Discussions By Condition: I cannot get a diagnosis.

erythromelalgia

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: spencer2009
  • March 16, 2009
  • 08:04 PM

:confused:My Doctcr has told me I have Erythomelalgis and there is no cure. I have been on so many meds and so far nothing has helped. I have had this for about four years but did not know what it was until Oct,2008.
You can get eroythromelalgia in different parts of you body, and mine is in my feet. Some people have this and it will come and go mine is constance. I have burning feet with intense pain. I try to walk and it is so bad can't do it. My feet will swell and turn bright red. I am hoping that some one out there that has this could give me ideas on how they
treat their problem
Thanks
Connie

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11 Replies:

  • Do you only have the swelling in your feet? No swelling around the ankles?
    Felsen 510 Replies Flag this Response
  • Did the doctor say if you have primary or secondary erythromyalgia? Are you currently on any medication?
    Felsen 510 Replies Flag this Response
  • thank you for getting back to me.My whole feet swell up and also get lumps about the size of a dime, but they come and go. It has not been a good week. I think this is one of the worse weeks I have had. Think it can't get worse but it does.I do take meds but none of it is working so far. amitriptyline and cymbalta. thanks connie
    spencer2009 7 Replies Flag this Response
  • Unfortunately erythromelalgia is difficult to treat. Sometimes it is secondary to certain blood conditions and if this is the case then it can be treated. If it is primary, it is difficult to treat, but nevertheless, certain treatments have been used. Unfortunately I don’t know so much about it. I was hoping that some of the doctors here on this forum might have some ideas. A hematologist or a neurologist might have some ideas. Sorry for not being able to help more. I have it only occasionally, I know what you are going through. I find some relief in wearing wet socks. Good luck! :)
    Felsen 510 Replies Flag this Response
  • Okay, Mitchell's disease in this instance is almost certainly secondary because the primary variant is a sodium channel gene mutation and symptoms would have appeared far sooner in life. The problem basically has to do with microvascular dysregulation that comes about in rare instances due to other disorders typically seen in persons as they age, ie hypercholesterolemia and in some instances, peripheral neuropathies. Also realize that some medications like verapamil or parlodel can cause the disorder to appear. Some success with mixed results has been observed using drugs that treat epileptiform disorders, which also work well in treating neuropathy-related disorders and can help provide pain relief. One such drug is neurontin. You could also likely benefit from taking an aspirin daily, which can help with the vascular side of things as well, depending upon whether or not you have any type of pre-existing GI problems such as active ulcer disease. It's important to note here that alcohol consumption can aggregate the condition to a great extent. I would also tell you here that specifically with a disorder like this, do not under any circumstances place your feet in ice water or cold water in the attempt to relieve the burning and heat sensations because it can result in vascular necrosis, which is a bad thing. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Thank you for your answers. I am not sure if I take the meds that is in the e-mail. This is a list of my meds.GEMFIBROZILPOTASSIUM CHLORIDERANITIDINEATENOLOAMITRIPTYLINEHYDROCHLOROTHIAZIDECYMBALTAZOLPIDEMASPIRINTRAMADOLThe Aspirn is 81mg, should I be taking more than thatTramadol does not work. I have no idea what to take for pain meds. My feet does better during the day. At night I have a fan on them it helps a little. The zolpdem puts me to sleep but does not keep me sleeping. I some times get up and go out and try to walk the pain away.Again thank you again for our help.Connie
    spencer2009 7 Replies Flag this Response
  • I forgot that my DR. has me taking 50000 units of vitamin D once a weekfor eight weeks. Don't know way called it in to drug store, See him next week. connie
    spencer2009 7 Replies Flag this Response
  • went to my Doctor today and still nogthing that he can do. Said I might try ice water and was told by other people no ice water at all, because you will end up with more problems also I think I am getting erythromelalgia in my hands. Wake up in the moring and my hands are blood red and swollen . any way hope not. thanks connie
    spencer2009 7 Replies Flag this Response
  • do not understand
    Suerverat 1 Replies Flag this Response
  • do not understandwhat do you not understand?
    spencer2009 7 Replies Flag this Response
  • what do you not understand?Please trust me I got this disease too, I m now in China seeing a chinese doctor and he is giving some chinese medication to boil then drink, sometimes u need some chinese medication to wash yr hands, boiling some of those medications and letting the herb's stream to stream yr hands, but at the same time, u have to take pills like Gabapentin and Valium to relax yr musules and nerves, but it got some side effects, like cramps, sleepy and tremor,..HMMM,...If you do believe me, try some chinese medications and if you wanna come to China to see if you have any chance to get it better, let me know or add my MSN id: sumba11boy@hotmail.com, I got to see this doctor, coz he is one of my relative's friend, I m glad to hear you guys and help everyone, bringing some info. to you guys !
    Anonymous 42,789 Replies
    • November 24, 2009
    • 07:23 AM
    • 0
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