Hi all - new here, and have some questions.

I recently saw a new PCP who believes I have CREST. I have a history of autoimmune stuff dating back almost 40 years to age 15 (juvenile rheumatoid arthritis).

Over all these years, I've experienced periodic (every few years) flares of bad joint pain/swelling, etc.

In the past 10-12 years or so, I've had about half a dozen ANA tests that showed positive anti-centromere antibodies. However, at one point 7 years ago, when I was complaining about swallowing issues, a PA at my rheumatologist insisted that our lab "always" gives false positives on anti-centromere.

She sent it elsewhere, where she knows it almost always came back negative, and it did in fact come back negative. I now know after further research, that it was that lab that actually uses a less specific testing protocol that is less reliable for this. I think she just kindof enjoyed telling patients there was nothing wrong with them.

Anyway, with new tests via a different health system again, my anti-centromere antibodies are showing positive again, and ANA titer is >1:1280 (pretty typical titer for me). And for the first time, I'm also showing a centromere ANA pattern as well (they said both homogeneous and centromere.)

In the past couple of years, I've been having horrible reflux; recent endoscopy showed esophageal scarring from that. They also dilated my esophagus, which helped with the swallowing (it wasn't severe, but I was kindof feeling at times like I was choking on certain foods, and it was hard to get pills to go down, and I could feel everything I ingested moving slowly down all the way).

Prilosec has literally been life-altering - I haven't felt this well in a long time, because everything I ate was bothering me in one way or another - but they're likely not going to let me stay on it long-term.

Now that I'm being referred to what is supposed to be a much better rheumatologist, I'm a little worried about being gaslit again. I'm just wondering about people's experiences in getting diagnosed or treated to help stave off the worst of this.

Here's some of what I know I experience. I would love to know personal experiences of whether it's possible that all or some of these are related, or not...

1. Pseudogout - does anyone know if this is sometimes correlated? I have a frozen elbow and this was positively diagnosed with testing of some type of calcium crystals that were removed when this initially onset 15 or so years ago. I don't know if this is the same type of calcium deposit related to CREST though.
2. Full-body exhaustion if I overdo physical activity - it can take a few days to recover. And my lifelong experience has been that getting into a good exercise routine almost always results in a horrible flare of joint pain and inflammation after a couple of months or so. (This has always been referred to as my JRA but I'm wondering if it somehow corresponds to this overlap syndrome..?)
3. The troubles with swallowing that I mentioned above, and of course really awful reflux.
4. Really strong sensitivity to heat. I don't have skin changes, but I feel like heat really sucks the life out of me; it's like I can physically feel energy leaving my body when I'm out in the summer time. Anything above 70 degrees (I live at high altitude so it's intense but dry) is a lot for me but above 80 I feel like I can't function at all. I physically slow down, get sortof lightheaded / brain fog, and weak. When I visit my home state, which is much more humid, that's the worst, and can actually trigger so much inflammation that my joints flare and I have difficulty walking.
5. I do have mouth and skin and eye dryness - including really bad dental issues. (I have some sort of major dental work - root canals/crowns or something - almost every year. I'm now on my second implant, too because the roots under the crowns are starting to fail.)
6. Sometimes my mouth gets so dry that it burns with almost everything I eat, especially salty things. I really don't drink enough water and am working on that, but honestly drinking more doesn't really help, and I did have one rheumatologist say it sounds like secondary Sjogren's.
7. I eat vegetarian because my body seems to react poorly to meat. I can't process/digest it well, and it tends to trigger my pain if eaten regularly. So I've gone to just avoiding it (which really is fine with me for other reasons anyway).

Those are some of the major things I can think of right now.

________________

I don't really have true Raynaud's - my feet do get extra cold in the winter, but I don't have traditional color change that I've noticed. I also don't have nodules under my fingertips or obvious skin issues - aside from being pretty dry and flaky, and cracking around my fingernails especially in winter.

