Dear Friends,
Do your EM symptoms include both numbness and burning/pain, or just burning/pain? Does the numbness come before the burning, or what is your experience? What do you experience before the onset of symptoms? Is EM a progressive disease - have your symptoms grown worse over time?
Thank you for your responses- I'm trying to learn as much as I can (recently diagnosed).
With me it is a little itch followed by tingling usually in big toes or heels then progresses to whole foot most times with the swelling and burning /stinging needle pain. Can last for whole days or nights. Longest one was 20 hours, The flares alway start in the evening and continue late into the night. Sleep is as and when feet allow and is not restful. Flares have progressed now in that they occur at all sorts of times during the day, but evenings I can almost set the clock by them. Something to do with hormone changes I read somewhere.
Yes, my symptoms have progressed over time and my feet are no longer recognisable to what they were at the beginning. What started in my toes has spread to way past my ankles.
This does not mean that your EM will follow the same path - and I hope it doesn't for your sake. We all have different pain threshholds too and some may cope better than others.
Right now it is 3.30am here in England and I can't get to bed as my right foot is really going for it. Had a flare free day for once and managed to get caught up with some overdue paperwork as concentrating on it is hard to do when flaring, So today was a diamond day and the evening and night are stonel Don't know if I will manage any shut eye before it is time to get up but not holding my breath!
Best of luck, Tilly
Tilly,
Thank you so much for your reply. For me, the pain stops when I stop running. I cannot imagine enduring it for hours. I really admire your courage to withstand that! Did your symptoms progress quickly over time or gradually? I wasn't aware of the hormonal aspect. Is there any medication that you have taken that eases the pain at all so you can sleep? Best of luck to you and thanks again for our reply.
My hands and feet get itchy/prickly. Then they begin to burn. Eventually they feel like they are on fire if I can't stop the falre up. I don't have any numbness. Pressure, for example holding a pen in my hands or standing on my feet, greatly intensifies the pain.
Only the palms of my hands and bottom on my feet were affected when I was 9, but now at 28 my hand are affected in the shape of a glove and my feet all the way up to my ankle. I have found that having a bed fan really helps me to sleep at night.Gabapentin has really helped my with the pain.
My symptoms began over 18 months ago with tingling in toes and feet getting uncomfortably warm. Gradually got worse since then to how I described in my 1st reply. Courage can't be applied to me and how I cope with my symptoms. So many others here are worse off than me. If you really want courage then take a look at R Mikes page. You will find him pictured top of the members page. Now there is a man with real courage. My problems are as nothing to what he has gone through.
Nothing has helped with my pain but in desperation the other night when I was in a lot of pain I took 2 x 30mg codeine tablets which had been prescribed in June when I broke my wrist. They knocked me out for 6 hours. Trouble is, they depress your breathing and I have COPD which means my breathing is not good anyway. Also, codeine can be addictive so not a good idea to take regularly. Will ask my doctors advice on them for maybe a once a week dose just to get some sleep. Didn't get any last night at all.
I have an air conditioner in my bedroom to help keep feet cool. It has been worth the outlay.
NYCMarathon said:
Tilly,
Thank you so much for your reply. For me, the pain stops when I stop running. I cannot imagine enduring it for hours. I really admire your courage to withstand that! Did your symptoms progress quickly over time or gradually? I wasn't aware of the hormonal aspect. Is there any medication that you have taken that eases the pain at all so you can sleep? Best of luck to you and thanks again for our reply.
I have raynouds and ms. Symptoms started with numbness, pins and needles, tingling inf finger …toes…than feet. After a few months myright foot would go numb. I fell downstairs, walked around with a splinter in my foot all because my right foot was numb and felt like a club. Now I can have 1/2 of me be on fire and 1/2100 be burning. The numbness is predominant on my right side but it can also be dezcribed as searing cold. All my symptoms are sporadic with many triggers.
Thank you so much to each of you for your response. I am very grateful! Best of luck to you!!
I have neuropathy and find it hard to tell if the numbness and burning is from the EM or nueropathy. My hands and feet turn red and mottled and are hot to the touch. I'm new to this forum, although have had symptoms on and off for ten years. Was recently on high dose of Prednisone (150mg) once a week for three weeks. Definitely helped the burning in shins and feet. Stopped the Prednisone a week ago, and burning back, particularly at night. EMG's finally showed nueropathy. Do many people with EM, also have neuropathy?
I have both small fiber neuropathy changes on my biopsy and autonomic function tests and I also have EM. I have had EM symptoms since childhood but was just recently diagnosed. Mine start with itchy redness and then start to burn. I have symptoms in my feet, hands and ears. I get numbness after the burning. My flares are almost always from heat and exercise. I had to stop running b/c I could not feel me feet mid run. I could handle the pain but I was afraid that I was going to fall. I also wake up with "heavy feet". In the morning and the middle of the night my feet feel like cement blocks. Good luck.
It's interesting you have numbness after the burning- I am just the opposite. I have numbness that eventually takes over my entire foot and then the burning starts. The burning is agony. When I stop running after a few minutes the burning stops as does the numbness. I'm wondering if the numbness is a separate issue to the burning. It's very puzzling! Thank you for your response!!