Peripheral Neuropathy vs. Erythromelalgia

Posted by jlander @jlander, Mar 20, 2021

I am new to the Connect site so will have lots of questions but will pace myself! I have been reading about PN and EM. I don't understand the difference between them. When I asked the Neurologist who diagnosed me with EM, he said with EM your feet are red all the time. Can anyone else provide me with more differences please? Thank you!

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@gardeningjunkie

Thank you! I will definately research this vinyl sandal. All previous makers I had bought from have switched to EVA , a blended material, which will cause burning of my feet, especially the foot pad within a day.

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Yes, please check this out. I have thrown out the material, so cannot give the true content.
I like them as slippers, but I do find them hot after a couple of hours.
Wish you success.

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@thisoldewe

@gardeningjunkie
FYI: Birkenstocks have brought out a vinyl sandal that is flat and shaped the same as the usual Birkenstock.
No, I am not an owner!

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I followed up on the Birkenstock sandal you thought was vinyl. I can understand your confusion believing EVA or ethylene vinyl acetate is vinyl because it looks the same and has the word vinyl in it.
I am allergic to blended materials because an element from rubber, Mercaptobenzothiazole, MBT, which is used to accelorate the blending process. For example it is used in poly-cotton, elastics and such. I react to MBT. This element is never listed as the final material you contact. I can wear 100% cotton, 100% silk, 100%polyester, 100% vinyl for example because this element derived from rubber is not used making this material.
Still hopeful, in the past I have tried EVA footwear and sadly learned that by the end of the day my foot pad will begin to burn.

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@gardeningjunkie

I followed up on the Birkenstock sandal you thought was vinyl. I can understand your confusion believing EVA or ethylene vinyl acetate is vinyl because it looks the same and has the word vinyl in it.
I am allergic to blended materials because an element from rubber, Mercaptobenzothiazole, MBT, which is used to accelorate the blending process. For example it is used in poly-cotton, elastics and such. I react to MBT. This element is never listed as the final material you contact. I can wear 100% cotton, 100% silk, 100%polyester, 100% vinyl for example because this element derived from rubber is not used making this material.
Still hopeful, in the past I have tried EVA footwear and sadly learned that by the end of the day my foot pad will begin to burn.

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Thank you @gardeningjunkie
Sorry about the confusion. (The manager had the same misconception)
Interesting, re the fabric material... I too 'sweat out' with certain clothes... I will give this more attention.
All the best in finding the right stuff!

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@ell735

Hello, I would love to know where you got cold socks???Please I must find these...
I too have Raynaulds and it starts when ever there is a temperature change of just a few degrees .When I walk down the refrigerator aisle of the food store even if it is 68 degrees and my body was in a 74 degree area before that...After that I get Raynaulds my fingers turn white and get numb and cold....I then develop EM several hours later or the next day. First it starts with a bad headache then I know EM is on the way. My fingers and tops of hands get red itchy and very hot.My toes and bottom of feet get beet red and hot and burning. The headache and EM usually last about 3 to 4 days. Doctors at Stanford told me it a thermostat problem with the brain cooling down(Raynaulds) and heating up( EM) hands and feet( and some people face) Wearing sneakers and walking causes the feet to get hot and starts EM flare ups too. I stay away from MSG and salt and spicy foods, all alcohol, but still present with same problems but not as bad.My twin brother also has EM.I also have Ehlers Danlos which also is an auto immune disease... Lots of people who have one autoimmune disease also have several. I also have peripheral neuropathy in my feet and toes caused by the EM and circulation problem. I am 73 years old and thin and otherwise in good health other than these issues.
Please tell me where you got the cold socks. I live in Northern California ( SF bay area)where temperature is mild all year long. Could never live in very cold or very hot weather... ellen

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I prefer the soft socks sold at Dollar Tree only in winter
weave non irritating. No recall of sock fabric or name of manufacturer Also socks may have elastic I have no allergies or reaction
Do have same shoe issues with hard crease on feet
Can only wear sandals with my socks all year .
Have SCS pain relief device that makes almost all day free from sharp burning feet But still have intermittent night breakthrus. Sleep unpredictable since RLS and foot neuro seem to trigger each other. Patch of rotigotine mostly prevents RLS all day But night Neuro pain can trigger it and vice versa.

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I had what I thought was erythromelalgia for 20 years. My feet were so painful. I had it in the winter, not summer. I was finally diagnosed with chilblains instead. I started Nifedipine and never had another attack. My feet were reacting to changes in temperature.
I now have peripheral neuropathy from chemo, but it acts totally differently.

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Dear folks~
Wow~..it's not just me that appreciates all the info one can glean from these threads...so important for us all to learn and share our personal expierences.

My journey started about a year ago with my toe pads feeling like I was walking on tomatoes, as well as feeling kinda numb. Then it progressed to my shins..where certain parts of my lower legs felt numb enough to not notice a needle prick. After relaying all of this info to my PCP...he had me see.. a neurologist for testing. I scored high and was not considered to have PN...but yet...my heels burned...the bottoms of my feet, at times..would be beet red..and I could no longer go barefoot in the house. Now....my legs below my knees are feeling like I'm wearing extreme compression socks..and even when I tried to wear them..the discomfort was the same....tight..and being aware of my legs feeling heavy and tired. I tried more walking..doing 30 minutes on my treadmill walking for over a mile....that didn't help. It got to a place where I could no longer sleep more than 2 hours at a time..not getting restful sleep at all. I've had enough!! I saw my PCP yesterday and he gave me a script for gabapentin 100mg to start..for sleep....I got the script filled..but was reluctant to take it. I started to Google more about this condition and found a lot of useful help regarding red light therapy and it's 'healing' benefits. Well...a light went on in my head...as I have a red light therapy belt that has helped my upper back pain..it totally takes away that nagging, exhausting pain from my three compression fractures I have..without having to take any medications. So....I wrapped the belt around my legs yesterday...then I placed my feet on it for another 15 minute treatment...and OMG....my tight feelings and nagging feeling went away!! My legs felt normal...I wasn't feeling any sensations in my legs or feet! I did a couple more 15 minute sessions and I was able to sleep through the night without burning feet or being conscious of my legs!! I'll keep doing this treatment everyday now and hoping for more and lasting relief. I'll be 80 next month and rely on my own inner feelings about how I treat my body. I take numerous supplements and collegen and generally feel great. I didn't want to start an allopathic prescription that could possibly assist with sleep. I turned to homeopathic remedies and melatonin for sleep and I had the best night's sleep I've had in, frankly in a year!! OMG...I feel great this morning! My legs have minor discomfort..and I will do the
red light therapy soon. There is a lot of info on these therapies online....I can attest to it's usefulness on my back pain..and now I can already see the benefits on my legs and feet. I see that there are RL booties..not that costly to try out....I may go for those next..as trying to fit my feet on the belt lights doesn't totally cover my whole foot. I realize that there is no one panacea for everyone...but trying something that is non-invasive and is healing as well as not just a cover-up..but that real healing is possible..to get the blood flowing..just rings true to me. I wish you all the best and hope you can also feel the benefits of RL therapy...and no...I have no affiliation with any company that makes or sells these...I would look for one that gets lots of stars and informative comments on the good feelings one can achieve from using these. My best to you all!!!

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