Is it worth getting a diagnosis?

General
1

Hi all.

I joined here a few years ago when I realised I 99.9999% had this.

I had been getting burning red feet and hands, especially with exercise, since I hit puberty, then it was really flaring a few years back and anything would cause my hands to heat and burn and go red such as typing or even just holding a book.

It’s been a bit bad the past few weeks and I wondered what treatments I could have. I mentioned it to my dr a few years back, he looked kind of amused and interested and sent me for bloods, I didn’t push for a referral as I didn’t need the bother.

I have a whole host of other conditions such as EDS, endo and asthma and have been diagnosed with reynards since I was a child.

I just wondered if it was really worth my time getting a dx, if anything can be gained by it?
I live in the outskirts of London UK, so I know there are some Dr’s more available to me.

Thanks for any help here.

2

Emma my son was recently diagnosed with erythromelalgia and was just at the only hospital which treats it in the United States which is the Mayo Clinic in Rochester, Minnesota. He was prescibed a multitude of things to try. A high dose of aspirin. I will find out the dosage and get back. To wear Lidocaine patches 5% on his feet for 12 hours per day and a special topical ointment which i will find out the name of. He does not have it yet. I am not sure if the lidocaine patches can be used for your hands or not. I hope this is helpful.