Good morning from Idaho
New to the site and bit nervous .Hope I’m doing this right .I was diagnosed almost a year ago .My flare ups are in my hands and feet daily and continue to get worse and much more frequent .I’ve been reading all the comments for months and I finally got up enough courage to join so nice knowing I’m not alone with this experience although I’d prefer that none of us have this to go through .my question …has anyone tried the gabapentin (I take 1200mg 3x daily ) and the ketamine cream ?
I was given gabapentin by a neurologist, who also told me my EM was all in my head, and it did nothing for me but did cause me to be drowsy and gain weight as well as have a mental fog. I got off of it as fast as I could. The ketamine cream seems more like a bandage as well. I think trying something that has a generally higher success rate and targets the problem is a better bet.
Thank you joeshmoe! I’m experiencing the same brain fog .my Dr doesn’t know a whole lot about EM but bless his heart he is really attempting to he’s the only one I’ve come across that really wants to help me and always reading into it in order to prescribe me with things people have tried .I go see him in few weeks any ideas as to what might work better I could mention ?Really appreciate you responding
Hi ams, and welcome 
I was the same, i read a lot of the threads here before I officially joined! And, i never really know if I am commenting “right” haha… I hope you can find some support and information that will help you feel better + less alone while dealing with this isolating condition.
I’ve tried the ketamine cream (10% and later at lower percentages…), and it was not helpful. It might have been hurtful, actually! My advice would be to try it on one side first + then compare both your sides. I did have some side effects from it (dizziness) even though I think the goal of the topicals is to limit systemic side effects, so just a heads up.
I did not have much relief from gabapentin. I just saw a pain doc yesterday who explained to me that he usually sees benefit from a combination (usually 3) medications all used at low dose (though I’m not sure if he was talking about EM or chronic pain in general). This way it’s not only more effective for pain (lots of complementary mechanisms being used) but less side effects. He likes zonegran (not used that much by other docs, I think, but a sodium and calcium channel blocker) and mexiletine as far as oral medication goes, amongst others. With the mexiletine, he commented that the dose might be dependent on the individual, and it can be sort of like an on-off switch at the right dose (more mexiletine won’t make you significantly better at the right dose for you). That many people can give up on doses that were too low for them, which I thought was interesting.
So I don’t know if you’ve ever tried layering meds like that? I reallllly hated the brain fog that came with gabapentin, and was really scared at one point when all a derm could think to do, was to ramp up higher and higher on it.
I find my best doctors to be pain docs / anesthesiologists (not derms or PCP’s) with this… And I also find having a couple different opinions to be highly beneficial so you’re not just relying on one doctor.
I hope today is ok for you,
best,
ps - a good med overview (sorry if you already have this)
Omgoodness! Thank you so much for responding and all the info ! I will Definetly discuss these things with my Dr .he’s my family Dr and he’s been the only one that has really been working hard trying to get all the info he can to help me .I’ve seen many different Dr’s and very disappointing results .neurologists.rheumatologist.chronic pain .etc .my Dr has also reached out to many as well for info and hasn’t had much luck .Its just crazy how little is known about EM .My flares continue to get worse and more often its truly maddening I have intense burning and itching. Once again thank you standing_cat for the info and kindness
Welcome,I tried gabapentin but stopped after a few days as I couldn’t function.
I’m taking 10mg slow release morphine tablets.
I take 1 iat 5 am and 1 at about 4 PM.
So far they are working and I have very minor pains when I take them but if I’m an hour late I’m in agony.
My consultant warned me it will be a long process to get correct doses of meds and the right combination.
Hope you find something that works for you.
I’ve also purchased 1000mg of cbd oil today and will be starting that before I goto bed so I will keep you updated.
Thank you Mikky321!
I know exactly what you’re saying about the gabapentin .feel like a zombie everyday and I haven’t noticed that its been of help at all .I’ve had really bad flare up today and still absolutely miserable .truly appreciate you responding and I feel I’m going to my next Dr appointment with some great new info ! My heart smiles with all the wonderful responses and kindness. And yes please keep me updated with the cbd oil I truly hope it helps !
The great thing about being on here is you realise you are not alone there are a few of us in the same boat.
Hooefully we will all find a combination that works
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I agree ! Its very nice knowing I’m not alone with this Mikky.And I’m definitely going to be talking with my Dr about other options and combinations
Over the last several years I’ve used many of the pills. I’ve also used several compound creams (all used Ketamine, some used Gabapentin) and various other ingredients. I also had Vicodin for those nights where nothing else worked.
