Jump to content


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


Photo

Sclerodactyly Therapy


  • Please log in to reply
5 replies to this topic

#1 chuckleberry

chuckleberry

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 22 December 2009 - 04:56 AM

Does anyone know of any effective therapy for sclerodactyly hands is available in UK? I have been contacting Physio and Osteopath professional bodies for advice but thought one of you might know.

I hope you all have a good holiday,

Chuckleberry

#2 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 22 December 2009 - 08:51 AM

Hi Chuckleberry,

I don't have sclerodactyly as such, although the fingers on my right hand are curling inwards slightly. I was referred to the rheumatology physios at the hospital and was shown a number of hand exercises to perform, including some using small yellow and red therabands (which are rather like large elastic bands). I was also advised to dip my hands in parafin wax(I bought a parafin wax hand/foot bath). I think that some of the exercises in conjunction with use of parafin wax would be useful for someone with sclerodactyly. Have you asked your rheumatologist or general practitioner for a referral to the hospital physios? I would imagine that they would be able to provide you with a suitable exercise regime.

Lizzie

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 23 December 2009 - 06:43 AM

Hello Chuckleberry

I also have sclerodactyly hands with my right hand being worse than my left...go figure because I am right handed! I was referred to a physiotherapist at my local hospital and I had a paraffin bath. Unfortunately I was too ill to make it to hospital on a regular basis, mind you all they did was use the paraffin bath, which I had at home, some stretching exercises and nighttime splints. I couldn't use the splints either as they were too painful and rendered me too disabled. At the time I could hardly walk and just couldn't cope with the thought of not being able to use my hands whilst the splints were on. I was not able to get the splints on/off on my own so I couldn't even go to the bathroom at night without help.

I did use the paraffin bath for my hands and feet very regularly at first and found it helpful, not that it made my hands or feet more mobile but it was very soothing. However, for some strange reason my hands and feet became over sensitive and I couldn't stand the heat so stopped using it.

My understanding, as a non medical layperson, of sclerodactyly is that the therapy and treatments are best done before the the fingers curl up and thereafter it's about adapting. Have a read of our page about sclerodactyly.

I'm into my 3rd year with sclero and it's a case of wait and see how much mobility, if any, I get back once and if the skin softens. I do know of people who had improvements to their hand function once the skin softened although they still can't straighten their fingers completely.

As Lizzie has already suggested getting a referral from your rheumatologist or general practitioner may be the way to go because at least you know they'll be reputable.

Let us know how you get on 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)

#4 Joelf

Joelf

    Star Ruby Member

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

Posted 24 December 2009 - 10:08 AM

Hi Chuckleberry

When I was referred to The Royal Free they gave me a handy (pardon the pun! ;) ) little pamphlet describing all manner of hand exercises to do and also suggested I purchase a hot wax hand bath which I did.

I do try to do the exercises and wax my hands on a regular basis but what with that and doing my pelvic floor exercises (don't ask!! :rolleyes: ) I do find all these things are rather time consuming and I do have a life as well!! ;) :lol:

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)


#5 chuckleberry

chuckleberry

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 02 January 2010 - 08:54 AM

Thanks all of you for your replies.I have been to see the Physio at the Norfolk and Norwich but they hadn't heard of Scleroderma!I have a wax bath that I use twice a week.I've managed to get a list of Physios and Osteopaths from their
respective professional bodies so I'm going to ring them{the ones in Norwich] and ask them if they have any experience/
success with sclerodactyly fingers and as suggested ask my Rheumatolgist for a referral.The trouble is at our last meeting
he said 'I hate dealing with people with Scleroderma,there's nothing I can do for them' !!!
Happy New Year Everyone

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 02 January 2010 - 11:20 AM

Hello Chuckleberry

I am sure your rheumatologist will make a referral for you. I am surprised by their comment that nothing can be done for people with scleroderma because there are many effective treatments for the symptoms, there is just no cure. I am not sure I would want to be treated by such a rheumatologist.

If you do find some therapy effective for sclerodactyly please make sure you share it with us.

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)