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Swelling of fingers? Is this Sclerodactyly?


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#1 marsha

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Posted 24 September 2011 - 12:44 PM

I was diagnosed with the beginning of sclerodactyly this summer and my question is this:-

My hands, especially my right hand fingers and top of hand, are extremely sore and stiff; I can't open them, I can't close them and they ache like nobody's buisness. Is this "typical" of sclerodactyly?

#2 Joelf

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Posted 24 September 2011 - 02:28 PM

Hi Marsha,

I'm sorry to hear that you've been diagnosed with Sclerodactyly. I've included the link for you to give you more information and you'll also be able to view Amanda's super video which describes the condition in more detail.

I think that the symptoms you're experiencing certainly do seem to occur with Sclerodactyly; however, as usual with this bizarre disease, no two sets of symptoms are the same. I also had very swollen, sausage-like fingers and my consultant did in the beginning suspect that I had the beginnings of Sclerodactyly although thankfully due to early intervention and medication it never progressed beyond that stage and although stiff and sometimes painful, my hands have not taken on the tight and curled appearance of full blown Sclerodactyly.

If possible it is helpful to exercise and move your fingers to try and keep them as mobile as you can; I've included links to Sclerodactyly Treatments: Physical and Occupational Therapy and also some Hand exercises
which I hope you will find beneficial.

I do hope that you will be able to get the aching in your hands under control, and that you will soon be feeling more comfortable.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 24 September 2011 - 04:08 PM

Hello Marsha

Sclerodactyly begins with swelling that can last for weeks, months or even years, it can be intermittent and is often worse in the morning. Out of interest after being diagnosed with the beginning of sclerodactyly were you recommended any physiotherapy etc? It has worked well for some people and is worth a try I guess as the only thing you have to loose is more bent fingers.

I am typing this post with 2 fingers only as the rest of the crooked bunch don't want to cooperate tonight. If you see the video on sclerodactyly you can see my hands and I recommend avoiding this at all costs!

Take care.
Amanda Thorpe
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#4 marsha

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Posted 27 September 2011 - 07:30 AM

Amanda
What is Physiotherapy? The only thing I was offered was the Chemo drug. I said I would wait until it got so bad I couldn't stand it. The other question I have is this, how fast does sclerodactyly progress on average? How long did it take say for you from onset to curled fingers? I do keep trying to move them as much as possible and I do the exersises that I saw on here. Is it "normal" (what ever that is) for it to be maybe in one hand more than the other? I think I am getting a bit scared about it. Thanks for everything and I loved your video!!
Marsha

#5 Amanda Thorpe

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Posted 27 September 2011 - 05:31 PM

Hello Marsha

I think the physiotherapy involves wax baths to warm up and soften the hands and then stretching and the like is done to the hands by the physiotherapist and the idea is that you carry this sort of thing on at home. I only ever went to one appointment at the hospital as I wasn't well enough to get there and they just gave me splints. I also had some private sessions with a friend who is a sports physiotherapist but again I was just too ill at the time and the sessions just sent me straight to bed. I had a wax bath at home and I used it for months on my hands and feet about 4/5 times a week.

How quickly sclerodactyly progresses is going to be different in every person so what happened to me can't really be used as a guide for what may happen to you. Mine was quick and yes my right hand is worse than my left, why I have no idea as I am right handed for goodness sake!

By chemo drug I take it you mean cyclophosphamide although I thought it wasn't offered unless you had some sort of internal fibrosis like lung or heart going on as well but what do I know! At diagnosis I had about 70% skin involvement but nothing going on internally so I was given mycophenolate which is an immunosuppressant drug. When I developed heart fibrosis last year they would have given me cyclophosphamide if the fibrosis had still been active when they found it, as it wasn't I was able to avoid it! :emoticons-clap: :emoticons-clap:

Try not to become afraid about what may happen because your fear has no bearing on whether something happens or not, it just makes you unhappy while you wait and see and if it doesn't happen what a waste and if it does happen the fear can impede your ability to come to terms with things. In other words it doesn’t do you any good to worry about what scleroderma may bring your way! :emoticon-crying-kleenex:

Easier said than done I know because I remember well the things I was afraid of when first diagnosed and began to know what scleroderma could do to me. Four years on and some of the things have happened and some have not, some more things might happen and some things never will. What I decided upon pretty early was that I could still have a good life after scleroderma; it was just that life was going to look nothing like I thought it would but that wasn't necessarily a bad thing. :emoticons-yes: :emoticons-yes:

Take care and keep posting.
Amanda Thorpe
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#6 marsha

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Posted 28 September 2011 - 06:51 AM

Amanda,

Thank You, Thank You, Thank You!!! I could never imagine how the words typed on a page could be so reassuring!! I love coming here and reading all the hope and love that pours out all over these pages!!

I believe the medication my doctor was referring to was the Mycophenolate; it's hard to keep straight everything he was saying to me, write it and absorb it! My Mom was with me but she was just an emotional wreck to hear and absorb too much information( you know her baby girl) and all! I think I was more wondering if there is a drug that can kind of halt the progression? Maybe I should not wait till I am so bad that possibly the drugs can't work?? The pain/discomfort in my right hand is such that I can't help but massage it, stretch it, and clench it. It has been about 5 days or so and it's not getting any better.

I know with this disease no two present or continue the same! I did complain to the doctor about my hands and he did say to me it takes years for sclerodactyly to progress and I was too early; I just want to know if this is something else, like maybe arthritis? I am so confused. I can't go to my Physician because they don't know anything about this disease. I guess I am just so frustrated, I want to feel better! As bad as I feel as hard as it is to get up and move, to do everything I need to do, everything I want to do without pain, no one sees how you feel because from the outside you look "normal"(whatever that is). My family doesn't understand how I feel because I "look" fine. Okay I am done ranting. I appreciate your explanation of Sclerodactyly and I know that our diseases have the same name but may or may not act the same. I guess only time will tell the path of my scleroderma.

Again thank you so much,

Marsha

#7 Chopper

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Posted 28 September 2011 - 01:46 PM

Marsha,

When I read what you wrote in the last part of the last paragraph, I thought to myself, that's where I am too. I look fine. The distress I get from my GI system, at times, brings me down. At times I get so tired of cooking everything from scratch and never being able to 'pig out' or eat what everyone else is eating. In reality, that's not a bad thing since I'm actually eating healthier than they are! But especially lately since I was told more testing needs done to confirm my diagnosis, I have to keep telling myself to take one day at a time and not fret too much. It's hard to do sometimes. I'll rant with you anytime!

I see your from Maine. I used to have friends near Kennebunkport back when Bush, Sr. was president. So if you and I were talking face to face, would you call me "Tesser" (instead of Tessa) like my friends did? Is a horse - hoss? Do you drive a ca instead of a car? LOL! Are you Mosha? Sorry, I couldn't resist!

Have an awesome evening!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#8 marsha

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Posted 29 September 2011 - 07:17 AM

Chopper,

I am actually 3.5 hours north of Kennebunk they have a much thicker accent and its "Masha", but remember I'm from Connecticut not Maine so I have the Conn Hack as they call it here, heehee!! And I am glad to have a fellow ranter. Sometimes I feel like I need a good old pity party..

#9 Amanda Thorpe

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Posted 29 September 2011 - 04:29 PM

Hello Marsha

Oh the bane of looking well! Yeah it's great to look well in one respect, at least you can still hold on to your appearance :yes: , but then again people think you're perfectly well when you're in pain and exhausted. :emoticon-crying-kleenex: Double edged sword methinks!

Take care.
Amanda Thorpe
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