is anyone here from West Virginia or Virginia? I cannot find a Dr that knows anything about this disease. having Cutaneous Lupus and Fibromyalgia doesn't help either. no one has a clue how to help me. I have started on Gabapentin this week. Has anyone else found anything that helps. i have went into major pain going into my legs now this winter. Had the burning in my feet for 4 years now. Starting with the burning in my face also. Use various cold rubs on my feet like BioFreeze and Ben Gay Zero Degrees. don'k know what its like to wear a full shoe or socks as many of you know I'm sure. any suggestions will be appreciated!
Hi...I know you posted a while ago. Im not on the East Coast, so I can't help you with a Dr. But, I have EM, firbo and SLE - Lupus. Gabapentin did nothing for my zaps of neuropathy, I'm on Lyrica. Its not an easy med, as when the neuropathy and EM get bad, and I have to take more..it affects my memory alot. But its all that will make the pain barable. I haven't worn socks in 3.5 years. I love my huge ice pack that I can hide my feet in. My Rheumi says I'm the only patient who loves her little can of freeze spray. I'd take a case with me if she let me. I'll have to try BioFreeze and Ben Gay Zero... Send me a message if you'd like.
Thanks for responding. The Gabapentin seems to be helping my fibro more than anything else. My feet just seem to get worse. I am having dizziness with the med. I also have Gout in one foot. I had this for 2 years before I even found a dr who could diagnose it and his answer was, "you have Erythrromelelgia and that's all I can tell you. Go home and look it up on the net and read about it because no Dr here or anywhere around knows how to treat it." I have been dealing with this now 6 years with no help. Just what I can come up with on my own. I print out what I find and take to any new dr i go to so they know what i have and its really interesting to see their reaction. I have one dr who has studied it and say the info I have is better than any he has found and I am on the right meds. I also take Topamax. I wouldn't wish this disease on my worst enemy!
I’m also having a hard time finding a dr who knows about EM. Most of mine almost ignore the fact I even have it. The neuro blames my neuropathy on my Lupus, my Rheumi says that’s nonsense. I read,EM and neuropathy often go together, so since I had to I found EM on my own, and took my findings to my Neuro, I don’t think he’s looked into treating it much. Unfortunately, just trying to treat the symptoms dont work with this disease. You are right, it is a horrible disease & I too wouldn’t wish it on anyone. I posted on another thread,that I tight some med I was takeing was improving my EM. I think I spoke too soon…the weather is heating up and ive been miserable the past few days. All the memories of how bad this can get are flooding back and I’m dreading it. As for Gabapentin, I know a few folks on it and they say if you can stick it out, the dizziness symptoms ease after a few weeks. I hope thats the case for you.
I don't even go to a Rhumi dr anymore even though he did diagnose me. I would go and he would look at my feet and just say," Fascinating" and then say no Lupus, so I quit going and wasting my money. My regular dr treats me for it the best she can and my derm dr does my Lupus. I was actually hospitalized for 4 days a few years ago and put on iv antibiotic treatment before I got a diagnosis. My foot was so bad they were even talking about a bone biopsy. I was released and had to go for iv treatment for another week. They thought I had an infection. The Em has also affected my white count being high. I was sent to a hematologist and nothing was found, but later found documentation that this goes with EM. I have to be checked by him 2x's a year and my regular dr in between. It still gets off but hasn't gotten as high as then. I have found that this disease can turn into a type of Leukemia in some cases.
Have you found a doctor? I live in norfolk, va. I’m on Gabapentin too and am about to see the neurologist for my EM.
No, Jesse i haven't found a dr. I hope you can get some results with the neuro you see. My skin has started turning blackish on top of my feet now and its really weird looking and from what I have read its from the Eryt.. Between this disease and the Lupus its a mixed up mess of symptoms and pain. Good luck with your appt!
I am so sorry about your feet. My symptoms just started last month in my feet and my hands. My feet have most of the pain. My hands just burn allot. I have to keep my house quite cool so i don’t have as many flare ups. It’s seemed to help. I hope you can get done help soon for your feet.
Jesse, I was put on Topamax for my feet when I first had the problem and it helped. Also aspirin is recommended if you can take it. I was put on 325 mg, but had to stop it because it made me have gout flare ups. Maybe this is something you can discuss with your dr. I still take the Topamax and 81 mg aspirin. Just start with a lower dosage on the Topamax and build up if they do put you on it. Good Luck!!
I’m already on Zonegran (which is like topomax) for migraines and on Gabapentin for the flare ups. I’ve been on Zonegran for about 6 months now but only on the Gabapentin for a few days. Thank you for all the advice. I need all i can get right now.