Jump to content


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


Photo

Scleroderma/ Raynaud's and Sjogren's disease.


  • Please log in to reply
7 replies to this topic

#1 bettyboop7

bettyboop7

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 13 May 2012 - 01:28 PM

HI I'm Jean; I'm 50yrs old and suffer from Scleroderma/Raynaud's and Sjorgen's.
I have not met anyone with this condition and find it hard to explain my condition to people; it will be great to have a chance to speak to other people with this condition. I live in Durham and I am a mother to 6 children and nanna to 3 grandsons.

I have ulcers on my fingers and I am having an operation on Thursday to try and straighten my middle finger a little; has anyone else had this operation. It is being done with nerve blocking drugs; I must admit I am scared. I was diagnosed in 1996 with scleroderma and it has continued to get worse; it is great to be able to come on here and know that other people know about the condition. It's a great site and I'm sure I will be logging in on a regular basis.
I live in Durham North Yorkshire England.
thanks Jean x

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 13 May 2012 - 02:39 PM

Hello Jean

Welcome to the forums! I am afraid this disease can get worse which you know, I also have systemic scleroderma and Raynaud's as well, diagnosed in 2007. We have so much information on site about systemic scleroderma, Raynaud's and Sjogren's, there is not as yet a video about Sjogren's but there soon will be, it's on my to do list.

The Scleroderma Society has local groups that meet around the country and you might want to consider attending one, there are 2 covering Yorkshire.

Are you seeing a scleroderma expert? If not we recommend that you are, we being people with scleroderma as we find we fare better in the long run under the care of one, the Royal Free is a centre of excellence for scleroderma based in London.

I don't have any experience of the operation you're having, I only heard of a woman who had all fingers straightened (she had sclerodactyly like me) under general anesthetic as they had to break all 10 fingers and then set them straight. Although they then looked normal she had no more use from them than prior to the operation.

My understanding is that the issue with sclerodactyly is that it's the tight skin than causes the contractures (shortening of the muscle or joint) and will continue until the skin has softened, if it softens. The other issue is that if a joint is contracted for a long period of time it doesn't necessarily work again just because it becomes free to. Make sense? Bear in mind all of this is based on my experience of someone with scleroderma and I am not a medical professional by any means!

I hope for you the operation is a success and we look forward to seeing more of you.

Take care.

Edited by debonair susie, 16 May 2012 - 09:30 AM.
understandingh 'h' to 'g' and added 't' to 'join'

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)

#3 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 13 May 2012 - 05:29 PM

Hello Jean,

Welcome to the forums, I hope you keep reading and posting because it will be of the most enormous help to you.

I have CREST and hardly any skin involvement, as well I avoided having ulcers on my hands by the skin of my teeth. They were just starting when I was given a different medication which made all the difference. I was very lucky. My Raynauds now seems to have disappeared so I am doubly lucky.

Regarding your surgery on your finger. I have had surgery on my left hand to repair a nerve after an unfortunately placed cut!! Apart from the 2 day wait in the Hand ward while other people with horrendous injuries were dealt with it was nothing to worry about. I expect your experience will be similar. The surgeons are not there to hurt you or frighten you, but rather to keep you as relaxed as possible. They will give you a medication which will make you forget all your fears although you will be awake. The anaesthetic block in your arm is just like the dentist. Everything is numb and heavy but that is all. You will no doubt have that arm screened off from your sight so you can't see or feel what they are doing and the nurses are there with you to chat and make sure you are comfortable.

I couldn't use my hand for a week or two but fortunately in my case it was my left hand. You will need help with most tasks for a few days but just relax and have a holiday from your chores. Hopefully your family will step in and help you.

Best wishes,
Let us know how it goes.
Judyt

#4 anotherday

anotherday

    Bronze Member

  • Members
  • PipPip
  • 12 posts
  • Location:Brasil

Posted 13 May 2012 - 06:35 PM

Hi, Jean!
I have had CREST scleroderma since I was 25 years old, sometimes Raynaud drives me crazy, I have had 5 ulcers since last year, even living in a warm city. Be calm, this surgery is simple and you will be great. :)
Welcome to the forums, I feel so good since I joined here and met so many nice people here who can understand what we feel.

Judyt, what are you using for Raynaud?

Amanda, what should I do to see a scleroderma expert in UK? I live in north of Brasil and here we don't have any scleroderma experts.

Hugs to all.
Ro

#5 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 13 May 2012 - 07:40 PM

Hi Ro,
A number of years ago I was started on Amlodipine, which not only decreased my Raynaud attacks but also stopped my migraines. Now, recently I have realised that I am not getting any Raynaud attacks at all, and in fact sometimes I even feel warm!! at first I took it 2 or 3 times a day in winter and now just once a day all year round.

I really think it is my age, I am 68 now and have had Raynauds since I was 22, and I am inclined to think that the opinion about some Scleroderma symptoms disappearing with age could be what has helped me.

Amanda also suffers from migraine and has found Amlodipine to be her answer, but I haven't heard of anybody else "growing out" of Raynauds.

Best wishes
Judyt

#6 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 14 May 2012 - 12:52 AM

Hi Jean,

A warm welcome to these friendly and informative forums!

I'm sorry to hear that you're suffering with Scleroderma, Raynaud's and Sjogren's; it certainly is a most bizarre disease and I agree that it's quite difficult to explain it to the average person, particularly as it manifests itself in so many different ways.

I have Limited Scleroderma with lung involvement and like you I suffer with Raynaud's, although thankfully I haven't developed Sjogren's (yet!). I've not experienced the operation you mention, although I did have the decompression operations for Bi-lateral Carpal Tunnel syndrome, another problem caused by Scleroderma. It was relatively painless (the worst thing was getting my wedding ring off as my fingers were so swollen!!) and the surgeon who operated on my left hand was a lovely chap who insisted on chatting away about his daughter's wedding (I think!) throughout the operation. ( I couldn't really hear him as he was wearing a mask so just tried to make suitable comments whenever he paused for breath! ;)).

Now that you've found our forums and joined our community I do hope that you'll continue posting and do let us know how you get on with your operation on Thursday, won't you?

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)


#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 14 May 2012 - 06:48 AM

Hello Ro

I am afraid I have no idea how you would be able to/if you would be able to see a scleroderma expert here in this country even if you went through the expense of coming here and staying here.

All I can suggest is that you make contact with the Royal Free, a centre of excellence for scleroderma in London, to see if it's possible. Their details are:

Professor Chris Denton
Centre for Rheumatology
UCL Medical School
Department of Medicine
Royal Free Hospital Campus
Rowland Hill Street
London
NW3 2PF
Tel: 0207 794 0432
Fax: 0207 435 0143

I don't know the international dialing code for Brasil.

Let me know how you get on and also have a look at our disability resources.

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)

#8 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 16 May 2012 - 09:40 AM

Hello Jean,

It is SO wonderful to meet you! It is bitter/sweet to meet people from all over the world who are plagued by diseases which so many of us have in common.

Though I don't have experience with the surgery you "had" today, I can appreciate the fear of what to expect during the surgery, recovery and finally, will it be of benefit.

Because I am posting this the day of your surgery, I just wanted to let you know you are in my thoughts (and likely in the thoughts of ALL who read and/or posted on your thread. I hope that by this time, you are relieved the surgery is behind you and nothing but good results are to become of it.

Sending many :emoticon-hug: s to you across the "pond".
Your new friend and Fellow Sclerodermian....
Special Hugs,

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