Peripheral Neuropathy vs. Erythromelalgia

My Rx insurance is one of the private ones. It covers it but limits how many tubes in 30 or 90 days. It’s ridiculously expensive! I have a high copay for this Rx. The Gabapentin is for the burning pain , it does nothing for the redness or swelling . The Rhofade diminishes the redness temporarily, but does not eliminate it. Nothing completely takes way the swelling

And I can’t wear most of my shoes anymore. Had to buy larger shoes !

I only have Erythromelagia on both feet. The cream Rhofade that I put on my feet three times /day helps but only short periods of time, 2-3 hrs. At least I can go go my 2.5 mile walk every morning. The cream was originally made for Rosacea, a facial condition of redness and swelling. The cream is very expensive, my Rx insurance covers it partially. Have you seen a dermatologist?
I also have Sjogrens. Dry eyes and mouth. GERD and Raynauds. It’s all tied in under Sjogrens. I see a Rheumatologist at Johns Hopkins. I’m in MD . USA.

Hello from Canada I used to use this website for months then other things in my life so havent been on for a while. I am wondering if I have Erythromelagia but of face and other body areas. So this is my first search. I cant seem to find my way around her any more so found your comments - thankyou and sorry to read about your issues. I have dry eyes and mouth but old dr would not test for; have a laundry list of other medial issues, peripheral neuropathy, cancer, glaucoma and c.diff. Been in my bedroom almost 2 years and started to see light at end of tunnel a few weeks ago and got outside now have burning ears and face but not bright red and not feet.... goes over my shoulders etc and its been a few weeks and worse every day. So if not here could you guide me to another section here please? Only saw nurse practitioner yesterday but it seems to be worse from mid afternoon to bedtime . she has no idea yet what it could be .... sorry if this is a bit all over the place but a long day an where I live, bedtime. thanks if you do have a chance to answer and hope i can find this page again tomorrow! Wishing you the best. 🌷

Hello oh I just replied to a comment further down the page....as I didnt see the posts about the red hot pain on face which started with me a few weeks ago I used to come to the web site for months but havent been on for a while, dealing with other issues and now this! Its odd because i am a senior and didnt even go through hot flashes during menopause as had cancer of cervix and radiated all my insides so not used to even feeling hot but this burning in ears cheeks and goes down to my shoulders even my legs feel hot.... Sometimes my face is a big flushed by not always but the burning is somethin else and am sorry to read you have it..... sorry to answer your post of february and its now June 2022 an I find it hard to find things on this site as so much amazing information but I get lost.... I hope I can find this page tomorrow, as its bedtime if i can sleep with this pain on top of other issues I have Thanks.

Welcome back @lacy2, It has been awhile since you posted. I'm sorry to hear that you are having the burning pain. It's easy to find your last post if you get lost on Connect. Just go to the top and click on the profile icon, select Profile & Settings then click Comments at the left. Your most recent comment will be at the top of the list.

You mentioned seeing a nurse practioner and she didn't have any idea what was going on. Are you able to see a doctor for a followup appointment?

Hello John/all Yes missed being on here as so helpful but was going through an Application for MAiD in Canada and it was more paperwork/stress that I had anticipated, also a few more illnesses - all seem to be non life threatening but life altering. Also for 2 yrs my "doctor" was over phone, so I had to decide whether issues was enough to make the call etc. Also April last year had very bad attack (wont take time to explain but wierd) went by ambulance to emerge; dr on call said well, not a stroke, I said thats good news. But speaking to Neurologist about migrained a few months later he ordered MRI - our MRI machine being fixed so no one had one unless sent out of town for 11 weeks. Long story short, in Feb.2022 was told I had had a "small stroke". Anyway, such is life. I am printing your instructins for getting back on here, I am afraid my mind is not as sharp as it once was. After 2 yrs with no doctor Sept.1 got the nurse practitiner but went into the MAiD issue so it was a real mix up an I had a long list of health issues for her to deal with.... I feel I have aged 5 years in 2! But I still TRY and count my blessings. We dont have a neurologist here and one dermatologist works 2 days a week as wife ill but has hired a helper so Nurse said she would refer me to that office, but could be months wait for skin dr and going out of town, closest 1.5 hours away or Toronto, 4 hours - but with my ibs now fecal incontinence daily, multiple times a day surprise surprise I dare not embark on a long trip. Sorry for lengthy reply but I always did talk too much. It seems when I take a step forward I get another odd bodily problem and this burning face and other body parts no idea why... except already had peripheral neuropathy?? Things is I take as few meds as possible and drs. don't like that...... but have so many reactions and narrow angle glaucoma ....anyway will stop now and take a breath, so nice to be back here where there is help and guidance! 🌷 ps burning is not always red skin and not feet/hands which are always freezing, just other body parts in between! esp. face.

This is my fourth year living with EM,PN, Adrenal fatigue and more. EM has mainly been on my feet & legs. I started with all the medication the doctors through at me, and nothing helped! I was crippled, dependent on my family to care for me, and totally told by doctors to accept living in a wheelchair the rest of my life. But God put in my heart to search outside of the medication. So I listened to testimonies of others that changed their diet, stopped icing their body, and started getting circulation into the inflamed areas. I used a electrical tens unit called “The Vecttor”. Today, My routine is walking, biking, combined with elevating between. I am off all medication, I see a natural doctor and keep my supplements going, and use my Vecttor to calm the inflammation done. I am healing! It may take time, but things are so much better and I am not in a wheelchair! I am so grateful to my husband! Don’t give up!!!! God gives us hope😃

I'm living with same as you, the pain is unbearable Dr's seem to ignore my request for help anymore. When you say natural medicine do you mean functional medicine or naturalpathic?

Good morning and thank you for your post.
I have a Tens machine here as well, but wondered if you could say what your pad placement is when you use it?
I can’t find any info on that.....but I have heard it can benefit pain and circulation.
I also have found that, when I am not in flare, to keep moving as much as I can to bring fresh blood to the feet and legs. I will pay a big price in the evening just from walking down the beach. But when the flare finally stops it actually feels better, less inflammation.
Thank you 😊