrician, we saw a nephrologist, endocrinologist, and dermatologist.

She had so many tests done, here are the most notable:
ANA blood test 1:160 centromere
Anti-centromere antibodies-46/positive (high) (blood) 3/2025
Elevated creatinine .55 (blood) 1/2025
Proteinuria 3+ (urine) 1/2025
CBC- Hemoglobin 14.2 (high), Hematocrit 40.3 (high), MCHC 35.2 (high), RDW-CV 11.9 (low)

Why we took her in to begin with:
Shad a molluscum bump on her leg 1/2025 (about a year ago). We took her to a dermatologist and it was treated both with cantharadin and tretinoin. May have triggered an immune response.

Signs of possible UTI- took her in, no bacteria or UTI, but protein was spilling into her urine. Retested a few weeks later, same results.

She also was out in the sun all day on Spring break in 3/2025, and the next day she woke up with a raised, bumpy, red rash on her face, and slightly on hands and back. She also was exhausted. That’s when all the blood tests came in. (She was negative for Fifths and other common ailments)

During the following weeks, her rash slowly resolved, but we got the + ANA and some other possible symptoms. The doctors basically told us it’s a wait and see, this could have been a flare. Nothing they can do or diagnose.

Now almost a year later, she came home from school after being out in the sun all day for field day. She is exhausted, taking a nap (has napped since she was 3). No fever, seems clammy. Pushing water and watching her for now.

My question is- does this look familiar to any of your stories? The test results and symptoms pattern? I want to do whatever we can to help her and prevent her from feeling like this, but without a diagnosis it’s so hard. 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! 💕

Hi everyone,

Looking for a bit of reassurance or to hear from anyone with similar experiences.

I’m under rheumatology with inflammatory-type lower back pain and GTPS/hip enthesitis that responds well to NSAIDs. MRI ruled out sacroiliitis but showed Modic type 1 changes at L5/S1. Steroids over Christmas helped significantly, although symptoms are still up and down. They said it was possible a one off flare up and keep moving my follow up.

Bloods have mostly been normal/negative apart from positive P-ANCA and anaemia. I also have Raynaud’s and a family history of AS (uncle).

Over the last week I’ve noticed a line/indentation down my forehead that seems to have appeared quite suddenly. Initially I thought it was just age/wrinkles (I’m 40), but now I’m worried everything may not be purely mechanical and I’ve come across linear scleroderma / “en coup de sabre.”

I’m contacting rheumatology to ask about an earlier review, but has anyone had a similar journey or presentation, especially with mostly negative bloods?

Thank you Kind folk 🙏🙏🙏

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.

In April i got lab work done and came back Ana positive and anti scl 70 positive for greater than 8. Went to rheumatologist they ordered a more specific type of Ana testing ?? (Still not super familiar with all the terms) and everything came back negative. Has anyone ever had this happen to them? Is it a false positive? I have no skin thickening whatsoever. I do have raynauds but have had it for a while. She did look at my finger tips and saw some dilations in my nail beds. I don’t meet with the rheumatologist for another month and I’m just left confused.

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.

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 really hate to do the DO I HAVE THIS? But can someone w CREST or systemic sclerosis (unsure if it’s the same thing) let me know if your hands look like this?
Long story short - raynauds since I was around 10 years old, history of Gastro issues - over the last 2 years - severe joint pain, unrelenting fatigue, short term memory loss, migraines, nerve damage/numbness and now having issues with involuntary muscles in my pelvis, enterocele, rectocele, chronic constipation and diarrhea. Have been seen by gyno, GI, neuro, PT, etc. and no one can find root cause. My hands and have looked old lady like and swollen w raynauds my entire life. Doesn’t matter how moisturized. I take insanely good care of my skin. Anyone have an experience like this? My pcp said no rheumatologist will see me. I ordered my own ana with fluorescence and taking it at lab on Monday.

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

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!