April 3, 2013 at 6:52 pm #431
Is it possible to have both EDS and scleroderma? Does anyone on the forum have both? I have classical EDS, but I also have all the signs and symptoms of scleroderma. It is mostly on the back of my hands going from the wrist up to the first knuckle. At this point, the skin on the back of my hands is thick and leathery. The color varies; sometimes red; sometimes bluish but the skin always looks different. I still occasionally have red and puffy and painful flareups.April 6, 2013 at 7:23 pm #3597Henry40Participant
I assume you already have a diagnosis of EDS but not Scleroderma? Not sure what stage you are at with getting tests for Scleroderma. Have you seen your PCP or GP to get an autoimmune screen, in particular ANA? Firstly nothing is impossible, and I guess it would be possible to have both. It is a slightly odd combination as in classical EDS you tend to be stretchy due to a lack of collagen, but in scleroderma thickened skin due to abnormal collagen deposition. Is it safe to say you are thin and stretchy in some areas, say elbows, neck, but thickened over the forearms and hands? If you haven’t already maybe ask your GP for a rheumatology referral.
From my point of view, I don’t have a diagnosis, but have POTS/dysautonomic symptoms due to something underlying. I recently had a positive ANA test, negative for lupus, but with a few symptoms I thought suggestive of Scleroderma. I had a few issues with swallowing as well as thickened red patches over knuckles and elements of Raynauds. Being male though I thought I wasn’t sure. I had a repeat ANA 3 weeks ago and it was negative, though it notoriously fluctuates. Just in the last few days those red patches have returned and the raynauds to a lesser extent. So I’m still not sure but I have my rheumatology appointment in may. I don’t have a diagnosis of EDS either, though I am quite stretchy (not particularly hyper mobile). So less further along than you in a way but feel can identify with your current dilemma a bit. Good luck, keep us posted because if nothing else it is an unusual combination..April 7, 2013 at 3:53 pm #3604
Hi Henry 40. Yes, I am officially diagnosed with classical EDS. I haven’t seen my GP yet, but I think I could go directly to my rheumatologist. Once you are a client, you can just go and sign in. I can show him my hands. Yes, it is a very odd combination. My skin is so stretchy, except for the backs of my hands and the tops of my feet. My knuckles bleed a lot because when I stretch the skin too far it splits open.
I am officially diagnosed with Raynaud’s phenomenon as well. I showed my rheumatologist pictures. Well, a lot of people have Raynaud’s and scleroderma which are kind of opposite, so maybe it is possible to have EDS and scleroderma. I always thought that the distended veins, burning up in my hands and painful red swelling was due to dysautonomia. More specifically, due to the blood vessels being over dilated. But now that the skin on my hands is turning leathery… I really think it is scleroderma. I just hope it is not systemic. When my veins distend like crazy , It is all over my entire body. However the blood does pool in my hands and my feet, which I believe is causing the scleroderma.
Have you seen a geneticist for EDS testing? My blood work actually came back negative for the genes, so I was diagnosed based on clinical presentation, as there are many genes that they are still unaware of. If you haven’t been tested yet for EDS, I suggest that you do. I have to say, that was my first major diagnosis, And now I am being taken seriously because I have EDS. And of course, I figured it out on my own and requested the genetic testing. Make sure you see a geneticist that is willing to Diagnose on clinical presentation alone. I heard that there are some out there that will not do so, and that is so wrong!
Funny you mentioned lupus is well. I had all the signs and symptoms of that, but my rheumatologist says I don’t have it. But I do wonder… Good luck Henry. I will let you know what comes out of this scleroderma issue. I’d attach some pics of my hands for you, but the website is not allowing me to attach pictures from my iPad for some reason.
