Constant sunburn pain in skin of back-any advice?

[redfairy118]

Hi everyone. I have SSC, Raynauds and Sjogrens, diagnosed 3 years ago. I have had problems with the skin on my back for a while, it flares at night across the whole of my back, it feels exactly like sunburn, red hot (with heat radiating from it that my husband can feel from across the bed)and so painful to touch. I cant sleep and nothing seems to cool it down. No sweating, blisters or huge skin discolouring. Its now happening during the day as well and painkillers and antihistamines do not seem to help. Does anyone else have this and know what it is, or have any treatment? I have seen on some US sites it can be treated with Lidocaine, but im unsure if thats available in the UK? Thank you so much

[LucyJean]

Hi there, have you spoken to your Consultant about this? Is your disease managed with immunosuppression? if you are having a flare of symptoms then you may need a medication review.

Lidnocaine is licensed, but whether it is licensed for use for that type of problem is another matter. You would need a Consultant rather than GP to prescribe so again, discuss with them.

We were having a discussion in my workplace today about coping with hot flushes related to menopause. There was advice about using cold mats (that are routinely used for pets!), cold packs, ceiling and normal fans, using moisturisers stored in the fridge etc. I am not sure whether anything like that would help?

All my best

Lucy x

[redfairy118 in reply to LucyJean]

thank you LucyJean-yes i have a cold pack i keep in the freezer, it does supply temp relief, but once i remove it pain is still there. My consultant is not very good-she is very old fashioned and not very interested in me as i have limited skin involvement, which as far as she is concerned is the only symptom of SSC!. I have stopped taking Methotrexate as the side effects were awful, and have yet to be prescibed anything else. This leaves me in limbo a little as my gp would rather i saw my consultant.

[LucyJean in reply to redfairy118]

Hi there, it sounds a tricky situation, but you do need a Consultant review, and someone making a decision about your medications. Is this consultant you see the only Rheumatologist in the department? If there are others it might be worth your GP requesting that you see someone else. Alternatively they could refer you to a specialist centre. I am not sure where you live, but if you are in the UK, then the Royal Free, Salford, Manchester, and Bath are probably the main ones.

[Glynis in reply to redfairy118]

Hi there, Sorry to hear your consultant isnt interested...sounds as if she isn'. Fully aware about sec and that everyone is different .You need your GP to refer you to a specialist centre That also has specialist nurses as well as a consultant that you can see Speak with..Aintree University Hospital Liverpool is another excellant centre, Do push for a referal you need to be seen asap .Good luck x

[Sylviamoore42]

Omg I get this too. It freaks me out, I get it even if it’s not warm.

I’m still in early days old diagnosis