Not the lupus!: Well... just about a year after I... - LUPUS UK

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Not the lupus!

Dessaboo profile image
5 Replies

Well... just about a year after I was convinced I had "the lupus" I have been diagnosed with dermatomyositis.

I feel *happy* that there is something actually wrong. How sick is that?

I still haven't seen a specialist but being less crazy feels kinda good.

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Dessaboo profile image
Dessaboo
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5 Replies

Not sick at all - just where many of end up when we finally get the right diagnosis. Take care xx

PMRpro profile image
PMRpro

Not sick at all - having a name, a label, makes it "real" and takes away the sense of "is it my imagination" It is a perfectly natural reaction - especially as there are a lot of worse options...

Dessaboo profile image
Dessaboo

Still not 100% sure what is going on.... but something is! *lol*

My doc put me on prednisone right away so no biopsies were done and bloodwork returned "Ok" pretty quickly so the specialist isnt confident that it is DM.

I have tapered and been off pred since the end of October. But Malar rash has returned, the shawl and V sign while still slightly visible, dont bother me like they did when I had the big flare.

Still have some weakness, stiffness, pain, and fatigue.

Hoping I can get biopsies done before going into a major flare.

*sigh* I feel like such a downer sometimes.

Lisalou19 profile image
Lisalou19 in reply to Dessaboo

What symptoms do you experience with this? If you don’t mind me asking

X

Dessaboo profile image
Dessaboo

Rashes, weakness in my arms and legs, my hands feet have tight muscles and cramp. I'm easily fatigued.

I have pain in my back, my knees, elbows, hamstring and SI joints... not sure if it's because I am using different muscles compensating for weaker muscles.

I have itchy stinging eyes, blurry vision, but they are not gritty or bloodshot.

My feet get cold and turn purple, possible reynaud???

I have depression and anxiety which have been made worse. I haven't been able to work for nearly a year now.

I dont know what is a symptom, what is just a fluke, and sometimes what is real *lol*

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