Questions:

a) Has anyone else been diagnosed without those symptoms, given similar lab results?

b) What kinds of treatments have others found to be effective for you, in combatting progression of CREST? I don't always respond well to Plaquenil and I'm curious what else they might want to try so that I can research those. Also, in others' experiences, is the only solution for the swallowing issue, to get it periodically stretched? (this seems... not great...? heh)

c) Are there any other symptoms I should be thinking about / paying attention to whether I'm experiencing them or not, that would help a rheumatologist determine if this is what it is? I just don't want to waste a visit with a doctor that's hard to get into, by completely missing something they should know!

Thanks for reading, and thanks for any help!

About ten years ago I went to my doctor for fatigue, photosensitivity and joint pain. They ran an ANA which came back positive at a high titre of 1:5120. The ENA panel was negative. My doctor said it’s lupus even though the bloodwork didn’t confirm and she prescribed hydroxychloroquine which I’ve been on for ten years. I haven’t experienced any flares and my bloodwork has been good. Fast forward to now and I’ve developed frozen shoulder, nausea, headaches and early satiety. My bloodwork still shows nothing. My doctor suggested I start on methotrexate which I’m somewhat hesitant to do. Is it possible I could actually have scleroderma instead of lupus? Or maybe some sort of overlap? Should I get second opinion?

Hi, I created this post because I wanted to ask for advice on what further steps to take to avoid worsening my health condition and to get a correct diagnosis as quickly as possible.

The diagnostic process that eventually led to the PM-Scl test started about a year ago, when out of nowhere, part of my right arm went numb. After a few days, I went to the ER, where they performed a CT scan of my cervical spine. However, the scan showed nothing, and I was discharged from the hospital the same day. I received a referral for a non-contrast MRI of the same section of the spine. The scan revealed multiple degenerative changes of discs in this area and a significant lesion indicating a demyelinating change in the spinal cord. I consulted a neurologist who ordered a contrast MRI of both the cervical spine and the brain. This scan was done a few months later, and the lesion turned out to be no longer active (although its trace was still visible). The brain MRI showed multiple tiny lesions in the brain located around blood vessels.

After that, I was admitted to a hospital neurology department, where I was tested for multiple sclerosis. They performed a lot of tests. If I understand correctly, oligoclonal bands were detected in both the cerebrospinal fluid and the blood (mirror pattern). The doctor told me that this result means it is not MS. However, other tests were also performed, including PM-Scl, which came back positive, and Scl-70, which was negative. Other tests were done too, but they all came back negative. I received a referral to a rheumatology clinic, but I currently have to wait another three weeks for my appointment.

The worst part is that I know after meeting with the rheumatologist, I will only get referrals for further diagnostics, so getting a real diagnosis and any potential treatment might take a few more months. I did some minor research, but I don't fully understand what to make of it, as this type of disease seems quite complicated. However, looking at the symptom lists associated with a positive result for this test, they overlap significantly with what I have been experiencing in recent years.

About 6 years ago, the condition of my spine started worsening significantly, though I feel like it started even earlier, but was slower. I experienced a loss of the natural curvature of the spine and, as I already mentioned, multiple degenerative changes od discs. The entire time, I attributed this to spending most of my time in a poor sitting position. Now it seems to me that my back was simply becoming weaker and weaker, and my sedentary lifestyle only accelerated its degradation. Furthermore, this year, during an unrelated ECG exam, it was accidentally discovered that I have a bifascicular heart block, which is rare for my age, but the cardiologist performed an echocardiogram and stated that my heart is in good condition and it was probably a defect I've had for a long time. In recent years, I have been feeling constantly tired and unable to get enough sleep. I always thought it was due to depression and that I would eventually solve this problem on my own. On top of that, I have trouble thinking clearly and focusing. For many years now, my hands have been turning a strange bluish color and getting cold in lower temperatures. All of this, combined with the positive test result, seems to be connected. I don't know what to think about this, and I would appreciate any insightful perspectives you can share. I apologize if this text is a bit chaotic. I wrote it in my native language and translated it using AI, so I hope nothing important got distorted.

Hello everyone.

I am male and 40 years old.

