I am new to the site and this is my first post. I have not yet found a doctor that knows how to treat Erythromelalgia, but I have a doctor who is willing to prescribe Gabapentin since Aspirin did not work for me. I've been reading through these boards and noting that even if some are helped by it, it works for the neurological pain (I presume that means the stabbing, throbbing pain?), but not the burning pain. I rarely get the stabbing and throbbing, but I am swollen and burning badly every day in my hands, feet, back, etc. What would be most effective for that? Thank you so much in advance for your help!
Hi and Welcome! Gabapentin did not work well for me. I am now on lyrica and cymbalta and that does seem to help.
I also take a medication called cytotec that acts as a vasodilator and helps me.
Some people do well with dilation meds and some do well on constriction meds.
It is very individual and you will need to do trial and error.
Wishing you speedy relief.
Amy
The gabapentin has worked great for me, I’m at 1200mg which is a low dose, and also taking cyclobenzaprine with it. Lidocaine patches also help WITH the medication, I have found. As gabapentin has a very short half-life of 5hrs (the time it takes for half of the med to leave the body), it works very quickly. Although there is a laundry list of possible side effects, I have had none.
I am new to this too! How are you coping? Have you been official diagnosed?
I’m headed to Mayo on June 9 for all the testing.
Amy said:
Hi and Welcome! Gabapentin did not work well for me. I am now on lyrica and cymbalta and that does seem to help.
I also take a medication called cytotec that acts as a vasodilator and helps me.
Some people do well with dilation meds and some do well on constriction meds.
It is very individual and you will need to do trial and error.
Wishing you speedy relief.
Amy
Thank you so much for your help. I'm having second thoughts about trying Gabapentin now. I'm truly afraid of all medications, but I have to get over that! I'm just trying to get started on the trial and error process while I search for a doctor who is comfortable treating me.
Thank you so much for your response. So, Gabapentin even helped with the burning and swelling, then? Lidocaine patches sound great, but probably are not practical while working! I'm glad to hear a positive experience with no side effects on Gabapentin.
TwinMommy said:
The gabapentin has worked great for me, I'm at 1200mg which is a low dose, and also taking cyclobenzaprine with it. Lidocaine patches also help WITH the medication, I have found. As gabapentin has a very short half-life of 5hrs (the time it takes for half of the med to leave the body), it works very quickly. Although there is a laundry list of possible side effects, I have had none.
Hi Amy,
Sorry to hear you are new to this, too and that any of us are trying to figure this out. I am right now at the stage where I am relieved to have a name for what it is and for after exhaustive testing, not yet having any more dreadful diagnosis to go along with it. At least not yet. It just seems that finding a doctor who will work with me is going to be tough and I dread that the coming months as I know last summer was awful... Not being able to do anything outdoors. But, then the winter is horrible indoors. I don't know. Lots to figure out. I have not been diagnosed by Mayo, but have seen many specialists in the last year (for this and other things that came up in the search for what was wrong with me) and the ones who know what Erythromelalgia is, agree with me as the features of what has been happening to me are the exact description of EM. How are you coping? How long did you have to wait for a Mayo appointment? I look forward to hearing how it goes for you.
Amy said:
I am new to this too! How are you coping? Have you been official diagnosed?
I'm headed to Mayo on June 9 for all the testing.
HI,
I called Mayo and faxed over my doc's referral. From that time, I would say 6-8 weeks.
Not bad at all! Like you I had been to many docs - derm, endocrine, neuro, rheum, Lyme... My symptoms included odd feeling in my feet - tops of feet were either hot or left foot would feel very cold. My toes started to turn red on 3/15 after a shower. Never swelling. Only red toes, but I feel burning or cold sensations in other areas of my body. Most trouble some skin area is currently on my thighs. My meds really help me. Not perfect, but much better than the horrid burning I used to feel. What are your symptoms and where do you live?
I suggest seeing a pain specialist - see if they will consider working with you.
Print out the handbook and bring it to your appointment.
I am planning on asking Mayo if I can try a stronger vasodilator.
I'm quite emotional about this diagnosis.
Are you working? Where do you live?
Amy :)
margal said:
Hi Amy,
Sorry to hear you are new to this, too and that any of us are trying to figure this out. I am right now at the stage where I am relieved to have a name for what it is and for after exhaustive testing, not yet having any more dreadful diagnosis to go along with it. At least not yet. It just seems that finding a doctor who will work with me is going to be tough and I dread that the coming months as I know last summer was awful... Not being able to do anything outdoors. But, then the winter is horrible indoors. I don't know. Lots to figure out. I have not been diagnosed by Mayo, but have seen many specialists in the last year (for this and other things that came up in the search for what was wrong with me) and the ones who know what Erythromelalgia is, agree with me as the features of what has been happening to me are the exact description of EM. How are you coping? How long did you have to wait for a Mayo appointment? I look forward to hearing how it goes for you.
