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Are my symptoms common in early scleroderma?


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#1 KTerrell

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Posted 25 May 2016 - 07:29 AM

Two years ago my hands turned smurf blue and It lasted for hours and therefore I went to the ER.

 

After numerous tests the doctor said I probably had Raynaud's. Prior to this episode I'd been having a lot of joint popping and pain in my hands and a rash would pop up on them from time to time. My pain seemed to subside the next year and it was a mild winter and I figured that was why; well, the pain is back and I hurt all the time.

 

My fingers swell and become stiff and painful and itchy. My skin is changing quickly and is losing turgor. I have little broken blood vessels all over my body and I am starting to notice that my complexion is also changing. My circulation also sucks. The veins in my feet and hands swell up and my feet turn blue after sitting for just minutes. My hands are shiny and my husband said that the most affected finger ( my right index) is starting to feel rubbery. My skin looks so old on the backs of my hands. And I just turned 36 last week. My most ailing issues are exhaustion and my hands popping and aching constantly.



#2 Joelf

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Posted 25 May 2016 - 08:34 AM

Hi KTerrell,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing worrying symptoms with your skin and hands.

 

Although the symptoms you describe could possibly relate to scleroderma, they could equally occur in many other conditions. Unfortunately, scleroderma is notoriously difficult to diagnose, not least because it can manifest itself in so many different ways and it affects most sufferers differently.

 

I have Raynaud's and have never had a rash with it, nor do my joints pop, although in the beginning my fingers were very swollen and painful.

 

As you are obviously concerned about your symptoms, I would suggest that you go back to your primary doctor and perhaps he can arrange for you to have more tests and a referral to a rheumatologist or scleroderma expert.

 

Kind regards,


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#3 Shelley Ensz

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Posted 25 May 2016 - 12:38 PM

Hi KTerrell,

 

Welcome to Sclero Forums. It's good that you are trying to get answers for your symptoms.

 

Generally speaking, whenever Raynaud's onsets in adulthood, it's my understanding that it is a good idea to request a referral to a rheumatologist for evaluation, to monitor or check for any underlying or associated disease. (Bear in mind, of course, that I'm not a doctor and have no medical training at all.)

 

Popping noises from joints are okay/normal and get worse as we age (provided you don't have an injury that is causing it, of course.) Rashes aren't so typical of scleroderma, but are perhaps more likely with other autoimmune diseases or allergies.  Skin changes should also be checked out, and you might also find a visit to a board certified dermatologist helpful (on top of a rheumatologist or scleroderma expert), because of the rash and changes you've noticed. Particularly screen them so you find one interested in skin diseases, since many specialize in beauty procedures.

 

Please keep in touch, and let us know how things go for you.

 

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Shelley Ensz
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#4 KTerrell

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Posted 26 May 2016 - 11:49 AM

I think the rash is broken blood vessels. So perhaps that isnt exactly a rash. I have all these tiny red broken blood vessels all over my body and it seems like I get more everyday.

#5 KTerrell

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Posted 26 May 2016 - 11:52 AM

I have posted some pictures here. I have some new broken blood vessels on my arms even today. It is hard to see all the tiny blood vessels because I am so freckled.



#6 Amanda Thorpe

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Posted 11 June 2016 - 05:51 AM

Hello KTyrell

How are you doing? Just read your message and wondered?

Take care.
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#7 Shelley Ensz

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Posted 11 June 2016 - 06:39 AM

Hi KTerrell,

 

It would probably be a good idea for you to consult a board certified dermatologist to diagnose your skin lesions. They could possibly be telangiectasia.

 

As it happens, scleroderma is only a very rare cause of telangiectasia, which can also be caused by things such as aging, alchoholism, pregnancy, rosacea, steroids, and other connective tissue diseases like dermatomyositis and lupus.

 

So, for a scleroderma diagnosis, telangiectasia are only "counted" when they occur on the hands and face, and when they are combined with other significant and specific symptoms of scleroderma (such as tight skin, pulmonary fibrosis, Raynaud's, etc.).  See Telangiectasia, and Diagnosis of Scleroderma.

 

The good news is that skin telangiectasia are harmless, and they can also be treated by dermatologists if they are bothersome or too noticeable. Since you report having recent adult onset of Raynaud's as well, it would be a good idea to be screened by a scleroderma expert to see if you have possible early scleroderma. 

 

But I must warn you that it is still an average of six years for scleroderma to be diagnosed (from the onset of symptoms in women; three for men), and even though there is an effort afoot to diagnose scleroderma earlier, it is very far from pervasive and the majority of doctors are likely unaware of this effort.  The old school method was to postpone the diagnosis for as long as possible, and only treat the symptoms as they arise, because it was considered to be an "adverse diagnosis".  So, it is still the norm to just be monitored periodically, until or if other significant symptoms of connective tissue diseases develop.

 

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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#8 Amanda Thorpe

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Posted 25 June 2016 - 10:52 AM

Hello KTerrell

My apologies for not replying to the email you sent until now.

There's not much I can add to what has already been said I'm afraid. Your best bet is to see a specialist as Shelley has suggested because as you know, scleroderma is so complicated and your symptoms have yet to declare for one specific disease.

Almost every one here knows how difficult it is to live with symptoms, when the cause is unknown.

Have a read of our pages and watch our videos about diagnosis, including the difficulty of achieving one and while you do, we are here to support you. Unfortunately we can't evaluate your symptoms or say whether or not you have scleroderma but we can do our best to say glad you're here!

Take care.
Amanda Thorpe
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