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Questions about early skin symptoms

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#1 serendipitydoodah



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Posted 22 March 2011 - 02:40 PM

Although this is my first post, I've been lurking for a couple of months since my diagnosis. I have to say that I'm impressed with the many wonderful people on this site and I'm so glad I found you!

My diagnosis came after Raynaud's, joint swelling, and an ANA 1:1280 with a centromere pattern. I've seen a rheumatologist 1 1/2 times (I walked out in the middle of my second appointment - but that's a story for another post). I've reported muscle aches, extreme fatigue, periodic facial numbness, and swollen and red hands to my rheumatologist and primary care doctor but they're treating me like I'm over-reacting to my diagnosis and, I don't know... making things up?? I'm going to look for a second opinion soon, but I'm enjoying a break from doctors after an initial round of systemic testing (which looked good, by the way). I also plan to see a dermatologist soon.

Now to get to the actual point of this post LOL! I truly think that I'm developing some skin involvement, but no one else seems to be able to see it. The weirdest part is that some days it's very obvious to me and other days it doesn't seem noticeable. I have observed that when it's very noticeable it seems to be in the cold weather and/or stressful days. The type of skin involvement I'm talking about is pigmentation changes, shiny patches, and some thick and dimpled areas. I want to know if anyone has had a similar experience with early skin involvement - where it seems to be visible one day and not the next. I'm asking this in order to keep my sanity. The way the doctors are treating me is beginning to make me question myself. In my opinion, I've had some skin symptoms for a very long time but just didn't recognize them for what they were. (How could I??) It seems to me that a disease that has been rather dormant for so many years (in my opinion, anyway) is hitting me like a ton of bricks - like I woke up a sleeping giant!

Anyway, thanks for reading this. I look forward to getting to know you all and sharing our stories.


#2 Jeannie McClelland

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Posted 22 March 2011 - 04:41 PM

Hi Lesley,

I'm glad you stopped lurking and joined! Welcome to the Forums. I'm not sure we can help you save your sanity though, most of us seem to be a little bonkers at times. :lol:

I'm really not the best person to comment on whether what you are observing is early skin thickening or not (my disease manifestations are internal), but I do believe you are seeing something, whatever the cause. If you read enough of our stories, you'll notice most of us see things before the doctors do. Hopefully some of the folks with skin thickening will chime in with what it was like for them in the early stages of thickening.

As frustrating as going to the doctors can be, it really is important to do it and to report any changes and/or new symptoms. Sometimes it may seem like they either disbelieve what we are telling them or aren't reacting as we think they should, but a good rheumatologist, preferably one who is a scleroderma expert once you have a confirmed diagnosis, is honestly your best friend. Well, you know what I mean. :) I'm an impatient patient. I don't want hemming and hawing, forget wait and see. If I had my way, all doctors would know everything immediately and have a pill that would fix it. And that pill would be cheap and have no side effects. (I live in such a nice dream world~)

Keep posting, OK? Let us know what you hear from the doctors - I hope it will all be good news.
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#3 Amanda Thorpe

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Posted 22 March 2011 - 05:36 PM

Hello Lesley

Welcome to the forums you lurker you! We're glad you're here and chose to share your experience with us, can't wait to here about why you walked out on the rheumatologist! :lol:

I have diffuse scleroderma and skin involvement was my first symptom, internal involvement came at year 3, I'm now in year 4. My skin involvement started with a waxy patch of skin on my shin that grew and then appeared on the other leg. The changes did not vary from day to day, once a change appeared it stayed. I also had what looked like giant cellulite on my arms before the skin tightened. Pigment changes came after skin tightening and faded about year 2.

The thing is everyone's experience of scleroderma is different and there is no such thing as a textbook case. What you need is a rheumatologist who is a scleroderma expert and stay with this site.

Take care and keep posting.
Amanda Thorpe
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#4 Joelf


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Posted 22 March 2011 - 05:54 PM

Hi Lesley,

Welcome to these forums!

Sadly some of our other members have been made to feel that they're making things up and over reacting by their doctors and rheumatologists but as Jeannie has said, it is important to be treated by a Scleroderma specialist who should be able to deal with the complexities of this very bizarre disease.

