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Scleroderma And Physical Therapy


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#1 spt

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Posted 04 December 2006 - 07:02 AM

Hi! I'm a physical therapy student and I was wondering if anyone could offer some advice for treating patients with scleroderma. Those of you who have had physical therapy may have some tips for the novice therapist. What worked for you? What didn't work? I'm really interested in learning more about scleroderma. Any suggestions or advice would be greatly appreciated. THANKS!

#2 janey

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Posted 04 December 2006 - 12:38 PM

Good for you for seeking out this information! Thanks from all us with scleroderma.

I did find this bit of information in the ISN physical therapy section.
At the first stages of skin tightening on the fingers, hands, and legs occupational and physical therapy are important in preventing, and ameliorating irreversible limiting contractures of the fingers.
Protection of the hand, and fingers by utilization of gloves when doing the dishes, gardening, and other physical activities prevents trauma that may break the skin, and produce slow healing ulcers with risk of infection. (1)

My brother is a PT so after evaluating the problems I was having he gave me exercises for my hands (to possibly stop the curling), my knees and hips. Those are the areas in which I had the most pain. I've also find that stretching every inch of my body helps with the stiffness that forms when I sit or lay still too long. I walk or do the stationary bike when my lungs allow it.

Each one of us is different with different pains and levels of pain. I'm sure you'll hear from others. Good luck with your schooling! Thanks for targeting scleroderma as an area of interest.

Big Hugs,
Janey Willis
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#3 peanut

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Posted 04 December 2006 - 01:11 PM

What has helped me is yoga stretches and breathing techniques. It feels so good allowing the blood to flow and stretching the tight skin and muscles with stress relieving stretches and twists. The breathing techniques have helped me feel more in control since my poor lung are winded easily and make me feel out of control.

At home I use light 3-5 lb weights and do light resistance training (like in pilates) to maintain some kind of muscle mass in my arms. I also like walking on the elliptical for 20-30 minutes because its easy on the knees, but gets the heart rate going and makes me use my lungs. My pulmonologist encourages me to continue to do things that exercise my lungs like the elliptical or walking a few flights of stairs without over exerting myself.

Hope this helps,
peanut

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my HMO makes me wear a helmet...

#4 spt

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Posted 04 December 2006 - 01:36 PM

Janey,
Thanks so much for the reply. During one of my rotations, I treated a patient with scleroderma and tightness in the hands and legs seemed to be a major problem for her as well. I wasn't sure how aggressive to be, though, with stretching. I was so afraid of hurting her. I assume that I should let my patient dictate how aggressive I can be with stretching and let pain be our guide? Thank you so much for your input.

#5 spt

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Posted 04 December 2006 - 01:47 PM

Peanut,
Thanks so much for the valuable information. I can see how yoga and breathing exercises could be very effective as well as the elliptical. Is the loss of muscle mass in your arms due to the disease process itself or because of the inability to use your arms as effectively or a combination of both? Your comments help so much! Thanks for helping me become better at treating patients with scleroderma!

#6 peanut

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Posted 04 December 2006 - 02:56 PM

Hi.
Glad to help. It’s nice to hear you’re being proactive about finding things that may really help people with Scleroderma. It’s hard to find people who even know what the disease is. You’ll be a total asset to your health community.

I spend a lot of time resting and sleeping so my overall muscle mass is very low, so some nice light weights give my arms some kind of shape other than flab. I feel fatigue and muscle aches due to the disease. Light weights create resistance without strain but its always up to each individual. There's no one person with the same exact Scleroderma symptoms so its best probably to let people go at their own pace.

Scleroderma causes feet, kidney, heart, lung… all kindas a issues so get to know your patients well. I find plyometric, low-impact activities like pilates, yoga and elipical are great. I hear gentle swimming exercises/aerobics are also helpful. I like anything that gets the blood moving. Even a simple walk around the block, the mall, or the grocery store is good for me.

Let me know if you find any good hand exercises. Scleroderma causes hand problems too..

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Tara

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Posted 04 December 2006 - 04:55 PM

There is actually a sclero PT guide written by a therapist at the Univ. of Pittsburgh that was recommended to me by Dr. Medsger. I think it's online, too. I got a copy for my PT that helped both of us. I don't think I can post the link here, but if you email me, I can send it to you.


Tara

#8 spt

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Posted 06 December 2006 - 03:08 AM

Thank you all for your responses. Your information helps so much! I hope to become a better PT in treating patients with scleroderma. This is such a helpful website and you all seem very supportive of each other. It's a wonderful resource for anyone interested in learning more about scleroderma.
THANKS AGAIN!

#9 janey

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Posted 06 December 2006 - 04:43 AM

Just speaking from my own perspective, letting me decide how far to go is fine, but only to a certain point. I sometimes find myself whimping out too soon and then want to kick myself later for not taking it a little further. I got some private lessons with a yoga instructor a couple of years ago and by keeping track of what I did each time, she was able to push me a little further at each session. Sometimes I would be saying nasty little things under my breath, but afterwards, it felt so good that I was thankful for the extra push.

Here's some information you might find interesting on exercise and arthritis and pain management. It mentions some of the things that Peanut said about water aerobics and low-impact aerobics. Also, many scleroderma patients having overlapping diseases - fibromyalgia being one of them. This is a very painful disease so I'm linking you to our site on treatments for fibromyalgia.

Good luck to you Darling in your studies and THANK YOU for learning more about scleroderma and ways to help.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#10 Sheryl

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Posted 06 December 2006 - 05:33 AM

What about online physical therapy? Besides typing we could do leg, hip, ankle and feet flexes. That would be great if we could learn excercises from people that have had PTor OT. For those of us that don't have insurance that will pay for things like that we could learn what others are doing. I wouldn't want to take jobs away from professonials but we could learn some of the basics from each other. I know, I am out of line. After reading some of Barbs blogs I get that way.
Barbs, I have been wondering what you have been up to. Its all right in the blogs. I just decided to check out what they were all about today. You are a stitch. I guess you were wondering why I haden't ponced on some of your stories. I just found them. And I see you are covering your tracks on alot of things you know I would comment about. Geese eating your water pipes outside. Why weren't they burried and were they PVC or some other sort of plastic. Enough, I want to be good today.
I have been making cinnamon bread all morning. Strengthening my fingers and hands with all the kneading. I will pay the price later today or tomorrow for sure. My sons like to have homemade Cinnamon bread on the holiday. Now, I have to make enough for them, their wives and their children. My little family has grown. I hope to experience alot more growth, by staying well and keeping up with all of your wise information. Have a nice day everyone. Sheryl
Strength and Warmth,
Sheryl

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