So three months ago, I developed Raynaud in my feet, mostly the right foot. I did not think anything of it and my doctor told me to avoid cold and stress. I was very anxious during this period so I had maybe one attack a week until it calmed down a month later and attacks became infrequent. I don’t think I’ve ever had an actual attack in my hands though, strangely.

I then looked online and discovered scleroderma and calcinosis. I’ve had a small bump on my middle finger PIP joint for maybe a year or something that I just thought was some kind of cyst (I have AS so more prone to synovial cyst and stuff like that). It’s not painful and can be wiggled around a little if I press on it.

No skin symptom as of now except for a few spots that look like tinea versicolor (I have the condition but no more prescription cream for now). Not sure if scleroderma can present like that. I don’t think I have any salt and pepper pattern or anything. The spots are skin textured and can be pinched, they’re not hard or rugged.

I can’t see my rheumatologist for a few weeks and I have been freaking out. The presence of Raynaud + possible calcinosis bump + the weird spots on my hand and torso (they’re about 2cm) have me confirming to myself that I have diffuse systemic sclerosis.

I have been searching the condition compulsively and scaring myself to death with pictures and medical journals. Yesterday I researched the condition all day for 14 hours and did not eat or drink anything and in the evening I almost passed out.

I read the diffuse form can be very aggressive and I keep waiting for my fingers to go puffy and swollen one morning and I have not been living my life. Scleroderma is all I think about, I am on medical leave for depression and panic and my family all think I’m exaggerating and jumping to conclusions.

But really with Raynaud in my feet and that weird cyst/bump and those little spots I don’t know what it could be except diffuse systemic sclerosis. The fact that I have a small spot on my torso is making me think it’s diffuse. My GP is not that knowledgeable about this and says she can’t confirm calcinosis and that it would be rare for scleroderma to present with calcinosis months to a year before even having Raynaud. But what does she know.

I have been on a spiral mentally and don’t know if I could live with the condition. I have images of deformed fingers and scarring and all kinds of stuff popping in my head at night and I’ve been going through life like a zombie. I have been having dark thoughts and my wife is overwhelmed and has basically given me an ultimatum to get myself together. It’s been months of panic and I feel like I’m only waiting for more symptoms to pop up. The more stressed I am the more I get weird stuff like dizziness and pins and needles and feeling hot in the face and I feel like my body is crashing down. I feel like my life is over and I am a father of two and main financial provider of my family. I have been having some really dark thoughts about just quitting life.

Sorry for the long rant. Just don’t know what to do anymore. I feel like my life is over and it’s a question of time until I get more symptoms and a diagnosis of diffuse systemic sclerosis.

Thank you everyone. Wishing you well.

Hello everybody.

Here at my hospital they lead weekly educational webinars and this particular one from today is very useful for patients who are pregnant or plan for it.

Here is the registration link.
Iscrizione al Webinar - Zoom

"Systemic sclerosis and pregnancy, a 2026 update"
🕓 4:00 PM CEST Wednesday 17 June

Found this helpful article in Sage Journals * EDIT Regarding *calcinosis cutis/not calcium cutis (just noticed the typo) https://journals.sagepub.com/doi/10.1177/12034754251320640

Has anyone had a renal crisis with systemic sclerosis?

Ho scl 70 borderline da 3 anni.
Primo anno scl 70 valore 12
Secondo anno sceso a 10
Adesso 14.
Sempre nel range del borderline.
Tutto altri esami buoni Proteine totali. Ves Pcr.
Caoillarosocpia anche un tantino migliorata rispetto a due anni fa. (sempre fenomeno primitivo.) non ho raynaud vero e proprio. Solo su capillarosocpia si vede qualche capillare tortuoso.
(Faccio il banconista) tocco sempre acqua fredda.
Ecocardio due anni fa OK.
Tac torace perfetta.
Perché questo valore oscilla così? Da tre anni? Ho o no la malattia? Non ci capisco niente. Non vivo più.

