Update on how the Sclero is doing in my life.

2 posts in this topic

Update on how I am doing.


I keep getting large red areas on my left hand; they swell, are hot to the touch, but there is no pain associated with it. I took pictures of it for my doctor since it happened on a Friday and the clinic was closed until Monday. The strange thing is the spots that look painful are gone the next day. I had a flare up that she saw the other day when I went in to get a script from her; she saw my face, I have the same thing in my cheeks. She says that it looks like lupus; she is going to send a note to my sclero doctor and let him know because he thinks I have something going on besides scleroderma that is involving my muscles more than just scleroderma should be.


This disease is so funny with all its waxes and wanes; a person never knows what is around the corner it seems everyone's symptoms are different.


I also have fluid in my ears; it just seems to happen since my head injury in 2008 but the doctor is not sure if it is the sclero or not. Just a frustrating thing as when it happens I can not do much of anything because I get dizzy and could fall. My doctor says I am a real challenge for her and a good learning experience. Oh, with the ear thing there is no swelling or infection, my body just has a mind of its own.


Other than all this strange stuff I am working on a quilt trying to get it done; it is slow work as I tire easily but I am persistent.


I hope everyone is doing good; my blessings to each of you.

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Hi Quiltfairy,


Thanks so much for posting us an update on your symptoms.


Unfortunately it is possible to have Lupus symptoms as well as Scleroderma; I've included a link to our medical pages on Scleroderma in Overlap and Lupus in Overlap to give you some more information.


It's certainly true that the path of Scleroderma diverts in lots of different ways; unfortunately, this is what makes the disease so difficult to diagnose, as it affects everyone differently. It does sound as though your doctor is on the ball as she is conferring with your Sclero specialist and keeping an eye on you.


The fluid in your ears sounds very unpleasant; my husband has Meniere's Disease and very disagreeable it is too!! He went through a stage of collapsing when a very bad dizzy spell hit him and once collapsed in a nauseous state in the street, where people were walking round him, thinking he was drunk!! :sick2:  :( Thankfully, it does seem to improved since then and he no longer gets such violent attacks, but he suffers with tinnitus most of the time, which is horrible, although he has learned to shut a lot of the noise out, as he's had this condition for many years.


Please do post a photo of your quilt in our Photo Gallery when you finish it; it sounds beautiful and must require so much dedication and patience to finish.


Kind regards,

Jo Frowde

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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