MJApril 7, 2013 at 5:20 pm #3611Henry40Participant
It’s a complicated trio MJ that’s for sure EDS, Scleroderma, Raynauds. The first two can cause dysautonomia or POTS which dilate vessels more than they should, vessels are lax anyway due to the abnormalities of EDS. Yet Raynauds constricts causing the colour changes. It is certainly not a straight forward process. If I am upright for say a few minutes my hands become red and mottled (pooling) yet my hands remain cold. I don’t get the blue fingers though.
Other than skin thickening do you get any other features of CREST? Calcium deposits, oesophageal problems, tightness in hands? I guess when you contact the rheumatologist they will do some specific blood tests, not sure if you had them before? Fingers crossed it would be the limited type if you had it. All the autoimmune diseases are pretty horrid. What about dermatomyositis? You can get red thickened patches on the hand with that?
I became unwell about 4 months ago, quite suddenly really, though signs were there before. Lots of symptoms. Due to swallowing issues and nausea I lost a lot of weight through jan/feb. Initially I thought the weight loss was causing me to have stretchy skin, and to have developed a turkey neck! I mean I am not massively stretchy like some with EDS you see, but enough to make me wonder. In view of my continued symptoms, POTS, I’m searching for the reason why. Is it autoimmune, or EDS, or both, or something else like ME/CFS. I have had an MRI of the brain 2 months ago, yes I was poorly enough for the GP to refer me, and although it was reported as normal there are some subtle changes that fits in with Dr Diana’s theories. It’s getting a professional to agree with me now that I am back in the UK, that is going to be a challenge!
No, I have not seen a geneticist yet regarding the EDS. Its something I will be looking into. Do you have a family history of EDS? It seems to be obvious in some families the genetic link, not so much so in others. I know they look at family members as part of the clinical assessment. As far as I am aware nobody has it in my immediate family. It is possible for it to be passed by a parent without them having the disease I think. It’s inherited in a dominant fashion though. Trouble is if I had a negative result, no family history, a diagnosis is unlikely, even with stretchy skin!
Are you in the UK?April 7, 2013 at 5:51 pm #3612
You may want to look at Vasovagal syncope Because of the redness and pooling when you are upright. I recently had a consult with an electrophysiologist, which is a cardiologist that specializes in dysautonomia, and he observed me standing for about 10 minutes. I wanted to sit; it was very difficult. He could see my hands turning red and the veins started to distend after 10 minutes. And that was nothing! If he could see what happens when I get crazy veins-OMG! REALLY crazy. He believes that I have Vasovagal Syncope but that I have just found coping mechanisms so that I do not pass out. I still have to go for testing. AND, the reason he is taking me seriously is because I have EDS.
Yes, I have some features of CREST. No problems swallowing, but if I touch my esophagus in the middle where the collarbones meet…OMG! So much pain just from a very light touch. I have always wondered what that was about. Thanks-I will look into the dermatomyositis. I think I remember reading something about it, but I haven’t had the time to dig right in.
There is no obvious family history of EDS and my family, however, I do believe that my mother has it. She just never had any complications. She never developed pots and she was always able to function just fine. But she did always have hives from eating certain foods and she did have a little bit of vein distention, but nothing like mine.
Did a stressful event bring on your symptoms suddenly? My pots came on very suddenly after a severely stressful event. And then about a decade later, I became completely unable to function because of the vein distention. This also came on suddenly and it was because I was taking Dexedrine, for a sleeping disorder. Dexedrine is speed! I also believe there are other types of EDS out there that they are unaware of. I say this because I Developed the stretchy skin and the crazy veins after taking Dexedrine. Yet I have the typical EDS scarring, from some childhood injuries. And there are people out there that are EDSish, but do not have the stretchy skin. I believe medication can alter genes and cause EDS, especially if there is already something there underlying. Dr. Diana believes that the virus caused her problems, but I believe it could have been the medication she took for the virus – I just haven’t had a chance to chat with her about it yet.
Turkey neck LOL! I have that a little bit too, and it’s funny because I am so thin. Looks like I used to be fat and nothing could be further from the truth. I have always been thin. I am not in the UK, I am in Canada.
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