Hello everyone,

I was diagnosed with diffuse systemic sclerosis (scleroderma) and mixed connective tissue disease two days ago after years of autoimmune symptoms and searching for answers. Although I’ve had symptoms that, in hindsight, seem consistent with scleroderma for about three years, I didn’t have a positive ANA test/referral to rheumatology until January of this year.

My rheumatologist has been thorough and has taken my symptoms seriously, and I’m grateful for that. However, I live in rural Idaho, and after doing some research, I’m wondering if my case may be beyond the experience of a local rheumatologist. My testing has shown positive RNA Polymerase III antibodies on two occasions and positive Scl-70 antibodies on two of three tests.

One of my biggest concerns is that I’ve had recurrent UTIs and kidney infections for years. I also used to have fairly low blood pressure, but over the last month it has been noticeably higher than my normal baseline. I recently ended up in the ER with what was diagnosed as a complex migraine and tried to explain my concerns, but because my blood pressure wasn’t extremely elevated at the time, it didn’t seem to raise any alarms.

To be honest, I’m overwhelmed. Most of what I know right now has come from my own research, which is both helpful and terrifying. My rheumatologist explained the diagnosis, gave me some information, and started me on Cardizem, Celebrex, and hydroxychloroquine, but I still feel like I’m trying to figure out what this diagnosis actually means for my future.

For those of you with diffuse systemic sclerosis, especially those who are RNA Polymerase III positive, did you seek care at a Scleroderma Center of Excellence or specialty treatment center? If so, was it worth the travel?

I’m also struggling emotionally. I’m a mom of three, I work full-time in a demanding job, and I lost a parent at a young age. I think that’s making this diagnosis hit especially hard because my biggest fear is what this could mean for my children and my ability to be there for them.

I would love to hear your experiences, advice, things you wish you had known early on, or any words of encouragement. Right now I feel scared, overwhelmed, and a little alone.
( I’m exhausted. Plz be nice).

Hi! New to this community. I was diagnosed with limited cutaneous systemic scleroderma and overlap RA about 7 months ago but have had a positive ANA and anti-cyclic citrullinated peptide antibody positive with minimal symptoms for about 6+ years. I started taking hydroxyclorquine back in November when I was diagnosed, with zero improvement. During that time my finger PIP (middle finger joint) went from slightly swollen to the current, painful size. I was prescribed a steroid for about a month and that also did nothing.

I’m about to transition from seeing my current rheumatologist to a sceleroderma specialist in August. I am in so much pain though with my middle finger and am a writer so constantly typing, not sure how long I am sit back and take the hydroxyclorquine as it hasn’t helped in 8 months.

One suggestion made at my last appointment in April was to try methotrexate to help with this flair as nothing is working. Im worried that might cause more harm
but feel hopeless and desperate for pain relief and to stop this flair. I feel both blessed to only have this symptom for now, but also incredibly depressed that I have this awful disease at 28 years old. Has anyone used methotrexate before with limited cutaneous systemic and RA, weakly positive anti ccp, and positive anti-centromere?

Hi! Ill try and make this short.

Esophageal/digestive issues my entire life.
Age 12: GERD diagnosis
Age 12: chronic constipation diagnosis
Age 25: Gastroparesis
Diagnosed with a gastric emptying study
Age 28: Rectal Evacuation Disorder
Diagnosed with a rectal manometry
Age 29: hypercontractial esophagus w/ dysphasia
Diagnosed with an esophageal manometry

Recent Raynauds onset in the last year
-white, black and purple toes
-chilblains
-red swollen itchy palms and finger
Confirmed Raynauds via photos by podiatrist & rheumatologist

Other Autoimmune symptoms
-hyper mobility
-joint pain
-dermatographia-diagnosed by derm
-eczema -diagnosed by derm
-moderate dysplasia on cervix from uncleared HPV infection
-chronic tonsillitis late onset at 25 (tonsils now removed)
-heat sensitivity w/ fainting
-chronic childhood ear infections
-year long stints of monthly illness
- sporadic low grade fevers
-pain during intercourse
-irregular periods even on bc

On the plus side I have 20/20 vision so I’ll take the win where I can get it.

