Tingling/Burning sensation from feet up to calves & hands up to arms-can anyone relate to this & provide advice on how to alleviate please?

[BettyBops]

Hi I’m Beth, I’m 24 and have just recently been diagnosed with undifferentiated connective tissue disease. I’m struggling to manage flare ups at the moment, as the rheumatologists’ adjust my medication. I have a tingling/burning sensation coming from my feet into my calves and sometimes in my hands up my arms too. I’m struggling to stand still for too long! Does anyone else have similar symptoms and could give me some advice on how to alleviate this please? Thank you I would really appreciate some guidance

[chriscarter]

Hi Betty Bobs,

I have UCTD and have recently been suffering from severe itching and burning in my arms and legs. A dermatologist has diagnosed me with Erythromelalgia. As a result I take upto 900mg of Gabapentin to help with the symptoms, which seems to work. Good luck!

Chris

[2InspireU]

Hi Beth, yes, I used to have that, feet burning so much that I had to put them in a bowl of cold water, even in the winter. I had lots of others neurological symptoms, doctor called it 'oversensitive nervous system' and didn't link it to lupus I was previously diagnosed with, or UCTD that I'm diagnosed with now. I got rid of these problems now, in fact 90% of all my symptoms are gone - I changed my diet to plant based, cut out all animal products, dairy and eggs, eating tons of fruit, vegetables and greens - a lot of raw salads and steamed veg. Never took any drugs, after going vegan (from vegetarian) I reversed lupus (I no longer have lupus antibodies, anti dsDNA & ENA antibodies, plus all my blood results are much improved). Have a look at my posts here on the forum if you like, or feel free to message me.

[Hidden in reply to 2InspireU]

This is a route that I’m thinking of following I’m feeling so low and down today and I’d love to learn more about this.Would you mind PMing me with some tips I’m going for more blood tests in the morning and waiting on a referral to rheumy but I’m not over confident in dealing with a diagnosis of lupus even though I’d like to know what’s going on.I have pernicious anemia and have to self nject b12 which I hate doing,I’m not looking forward to more meds as I react so badly to even an antibiotic.x ty x

[Hidden]

I had this BettyBops then found out I had pernicious anemia.since starting b12 injections it has gradually eased off,it’s taken me around a year to get where I am but the b12 shots definately helped heal my nerve damage,you could ask your doc to trial you on a course of b12 ?

[Chicken_noodle]

I second trying the b vitamins. I had a friend with similar issues drop off a bottle one day. I did not expect them to work so well.

[Ianflashdavies]

Yes I get that. I describe it as the feeling you get from a stingy nettl only much worse. Then there is the burning feeling as if boiling water is passing through the veins. I get a pulsing sensation in my feet and hands too. Like in a cartoon when the foot or whatever gets bigger and smaller in quick succession. I don’t really have a solution, i take strong painkillers which although ease it, make me tired and even more lethargic. Like you my meds are being adjusted. So am having to put up with it for the moment. Steroids help it but have their own problems.