Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Things seem to be happening so fast. Maybe this is not limited Sclero

  • Please log in to reply
6 replies to this topic

#1 Vanessa


    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 19 December 2009 - 01:28 AM

Hi All.

I seem to be moving really quickly and it is all a bit scary.

I began with pins and needles and numbness in mid May of this year and Raynaud's (which is now pretty bad) started in June.

Swelling in my hands started early July and they are now extremely swollen and uncomfortable.

Early September brought painful and burning knees and elbows and swollen painful feet and general tiredness and feeling of being unwell.

By October my hands had become very tight and difficult to use and I developed tenderness in my face.
In November the rheumatologist told me I have limited scleroderma CREST syndrome although my blood tests were mostly normal!

Since then another set of tests have been done as well as chest and hand x rays and I am waiting to hear back from UCL for an appointment as my general practitioner has now referred me to there.

But since seeing the rheumatologist my neck has become very tight between the jawline and collarbone and has gone darker in colour and the flesh has taken on a "cottage cheese" appearance and my face feels as though it has become thicker and spongy under the skin. My eyes are dry and I wake up with a dry mouth during the night.

The last couple of days my arms have become tighter and whilst all this skin over my whole body has been tender for a while with sort of "nervy" and stabbing pains now my inner thighs feel as if there is something more happening.

Also on thinking back to when I first became ill apart from being stressed at that time and having caught a couple of cold/ flu type things which was unusual for me I did get chilled a number of times. Has anyone else got this illness after become chilled more than usual?

I am a bit fed up with wondering what each new day will bring but trying to keep my spirits up - which in fairness I am managing.

Also terribly cold isn't it?


#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 19 December 2009 - 06:49 AM

Hi Vanessa,

It will be interesting to see what your consulting physician has to say. Is he a scleroderma expert?

I don't think I've ever read anything anywhere that would indicate chilling as a cause of any of the scleroderma spectrum of diseases. Of course I'm not a doctor, but I do doubt that a couple of isolated incidences of chilling would cause any harm at all. None of us who have Raynaud's like the cold very much ( great understatement!) and do need to pay attention to keeping affected areas warm, but even with Raynaud's, the underlying cause is not believed to be chilling, it is vascular in nature.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Vanessa


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 20 December 2009 - 12:54 AM

Sorry. I meant I am being referred to Royal Free hospital.

The doctor I am seeing just now at West Middlesex Hospital is a general rheumatologist.

#4 scampie5


    Silver Member

  • Members
  • PipPipPipPip
  • 157 posts

Posted 20 December 2009 - 02:32 AM

Hi Venassa I live very close to you in Tadworth will you get in touch with please thanks Lynn

#5 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,900 posts
  • Location:West Sussex

Posted 20 December 2009 - 03:08 AM

Hi Vanessa

I also have Limited Sclero but I understood that to mean that it related to the amount of skin involvement which in my case is really only the tips of my fingers (not counting the joint or lung problems or any other parts of my body it seems to have affected!!)

This is only what I have gleaned from The Royal Free; I am by no means an expert!! ;)

I'm not a long way from you; I live in West Sussex. :)
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)

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 20 December 2009 - 01:28 PM

Hello Vanessa

I am glad you're being referred to the Royal Free as it houses some of the UK's scleroderma experts as well as providing specialist nurses that you can phone when you need to.

As already touched upon the amount of skin involvement is used as the differential between limited or diffuse scleroderma. Typically those with limited have hardening of the skin over the hands and sometimes over forearms, feet and lower legs. Diffuse have hardening of the skin not only on the hands, forearms, feet and lower legs, but it also affects the skin on the upper arms, thighs and trunk, it is faster moving than limited. Both can effect the internal organs though.

Whilst you wait for your appointment you may find it helpful to have a look at the UK Scleroderma Society's booklet Understanding and Managing Sclerodera as it provides non hysterical information about scleroderma in non medical language. You may also find it helpful to have a look at ISN's bookletWhat in the World is Scleroderm? Again it's in non hysterical and non medical language.

Do keep us informed about your appointment and keep posting.
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)

#7 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 21 December 2009 - 06:06 AM

Hi Vanessa,

Upon reading your post, I was glad to see that you will be following up with an appointment at the Royal Free... It is obvious that your referring doctor is well aware of their expertise.
Let us know how you fare.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)