As of now I have replaced all of this with CBD oil. I used the oil without THC in the morning and the oil with THC at bedtime. CBD oil is a little complicated. You can find a lot of information about CBD oil on the Face Book CBD Oi Users Group.
Hi ams i too am from idaho i live in boise i take 3200mg of gabapentin i want to believe it works i didnt like lyrica among other pain medications what works for one doesn’t always work for another good luck
Hi AMS, I was diagnosed about 18 months ago. Gabapentin just gave me side effects and Ketamine and Amitriptiline cream didn’t work. use Midodrine 5% compounded cream and get immediate results with pain, though the redness takes longer. Hang in there…
I meant to say “I” use Midodrine, not “use” it.
Thank you so much for the info Kcmiltong ! I’ve had another person tell me about the cbd oil as well .I will have to look into it .Here in idaho I don’t think I can purchase it but I Wil def talk to my Dr .Maybe by prescription .again thank you for responding !
Hi Christie ! Wow someone else in idaho ! My goodness I thought I may be the only one I live in meridian I appreciate your information .Did you have a tough time finding Dr’s that know of EM ? It was very difficult for me
Thank you Motherlove I will Definetly mention it to my Dr .Can’t express how thankful I am for all the wonderful advice and kindness !
Hi there,
I was diagnosed about two years ago. I started with lupus, and almost immediately my hands were flaring. My knees also flare. I also have fibromyalgia, so I’m much like everyone else - things just seem to multiply with autoimmune issues. I see my primary care doctor and I see a rheumatologist. Because he has only heard of ONE other person with erythromelalgia, he is very open to my questions about medications, and trying different ones. Unfortunately, this typically means I must research them first. On the plus side, he is almost always willing to try what I present as a possible option/combination. Gabapentin didn’t feel like it did much for me, and boy did it make me have a dry mouth and medicine hangover the next day. I found that if I took it at night, I would have to take it by 7pm in order to wake up at 6 the next morning. Additionally, I wasn’t clear-headed until about noonish. As someone who works full time, it wasn’t really a good fit for me. I know we are discouraged from using ice bottles, but cold water and ice bottles are sometimes the only things I can use that give me any kind of relief. I no longer go outside if the temperature is higher than 72 degrees. There’s a lot of things I’ve had to change about how I live. If I am going to visit someone I have to make sure they have a cool house. I’ve found that I have to be proactive about where I’m going and what the temperature will be. My family usually wears sweatshirts because I have to keep it cooler. I have to do my hair in shifts because I get too warm. It’s pretty frustrating, but we all have to figure out what might work for us. I can’t even write very much with a pen because my hands will flare. Crazy! Anyway, I wish you luck with finding what works for you, and welcome to the group!
Hi Traci!
I know exactly what you mean with the gabapentin its the same for me as well with being foggy minded the next day and having to arrange and plan for outings to family homes oh my goodness my big issue now is shoes! Any type of sneaker .boots etc set my feet off terribly I’ve wore slides all summer but its getting closer to winter months and as much as I need cooler weather I worry about the snow and ice and what type of shoes I will be able to stand .I also know about any kind of activity with hands also mine flare up easily
My primary dr is great he researches like me but he referred me to s cardio dr here at st lukes who said i was the 5th person he had seen in his 30 years i was referred for testing for other diseases i saw a hematologist i didnt care for him then saw a nuerolgist she new about EM she referred me to pain specialist between all of them i feel like there a good team
Gabapentin has been a life saver for me. First visit was given 300mg twice daily. 5 week follow up double the dose and so much better. Brain"fog" is a side effect for some people. I’d say give it a try and see how you do. I think the body adjusts. There is no miracle drug.
As for topical creams I us elidel and Rhofade twice daily. Just an fyi: my flares have been much less due to being off work for a different matter. So, stress is a trigger for me. I am already on a calcium channel blocker and beta-blocker for a different issue and have been on Cymbalta for several years. The last 3 meds mentioned were a known treatment plan some docs use. I am lucky to have found an intelligent derm MD who knew it was EM right away. And I still believe we treat the side effects to lessen them. There is not a cure, per se, as I was told by someone on this blog. If so, we could eradicate this disease. I am a Registered Nurse and tend to lean toward western medicine modalities. Just wanted you to know. Do what you believe is best for YOU. Lots of opinions out there and lots of “google” researchers!!