LUPUS UK
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Update on SLE + Erythromelagia

Just an update after the burning feet and legs post and helpful replies. Today's appointment with my consultant has been interesting. I left with a confirmed diagnosis of SLE, as opposed to probable and two rheumatologists concurred in opinion that my newest 'symptom' was indeed Erythromelagia, separate and distinct from Raynaud's so both need to be treated separately.

Nerve conduction tests have been ordered as I barely felt the pin stuck in the top and sole of both feet, although feeling was not too bad from ankles upward. I also had an abnormal reflex in right foot. Pics of joint swelling/pain/rashes all noted and was asked to keep documenting it all in that fashion as it was really helpful.

It seems that the varying pain in my neck, shoulder, hips, lower back, right leg and ankle is worse now because of lupus arthritis on top of the existing issues.

Raft of bloods taken again to check everything - they will call with the results early next week and will then talk to me about options for managing Raynaud's and erythromelagia symptoms.

My blood wouldn't shift today - blue hands and all that! I had it taken from my hand after my arm wouldn't play ball. Fine til I got home then sprung a little leak while making tea haha - all okay now thanks to duct tape, kitchen roll and creativity!

I was asked to call the clinic helpline to report any worrying changes rather than wait 5 days for a GP callback. They were also unimpressed that GP had asked me to use hibiscrub on a very angry photosensitivity rash 😂

Didn't ask everything on my list but there was a lot to get through, including the Doc consulting a colleague to confirm a diagnosis. All staff at all levels in the clinic were rushed off their feet and the clinic was over an hour late. All staff hugely apologetic and unfailingly polite. Dr's comment was that they were expected to deal with complex individuals in 20 mins which wasn't always possible. I'm very grateful that they say b******s to targets. 👏👏👏👏👏

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Hi dear..my sister has lupus sle .she having burning and pain in her feet too..if u don't mind telling what u did that help u??

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Hi Semoniavene, I've got several different factors affecting my feet so I don't want to give your dear sister poor advice when she's so unwell. At the moment, if my feet are hot and painful, I try and cool them gently (not with ice) and elevate them. If they are hurting from cold, I try to warm them with layers of clothing. It's probably best that you get some medical advice from your sister's doctor - they may need to examine her and run further tests to be sure. Wishing you all the best xxx

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Thank u so much for the relply dear..I appreciated it☺☺☺

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Thanks v much for this update flap! I love the way you’re looking at all this. In my experience, stuff really can improve once multisystem investigations segue into diagnosis and you start narrowing down to the most convincing....meanwhile you + your medics can begin to figure out which treatments you respond most positively to (with least side effects)...it’s all about collaboration...sounds like your clinic is full of the sort of folk who really care and are trying to do their best despite all the strain our NHS is under

😘🍀😘🍀😘🍀 coco

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Hey Coco, I'm getting my head around it all today following a restless night. I am sure that this is an experience all of us here go through on a regular basis! I think the best thing that came out of the appointment was that aside from more concrete diagnoses, my concerns about my feet, lack of feeling and impaired mobility were being actioned quickly. I'm lucky to have a good clinic - I know that others don't always have a positive experience. I thought of your post from earlier in the week when the docs were looking at my photos - I'm hoping that you'll have time within your upcoming important meeting to show your consultant yours as the response to mine was immediate.

Thanks again ❤❤❤

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😍 Thanks flap...i missed your reply till tonight, and maybe that was meant to be cause i’m spending this week prepping for the meeting you’ve mentioned and your kind, thoughtful words are just the encouragement i need 👍👍👍👍

Looking forward to your next post! Take care

😘🍀😘🍀😘🍀😘🍀

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Hi everyone.

It's been a while since I wrote or responded to all the posts. I'm a bit better now since I started drinking half a teaspoon of cayenne pepper in a cup of hot water daily. My feet and hands are longer become extremely cold and cyanosed as before and my energy levels have improved. I'm not sure how exactly it does to all this but it's working for me at this stage. I'm still taking my medication though I'm on Prednisone.. Epitec and Nivaquine. Frm Dibage in South Africa

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Thanks for the update. A good advert for the benefits of being proactive and how important it is for us to take the initiative when we know things aren't right. Well done :) x

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Thanks whisperit, all credit to this community for providing the tools and support 👍

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