I am 28 but have had EM since I was 9. I am putting my husband through school and have to work. the pain in almost unbearable if I don't take gabapentin. I am afraid of eventually becoming disabled from the pain. We want to have 3 kids and can't take all the medications that treat EM while childbearing. I am a psychiatric nurse.
Is worth getting the surgery to cut the nerves that transmit the pain.
If anyone has had the surgery or knows someone please tell me if they are glad they had it and why they wish they didn't. I know it's extreem but I don't know what to do.
I haven't had the surgery but my neurologist advised me that there is no guarantee that the surgery will work. I had sympathetic nerve block which temporarily blocks those nerves. I had some relief but not total relief. Which led my neurologist to warn me if I had it done there was the possibility that sympathectomy might not work for me.
Not sure if that helps you any but just wanted to tell you what little I know about it.
Doesn't that only block the big nerve(s) and not the small fiber peripheral nerves which are implicated in EM? I'm thinking it may only work if part of the problem is large fiber neuropathy or CRPS, but I'm not certain about that. I have heard of people trying the more temporary never block to test out whether the surgery is likely to help.
I've had EM since I was seven. The guy who diagnosed me told my dad (a doctor), "Never let anyone sympathectomise her". I had a trial one and it made the pain worse.
If you plan to have children you might want to think about being tested for the SCN9A genetic mutation that causes inherited EM. If you carry it, there's a 50% chance of your child having EM. It's very rare, even among us rare bods who developed EM as under-10s.
Don't give up on regular medications, there are several you may not have tried because you probably have Primary EM and that's very difficult to treat and doesn't respond to the drugs that often work with Secondary EM. Doctors often don't differentiate between the two forms when suggesting that a drug is helpful for EM. If you PM me with the drugs that have and haven't worked for you, I might know of some you can try, especially if you know which sub-type of EM (vasoconstricting, vasodilating or thrombocytic) you have. I know of someone with our form of EM who was able to have a child. She found that methadone gave her really good results, this was before pregnancy so it must've helped, the video is on the main page.
I hope that this helps, even if it isn't the answer you were hoping for.
I have not had the genetic test done yet. I am inbetween insurances at the moment. I believe I have vasodiolating because the area floods with blood. I know its not thrombocytic. I have tried:
asprin (which did nothing) ,
capcaisin cream (which made my feet feel like they were on fire all the time),
gabapentin (which works pretty well but you can't take when pregnant and I would like to have something that did not leave me so tired.
Effexor (I have taken for 2 months, I am giving it another month and then stopping if I have no results)
My problem is most medicines are pregnancy class c or d...meaning they think it may cause harm. And to be bold, I hope I don't offend you by saying... I would like to take something that does not affect my sex drive. do you have any ideas? starsmurf said:
I've had EM since I was seven. The guy who diagnosed me told my dad (a doctor), "Never let anyone sympathectomise her". I had a trial one and it made the pain worse.
If you plan to have children you might want to think about being tested for the SCN9A genetic mutation that causes inherited EM. If you carry it, there's a 50% chance of your child having EM. It's very rare, even among us rare bods who developed EM as under-10s.
Don't give up on regular medications, there are several you may not have tried because you probably have Primary EM and that's very difficult to treat and doesn't respond to the drugs that often work with Secondary EM. Doctors often don't differentiate between the two forms when suggesting that a drug is helpful for EM. If you PM me with the drugs that have and haven't worked for you, I might know of some you can try, especially if you know which sub-type of EM (vasoconstricting, vasodilating or thrombocytic) you have. I know of someone with our form of EM who was able to have a child. She found that methadone gave her really good results, this was before pregnancy so it must've helped, the video is on the main page.
I hope that this helps, even if it isn't the answer you were hoping for.
Hi. I signed this site just to be able to reply to your post. So, i had EM since my 25. I won't describe any details here not even all I went thru and all the hopeless moments. You all know it too well here. I simply tried everything with no success. I was told sympatectomy could help or make my EM worse. I was so desperate I underwent it with no more questions. I had a very good surgeon, I 100% trusted his opinion when he personaly told me it was going to help me. I underwent the surgery (both upper and lower sympatectomy) a year ago. Since the moment I woke up after that I'm completely EM free on my feet and hands. I still have EM attacks on my face and ears, but it's just sometimes and I always find it good to remember the horrible pain and the fact I dont have it on my feet and hands no more. This was my story. Sympatectomy can make the EM symptoms worse or it can give you full relief. I'm so grateful to my surgeon, to God and even to myself that I made the right decision. That's all I wanted to say. Sending you all lotta positive vibes, Liz.