[SpenceAx]

I recently went to the Doctor after 3 years of worsening raynauds and ‘Rosacea’ rash on my face. Dr took one look at the rash and said it’s not like any rosacea she’s seen and has referred me to rheumatology for further investigations. Got some other markers which I’ve put down to other things - joint pain/stiffness (but not convinced this feels rheumatic), dry eyes (consistently told about this at optician appts), hair loss etc, generally having periods of feeling okay then periods of feeling empty and like I’m waking into the wind with a parachute strapped to my back.

struggling with the emotional side of things since discussion around referral - few very isolated and some of the few people I’ve discussed this with have been very dismissive and have suggested I’m over reacting / exaggerating.
Any advice for the waiting period of the unknown…

 

[lazylegs]

Hi Spence Ax,

Your rash looks similar to mine when I am flaring. The rash along with Raynaud's, the hair loss, joint pain and stiffness are enough to warrant seeing a rheumatologist. It may be a wait since there aren't enough of them but most GP's don't know enough about Lupus or other autoimmune diseases to make a diagnosis.

Trying to get a diagnosis can be a journey. Some people get one quickly but most have to wait until they have enough symptoms to make a firm diagnosis. The following site Lupus: Criteria for Diagnosis gives the criteria the doctor would be looking for.

Not knowing what is wrong can take a toll on you. While you are waiting I recommend eating a healthy diet, getting enough sleep and do very easy exercise if you can. Moving keeps the joints lubricated making it easier to move but if they are complaining don't continue. It might help to listen to music, do some deep breathing exercises, meditation or take a warm bath to relax. My go to is walking. Looking at my surroundings helps me tune out the world.

You know what is normal for your body. Don't listen to the nay sayers. Keep searching until you get an answer. It may even involve changing doctors.

Take care,
Lazylegs

 

[x_claire_x]

Hiya...that looks like a lupus type rash to me.... it shouldn't involve the naso-labial folds (lines from nose to mouth) and I don't think your rash does? I also get Raynauds and was finally diagnosed with MCTD (Mixed Connective Tissue Disease) the Dr should do a test for anti-rnp antibodies ... that is usually entirely decisive for MCTD diagnosis. My mix is Lupus, Polymyositis, Scleroderma... an overlap is usually a good thing. I agree you should be further investigated and sadly we hear only too often on here of people feeling awful and being doubted by their friends. family and Drs. You are living it...trust your body and trust yourself and when you see the Consultant don't be brave...tell it how it is and don't wear any make up etc....Hopefully you will start to feel more human again very soon..... Best Wishes...Claire