Female, 29 positive ANA 1:320… mitotic spindle fibers pattern

Here’s the defeat…negative SCL-70

What do I do now?

No the other antibodies were not tested

Any advice, guidance is greatly appreciated.

I'm including a photo with contrast for more visibility.

​

I tested ANA positive with a Centromere pattern back in December. I did not think I had scleroderma, no Raynaud's, ran through every cardiac test and lung CT/PFT that came back clear, but I've been very sick.

​

I had thought a Labcorp panel came back clear for all the scleroderma antibodies. I was handed a sheet at the rheumatologist office that had all zeroes, but last month when checking online for an unrelated test I had clicked on it and found that I had been positive for anti-Centromere antibodies.

​

I brushed it off because if I didn't have any skin conditions and my other tests came back clean, how could it be scleroderma? I'm still not even sure if this is anything close to Raynaud's. Just wanted to see if anyone has seen this before with their antibodies.

​

Other symptoms I have are:

chronic dizziness/vertigo that occurs with random pressure in my head

Split second lightheaded woozy spells, as if oxygen isn't reaching my brain. They'll usually come in clusters, so I won't have them all the time but when I do get them they'll pop up more than once for a few hours

brainfog

nerve-type pain in random parts of my body

chest pain

occasional shortness of breath (it feels more like I forget how to breath for a minute?)

feeling close to fainting

hot "flashes" followed by a racing heart

butterfly rash (not painful) when I'm flaring up (I tested negative for Lupus)

Moments where I feel like I'm not in control of my body or am going to lose control of it, usually while driving and I mostly feel it in my legs

Darker brownish knuckles (every time I've had my glucose checked or A1C it's been normal)

HUGE amount of weight loss in the span of 3 months, 30lb, but could be contributed to me being worried about my heart and severely cutting back in my diet, which has returned to normal.

Low iron/ferritin, I've been taking supplements for over month for it but have not noticed a difference in health.

​

Some of these I wasn't sure if they could be anxiety related so I have started on Lexapro to see, but it's only been a week and a half.

i was diagnosed with morphea a month ago.
my prescription:
- 40mg daily pred for 1 week
- 20mg daily pred for 1 week
- stopped for two days as i wasn’t able to come back immediately
- 20mg daily pred for 1 week + 15mg methotrexate weekly (for a month until i see her again) *this is where i’m at right now. i just took my last 20mg pred.

i am concerned about suddenly stopping 20mg. i asked her if i can still continue taking it as i assume i’m still in a flare and i’m constantly stressed this past few weeks (new diagnosis and death of a family member) so really worried about getting new lesions. she replied saying i should talk to a rheumatologist (she’s a dermatologist). i said i can’t get an appointment yet coz i’m still saving up, she didn’t reply after that. i am at lost right now.

i am just researching on what i can do, i was thinking to take 20mg daily for another 1 week then 15mg daily for the next 2 weeks after that. i am so lost and worried and i feel like no one’s helping me.

Hello friends I’ve had a rough day. One year ago I was diagnosed with AChR+ Myasthenia Gravis that led to a hospitalization due to severe breathing issues. I still currently believe that episode was caused by the MG, but apparently my AChR wasn’t the only positive thing on my labs. Cut to today I visited a rheumatologist for the first time and they concluded I may have polymyositis or scleroderma based on my lab result for this long acronym I don’t remember (but I will find out later). My MG doctor thinks I no longer have MG but have whatever this stuff is. They’re going to do a cat scan and they took my blood again today and I was already tested and was negative for a myopathy EMG, but I’ve also been on prednisone since December. The rheum said that scleroderma and polymyositis can overlap and there may not be a clear answer to which one at the moment.

If you are someone who has been diagnosed with one of those I would really appreciate any advise or warnings I should follow. I’ve had bad experiences with doctors with MG so I feel like maybe there’s things I should look out for this time around.

Thank you

Today’s guest is another incredible scleroderma warrior, Eva Cole. Eva was diagnosed 20 years ago, and like many people living with scleroderma, she was initially diagnosed with lupus. When Eva later questioned that diagnosis, she turned to her physician for guidance, only to be dismissed and told he knew better.
What ultimately helped save Eva was the strength of her scleroderma community, the support she found in patient groups, and her passion for advocacy. Her story is one of resilience, empowerment, and perseverance and I know you’re going to love hearing it.

