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Louise45

Crest

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Hi Louise,

 

Welcome to these forums!

 

I'm sorry to hear that you are suffering with unpleasant symptoms due to CREST. The CREST term has fallen into disuse by experts, who were frustrated because many doctors were just diagnosing CREST and failing to identify further, whether it was Limited or Diffuse Scleroderma. I've included a link to our medical page to give you some more information about it.

 

I've also included a link to our CREST Patient and Caregiver Stories, which I hope you'll find helpful and interesting.

 

"Normal" is not an adjective I would use to describe scleroderma, as the symptoms can vary so much between sufferers. Unfortunately, the symptoms you describe can relate to the disease; we recommend that our members, if possible consult a listed scleroderma expert, in order to receive the best treatment and advice.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Louise - My symptoms are exactly the same as yours, along with a few others.  Everyone says these symptoms have nothing to do with Scleroderma, but I know that it is the Sclero that is causing these symptoms.

 

My feeling of faintness seems to come along with blurred vision in one of my eyes, which I believe to be linked to blood supply.

 

My stomach also feels sore and bloated.  This seems quite common for this disease and I suspect may be linked to blood supply to the digestive system.

 

Add to this, Raynauds, aching joints and cramps which are very painful.  All of these symptoms seem to worsen in cold weather.

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Hi Louise,

 

Are you feeling any better than how you were doing a few weeks ago?

 

With scleroderma, even though a thousand symptoms are "normal" for it, so to speak, we all still need to see our doctor anytime a new or worsening symptom sprouts.  I've found that very often, it is something quickly and easily treated, and it might not be due to scleroderma at all.

 

This is where a great primary care doctor comes in handy, for you to see between visits to a scleroderma expert. Please keep in touch, and let us know if you are feeling any better yet. I'm sending good thoughts your way!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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