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symptoms keep coming

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#1 kris52770


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Posted 23 May 2011 - 04:18 PM

Hello everyone,

First I feel I must apologize for flaking out the last couple of weeks and not being as supportive as I should be. I just needed to mentally check out for a while after the last rheumatologist appointment.

So here it goes..I went to see her on May 5th and she asked where I am at. I told her that it feels like the muscles and skin hurt all the time. She stated that all the tests for heart,kidney and lungs came back ok. My scl-70 came back negative but the skin biopsy came back postive for morphea. She stated that she feels it is only skin related but she can't be sure. I told her that on top of the skin and muscle my feet hurt terribly and with my job on my feet all the time this was not helping. My job is not flexible and I try to stay off my feet as much as possible. I have more skin involvement than I did a couple of months ago including some very painful spots on my back with are all rough now. My hands are different degrees of red all the time but I never see the blue and white that you guys speak of. Hurts to type not and they are tight. I have what they call pale white plaques that are slightly indented. Also I noticed that my mouth is sore to open. They are waiting until June 9th when I have a second skin biopsy to see the results before setting me up with the specialist.

I guess my question is does anyone else have the feeling like the muscle and skin are being eaten from the inside out? The rheumatologist looked at me like I was crazy when I told her this. However I did hear the dermatologist state to his assistant that there was muscle atrophy on my back in the same exact spot that has been so painful for me. Am I crazy?? Hopefully someone can give some insight on this...again thanks for all the support from you guys. Hope everyone is doing well and you are in my thoughts...

All the best Christine

#2 Joelf


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Posted 24 May 2011 - 01:21 AM

Hi Christine,

I'm pleased to hear that the tests for your heart, lungs and kidneys came back okay. Certainly pain and discomfort in the muscles and feet seem to be a feature of this bizarre disease. Before I was on my medication, my joints and muscles felt excruciating so I can understand how you're feeling and I'm sure you're not going crazy (don't worry, my consultant thinks I'm peculiar and just humours me!! ;) :lol: )

I've included links to Morphea Scleroderma and Miscrostomia which I hope will be helpful to you.

Do let us know the results of your skin biopsy on 9th June, won't you?

Jo Frowde
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#3 Amanda Thorpe

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Posted 24 May 2011 - 09:53 AM

Hello Christine

Next time you see the doctor try and pin them down about how to address the pain you are having because whether scleroderma related or not it needs to be treated. Hopefully the second biopsy may give you some more answers.

Take care and keep posting.
Amanda Thorpe
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#4 janey


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Posted 24 May 2011 - 01:48 PM

Congratulations on the good news regarding heart, kidney and lungs! That's awesome! Since the results of your biopsy came back as morphea that could probably explain a lot of the symptoms you are experiencing (based on the information in the link that Jo provided). Normally morphea only affects the skin and the underlying muscles and joints. It is not systemic, therefore, internal organs are usually not affected. Since I do have systemic scleroderma, I can't relate to the feeling you have in your skin. It does sound painful. I hope you find some relief for it soon.

Please take a look at our morphea section. There are pictures and personal stories from people that do have morphea. You might find some familiar symptoms. Let us know how the next biopsy turns out.
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#5 debonair susie

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Posted 24 May 2011 - 02:05 PM

Hi Christine,

It sounds as though your rheumatologist is working to help you as much as is possible. If only it was easier or our doctors to give us more definitive answers. Hopefully, as Amanda mentioned, they will know more after your second skin biopsy.

Thank you for updating us to this point and please let us know how your next appointment and skin biopsy turn out?
Special Hugs,

Susie Kraft
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