I have had EM for 12 years in feet and lower legs. I have been homebound for days on end. I am truly a strong person. I now have it in my hands and this is so hard for me to deal with. I just found out I am a Diabetic (started while using prednisone) I have a pacemaker and implanted pain pump (for back). There is more, but I won't bore you. I am just praying for some relief for my hands. I thank God for this web site. I truly feel so alone with this disorder.
Have you tried or are you able to take Neurontin?
I am taking 3000 mg neurotin it has made no difference in the pain. i also tried ketamine cream with no difference in pain I wish someone would find something that works.I talked to my pharmacist he said because it is considered a rare disease there is not a lot of money for research because the pharmacy companys will not get any return on there money spent.Pretty sad but that is the american way.
Dale
Oh my… Dale, did the Neurontin ever help? Does it lose efficacy over time? I’m up to 600mg per day right now, and my flares have been less frequent as long as I avoid triggers…
I am on Neurontin and it has been a lifesaver. I have been on the same amount for 3 years which is 900 mg in the morning and 900 in he evening. I just added another 200 mg in between the a.m. and p.m. I just started that today. I am praying it works. I am on so much medication for my heart etc. Thank you for responding to my question.
Dementra said:
Have you tried or are you able to take Neurontin?
No neurotin has never helped but every body is different. I keep trying I am going to talk to pain management doctor about a lidocaine infusion we will see if that helps.Has any one tried tramadol for the pain.my neurmuscular doctor wanted to no if i wanted to try it.
Dale
I to am almost completely bedridden if you find anything that works please let me know thank you so much
Dale
The pain in my hands is so bad, I can't take it much longer. I'm on prednisone, neurontin, fentanyl patches, darvocet, elavil, etc. If anyone knows of anything, please let us know. Thanks
Have you ever used Noxema? When my feet are really burning I will rub some Noxema cream and it helps to cool them down a little. I am not sure if that would help or not but of course you would have to be careful not to rub your eyes while it was on your hands.
I also have a cream that is made up of Lidocaine, Clonidine, Gabapentin, and Ketamine that I use of my feet. It helps but does not take the pain away. I also use Lidoderm patches on my feet.
I hope you can find something to give you some relief.
I have never had hand problems, it's all feet for me. Location, location, location! For me that's elevation. I have never tried any cream or lotion but now I will. I'm in a medical marijuana state and there a topical sold at the local dispensary. It couldnt hurt, I'll let you know.
Everyone is different when it comes to EM & what works to help us. Aspirin helps me when it is in my hands, Also putting them on a cold pillow which stays in the freezer until I need it.
Hi Dale,
They tried neurotin on me also with the same result. I have a medtronic pump inplant in my stomach the has marcain and a small amount of dilaudid, this controls the pain for me and allows me to function. Ask your pain management Dr. about this or contract Medtronic in Saint Paul Minn. for a Dr. in your area. Best of luck.
Tawna
Dale said:
I am taking 3000 mg neurotin it has made no difference in the pain. i also tried ketamine cream with no difference in pain I wish someone would find something that works.I talked to my pharmacist he said because it is considered a rare disease there is not a lot of money for research because the pharmacy companys will not get any return on there money spent.Pretty sad but that is the american way.
Dale
What about Amitriptyline and Ketamine cream? Anyone tried that? I've just started and can't tell yet.
I tried them both with no results but maybe they work for you I hope so
Just to let you know that I moved this discussion to the General part of the forum. I hope that will mean that you get even more replies!
Lynee, I'm new to EM and this site. I wondered about the A&K cream you started using (in 2012?). Did you have any success with it?
Thanks,
Anne
Lynee said:
What about Amitriptyline and Ketamine cream? Anyone tried that? I've just started and can't tell yet.
Tizzy, I am really confused trying to use this website. I never knew that you replied to my post yesterday. I just happened to be searching around again today and then I saw that you had replied 19 hours ago! I thought when a person got a reply, they would get some sort of notification.
I wonder how many other replies I had to various posts, but I don’t know anything about them because I never got notified.
Oh, good grief, now when I click Reply I get a bunch of XML! Your reply to me is appearing in this reply box within XML tags. First time that has happened!
I haven’t been checking my email regularly; now that I do, I see all the notifications of replies 
You would think that there would be a place on my page on this website where I could receive those notifications, and not have to use email to find out that I have replies waiting on me. I will get used to it in time, I’m sure.
Thanks for cluing me in,
Anne
Tizzy said:
Hi Anne - usually you get a notification via email when someone replies. Do you check those regularly?
Dale, I’ve tried the amitryptaline & ketamine cream 3Xs daily, on day 6, no results. Thought I’d give it one solid week before discontinuing.
I notice in your profile that you mention ketamine or lidocaine infusions. Have you done this? Any results?
I Am on This cream :you must wait 15 days before saying It is not efficient. For me It was 10 days.
Now i Am 90% pain free and i Can go to hammam !! Before This cream, i was on 50mg amitryptiline, 1800 gabapentin, and tramadol ...