Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

CREST vs. Systemic


  • Please log in to reply
8 replies to this topic

#1 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 12 February 2010 - 04:15 AM

On the Internet I find contradictory information about CREST and Systemic scleroderma. Is there anybody with CREST and with elbow or knees skin involvement?

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 12 February 2010 - 11:23 AM

I have CREST but no elbow/knee involvement, other than arthritic pain, and swelling. Are you seeing tightness?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 erika

erika

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 106 posts

Posted 13 February 2010 - 06:49 AM

No skin tightness (yet) but the hard swelling on the left elbow (inside part) which lasts 2 years and the muscles around hurt and the swelling sometime burns invisibly. I feel some invisible burning on the knees as well with some minor soft swelling and of course arthritic pain. There is also a soft swelling on the lower back with tight tendons (not skin yet). Seems wait and see situation, but who can wait. I am not sure about this: scleroderma attacs muscles and tendons isn't it. Does it after atacking muscles and tendons attack the skin on the same place above. It seems to me that it is not a rule. I had bad pain in my cervical spine two years ago, my head hard to carry in certain positions. Seemed like one tendon has become shorter or stiffer. Now it has passed, no pain in the neck any more and I have strenghtened the tendon with my electrical stimulator. There are no signs on the skin. Just to add that my skin hardening session has just begun a month and half ago (fingertips, feet and some facelifting), so I am just trying to anticipate where it will happen.
Best regards
Erika

#4 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 14 February 2010 - 08:28 AM

You may find that this disease is very particular to the individual.

CREST is usually a systemic form of scleroderma (meaning that it can effect other organs than the skin). It is usually differentiated from "diffuse" scleroderma, which tends to come on rapidly and involves severe skin involvement.

Some view CREST as a dated term, since so many different forms seem to exist. My diagnosis was originally CREST, though it would be CRST, since I have no esophageal involvement. However, I have pulmonary involvement (thus it is systemic), as well as secondary Sjogren's syndrome.

Good Luck,

Craig

#5 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 16 February 2010 - 12:21 PM

Erika,
Craig is right, it's so hard to predict what is going to happen, because he varies from person to person. Did you make an appointment?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 erika

erika

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 106 posts

Posted 16 February 2010 - 09:08 PM

Pamela,

My appointment at rheumatologist was set to 26. Feb. I have arranged that 2 months ago (long waiting). In my town there are no private rheumatologists, they work only in hospitals and are overloaded with patients. I have agreed dermatologist for mid March. To cardiologist I will go privately these days. The others... I will see what the rheumatologist says (neurologist, x rays, pulmonologist, blood, physical...). I have been through all this last year but they did not even test sclero. They thought rheumatoid arthritis. And tested for all other kind of diseases (Borelia, Parvo, Toxo, Hepatitis etc.). All wrong. :sick2:

Erika

#7 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 02 March 2010 - 03:24 PM

Hi yes me too, my elbows are stiff worse than my knees!! If am on the phone the elbows ache like crazy, anytime they are in a holding something position! I have limited disease, if I've been sitting for a while I can't straighten my knees at first and when I get going only a minute or two am okay. How are you struggling?

#8 erika

erika

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 106 posts

Posted 03 March 2010 - 04:20 AM

Hi Lynnie, nice to meet you and your elbows and knees. I have so far only one critical elbow with hard swelling on inside side waiting to get hard skin, or hole, or whatever happens to those swellings. Sometimes it is stiff, sometimes hurts but I help myself with TENS electostimulator to relieve pain. When the pain subsides the swelling is not so hard any more. At night I have to put my arms around the pillow to keep circulation flow.
Take care

Erika

#9 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 06 March 2010 - 01:42 PM

Hi erika good to meet your bits too haha, yes, getting into a comfy position is a bother, plus I get *dead arm* on my sleep side,why does that happen with us? The worst thing is the tight stiff fingers hot one minute and cold the next, mine are like tiny sausages at times are yours? If so what do you do to calm them down? Take care x :emoticon-insomnia: :emoticon-insomnia: