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 The cream was originally made for Rosacea, a facial condition of redness and swelling.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.

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?

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 😊

Hi lili,
Yes on the natural doctor. Get with a doctor who will check your bloodwork, your gut, your diet, and find a direction and symptoms to start treating, which usually is effecting the rest of the body!😃

Hi wiedd
I get different locations from my doctor as circulation improves. Also the machine I use treats to the cellular level, promoting tissue healing. I’ll send an example. Keep walking, pumping those toes with combined elevation!
Tx Bren

I just joined Connect, and I'm finding many of your comments relate to what I'm experiencing. I was diagnosed with EM in 2012. Actually, I had symptoms for several years before that, and none of the doctors I went to could offer any explanation except that it must be a circulation problem! I did my own research and found out about EM, which a doctor confirmed when I gave them the research I had. I have since been diagnosed with peripheral neuropathy by a neurologist. My symptoms keep getting worse, compounded by the EM. This summer weather is especially challenging, with redness, burning and swelling feet on top of the nerve pain! I've tried many different medications and other treatments over the years. Currently I take pregabalin, and also supplements of Alpha Lipoic acid and B vitamins. Pretty much anything that is supposed to help with nerve health. I recently had a battery of tests by both a dermatalogist and a rheumatologist, and they where inconclusive. I now have to sleep with a fan blowing on my feet, and during the day sometimes the only relief I get is by soaking my feet in cold water. Not the best for skin health, but it's all I can do to feel at least moderately comfortable. I am open to any suggestions that have worked for others.