New and undiagnosed

Hello, I am new to the site and need some advice. I am 60 and about 12 yrs ago I started suffering from severe burning feet at night which was mainly the sole of my feet. It felt like I had a 3rd-degree burn as they were stinging. I used to get out of bed and stand in the bathroom with my feet on the cool tiles. I tried putting my feet in cold water but as soon as I took my feet out they would burn even more Also my face would burn if I went into a warm atmosphere and cannot bear the heating on in the bedroom. I was suffering with an underactive thyroid so I asked the Dr what it was and whether it was connected to my thyroid but he just shrugged his shoulders and said he did not know. He said it could be my menopause but I had already gone through that. So I just put up with it. It is only in the last couple of months it has got really bad and my feet, ankles, and calves are swollen with red blotchy patches and the burning is worse. My skin on my feet, ankles has started itching like mad! I cannot bear it I feel I want to rip my skin off but the more I scratch the worse it gets. I have tried lots of creams but nothing works. The only thing that brings some relief is having a fan directed on my feet, I also soak them in cool water and Epsom salts which does help a little with the itchiness. I suffer with a bad back after lifting a patient when I worked as an Auxiliary Nurse. So with the bad back that makes walking any length of time painful and now this I just sit and cry. With the lockdown, I cannot see my Dr and I really do not want to go to A&E so I don’t know what to do and I am worried that I will get ulcers. Is there any medication I could buy over the counter that could help? Also, my right hand goes very red at night and very itchy and when I get hot or stressed I notice my back starts to itch and its like a prickly sensation. I cannot sit in the sun either. I have no faith in my Dr’s as they are just not interested.

I never itched…
I think what I remember as the first symptom that made me realize it was EM was I would lay in bed and my soles would burn so much I couldn’t sleep. I did not recognize the swelling in my feet because it was more puffiness than swelling although my ankles are puffy too, it was mostly my toes that I attribute to the EM.

My daughter and me both have thyroid disorders and I wondered if the thyroid had anything to do with it but doctors don’t know. She has it too.
I have lupus and sjrogen’s too and cannot stand to be in the sun either.
Have you been tested for any autoimmune disorders?

One day I was sitting in the doctor’s office and I looked down at my feet and they were purply red…so I took a picture of them. I lifted one leg up and that foot returned to normal. I took a picture of that and that is what I showed to the doctor that got me the diagnosis.

Thank you for your reply. No I haven’t been tested for autoimmune disorders. I came off my Thyroid tablets about 5yrs ago as Dr said my levels were near normal but I still have all the symptom of an underactive thyroid. My Dr did a Thryoid test and said it was fine but I later found out the test they do now is very basic and not conclusive. I asked them to do a more thorough test but told because of my age they would not investigate further. Now my feet, ankles and calves have gone from just burning on the sole to being puffly and the skin is red and blue colour. The puffiness goes in the morning but come back once I am up and about but the itch is there all the time unless I sit in front of a fan all day and keep them cool. I don’t sleep well so feel exhausted all the time. I know I scratch at night as I wake up with scratch marks that have bled. I can see the redness going up my legs and is halfway up my calves at the moment.When they swell up my skin feels so tight and feels like I have a heavy pair of boots on. When I flex my foot and toes they turn white which is strange. I really do not know where to turn for help.

So sorry you have to suffer so. I cannot help or suggest help for your itching, but as for the burning feet, EM, I have suffered for 15 years with this. Went to Stanford to be diagnosed as none of the local doctors had any idea what I had. Nevertheless, there is still no cure. However after much stress and dark thoughts and horrific pain, I finally took the advice and tried “Bob’s protocol“, which is soaking your feet in hot water three times a day. I know that sounds awful, it did to me, but finally got to the point where I would try anything. It worked for me. For over a year now, I have been able to walk and I am basically free of pain, except a little in the evening. You can find out more about this protocol on this site. Good luck to you.

Hi Patty, sorry for delay in replying but I have been so unwell with this but I have found some relief by putting my feet in cool water with epsom salts and soak for about 40minutes. I don’t know if I dare try hot water 3 times a day as any heat sets of the itching. I got some itch cream on Amazon which gives me a couple of hours sleep. My feet still go very red at night and if I press my finger its goes white and looks like the blood is just under the skin and moving about like two bags of blood. I am extremely tired all the time and fall asleep while watching TV. Hope you are doing okay?

Lidocaine patches you can get over the counter and they help me much better than cream. I do get the rx 5% ones but you can buy 4% ones over the counter. I put them on the soles and heals of my feet and with a fan I can some nights get some sleep.

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Has a doctor ever tried you on mexiletine? Mexiletine is the oral analogue of lidocaine. EM patients who have a favorable response to lidocaine typically have a favorable response to mexiletine.