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Skin Tightness and Pain

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#1 Leslie R.

Leslie R.

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Posted 10 September 2008 - 06:56 AM

Hi Everyone:

For the past few weeks my skin have been getting more worse, although my doctor (Rheumatologist) already claim that it will get worse before it get better. It seems that I have already hit my worse, you see the tightness is spreading and more I am in pain. My doctor just recently push my pain medication from one a day to twice a day for me to get some type of comfort zone. My dermatologist wanted to try another medication, but I decided not to do so, because I am already under so much meds. I do know what else can I do but to take these pain medication, any suggestions.


Leslie R

#2 Shelley Ensz

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Posted 10 September 2008 - 09:36 AM

Hi Leslie,

I'm sorry that your skin involvement is progressing. I hope that your rheumatologist is one of our listed Scleroderma Experts? If not, please consider having a consultation with an expert to make sure you are on an ideal treatment program.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 10 September 2008 - 12:01 PM

Hello Leslie

I am sorry the skin tightening is progressing and along with it the pain. I know that these two symptoms alone can debilitate you without any help from all of the others.

Yes the skin imvolvement can peak, plateau, improve but you can aid this process with treatment and shouldn't just be left for the skin issue to run its course with nothing more than pain meds.

My meds have definately slowed skin progression and I use an excellent pain killer that targets the nerve endings and as you know there are lots of nerve endings in the skin.

I hope you get a comprevensive plan in place to deal with the skin progression as well as the pain and to this end you have the link Shelley provided.

Take care.

Amanda Thorpe
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#4 RememberingToSmile


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Posted 10 September 2008 - 12:29 PM


I am sorry you are going through this stage. The skin pain was maddening for me, too.

Are you in the inflammatory stage of the disease?

For me, I'd get relief with nightly moisturizing baths that I did edema massage and stretching the therapist showed me. I also bought dozens of skin products until I found the one that worked for my skin. For me a two step treatment worked remarkably better than the others. The pre-treatment that loosened and relieved the sharp, skin-twisting discomfort, then a deeper, thicker moisturizer that would keep things quiet for hours.

Still - it was only when we found the right oral medication that the symptoms started dying out.

I had all this during early diffuse stage - what stage are you at with the disease?

All my sympathy to you while you go through this....

#5 mowingqueen1



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Posted 12 September 2008 - 06:42 AM

Oh the pain. I have lots of tight skin issues in my lower back to the back of my knee. My skin in my hip and thigh feels like I'm touching a bone under the skin (very tight). I have been on med after med for pain and to help control the spreading and nothing has worked. A few months ago I went back to my doctor and told her that I had enough. I was ready to give up. She sent me to a pain management clinic. I have no pain!!!!!! I had a nerve block procedure. It last for about 2 months for me. Everyone is different. This may not work forever but for right now it is working for me and I'm out of the bed. I would ask. I laughed when she told me to go there because I really did not think anyone could help me. It is still spreading BUT now I have relief from the pain. Good Luck.

#6 canon


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Posted 12 September 2008 - 12:36 PM


Really sorry you are going through so much. Don't ever stop doing the exercises for skin involvement. Keep doing them no matter what. Ask your doctor if you don't have them. Better than that maybe physical therapy would help more. There should be a different medication for pain you could take if the one you have is not working. There are also specific meds for skin involvement. Hang in, and keep us informed and keep in touch.

A happy heart is good medicine.