I was diagnosed with primary EM a year ago, when it became painful. I used to think it was funny when my hands went warm, but it wasn’t so funny when it started feeling like someone was jerking a knotted string through my joints.
I have also been diagnosed with Lupus, and the neurology team who diagnosed EM expected my rheumy to look for a secondary cause for EM. However, it’s a year later, and I’m in a month-long flare. After neurology directed me to my rheumy, she told me she’d never heard of EM, and after I asked if she could look it up, all she said was that the “treatment outlooks were grim.” So, at this point, I know more about EM than she does.
I went to my primary care GP and was first seen by an NP who gave me some kind of elementary school DARE lecture about pain killers. I then saw my regular GP, who is sending me to an allergist.
I did get my GP to send me to an actual Lupus clinic, so I’ll be seeing a rheumatology group who know what they’re doing (and at least have access to GOOGLE). Neurology has tried amitriptyline, gabapentine, lyrica, aspirin, and lidocaine patches.
I want to chop my hands and feet off with a chainsaw, but now I’m having flares on my face. Does anything work?
I’ve recently tried taking 500 mg of magnesium on the
advice of one of the forums of this group. It certainly hasn’t stopped my flares, but they have probably decreased 50%, most notably at night. It took about a week and I know for others it has taken several weeks to notice the improvement but so far it’s the only thing that has helped. Don’t stop taking your other drugs though as it seems to work with them not without them.
Welcome, and it’s great to see you posting. You might like to check out the complementary therapies section of the community for ideas. Posting on any threads will notify the people on that thread that you have responded. That usually gets the party started.
As with any non-prescription therapy, always be sure to inform your doctors of what you taking and doing. This is particularly important in the case of supplements and and herbals, because there can be interactions.
We’re glad you joined us, and we hope that you will be too.
I’m willing to give this a try. Had this ugly stuff for 12 years. At this time have a pain pump implanted and so far no relief. Once a week they I increase the dosage I’ve pretty much run the gamit. Depression ìs becoming more frequent even though I take pills for that. I’m open to any suggestions. I’ve also had a neuro-stimulator implant recently removed . Worked for a few years and lost its effect about a year ago. Keep smiling Patty
Patty