I am testing a preparation of chinese herbs now, I will tell you if it works or not.
I have read this on the net, its seems interessant :
http://www.google.com/patents/CN104288595A?cl=en
Carine
Thanks for sharing Carine! I'm trying the topical Midodrine after reading the study from the Mayo Clinic here: http://www.erythromelalgia.org/Portals/0/Topically%20Applied%20Midodrine........pdf it appears to be providing benefit so far, however is expensive since its a compounding cream.
However, I'm curious about the article you posted. I briefly read through and it seemed like a ton of different ingredients, which ones are you trying? How are you making the cream?
I am not trying this preparation (I found it on the net but not try it).
It is my chinese doctor which has done mine :
shi gao 10%
mu li 10%
long gu 10%
jing mi 7%
fo shou 7%
qin jiao 7 %
hou po 7 %
Dan shen 7 %
Tian Hua Fen 7 %
Yan hu suo 7 %
Ci shi 7 %
Xi yang shen 5 %
Zhi mu 5 %
gan cao 4 %
gui zhi 3 %
It is for the heat and the pain. I boiled it 20 minutes in water then drink it 2 times a day.
In my preparation, there is Yan hu suo, which seems very intersting for neuropathic pain :
I am taking it for 4 days and I have same number of crisis a day but less pain.
Carine
As with all herbal and vitamin preparations the Mod Team here at Living With EM urge extreme caution as there may be interactions with other medications you take. And some herbs are down-right dangerous ... this is an unregulated field. Please always do your research and check with your qualified medical doctor/pharmacist before taking.
Some helpful resources are here in our information section: http://forum.livingwitherythromelalgia.org/page/the-pharmacy
Jules is right here that we don't know whether any ingredients would interact with medication we are on. Quite a while ago a friend recommended something called MSM to me. I asked my doctor about taking it and he had no knowledge of it and so I haven't taken it. I appreciate that we all get down hearted when we can't find anything to help, but we could end up far worse if we are not careful.
Caine. …can you give us an.update
Hi Brenda, my EM is worse right now , I stopped the grass, I see my Chinese doctor soon. I had 3 days of harsh pain, crying , but it is a little better . It always falls on the period before the Periods where the pain is much worse. I think there is a hormonal side that plays .
Carine
Hopefully it will help.
About three years into my mom's condition, I purchased some Chinese traditional herbal medication for her. There were quite a few herbs in it as well and it didn't work for her. But different patients react differently to different treatments.
Remember herbal medications can affect other medications one might be taking, so it's a good idea to talk with your health care professionals to insure there won't be any interactions from the over the counter supplements that could cause harm. Just a general thought to be safe.
In my mom's case, but this was a long time ago, the supplements didn't cause any bad side effects. They just didn't do anything for her case.
Hi, just some news to say that chinese herbs had not help me withe the pain or the symptoms.