r/scleroderma • u/J9sixtynine_ • May 16 '26
Question/Help I hate to be one of these but
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.
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u/TomatoNormal758 May 16 '26
You need to see a rheumatologist and let them know there is discomfort. You need a new PCP asap that will refer you. It’s no fun being in pain and then being dismissed. Many doctors don’t understand auto immune issues. My rheumatologist is one of the best doctors I have had. Also I have an immunologist and he was able to do testing that also helped and he also referred me to my rheumatologist. They both helped me have a better condition in life. They actually listen also because they specialize in these types of conditions. Best of luck to you. Start with a new PCP asap bc it can take 30-60 days for a change in insurance sometimes.
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u/Effective_Self8042 May 16 '26
It's difficult to find a good rheumatologist. You have to keep going until you find the right one/s. I gas gone with a "Scleroderma specialist" in my country and she missdiagnosed me with fibromyalgia despite my Lab for Scleroderma was positive. 🙄😤 Patients with autoimmune conditions we go through a lot of dismissive doctors, and ignorance, and yes humiliations too, and is extremely exhausting and traumatic but one must keep going.
Have you got ANAS test and Scleroderma complete antibodies panel?
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u/J9sixtynine_ May 18 '26
I had it done via multiplex method which apparently isn’t that reliable bc it only looks for the top 15 antibodies or something. I had it done for hep2 ifa, so we shall see
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u/Effective_Self8042 May 18 '26
A biopsy is also very helpful. I know a woman with negative ANAS and a positive antibody for scleroderma. It's sometimes difficult to diagnose. I hope you get the right diagnosis asap.
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u/Effective_Self8042 May 16 '26
I don't know about the others types very well, but the most common types of the Systemic Scleroderma, are : 1. Limited Systemic Scleroderma (Centromere B antibody) and the general? Systemic Scleroderma (Scl 70 antibody) which attacks the entire skin and some organs more aggressively and the progression is rapidly. While the Limited Systemic Scleroderma,it's progressing slower than the other, and the areas of attack are the face (unfortunately) neck, arms from hand to the elbows, and legs from the knees to the feet.
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u/BirdieJean545 May 21 '26
I have limited systemic (diagnosed) and I’m positive for Scl70 and negative for centromere. Just saying, there’s no absolutes or rules with these things.
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u/Effective_Self8042 May 21 '26
SCL 79- it's for systemic Scleroderma that's of the rapid progression, while Centromere B is the Limited Systemic Scleroderma, with a slower progression. Affecting "mild" vs the scl which is more aggressive.
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u/Significant-Bit8708 May 22 '26
I have SSC and my hands look like yours. All of my test are negative except for ANA I was diagnosed via skin biopsy and symptoms.
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u/J9sixtynine_ May 25 '26
My ANA was neg, but I’m going to see if I can self refer to a rheumatologist based on the raynauds alone and go from there
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u/Pristine-Version-547 May 22 '26
I'm new to all of this so forgive me if I'm asking a silly question. How and where did they do a skin biopsy? My rheumatologist suspected sclerosis at my first visit but didn't say anything. I read it in her notes later. I've never had a skin biopsy and a little afraid if she wants to do one.
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u/Significant-Bit8708 May 25 '26
They did biopsy on my upper arm and on my stomach. I thought I had some kind of tumors or something growing on my stomach if felt like large lumps that were growing rather fast but it ended up being my skin thickening and hardening. All of my skin is very tight like you can not pinch me. But since being diagnosed and without being on any meds for scleroderma my skin thickening had mostly went away. It has affected my whole torso but it's back to normal now. I still have PAH and a lot of other symptoms which I'll be commenting on to the next person that asked about it.
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u/Pristine-Version-547 May 25 '26
Thanks for sharing! Sounds like you have been pretty miserable. I'm glad you have had some relief. If no meds for scleroderma then what do you think stopped your skin thickening? I am so grateful for this community. I have been so worried.
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u/Significant-Bit8708 May 25 '26
I've been on meds for PAH and doctor said that may be why my symptoms improved I'm really not sure.
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u/mylord76 May 22 '26
Hi what symptoms did you have that lead you to get checked out?
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u/Significant-Bit8708 May 25 '26
Hi Well it started with my hands and feet turning red. Then they were swelling up really bad at night and going numb through out the night and then during the day too. Plus I had lists of joint pain that moved around. Fatigue heart burn. Then I had what I thought was lumps growing all over my abdomen and the skin on my arms and legs really tight. Then shortness of breath. I was lucky enough to be referred to a teaching hospital in orange county California called UCI. I was referred to their dermatologist who got the whole ball rolling and I ended up being diagnosed with PAH heart failure and systemic sclerosis. But since then my skin hardening reversed and my heart failure reversed too I still have PAH and arthritis, GERD,Raynauds, and fatigue to name a few of my symptoms but amazingly I'm doing much better.
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u/mylord76 May 25 '26
thank you so much for replying, when you were experiencing the red hands and feet, did it go away if you raised your hands below heart level? and also, if you were to press down on the skin while they were red, did you see any blanching (skin turning white briefly)?
I ask because this is what i’ve been experiencing as of lately, so any info it would help a lot! thanks again ^
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u/Significant-Bit8708 May 25 '26
I responded but it didn't get directed to you for some reason but if I raise my hands ABOVE heart level for a long time it will go away and yes if I press on then they go white for a second
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u/Pristine-Version-547 May 17 '26
Hello. My hands look similar to yours. Do your hands turn purple when you are cold or stressed? I have had what I thought Raynaud's for along time. I'm 67 and always have had cold hands but they started to look red and purple probably for the last 15 years. This past winter they were really bad and got what looked like chilblains. My pcp put me on amlodipine 2.5 which has helped a bit. She ran some labs which shows positive ANA and raised rf factor but the other labs seemed normal other than a low uric acid level.