Amy said:I am new to this too! How are you coping? Have you been official diagnosed?
I'm headed to Mayo on June 9 for all the testing.
1 Like
Hi Amy,
My symptoms began close to a year ago with swelling/edema in various body parts (first noticed in feet and ankles, then legs, knees, arms, wrists, face - wow- that's the first time I put together that it moved up my body that way) that weren't always red, but usually were. I was getting frequent severe headaches and extreme exhaustion and achiness particularly in feet/ankles and hands/wrists. I also have had intermittent dry eyes. The burning started around June and includes swelling, redness. I burn everywhere at different times, but mostly my hands/arms, feet/legs and back right now. For several months (August-November), I had bad episodes in my face with swelling, burning, etc. I am also often red without any burning/pain over my joints and my chest. I have been getting some heat rashes and hives, as well. By August, I was also experiencing a lot of episodes of feeling off balance and faint. I had one borderline positive ANA and every doctor felt that it had to be a Connective Tissue Disease, but subsequent lab work did not support any specific disorder. Blood work always showed that my inflammatory markers were high - particularly the CRP. A large swelling in my supraclavicular area led to a diagnosis of three herniated discs, two compressing my spine and a tear in my labrum in my shoulder. Of course, the orthopedist does not think the swelling has anything to do with these issues. I'm still not sure what that was, but it has significantly decreased. I think it may have been angioedema, but I'm not sure. Anyway, it has been a long and crazy ride. Right now, I am hoping for the best. And, I hope you will, too. Remember to keep in mind all of your blessings and know that you can handle this. Oh. And, I am still working. Two jobs. And I live in between NYC and Philadelphia (so I'm hoping with all of the great medical care here on the East Coast I can find a specialist closer than Mayo). How about you? Working? Where do you live?
I love your positive attitude! I definitely count my blessings as I have many!! I pray that I can handle this.
I have never done well with pain so that scares me. I do not have any swelling. It sounds like you may have a neuropathy and maybe not EM. I hope you can find someone to diagnose you as not knowing is tough.
I live in Northern VA with my husband of 18 years our two sons and our pups - yorkie poo and Greyhound.
I am currently on a leave from my job as the pain got pretty bad in my feet and hands and I found that the stress of work really made me worse. I was planning on going back to work last week as my meds have me well controlled ( for the most part - thighs are burning without redness on and off), but I learned that Mayo is going to want me off of the meds for testing. SOOO, I am going to wait until after Mayo to start back - once meds are re-started and stabilized.
I was working part time as a diabetes educator dietitian. I have been in the same field since 1992.
As you can tell, I'm not too young- 46 to be exact.
Tell me more about you :)
Hi Amy,
I sent a friend request to respond to you through personal message. I know these boards are searchable via the internet, so it’s probably best to keep identifying information private. 
Thank you TwinMommy,
I have been reading scary things about Gabapentin. You are giving me hope. No effects! That's great! I think I should back up and find a doctor willing to work with me on all of it as the Neurologist who prescribed the Gabapentin does not know Erythromelalgia at all. I might want to try the Lidocaine and I have to look up the other med as I've never heard of it. I am searching for a doctor in my area who can help. Thanks again!
TwinMommy said:
The gabapentin has worked great for me, I'm at 1200mg which is a low dose, and also taking cyclobenzaprine with it. Lidocaine patches also help WITH the medication, I have found. As gabapentin has a very short half-life of 5hrs (the time it takes for half of the med to leave the body), it works very quickly. Although there is a laundry list of possible side effects, I have had none.
hai…this is nehru…i didnot find a doctor who knows how to treat erythromelalgia,presenly im useing pregabalin ut that is of noo use im not feeling any difference…my feet,hands,face,etc are burning a lot…please can u recomend me anything that would be effective to me…plzzzzzzz
Gabapentin was a horrible experience for me–it took me about a year to realize how bad the side effects had become (had to continue increasing my dose because I wasn’t getting any relief). I’m on Lyrica now. I don’t have the bad side effects, but I’m not sure how much it’s helping. I’m also 2 months into the nightmare that is capsaicin cream. It’s a horrible treatment. I have to stick with it to see if I get any real benefit from it. But the treatment itself is beyond ridiculous in terms of burning. We’ll see.
Has anyone ever seen a naturopathic doctor? I just went for my first appt. I dunno. I’m really skeptical about these things, esp. b/c he has no knowledge of EM 
I have been switched to Gabapentin XR, which works for 24hrs. It’s great. I could not cope without it.
That is great. So much easier than multiple pills throughout the day. I just started a beta blocker and amitriptyline to treat autonomic dysfunction. I took 1 Cymbalta as the Dr. initially prescribed that with the beta blocker. The side effects were awful. So far, the amitriptyline has been super easy. Now, we’ll see if it helps. I hope you continue to feel better. 