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Old 04-19-2011, 06:45 AM #11
Rosie33 Rosie33 is offline
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[QUOTE=Alkaseltzer helps with the burning ( I have been using this for two weeks and so far so good) and steep regularly in Epsom Salts(this gives some pain relief also).
Good luck[/QUOTE]

I know I've read before about Mrs. D's post on Epsom Salts for some pain relief but could you please tell me exactly what you do? I've totally forgotten about it.....thanks!
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Old 04-19-2011, 01:17 PM #12
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Default Erythromelalgia- anyone currently out there with this Diagnosis?

I am new to this website and am so excited to have found it and you. I orginally was responding to a post by MrsD regarding Magnesium but not sure my post went through so will put it here also. My orginal post below. Desparate to hear from anyone else with this condition, also have PN.

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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Old 04-19-2011, 03:52 PM #13
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Quote:
Originally Posted by Rosie33 View Post
I know I've read before about Mrs. D's post on Epsom Salts for some pain relief but could you please tell me exactly what you do? I've totally forgotten about it.....thanks!
I only have PN in my feet so put around 1/4 of a cup of epsoms in a basin of luke warm water and steep my feet (sometimes for up to an hour but at least 30mins). This gives immediate pain relief which lasts for some time. Good luck.
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Old 04-20-2011, 08:14 AM #14
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Quote:
Originally Posted by malawigirl08 View Post
I only have PN in my feet so put around 1/4 of a cup of epsoms in a basin of luke warm water and steep my feet (sometimes for up to an hour but at least 30mins). This gives immediate pain relief which lasts for some time. Good luck.
OK, but add a bit of warm water every 15 mins or so.
Otherwise the water gets really 'cold' (room temp)
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Old 04-21-2011, 03:33 PM #15
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OK, but add a bit of warm water every 15 mins or so.
Otherwise the water gets really 'cold' (room temp)
I let the water go cold as it helps with the intense burning, am I damaging my feet more as the circulation will decrease in cold water?
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Old 04-21-2011, 04:11 PM #16
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To the OP:

I have SFN. I am not taking Gabapentin.

I am not an expert, but I cannot imagine that you would not want to get as much exercise — of any kind, no matter how modest — as possible. Even if this means that, on some days, you have to force yourself to move around.

It was foot pain that put me on the road to my diagnosis of SFN. After nine months of following the supplement regimen found on this site (mostly mrsD's recommendations), my foot pain is vastly reduced and, in fact, almost gone. I have experienced great improvement on the supplements, with only small setbacks. You will want to search through the site, but certainly B12 and magnesium are key for us.

Good luck.

P.S. I just finished my daily 50 min. walk up and down a steep hill. Walking and bicycling are where I am getting my cardio workout now. It is kind of pathetic compared to what I was doing in the gym only a year ago, but it's better than nothing.
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Old 04-21-2011, 04:15 PM #17
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I let the water go cold as it helps with the intense burning, am I damaging my feet more as the circulation will decrease in cold water?
Do what works for you. I just would avoid hot water. And too much salts. Too much would pull water out of the feet... and be counter productive.

I think the TIME in the soak is the most important thing.
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