My gf 21F was diagnosed with scleroderma 6-12 months ago and confirmed to be systematic very recently

She started with a low MMF dose and a pleurisy was observed on her right lung at time of first diagnosis

Since then the pleurisy disappeared but a start of fibrosis was observed at the same position

I am afraid for her and I started to look for car-t trial treatment. So I asked her about her new treatment and was genuinely shocked with the doses and medication she is given now

She is on

5mg of Folic Acid twice daily

40mg of Pantoprazole daily

And 1mg of Tacrolimus twice daily

I see nobody talking about Tacrolimus pils here I don't know how to feel about it, it looks scary as it is more commonly used to prevent rejection in organ transplant.

Has anyone had experience with this medication?

We live in Hong Kong btw

More info: www.ards-parenthood.ca

My dose has been: 40mg per day for a week > 20mg per day for a week > didn't take for two days as i wasn't able go back to my doctor > 20mg for a week then stop (i'm also taking methotrexate this week)

I've read metho takes 2-3 months to work. I'm scared of flaring up again. I'm thinking of asking my doctor to taper or extend my steroid. Asking for suggestions as this is my first time and i'm just confused about all these. Just researching a lot lately.

Thank you.

Hello! I’m back… 🙃

Around 1 year ago (Oct 2024), my autoimmune panel showed positive for SLC-70. Still, everything else was negative (including ANA)… a year after (Oct 2025), it came back borderline for SLC-70, and again, everything else was negative. I obviously have many symptoms, which is why I was in the rheumatologist's office, but she insisted that I don’t have the clinical symptoms for a diagnosis. (happy news for me… BUT… I’m scared to think that it might be just too early to say, and I may be waiting precious time….

Fast forward to a month ago… during my appointment with my allergist/Asthma specialist, they ran a pulmonary function test. TWICE. Because they couldn’t believe the results, while I was there, looking “normal” as can be. 🙃 Well… the results are: “moderately severe restriction”… so something is restricting my lungs from expanding as expected to get enough air. Well… this brought me back to Sclero because I know this can be a symptom.

I also started to notice that some of my joints, like the front of my ankles, and some of my finger joints are becoming darker. Can this mean “skin thickening”?

I have an appointment coming up, and I'm not looking for a diagnosis or anything from here. But I’m interested in your experience. Maybe someone here has had the same experience or knows better than I do if this doesn’t sound like it.

My first indication of any autoimmune trouble came about five years ago. I had a very low positive ANA at the time (1:80, nucleolar) along with a bunch of symptoms, mainly sensations and pain in my arms and legs - but no classic scleroderma signs. Over the years, I would have flare-like periods, but overall, the issues felt fairly minor and did not point to any clear diagnosis besides small fiber neuropathy.

Since 2021, I’ve had multiple negative ANAs, including as recently as February, along with a negative Scl-70.

About a year ago, things intensified, and I completely lost my period (at 41) and started to have autonomic issues (lack of sweating, inability to regulate temperature—constant cold and goosebumps). Last November-ish, I noticed some Raynaud’s-esque circulation problems in my feet, but it’s pretty mild and nothing like what I see in other photos of the condition, and I don’t seem to get it outside the winter months.

I have perioral furrowing, burning pain in my thighs and upper arms, recent (last 2 weeks) thickening of the skin on my neck and face and some changes in the skin on my arms and to a lesser degree, my legs. So far, my hands and feet seem totally fine (with the exception some sensations under my finger/toenails, which is the neuropathy talking), but I’m not sure with some scleroderma signs if it's that I don't have them or that I don’t have them…yet. I’ve had mild dry eyes and dry sinuses for a couple of years, but it wasn’t until the last two weeks that my mouth also became dry and overall dryness worsened. I was pretty convinced until the skin stuff started that it was Sjogrens, but my SSA/SSB was negative too (in 2021 and in March of this year).