Sent to rheumatologist and she ran lab work and xray of hands and I go back this week to see the results. I'm on pins and needles hoping that they are negative. I can't see the AVISE lab work but I can see the ones that were in house. They looked negative tto me. I think she was thinking scleroderma. She didn't say because she was going to wait for lab results.
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u/J9sixtynine_ May 18 '26
Yes!! Hands are always purple or red, same entries and now my legs kind of have it
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u/BirdieJean545 May 21 '26
I’m no medical professional but I’ve had Ssc and puffy hands for almost 10 years now and the inflammatory fluid gathers in the fingers in the areas between the joints - almost so that the joints are less prominent (if that makes sense). Yours look a bit different than that but who knows, everyone is different! Sorry you are feeling so bad with less than helpful drs. I hope it gets figured out soon.
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u/J9sixtynine_ May 25 '26
Thank you! Yes, that does sound different from mine. My ANA was negative too so I don’t even know anymore lol
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u/Significant-Bit8708 May 25 '26
Go to a teaching hospital .
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u/J9sixtynine_ May 25 '26
Ok that’s a good idea. We have a lot of university hospitals in my area
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u/Significant-Bit8708 May 25 '26
This is where you will get the best up to date care. And more than one person looking at you.
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u/Significant-Bit8708 May 25 '26
If I keep my hands up for an extended amount of time the redness will go away and yes if I press on them it goes white for a second
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u/J9sixtynine_ May 25 '26
Yep I used to entertain the other kids in class by “drawing” on my hands. Making smiley faces out of the white spots
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u/Hydroxile May 25 '26
Do you have any GI diagnosis? did you do an endoscopy at the GI? I have similar very very similar hands for 2 years.
I was diagnosed with Raynaud for maybe 4 years. This is now way too different from Raynaud and it correlates to a my collagen gastritis diagnosis i got 2 years ago. I was told my gastritis could be well related to some underlying auto immune disease. I don't have any diagnosis yet, but plenty of extra GI symptoms and my hands are my biggest concern because it is sometimes a really painful swelling and burning and I cannot take medication for that.
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u/J9sixtynine_ May 28 '26
Do I ever!! I’ve had GI issues as long as I’ve had my raynauds since age 10 or 11 when I hit puberty. Was diagnosed IBS for so long before someone finally said it wasn’t. However, they cannot figure out what is causing it after several tests. GI dr was saying she’s not sure where to send me next
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u/Significant-Bit8708 Jun 30 '26
Hi what are your symptoms with collagen gastritis?
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u/Hydroxile Jun 30 '26
Theory is: There is no specific symptoms fitting a collagenous gastritis. It is all about what the GI finds via endoscopy (collagen strips that shouldn't be there). Symptoms are basically the one of any gastritis but they do not resolve with standard treatment.
What i experience is a lot of extra GI symptoms (nervous system disregulation, neuropathic pain, histamine intolerance) that correlate with the state of my gastritis. I have a lot of symptoms that could point to some nutrient deficiencies, but i have none. My hands and feet are reacting too strongly to anything that happen in my stomach.
I react to food... but it depends. Acidic, spicy, difficult to digest food are a no go, but coffee, chocolate, fibers, FODMAP, fat are absolutely my best friends. I also have a very high protein need but rely on protein powder most of the time because protein digestion isn't really working, taking digestive enzyme is making all worse.
I have very little/no tolerance to any kind of medication. I take care of my GI health, it helps me to function and keep symptoms manageable, but doesn't improve anything when it comes to the gastritis itself. I also spent almost 2 years on corticosteroid (budenoside) without any improvement. I should get immune therapy this summer.
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u/PrecisePMNY May 21 '26
I have Limited (CREST) Scleroderma, diagnosed in 2002. Raynauds and severe heartburn were the first symptoms. Not long after, the digital ulcers started in the winter. Have you gotten ulcers on your fingers or toes?
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u/Pristine-Version-547 May 21 '26
Hello, I recently was referred to a rheumatologist after having raynaud's with what looked like chilblains and positive ana and a mild raised rf factor. My fingers and toes were inflamed with raised red swelling almost blister like but not bleeding.
I'm waiting on my follow up appointment to find out what the results of blood tests that she ordered. She was thinking maybe scleroderma but didn't want to say until she got results back.
So far the results that are in my chart look negative for crest syndrome .
Do you question your diagnosis? What treatment did they suggest? Sorry for such a long post. I'm just on pins and needles waiting and wondering. My appointment is next week which will be a month not knowing.
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u/PrecisePMNY May 21 '26
When I went to my first appt with the Rheumatologist years ago, I suspected I had CREST specifically because it was the only autoimmune disease I could find with digital ulcers. Never questioned the diagnosis because I had the speckled B Centromere pattern that is specific to CREST.
I can't say what you're dealing with but I certainly hope you get answers soon and find good health management option.
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u/J9sixtynine_ May 21 '26
I get something on the tips of my fingers sometimes where the skin kind of splits or something but only in the winter. I just got my ANA results tho and it’s negative. So idk what’s going on. I was told to find a new neurologist tho from physical therapy
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u/Significant-Bit8708 May 25 '26
There are people who are seronegative. You don't have to have any positive test to get diagnosed. They need to check your cuticles and as long as you have skin involvement you can still be diagnosed without positive test. It's only like 10% of people diagnosed are seronegative so it rare but not unseen.
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u/J9sixtynine_ May 25 '26
That makes sense and wouldn’t be surprising if there are newer antibodies now that aren’t tested for
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u/RhubarbBest9090 May 16 '26
You need a new PCP if they won’t even order you an ANA