Greetings, all. I was diagnosed with systemic diffuse scleroderma in June 2009, just as I was finishing my undergraduate degree. Flash forward 17 years and I have spent the last 8 years working as a children’s librarian.
I’m curious about others. What form of scleroderma do you have and if you are still able to work, how do you earn a crust?
These are under the skin. Docs aren’t sure if it’s limited or diffuse yet, but I tested positive for th/to. Does anyone else get these? It was one of my first symptoms
Hi!
I am 20 and have been recently diagnosed with celiac disease and limited scleroderma. Positive ANA, titer 1:1280, centromere pattern
I have really severe chronic pain and fatigue. No skin involvement besides raynaud’s and a lot of telangiectasias.
My rheumatologist and I came to the conclusion that my condition isn’t severe enough yet to necessitate the use of immunosuppressants, so we are going to try low dose naltrexone.
What are your experiences with LDN?
Another question:
I have been diagnosed with POTS but never received a tilt table test. I am scheduled for a lung function test to check for the possibility of pulmonary hypertension.
Did anyone’s suspected POTS turn out to be Pulmonary Hypertension? If you have Pulmonary Hypertension, what has your experience been symptom-wise?
Thank you all!
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.
30 y.o female 150lbs, I’ll try to be as concise as possible. In April at my annual pcp visit I mentioned these little red dots that started showing up everywhere. Eventually she asked if I wanted labs done to rule out anything autoimmune since my cbc was normal. I agreed. A couple weeks later I got the results back. Positive Ana, centromere antibodies. Sed rate and crp normal rheumatoid factor negative. She gave me a referral to rheumatology, the soonest they could get me in at this location was FEBRUARY.
Fast forward a couple months, I’m noticing more symptoms. I went to ER for chest pain, cardiac issue ruled out but did have a 6mm lung nodule on ct which I have to get reassessed in a year. A couple more episodes have happened which I now realize is acid reflux/gerd. I’ve been taking omeprazole daily for a week now which seems to have helped some. During this time I developed pretty severe hives that causes my eyelids to swell slightly. Finally on the 5th day of the hives I got a prescription for prednisone and was taking 20mg Claritin daily which seemed to make them go away. During that flare up my crp was elevated at over 13 and homocysteine was elevated as well. My BP has also been elevated during this time.
I have degenerative disc disease in pretty much my whole thoracic and lumbar spine and have had raynauds since I was in high school. I get random joint pain and swelling in the affected knee and ankle. I have pretty bad brain fog and memory issues, as well as fatigue most days. I guess what I’m asking is would you guys try to see a different doctor to be seen sooner or am I just being dramatic and can wait until my original appointment? Thanks for reading this far😅
Everybody is afraid to call this anything but i have been in a world of hurt lately. Whether its having T-Rex hands until they zap me with prednisone, my muscles in my legs and back, the poisoned feeling, or the fingers going white regardless of temp...nobody wants to call this something.
Lately its been:
Leukopenia, Elevated CK, raynauds, abnormal nailfold capillaries, 1:160 speckled, all ELISA ANA tests and nornal antibody tests I pass with flying colors, BUT pm scl 75 comes back as weak positive... And nothing skin wise. Help! I have been feeling extremely fatigued and if i over exert myself I spend the next few days feeling as if I have been poisoned, and have a weird rash over my nose and cheeks. The worse I feel, the worse it is. Lungs good, heart struggles under duress, and has lost some function recently.
If I hear chronic fatigue syndrom one more time im going to lose it. I was an athlete my entire life and I can feel that something is REALLY, REALLY off with my body.
What did you guys feel at the beginning? What did they end up really finding?
Im lost, and honestly kinda worried. I feel like garbage and its getting worse.
I have maybe had Raynauds type symtoms 5 times over last 5 years. just like a numb toe. and i am stiff, but i blamed postpartum. What does this mean?
I have diagnosed ssc and have messaged my rheum. I don't recall injury to my hand and thing popped up overnight that looks like a blood blister.
Does anyone know if the disease or cellcept can cause this? Or is it probably just a blood blister?
Hi, I have a bit of joint pain and stiffness and take OTC pain meds on an almost daily basis. I’ve tried PT, acupuncture, and massage. Each feels great for a little while and then eventually it comes back. I’ve lost weight and done some light exercise but it’s not helped. Any suggestions or should I just go to the dr? Thx!
I’m curious to know what pain medication everyone is taking daily? I want to know if it is similar to mine. I just left a message with my palliative care provider explaining that mine is not effective whatsoever and I can no longer get out of my chair that I practically live in!
