Erythromelalgia

[Katsy]

Hi all

Anyone else suffer with the above especially in toes and been prescribed anything for it? My second toe is red, really swollen and paniful to the point its kept me awake for the last 5 night.

Im currently taking aspirin for ET and wondered if there is anything I can take. Think I may take myself off to A&E later as my next app with haem isn't until Oct

Thanks

K

[hackett]

Katsy, Erythromelalgia was a frequent companion in the earlier stages of my career with ET?PV. In fact I had it even before I was diagnosed with PV. After a harder day of, say, walking my soles and toes would feel as if they were burning, red and hard to the touch. Accidentally I found that a small extra dose of aspirin would give quick relief. So I have wondered if a dose of some other thinner would also be helpful. If it is debilitating I'd consult my Dr/Haem. As an aside because my Haem is over 300 kms from here I have an arrangement where by I can consult him by phone or email if necessary. I hope this has been of some use. Regards Hackett

[Katsy in reply to hackett]

Hi Hackett, thanks for replying. Ive spoken to the clinic amd theyve advised to go into A&E just to be on safe side. I just want painkillers anything just so I can flipping sleep/walk!

Frustrated isnt the word

K

[karteeka]

hi katsy, your painful toes sound like gout- which is very common in pv/et sufferers- I had it in an ankle joint, and origionally thought id torn a muscle, but discussing it with my haem- and had my uric acid level tested which was high, we decided that is what it was. I increased my fluids and took regular anti inflammatories as I wasn't keen on the gout medication- combined with a celery extract which is a mild diuretic, and it hasn't returned, but regular uric acid measurements are now part of my blood screening- its just something to think about- hope it settles soon, karteeka

[Katsy in reply to karteeka]

Hi there

I was last tested for gout/RA 3 weeks ago and all clear.

Ive increaseed my fluid intake and already on anti inflams for a prolapsed disc.

I hate celery the smell makes me feel sick but im so frustrated ill try anything even celery lol

K

[Aime]

Hi Katsy, I get sore red and swollen toes and also burning hot soles of my feet. They end up stuck out of bed, then freeze in the middle of the night. I am going to mention it to my haem on 4 september so will see what is suggested and will let you know. Hope you get relief soon. Regards Aime

[Katsy in reply to Aime]

Hi Aime

Just got back from A&E, prescribed co-codamol for the pain and was told its something I should get used to. Will be I interested to hear what your haem says.

K

[Aime in reply to Katsy]

Hi Katsy, that was very sympathetic of them!!! Will let you know after 4 Sept. Take care, hope things improve, Aime

[Katsy in reply to Aime]

I saw my GP this morning and she suggested I should increase my aspirin from 75mg to 300mgs for 3 days as another of her patients has ET and were advised by their haem to try this, in for a penny as they say..,

[Hidden]

I get this when I have forgotten my aspirin for a few days, my toes start to get painful and when it starts I too increase my aspirin, it usually does the trick and is almost instantaneous and then I go back on my 75 mg daily. (until I forget and my toes remind me again)

[Katsy in reply to Hidden]

Hi Mallard

Good to know im not the only one thats absent minded