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Idiopathic Neuropathy started with Erythromelalgia
The neuropathy in my feet is moving up above my ankles now., an my hands are getting numb.. I was being treated for Diabetes ll over the past 2 years with Metformin 2xday. Moved and have a new doctor now. So now it seems I don't have Diabetes after all.. My problems started about 15 years ago with hot burning red feet.. My husband an I figured it out to be Erythromelalgia before local doctors knew about it.. That changed my life drastically over the years. I suffered with it severely for a long time. Wore sandals, no socks.. used cold socks that I kept in the freezer to cool my feet off, and sat in shower running cold water over them in middle of the nights. Finally my ER attacked my feet when I was in the doctor's office, so it was so obvious something was wrong. He took a picture of them for his files.. but still no help with my pain.. Time goes by and one day when I arrived for appmt. my sugar level was almost 400.. That was the day I was given diagnosis of diabetes . Yet each time after that my A1C was 5.6... every time for several years. And the hot burning feet became more numb and is now going up my legs.. My hands do not feel when the shower water is hot now, so I test it by placing my arm up to my elbow under it.. Now, when I wake up in mornings my head hurts, especially on the top inside. Morning is the most painful part of my life. I just hurt everywhere.. Today I started by taking a warm, then warmer, shower.. It helped get me up and going and I plan on keeping this up. I take 90mg of Duloxetine daily, plus 20 Lisinopril, and continue with the Metformin. I am 81 years old, live in our own home with my 82 year old husband. He has A-fib, but still plays Pickleball 2x/week, has cut back to only playing 2 games each time. My main concern is what I might expect this Neuropathy to do to me.. Idiopathic? That doesn't provide me with any answers.. I know we all have to go sometime.. but I don't think this is terminal.. Just wish I could get some answers...
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Hello @brenday43, I don't think you are alone. There are a lot of us that wish we could get some answers. I'm 81 also and have been diagnosed with idiopathic small fiber peripheral neuropathy along with a few other autoimmune conditions. I'm fortunate that I only have to deal with some swelling in my legs due to lymphedema along with the numbness and some tingling but no real pain. I think just taking every day, one day at a time and keeping myself moving helps me get through the day.
There are a number of members who have started discussions or posted about Neuropathy and Erythromelalgia that you might find helpful. Here's a link listing the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=Neuropathy%20and%20Erythromelalgia
The Foundation for Peripheral Neuropathy has some good information on living well with neuropathy that you might find helpful here - https://www.foundationforpn.org/living-well/. I thought you might also find this YouTube video from Mayo Clinic helpful.
My neurologist thought I had erythromelalgia until I pointed out that my SCN9A gene is normal. Erythromelagia can be caused by other, yet-to-be-identified mutant genes. Unfortunately, this is of no use to me in terms of treatment. My neuropathy (burning, stinging, numb and hot feet and ankles) seems to be axonal based on EMG tests. I also have restless leg syndrome (RLS) in which my legs jerk while experiencing electric jolts, usually as I am trying to sleep at night. I have 3 mutant genes (SDHB, FBXL4 and SAMD9L), and I am told that these mutant genes do not "fit the profile" of any known Charcot-Marie-Syndrome (CMT) disease. My mutant genes encode proteins that reside in the mitochondria, an organelle in all cells that serve as the power plants for each cell, i.e., they produce ATP. In reviewing my medical records over the decades (I'm 69), there are a few things that stand out: my mutant genes are causing measurable mitochondrial dysfunction which is reducing my ability to produce enough energy for my cells to work optimally; I have low levels of WBCs, neutrophils and lymphocytes (causing measurable immune deficiency); and I have low levels of iron as indicated by ferritin and Iron percent saturation which means that many mitochondrial and other enzymes in my cells that require iron to function, are not functioning very well. I applied to the Mayo and requested evaluation by a team of an internist and selected specialists. They rejected me because I would use up too many of their resources which they would want to spread around to other patients. They recommended that I consult with local doctors which I have been doing for many years. If I could get help from my local doctors, I would not be applying to the Mayo.