Quote:
Originally Posted by norahs
Hi Mrs. D
I am new to this website and am so excited to have found it and you. This particular comment (and info on Magnesium) really grabbed my attention. I have just been diagnosed with Erythromelalgia. Pls forgive me if I am not commenting in the right place, I am still confused with how to use the website.
It wasn't bad enough that I have fairly fast progressing PN so guess I now have two conditions. The PN isn't nearly as painful as the ERY in that it presents with numbness, tingling, stabbing, etc. but it is the ERY that causes the extremely hot burning feet (deep inside and the skin is involved too), the heat (feels like fire) actually leaves red marks on my skin after the episode has subsided. My doctor diagnosed me with ERY once I told him that heat (temp to weather, warm shoes, furry boots, hot sand, etc) and alcohol (the drinking kind) exascerbated painful episodes which can last from hours to days. This info might be important for others who are struggling with the same symtoms. I obviously try to avoid heat situations (i live in washington state so the weather is cooler here but still no guarantee) and I no longer drink. All this said it still does not gurantee new episodes, they still happen for whatever reason. I am currently working with a doctor in pain medicine at the University of Washington.
He (pain doctor) has provided more information in one visit than I got from all my other visits with my TOP neurologist. I have concluded that neurologists just diagnose and prescrib medicine to help with pain and tell you there is no cure and here are pain med's. They really don't try to work toward finding out why you have this or looking for new ways to manage the pain. I continue to search online for any and all information and again I want to thank you for all the information I have garnered from your webiste. It is invaluable.
I think I said this before......I am new to the site and hope I have responded in the correct way but if I haven't please forgive me.
In case you are wondering I am currently taking Gabapentin for nerve pain (it works better than nothing but lots of side effects. I also take Protriptiline. I was taking Nortriptiline at night but left me quite groggy and loopy the next day so have just started with the Protriptiline. Can't report how well it does or doesn't work yet. I think it's a very old med (my pharmacy had to order).
Thanks again and as others had mentioned until you find this site you think you are the only person in the world with this awful, dibilitating and depressing form of pain. There is simply no way to explain this to family and friends so that they understand, I hardly understand it myself. I have been incredibly depressed bordering on "not wanting to live anymore" as opposed to thinking of suicide (I do believe there is a difference) so thank you for all of you who share your pain, treatments, thoughts and ideas.
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Hi. I think I speak for everyone here when I say you're fine commenting here. A lot of us may have different diseases but the burning feet is what brought everyone together and you never know if you might have something that you might think is insignificant but it ends up helping someone else.
The internet (and this forum) have helped me tremendously. As you can see I started this thread in March of last year before I had a diagnosis. Mine ended up being Peripheral Artery Disease but over time things have happened that made me think there could be more to it than just PAD and I got that from reading what people wrote here. You might find little tips that you'd never think of doing that will help. You never know.
I agree with you on several points: 1. Your pain doctor helping you more than the neuro . I've always said, you have to find a doctor that is interested in your case, one that cares enough about it to really find out what is going on. Thankfully I found that doctor as well. And 2. Your comment about family & friends. It always sucked for me because I felt like people looked at me and said "you don't look sick, quit complaining!" And when all tests kept coming back ok, I felt like people would think I was just a hypochondriac. But I finally found a doctor and he said he thought I had some kind of circulation issue and even though it was a long shot he wanted to do a arteriogram just to see if there was any problems and sure enough, he was right. Over time we've found more narrowing blood vessels and "blockages" in my heart, lungs and carotid arteries so now they are looking into more of a small vessel disease.
I take lots of things unfortunately but the one thing that helped my burning feet is nifedipine! It's the best! It is amazing not having the burning feet anymore and I hope I never have to go without it. My cardiologist took me off of it for 1 month last November when I had some heart problems and that was the worst 4 weeks!
Anyway, I am rambling but please write us anytime, especially those times when you are feeling real down and depressed. There are people like you out there that are suffering too. Even if we all don't share the exact same diagnosis, we still understand your pain.