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What Is Going On Inside With The Collagen?

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So some days my hands &/or knees are more swollen/puffy/stiff than others. Why is this?


Does the excess collagen just float around inside us looking for a place to set up shop permanantly? Or is it more like a gypsy caravan, always traveling but never stopping for long in any one place? Why does it especially like certain places as opposed to others? (tendons, ligaments...)


I had my first visit with a hand therapist today and she seemed to think that she would be able to move it out of my hands, albeit temporarily. I'm not so sure.


I really want someone who has worked with sclero patients before. I'm not sure she has. Iwill ask next visit.


She suggested, to my delight, that she wanted to work on my shoulders too, to improve flexibility. She wants 2-1hour sessions/week but due to scheduling, I can only get mostly 1/2 hour sessions <_<


Has anyone else had hand therapy? Did it do much good for you?


Thanks, Barefut

Take care,



Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Barefut,

I have been going to hand therapy for two years now. It has really helped keep my hands from curling. They are slightly bent and I can't make good fists. My left hand is worse than my right. I believe the therapy has prevented more damage to my hands. I go twice a week for over an hour. Part of the time is spent with a parafin dip and heat on my hands. Then there is a series of exercises that I do, some with putty, some with weights and others on machines. Then my therapist massages and stretches my hands. That sometimes is uncomfortable.


Good luck with your hands.



ISN Artist

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I never went through any formal hand therapy but my rheumatologist has said from the very first visit the importance of doing daily hand exercises and to USE them. I followed his advice and my deeply curled fingers now only have a slight curl and I have full use. So do those exercises daily. It will pay off in the end.

Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I just started therapy 2x/week 1 hour. Like Miocean, its mostly heat therapy with a few very gentle exercises. It feels good although the hand aches continue. I'm not sure you can "move" the collagen out but the heat does reduce inflammation and swelling.



You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Janey

Reading your message about your hands un-curling has given me a bit of hope and I just wanted to ask you a couple of questions.

How long had they been curled for before you noticed an improvement? Also what kind of excersises did you do?

The knuckles on my "hand" are frozen sort of and don't move at all and my curling is on the knuckles of my fingers. I have very little movement now and also two ulcers that just won't go away.... so excersise is quite painful. I do have a squishy ball that I use and I try to open and close the fingers but there isn't much movement there.

I've had this for about a year now and the skin is very tight on my hands and arms. Can you offer any advice ? The London specialist said that I should be plateauing now (have had Scl for 2 years) and that things may start to soften and I may get a bit more function. So far it is still progressing however...

Thank you, Megan



Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Hey there, Barefut. Back in the day, when I first started getting sick, early '80's, I was having quite a bit of trouble withmy hands. I did have pt, probably 2 half hour sessions per week. Mostly it was the parafin dip. which felt great, and some exercises. They actually made some casts for both hands, the casts went all the way up to my elbows, and were attached withace bandages. I wore them every night. It wasn't the most comfortable thing to wear @ night, but those casts really helped. I gained back the mobility in my fingers and they did stop from curling up. Before I got them, I couldn't even open my hands in the mornings when I would get up. So, I would say I had a great experience. I don't remember them saying anything about moving the collagen out of my hands, but they did make them work again.

Best of luck!


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