Lizzi and Starsmurf. I am newly diagnosed. Typically I figured out the issue via research and found several specialists tha agreed withme. Though they had never heard of EM. A dermatologist confirmed it 2 months ago and stated it was very unusual. She trained at Mayo. and saw 3 or 4 cases. But has not seen it again in her 15 years of practice {Lexington, KY}I have not posted my story but hope to soon.I am tryingto come up with a way other then my cell phone and PC to type extensively. So I keep most things short. Gets very painful. Anyway..I had never seen the subsets broken down like this..may I ask what your resouce is? I would like to share this with my physicians. It was very interesting as I have always been told how bizare it is that my skin color and swelling..feet, hands, face..working it's way up all 4 extremeties. It changes in less than 2 seconds. A vascular surgeon {30 years experience} called me an enigma.. I am assuming my issue is vaso dialation. The hands were throbbing so badely..that it looked like I had a tourniquets on both arms. I even had veins popping out the side. It looked like I was in the early stages of a metamorphisis. Bright ed hans, ulging vens goingup and ACROSS my wrist and arms. But as usual I elevate my arms and in about 2 seconds..it blanches the veins diminish..return to normal. I can feel the blood draining out..it's like a whoosh..and then the pins and needles start. The reverse also happens. I lover my hands or feet..and in secnds they turnd bright red, swell and veins dialate. Not only is there burning but it often feels ike things will explode. Pretty excrutiating. I also have Raynouds... I have had serrous fluid leakng from my fingers..right side is much worse with hands and feet. If either of you have links to that infomationn about the subtypes.be awesome. Looks like I may need a beta blocker ang with the Neurontin..I am only up to 400mg at bedtime...but it seems like effectivenss is diminishing even as the dose is increased every few weeks. OOPS just reread your post and see calcium channel blockers..I was on Nifedipine..made it worse...as did aspirin. Where should I post photos and a video? When I finaly write my story.. THANK YOU VERY MCUH..nice knowing others are out there..I guess we are all very different. I have not read about issues quite like mine. Perhpas if I post ths I will find quite a few. Some re on youtube..my videos as I createdthem for the doctors. If you go to the sit and put erythromelalgia..and get to the posts by Cindy Style..That's me.
Thank you so very much.I ried accessing the articles you mentioned and do Inot see any link to archives or this article. Sorry when you have a moment can hou tell me how to get there? Thank you in the mean time, I’ll try google…my backup plan!
Ok sounds like that is what.must have happened . Thank you…and everyone else for sharing your knowledge …it really helps me keep it together!
Great news that Tegratol is working for you. My son took it and he experienced almost immediate pain relief. My husband and I were thrilled that there was a medication that could hep him. After being on Tegratol for 2 weeks, Drew broke out in a rash that looked exactly like Lauren's photos of her allergic reaction to Tegratol. It was incredibly frustrating to know the medicine worked for him, but then he had a life-threatening allergy to it! We have since started Drew on Mexilitene, and he takes clonidine as well.
TimR said:
I am about three weeks into Tegretol. Started with 600mg at night and just four days ago added 600 mg in the morning for 1200mg total per day. The burning in my feet was gone after 6 days and I am sleeping in my own bed again. Before this I slept sitting in a chair with my feet soaking in water. So, I am hopefully optimistic about the Tegretol although it is certainly too early for me to give you a long-term report. My neurologist says he has had very good results with a number of patients on this medication, so I hope it works for me.
Hi Cindy,
I can't give you a internet reference for the breakdown of the types of EM, as I got it from a conversation with my specialist. I will ask her if there is something written that you could take with you when you see the doctor.
On the subject of medications, I'm on 400mg three times a day of gabapentin (Neurotin) and I also take propranolol, which is the best beta-blocker for EM. You could ask your doctor about taking it and ask if the dose can be increased, even if it doesn''t seem to help initially, as long as it isn't making it worse. It could make your Raynaud's disease worse, so be careful with that. Some people find relief with statins or tricyclic antidepressants (especially amitriptyline) and I was once put on an ACE-inhibitor, which had help others with EM. I don't know if these would be effective in your case, but you could ask about them. Other treatments that could possibly help include lidocaine infusions or ketamine infusions.
Why don't you start a discussion asking if other members experience similar symptoms? You never know, there might be other people with EM who have the same problem.
CindyStyle said:
Lizzi and Starsmurf. I am newly diagnosed. Typically I figured out the issue via research and found several specialists tha agreed withme. Though they had never heard of EM. A dermatologist confirmed it 2 months ago and stated it was very unusual. She trained at Mayo. and saw 3 or 4 cases. But has not seen it again in her 15 years of practice {Lexington, KY}I have not posted my story but hope to soon.I am tryingto come up with a way other then my cell phone and PC to type extensively. So I keep most things short. Gets very painful.
Anyway..I had never seen the subsets broken down like this..may I ask what your resouce is? I would like to share this with my physicians. It was very interesting as I have always been told how bizare it is that my skin color and swelling..feet, hands, face..working it's way up all 4 extremeties. It changes in less than 2 seconds. A vascular surgeon {30 years experience} called me an enigma.. I am assuming my issue is vaso dialation. The hands were throbbing so badely..that it looked like I had a tourniquets on both arms. I even had veins popping out the side. It looked like I was in the early stages of a metamorphisis. Bright ed hans, ulging vens goingup and ACROSS my wrist and arms. But as usual I elevate my arms and in about 2 seconds..it blanches the veins diminish..return to normal. I can feel the blood draining out..it's like a whoosh..and then the pins and needles start. The reverse also happens. I lover my hands or feet..and in secnds they turnd bright red, swell and veins dialate. Not only is there burning but it often feels ike things will explode. Pretty excrutiating.
I also have Raynouds... I have had serrous fluid leakng from my fingers..right side is much worse with hands and feet. If either of you have links to that infomationn about the subtypes.be awesome. Looks like I may need a beta blocker ang with the Neurontin..I am only up to 400mg at bedtime...but it seems like effectivenss is diminishing even as the dose is increased every few weeks. OOPS just reread your post and see calcium channel blockers..I was on Nifedipine..made it worse...as did aspirin. Where should I post photos and a video? When I finaly write my story.. THANK YOU VERY MCUH..nice knowing others are out there..I guess we are all very different. I have not read about issues quite like mine. Perhpas if I post ths I will find quite a few. Some re on youtube..my videos as I createdthem for the doctors. If you go to the sit and put erythromelalgia..and get to the posts by Cindy Style..That's me.