I can't give you very much advice about skin thickening as, like Jeannie, my skin involvement is minimal (only the tips of my fingers which are shiny); however the skin on my hands does sometimes become red and like you I suffer with Raynaud's whereby my fingers are white. I'm sure some of our other members, like Amanda, with more skin thickening, will be able to answer your query more fully.

However I would say that I did feel unwell for at least 18 months (probably longer!) with joint pains, swollen fingers, carpal tunnel syndrome, a general feeling of tiredness and lethargy and finally a dry cough and shortage of breath before I was diagnosed so it is important to take note of your instinctive feeling that something is not right.

I'm very glad that you've stopped 'lurking' and joined our community and I'm looking forward to reading your posts and getting to know you.

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#5 uknlv18


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Posted 22 March 2011 - 06:20 PM

Hi Lesley

Hail and well met!! Decided to be different with the welcome hehe.

I have a patch on my wrist that involves the skin thickening, and some days it is hardly noticeable, other than touch. It feels like elephant skin... not normal skin... well probably not that hard, but close! Once a month it 'flares' up and becomes red and shiny and in my case swells up! When it started it was just a tiny patch of skin that I noticed felt different.

As everyone has said already, a Scleroderma Specialist makes all the difference. I went for 5 years with varying symptoms, attributed to all sorts of things from my weight to my age. But I am now being treated by a Sclero doctor and all these symptoms are well known to them and they do not treat me like a hypochondriac anymore!

Good luck with getting to the right specialist and welcome again. You will find this a nice and friendly place to be!


#6 enjoytheride


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Posted 23 March 2011 - 02:45 AM

I have trouble with my fingers swelling until they look like sausages- it comes and goes quite a lot too. But so far nothing else- no bumpy skin. This has being going on for about three years without progressing.

I have gone through the non-acting doctor syndrome too. It's hard to get around but you certainly sound like you know yourself pretty well and should never feel bad about insisting on their attention.

I went through about 5 years of worsening symptoms and trips to the doctor before I decided to get firmer about figuring out what was wrong. After that I have had an improvement each year due to medication and other treatment. I went from being unable to walk more than 30 feet without having to sit down a rest to being able to walk a hour and a half in the morning after farm chores then still have a bit of energy left to garden a bit in the afternoon.

Don't let the fear of "bothering" the doctor keep you from getting the help you need.

#7 serendipitydoodah



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Posted 23 March 2011 - 02:25 PM

Thank you for the warm welcome and for the feedback and advice! It feels great to get a little reassurance. Sounds like a sclero expert is something I should look into. I looked at the link on the ISN home page and found 2 references for my state for sclero experts.

Back to work now... more posts to come now that I'm not a lurker! ;)


#8 kris52770


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Posted 23 March 2011 - 05:55 PM

Hi Lesley,

Welcome!!!! I am new as well. I just got mine diagnosed about two weeks ago and everyone has been so great to talk too. I too spent months seeking answers and doctors basically ignoring me or making me think I was crazy. Luckily or maybe not so luckily a dermatologist figured mine out because of the early skin signs. I definitely noticed skin changes and then they seemed to be less noticeable. My first patch was on the shin and then I noticed loss of pigmenation on my face in a couple of spots. The dermatologist actually found some on my back as well. Seemed like as soon as that started happening the rest came quickly. Red swollen hands, Raynauds on my legs...hands and feet very shiny as well...

I have gotten great advice from the very caring people on this forum. Who better to ask than the actual people who have it. I have located a sclero specialist and will be using them as well as my regular doctor. The skin changes are real....trust me you are not losing your mind. Hope you are able to get in with a sclero doctor and please join us often. This site has seriously helped with my mental state. Good luck and we are here if you need us.

All the best,


#9 serendipitydoodah



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Posted 04 April 2011 - 11:47 PM

Well, the spotted look has decided to settle in and make itself at home. There's definitely something going on with my skin. I have a dermatologist appointment on May 1st and I think it will be good to know for sure if what I'm seeing on my skin is related to scleroderma. If it is, then I will probably ask for another round of internal tests to be run in 6 months or so. The skin changes are widespread and numerous so it worries me a little that things might be changing internally as well.