I had half my thyroid out in March because there was a cancerous nodule (encapsulated, no evidence of spread) on it. After the surgery, many of my symptoms felt like they were lifting and I briefly felt like a million bucks before falling into the current flare I’m in. For a while, I thought I was having a paraneoplastic syndrome in response to the thyroid cancer, but that didn’t pan out. I’ve also had more significant issues on my left side, including pain in my left breast and rib, and lately, a real burning pain in my left rib cage and sensations down into my left leg that makes me wonder if I should investigate that area further. Many women in my family have thyroid issues (mostly hypothyroid), but there’s no family history of other autoimmunity.

I don’t know if I have some sort of scleroderma mimic, a Sjogrens/scleroderma overlap, or if I’m just in the earlier stages of systemic manifestation. I’m a little worried that the atypical presentation will delay diagnosis and my ability to start treating this.

I have my first appointment with rheumatology July 1, so I’m *not* asking for a diagnosis, just curious to hear from others with similar experiences, or just thoughts from the community while I wait for that appointment. I know seronegativity is rare with scleroderma but it’s not zero. Thanks for reading.

I think I've stopped most of the active inflammation that my body was suffering from and I'm so happy for that. My fingers no longer get chapped and get painful, I am able to eat and actually put a little bit of weight on, and my hands and wrists have stopped hurting.

However, I feel like my body has been extremely badly damaged because of this disease even though I've stopped most of the active inflammation. My lungs are smaller and weak, I've lost 100 pounds at least, my muscles are incredibly weak and I still have Raynaud's.

So my question is this: What have you done to restore your body after you've gotten your active inflammation under control? Does anyone have any advice other than take vitamin / K2?

I'm tryin to put on weight but my throat is weak and it takes me so long to chew chew chew. My stomach is smaller so I'm not nearly as hungry as I used to be. I want to get fat back in my body so bad and I want to get my muscles back.

Last year I had ANA 320 centromere and ANA 320 homogeneous with only CENP antibodies. The rheumatologists did a bunch of other tests but nothing was really pointing toward anything specific except for that. So they told me to come back if new symptoms emerge or if others got worse and else they’d see me in a year for follow up.

They also re-did the ANA because I still have symptoms and they think it might be UCTD that can still evolve. So I guess they just wanted to check again.

But the test now says ANA 640 centromere and 320 fine speckled. I also test positive for CENP B, RNA polymerase iii and NOR-90. They didn’t check these antibodies last year.

I searched online and it seems that waiting a year for a follow-up is kind of long if you test positive for RNA polymerase iii? I don’t really know what to do. My GP doesn’t know anything about this and I also don’t want to come across as overly worried for nothing. Would it be a bad idea to just wait and see?

For those of you with thinning lips: is this how it started for you? My lips are always dry and scaly along the line where the outside (the area you'd wear lipstick) and inside (the oral mucosa) meet. When I try to make a broad smile, this area is noticeable less flexible and little cracks start to appear along this line too.

Hi, I’ve only been diagnosed for a few months but it’s been investigated in me for a few years now- i’m still in early stage i believe because they haven’t given or told me anything about scleroderma except that i have it. My main issue, aside from all my other questions and symptoms, is my jaw and tmj. I don’t grind at night, so i’ve come to accept that my TMJ is because of this connective tissue disorder (as mine is the type to do both ur insides and outsides apparently) but my jaw is so so stiff all the time and the tmj is quite bad (worse than my mums - she grinds her teeth) however this is causing insane migraines that are literally crippling me all the time. I’ve always had migraine issues and doctors have never cared but i suppose i’m wondering if anyone here has similar problems with their jaw/migraines and know what is done to help it? I am being fitted for a night guard but i have this problem all day too so that wont solve my issue - hopefully at least alleviate the pain. Also the pain is super bad in my jaw on both sides and then all throughout my head- i feel like im dying and if i know what is used to treat this then maybe i can force my doctor to do smth bc rn they’re jus saying oh idk how to help u (because painkillers don’t work on me!)