Hi everyone. I just love this forum, so happy it excists!
Since april I’m using Venlafaxine 2 x 75 mg + Clonidine 4 x 0,25 mg + Gabapentin 5 x 300 mg.
The flares are 90% gone, but I still can’t challenge myself with standing and walking. If I do, I will certainly get flares on some toes or heels or whole foot.
Actually my main frustration is the ‘sand glass effect’ when I stand or feel heat from any source (sun, heating). Like the vanes in my feet blow up and all the blood goes down.
Does any one of you recognize this?
I think if this goes away, I will have less pain and more freedom to walk more.
Thank you for reading, greetings from the Netherlands,
I think that is just gravity unfortunately. Erythromelalgia leads to increased bloodflow so when you stand blood pools in the feet (this is what bothers me the most too). I noticed that walking isn’t terrible as it keeps the blood moving but standing for long periods of time like this is out of the question.
That’s the same with my feet too - walking keeps the circulation going, but in my case it also gives more nervepain which triggers flares.
There has to be a local problem with our feet, don’t you think? Like the vanes are wider. I found this article, http://users.telenet.be/zeldzame.ziekten/List.e/Erythromelalgie.htm
it’s in Dutch, maybe you can translate it.
It describes in normal language what happens to the vanes. I understand that the blood is taking a ‘wrong turn into the wrong vane’, but I’m not a medic.
Maybe it’s helpful (for anyone?).
Anyway, I’m glad you admit about the gravity. Hopefully we will find a solution soon.
Mine is small fiber neuropathy which was just diagnosed as apparently autoimmune and I start treatment for it next week. Usually it’s not local, but rather more systemic based where our bodies don’t react well to increased temperature and exertion. It can be many things though, EM seems more to be a symptom to be so there can be many causes which makes it so hard to treat.
Thank you your explanation. In my case that makes sense. Yesterday I had a bloodtest for my adrenal glands (ACTH) because of low cortisol and low DHEA. This can influence the heat in my body and nerve system. I have to wait 2 weeks for the results,. I will cheer if it’s an adrenal gland problem what can be treated!
So true, walking is so much better than standing.