Thank you Monkey 
sometimes we just need to know we are not alone. Being isolated and deprived of any sort of normalcy takes a toll
I am so sorry to hear you are not feeling any change. Have you tried Bobâs Protocol?
Why wait so long? In the United States you can basically doctor shop until you find one willing to do the procedure you want. There are doctors willing to do lidocaine infusions.
I live right by Mayo and am unable to travel. My helper just quit today in fact and i havent been able to go anywhere for a week already. So unless mayo will do it im SOL
Have you tried mexiletine? I found that if I have been on mexiletine long enough and at a high enough dosage, lidocaine infusions do not add anything extra for me. I was told Mayo does not do lido infusions anymore ⌠but I donât know. Usually it is a pain doc (not derm) who orders infusions (at least at my local hospitals). good luck
I donât know what specific obstacles are in the way, but there are always solutions to issues obstructing things like travel. Perhaps help will eventually find its way to you. However, if youâre facing disability due to EM and havenât yet tried every treatment option described in medical literature (and lidocaine infusions have been written up in numerous journal articles), you havenât tried enough. Let no stone go unturned before saying youâre SOL.
Ok big shot. I have several disabling conditions and Iâve been at this for 18 yrs. No need to put me down. And no, there arent always solutions to travel. My feet swell up to three times their normal size when i travel. I have to be careful not to lose my ability to use the bathroom independently and that is a real risk when i travel.
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I havent! I will tell my gp, thank you for the info!
Iâm not putting you down. Iâm trying to lift you up. Even if Mayo wonât do the infusions for you, youâre not SOL. As long as youâre breathing, luck is still on your side. Have faith!
I once sat across from a doctor who asked me what treatments I knew of for EM. When I responded I didnât know of any, he said â âExactly. No one will be able to help you.â
It was devastating to hear. I had chosen him specifically because he had decades of experience. I could have accepted his opinion.
I didnât.
I had a good cry in my car, strapped my ice packs back on (in those days I carried an entourage of ice packs wherever I went), and went home to start making phone calls to find someone else.
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I really understand what you are describing. My feet are either frozen due to Raynaudâs or on the flip side once warmed up they look and feel extremely red, swollen trunks⌠With unbelievable pain. I am having to plan any journey I make out of my flat.
Exactly, any trip outside has to be budgeted for in terms of movement. I even have to time out going to the bathroom throughout the day.