Thank you.
I'm 26F and had the extended scleroderma panel ordered by my dr after having 1:80 nucleolar pattern for a few years. I do have Graves' disease but everything else has been negative. Now having lots of weird hand symptoms, joint pain, stiffness, tingling, etc in my left hand. My doctor ordered a test for all of the scleroderma antibodies, including the more rare ones because of this. The results are taking a bit long and I'm wondering if anyone knows how long they waited for their extended scleroderma panel, if they've had one done. Also, I'm a guitar player, so it's quite worrisome, since that is my entire livelihood and source of income. I haven't been able to play lately. Also wondering if there are any instrument players out there just to connect.
Hello I have no one I want to talk to about this so I thought I might as well post on reddit with a group that maybe experiencing something similar. Ever since I was diagnosed and started treatment I have been on a pretty rapid decline physical and a little bit mentally. Before I was diagnosed I was very involved with projects around the house and just generally more active both at work and at home. I have been feeling really down and lesser compared to how I was and how I am now. I don't like to talk about this out loud to family and friends as I don't want sympathy for them to remember me as a capable person(probably ego involved i am not sure). I have an amazing family which I am lucky to have but I just don't feel like I'm as involved as I could be which hurts me deeply. Running around and picking up my daughter is getting harder and harder and some days I just feel exhausted after work knowing I have to do simple tasks that used to be extremely easy but now feel larger. I feel guilty and try my best to push through most of the time and have been successful but I just fear a day where I won't be able to. I feel guilty that my wife has to deal with so much and she's not healthy either so it makes it much worse because she used to lean on me for support. I am hopeful I will get better and have a positive mindset I know I will beat this but I worry what will my quality of life will be and how I will look at myself. Thank you for listening.
Waiting on approval letter for my Nintedanib (Ofev generic). I received a call today confirming approval.
Hi friends. Diagnosed with CREST. For the past 3 days I’ve had absolutely insane heartburn. It was to the point this morning that I could barely breathe and, worrying it had something to do with my heart, I went to the ER. Apparently it’s breakthrough GERD symptoms. I’m on 80mg of pantoprazole daily (40mg twice a day) and since I’ve been on this dose (over a year) I haven’t had any episodes like this. Does this mean my poor esophagus is getting more damaged? I already have a patent esophagus with an absent LES and muscosal damage. My DeMeester score is 62 (normal range being 14 or less) so the acid is basically free flowing at this point. I was prescribed carafate and Famotadine to take for 2 weeks until things settle down. Just curious about others’ experiences with this. Thank you 😊
Crest, secondary Sjogrens, Hashimotos. 57F.
I got a rash this past winter that gradually spread and worsened. Showed it to rheumatologist in April, he didn't have any answers, suggested a dermatologist. (Haven't gone yet) After that, symptoms waxed and waned, then got increasingly worse by June. Dawned on me that it might be the Plaquenil, so I stopped it four and a half weeks ago.Rash has very slowly improved.
What are my options? I know I need to ask the rheum, but I'm losing confidence in him. Is there anything else that could help with stiffness and joint pain? I'd like to know what options he might suggest, so I can read about them.
Currently I'm only taking ibuprofen (and levothyroxine for Hashimotos), but my PCP (she's a CNP) suggested trying naproxen instead.
Any advice? Oh, I tried Celebrex, which was good, but I started experiencing severe vertigo after taking it, so I stopped.
I can’t find any info on it. It happens sporadically, it’s kinda new, always on the joints of my fingers, one at a time. They’re very painful and take forever to heal.
Btw- my fingers used to be much skinner and not red, especially on the knuckles. My hands get incredibly inflamed during ovulation week 🤷🏻♀️ then slowly return to “normal” once I get my period.
TIA 🩵
Dr (Rhuem) called me last night after receiving these results. She said these labs as well as visit notes from my past appointments indicate scleroderma .
Symptoms: swollen stiff hands with shiny skin . Joint pain so bad at times it’s hard to get in and out of the car. I no longer have hair on my arms or face. I don’t sweat anymore and got super sick from heat exhaustion last time I went to the beach (and I’m a sun worshiper 😭) fatigue to the point I quit my job because 1 day of work would require 2 days of rest. My toenails are dark in color. I’m already taking plaquinil (sp?) she prescribed last month while waiting on results. She added a low dose steroid and gave an appt next month for follow up .
Anyone with similar labs and symptoms? What should I expect moving forward?
Any advice appreciated. Thanks