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I have a question about Generalized Morphea


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#1 isobelle44

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Posted 11 April 2009 - 02:20 AM

I don't post that often but I read the board everyday. I have a question: I was diagnosed with generalized morphea and I have it most places, but on my face I have one spot about the size of a golf ball on my one cheek. My understanding of morphea from everything I have read is it is spots of collagen build up and that's what I have. But lately my face is feeling more of an all over tightness and my lips have been extremely dry.

I used to have just tightness at my hairline but now it's all over feeling. Also my arms are feeling either really dry or tight, all over feeling, but yet they seem to be soft when you feel them, just weird things. Also I have noticed my ankles feeling the same weird stuff. I'm wondering if morphea does that or is this moving to a different area?

I have also been diagnosis with IBS, hypothyroid, reflux, no Raynaud's though, yet. My fingers are just slightly swollen and I can see a spot on a couple of them where there is collagen build up but they don't seem to have changed much in the last year. My finger pads get those wrinkle lines down them and seem to be a little tender at times. But it is not something I would think would be a symptom of anything else. I don't have a rheumatologist appointment till September and my dermatologist appointment is in June, should I wait or not? I appreciate any comments.

My nose has been feeling weird too, and its getting wrinkle lines up between the eyes area, and I feel like I have a stuffy nose or sinus problems all the time. When I mentioned some of these things to my rheumatologist about a month and a half ago she said everything looks normal and she felt my arm and said it was normal, not to worry.

I don't need to be diagnosed with scleroderma, but if that is the way it's heading, I guess I want my doctors to acknowledge they know that's the way it's going so I know they are treating it the best it can be treated. And if that is the way its heading then I have a lot of decisions I need to make and changes. I'm a widow with a developmentally challenged adult child, (who is a great kid, and I feel so blessed to have him) but I would need to make some changes, big ones.

Thanks,
Sharon

#2 jefa

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Posted 11 April 2009 - 03:31 AM

Hello, Sharon

Thanks for giving us such a thorough update. I remembered your name, so I just read through your other posts. It is good that your next appointment is with the dermatologist (at Mayo, according to an older post) so you can address those new skin issues then. I am not a doctor, but June is not that far away and I don't think there is anything going on that would need to be seen sooner. You also mentioned in an earlier post that your rheumatologist has started you on Plaquenil and that he said it would be at least five months before it started to have any effect. I can attest that it does take a while to kick in. For me it was about seven months before I could notice a change. By the time of your September appointment, you should have a pretty good idea whether it is helping.

What seems to come through most in your message, though, is fear about how you would be able to care for your son if things get worse. It is impossible for anyone to guess how this disease will play out for us, but I can tell you that stress itself can really do a number on you if you let it. I found a great deal of perspective from reading the Emotional Adjustment and Scleroderma pages. There is much on those pages from discussions of anxiety to quality of life with scleroderma and many personal stories in each section. It might be a good idea for you to talk to a counselor about how you will be able to keep up with your additional needs in the future.

In the meantime, we are only a click away when you need to talk.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 isobelle44

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Posted 11 April 2009 - 05:48 AM

Thank you Jefa, Yes that is pretty much what I think about, how this is going to go and what to do in the future. Thank you for the suggestion and link, I started looking through those pages and wow there is a ton of information and encouragement there. I will continue to process through them. This site has been such a wealth of information and support. Im very thankful for it. Sharon