i am living with scleroderma

[Cherelle16]

I am 16 and was diagnosed with scleroderma when i was 14, i am now 16 and struggling to write and play guitar etc as my hands get so painful, is this normal with the disease ?

[froggyjc]

unfortunately yes, there are many things that scleroderma does not allow us to do anymore. I used to love needlecrafts, but can no longer do them as the pain in my hands is unbearable at times. I wish i could tell you better things, but everyone is different and scleroderma affects us each differently. It is hard enough to learn to deal with this disease as an adult, I am sorry that you had to experience it at such a young age. Just remember that there will be good days and bad days but to live each day as fully as you can.

[Sienna]

Like froggyic said, our hands are one area where scleroderma can and usually does a lot of damage. My suggestion to you is that you keep exercising your hands by opening and closing your hands so that your fingers will not constrict. I have had Scleroderma for 36 years and right now I am doing well. Never give up,

always try and keep a positive attitude. Don't let this disease stop you from living your life to the fullest

[lifeforce]

I am really sorry you have to face this at this early time in your life. I have had the disease for 11 years and I am struggling to type this and waiting for my meds to kick in, but I am thankful. It is very scary especially at first. With most, their comes a time when everything will level off and even though everyday things can be tough you learn to live with it.I have learned that hormone levels aggrevate this disease and my dr. agreed, so you may want to talk to your dr. about this. Gook Luck!!

[mirandamae1971]

Cherelle16 I am heart broken that you are struggling with this disease at an age when you should be enjoying your life the most. Ill be praying for strength, peace and joy in your life. (I hope this does not offend anyone) As far as your hands go, I had many problems with my fingers wanting to curl and tighten when i was first diagnosed. What I did was stretch my fingers often, just as one would do stretches to make theirselves more limber in any other area. My hands are now almost able to open all the way and even though they still get inflamed and sore, I can do more and have less pain. also exercise you face. Here is a link that will instruct some exercises that will help.

scleroderma.org/medical/cop...

[Cherelle16]

thankyou all, it is good to know there is people who understand and thanks for all the advice, will definately take into consideration with the hand exercises.

[patsyb]

Sorry to hear of one so young suffering, exercise the fingers, perhaps wrist warmers would help you. I was told to keep the pulse points warm, i.e the wrist.

Hopefully they will find a cure in the near future.

Good luck

[Roamer]

Occupational Therapy made me some splints for my hands recently as four fingers are starting to curl. I wear them overnight and they're really working. I wake with nice straight fingers :-).

[Cherelle16]

thankyou everyone for answering !

[living-the-dream-ssc-ray]

Ah bless you Cherelle ! I was 24 when the scleroderma and raynauds challenge started ! Im now 38 ! Hang on in there and if you do not feel well to do or go somewhere it is ok for you not to push yourself! I pushed myself for 7 years and am now paying the price !

Keep your mind positive - some days on a more challenging day, I listen to dance music all day and bring Clubland to my living room ! as well as telling myself that I may feel better tomorrow !

When i was first diagnosed I was studying to be a barrister - well i achieved that dream, in that I qualified and practised as a barrister but am currently on a sabbatical (cant go out in cold) whilst getting some of the Scleroderma and Raynauds symptoms under control.

So still believe in your dreams and keep warm

[Roamer in reply to living-the-dream-ssc-ray]

A fellow lounge club dweller.....I am not alone! lol

[living-the-dream-ssc-ray in reply to Roamer]

Yay ! I like this ! I have a podium and everything

[Roamer in reply to living-the-dream-ssc-ray]

Living the dream!!