Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Rapid Onset in four days HELP!

rapid progression

  • Please log in to reply
3 replies to this topic

#1 Sarinda

Sarinda

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 07 June 2016 - 06:47 AM

This is my first post, I hope I do it right.  I started getting white spots and large white areas on my skin a week ago, and now in the last four days, my face forehead, cheeks and mouth have tightened and my neck is so tight swallowing is difficult.  I thought these symptoms took years to come on, but it has only been four days.  Today I am now noticing it is affecting my hands and the tightening is moving up to under my eyes.  My doctor diagnosed me with diffuse Scleroderma. Please let me know if anyone out there has tightening symptoms that have come on this fast.  Does anyone have a tight neck and swallowing problems?  If this is only the beginning - how bad is this going to get?  I also have had severe gastro motility issues for 2 years- but no skin issues until now.  I eat all of my meals out of a blender.  Small intestine does not absorb calories even though I eat 2700 a day still stuck at 94 pounds, and I combat SIBO.  



#2 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 07 June 2016 - 02:29 PM

Dear Sarinda,
Scleroderma affects everyone differently.   I have sudden onset diffuse and within a month of beginning I had skin hardening and swelling. I broke the straps on a new pair of shoes because my feet swelled so much. I had total body hardening within 6 months and still didn't have a diagnosis.

I wish there were crystal balls that would tell us what will happen. I am going through a flare right now where my skin is hardening again and I feel like I did I the beginning after 6 years of doing pretty well.

 

Are you seeing a scleroderma specialist?

I'm so saddened you are going through this. How do you manage to consume so many calories with a shake? I've lost weight and just don't feel like eating so I could use your help.

Best to you.

miocean


ISN Artist

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 07 June 2016 - 07:27 PM

Hi Sarinda,

Welcome to these forums!

I'm sorry to hear that you have been suffering with diffuse scleroderma and are experiencing such unpleasant symptoms.

As Miocean has said, scleroderma affects everyone differently, which makes it such a difficult diseaseto diagnose. Some of our members have experienced a rapid onset of symptoms such as skin hardening ( thankfully I have very little skin involvement, merely the tips of my fingers.)

Scleroderma can cause hyperpigmentation (darkening) and hypopigmention (lightening) of the skin, usually in the areas which have been affected by skin hardening and I've included a link to our medical page on Hyperpigmentation and Hypopigmentation which I hope you'll find helpful and informative.

As Miocean has advised, we do recommend that our members, if possible, consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise.

Now that you've found our forums and joined our community, please do keep posting and let us know how you're faring.

Kind regards

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 June 2016 - 05:38 AM

Hello Sandrina

The answer to your question is yes and who knows.

Over the nearly 10 years I have been involved with this site I have only ever heard of one other case of onset over days.

Certainty I had symptoms over weeks, as in one or two, but as I say, only one other case of daily onset have I heard of.

As for progression no one can say.

I also recommend seeing an expert as soon as possible.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)