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Patch2

Having a difficult time - Morphea

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I'm a 37 year old female with confirmed Morphea on my back, both sides and stomach. I am about 30lbs over weight and I've been trying to get into better shape. The problem I'm having is my hips and lower back hurt so bad just walking around the apartment complex. I have negative ANA, but punch biopsy suggests I need very close monitoring. I do have antibodies in my skin, tissues and now muscles with no organ involvement. I also have Graves Disease and Mild Disc Degenerative Disease as well. I was able to find relief in popping my joints (most of the time they pop without me even trying) 

 

That being said, the only option I have is Vitamin E. It costs $150.00 a tube. All I want at this point is to find a natural way to feel better so I can become more active. I don't want to be put on man made medications to cover up the problem. I want to be healthier overall.

 

I was taking 3 ibuprofen a day and it was working great, but my doctor said it was terrible for my liver, so I stopped. What do I do now to at least make exercising less painful?

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Hi Patch2,

 

Welcome to these forums!

 

I'm sorry to hear that you are suffering with morphea and other painful symptoms.

 

Please note that I have no medical training, apart from an out of date first aid certificate and a fondness for telling my medical team how to do their job. However, although we do have a medical page on Alternative Treatments I would advise consulting a scleroderma expert who can give you more specific advice on treatment and ways to help you improve your fitness and quality of life. With such a complex disease as scleroderma, you do need to consult someone with specialist knowledge and expertise and although nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen do have their place, I think they really should be taken under the supervision of your consultant, particularly as you have other health problems as well.

 

I'm not keen on taking a lot of medication (prior to having scleroderma, I seldom took even an aspirin) but I very soon realised that without suitable medication I would be very ill, or even dead, which tends to concentrate the mind wonderfully. :wink: Eight years on and my symptoms have stablised and settled down, due in part, I'm sure to the conventional medications I take.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Patch,

 

Welcome to Sclero Forums!  I'm sorry you have morphea and other health issues, too. Like Jo, I also have no medical training at all.

 

I just thought you may also want to look into UVA1 Phototherapy, which is now widely considered to be the first line therapy for morphea.

 

It's very noninvasive. It's like a tanning booth, but available only in some dermatology offices. Treatments are only a matter of seconds. The major side effect is getting a nice tan, but because it is also a form of sun exposure, regular full body skin exams are part of the treatment program.

 

Exercise can get difficult with any sort of chronic illness. If you have a warm pool available, you might want to try out gentle pool exercises, or even just floating in a warm pool, for pain relief. It's amazing how comforting it can be for many people, and especially for arthritis-type pain.  And of course, a scleroderma expert who treats morphea is always nice to have on your team, but they are few and far between in the U.S. but a good dermatologist with interest in skin diseases (not just cosmetic procedures) and a UVA1 phototherapy booth might be quite helpful.

 

:hug-group:


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.

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