@lynne4cobis thank you for the information 
I’m just amazed at the ignorance of doctors. Walk, seriously? Wrap them? Shows they know nothing about EM. Unfortunately you may have travel to find the right doctor. Once you do though maybe they can work with your local doctor. Good luck and don’t give up. We have all been there before.
God bless you. This is very tough to deal with and my nurses had never heard of it here in Scotland. NHS meds are free here, DG, so I get all my painkillers, bandages and creams freely.
Your case sounds so much like my experiences! I was finally diagnosed with EM and, since I also had other issues that the same doctor diagnosed, I was put on Hydroxychloriquine and it seems to have helped the Lupus as well as a vaculitis and the EM. I still use a fan whenever I’m sitting in the chair or when I go to bed. I, like you, used cold water when they were at their worst but I found that that was not good for the skin and quit doing that. The fan is very helpful as long as I keep my feet moist enough by using lotions. I also use some essential oils. Peppermint is helpful and I use it full strength. Tea Tree Oil is the greatest for healing sores and I use it in a roller ball vial, about 10 drops with fractionated coconut oil to finish filling the bottle. I’ve had blisters and what appears like blood blisters but never to the extent of yours. I assume it’s the EM that causes my skin not to heal like normal. Or it could be the vasculitis or it could even be treatments I’m on for breast cancer. Whatever the reason, since I’ve been using Tea Tree Oil (melaleuca) the blisters, or whatever wounds I might get from only wearing sandals outside, heal up very quickly. Just be sure you don’t get any oils that aren’t pure.
Your doctor experiences are outrageous and I also have had several of those. I don’t know how they got credentials to be called doctors. The advice you’ve been receiving here is right on and you need to find someone that’s willing to help, not giving you the advice that’s so obviously uncaring. I’m astounded at some of them that have seen me and did not even look at my feet! They jump to the usual conclusions. If it’s a problem with your feet then it has to be some kind of neuropathy so they put you on Gabapentin. I’ve been there, done that. Was on that for over a month and all it did was make my Restless Leg Syndrome worse. It might help some but we all seem to have a lot of other issues at the same time so we’re all different.
@WoodArtiste thank you so much for this information and for your kindness ! I don’t think the gabapentin is helping and my nerve pain is off the charts 
Unfortunately the fan does not do a good enough job of cooling for me. I don’t put my feet directly in water because it was causing skin damage now I put them in extra large Ziploc bags like a sock and then dip my feet in cool water. I will ask a doctor about the medication you mentioned and I will try the oils - thanks again ! 
Yes it is just mind blowing and completely defeating ! I cannot tell you how many times I’ve left doctors offices in tears 
I am so frustrated but I’ve heard some great advice on here so I’m going to try all the suggestions 
@jswilcox2 thank you for your empathy and encouragement 
Be aware that it can take time to see results with Hydroxychloriquine. I was on it for months before thinking I could see improvement. When the virus came along I could no longer get it and was off of it for over a month, results being my feet began to get worse. But they improved quickly after getting back on it.
@WoodArtiste ok - thanks for the heads up
Hello there, it looks like you are in nasty pain, and really worried. A little outside the box on my idea… There is a book by Ann Wigmore, (Lithuanian) regarding her studies of wheatgrass. Internally and externally. I read that she used the wheatgrass pulpice to put on men from war that were going to possibly loose a limb do to infection, and was able to rid the infection over a period of a few weeks, (with improvement over a couple of days. Might be worth a read~ Much love to you, I know your pain, I have this (now) on the bottoms of my feet, the whole length down.
@Amazon_Princess that’s very interesting ! Thank you for letting me know about it
Thank you for your sympathy 
I’m sorry you are also suffering 
sending love and strength
Hi.
I’m so sorry you are suffering so much. I, too, had blisters, infections and ulcers top and bottom of my feet along with excruciating pain. Medication did nothing to relieve it. It may sound counter intuitive, but despite having very red feet when we have flares, many factors reduce the oxygen that gets carried to our skin cells. And that causes our skin to breakdown. Blisters form when layers of skin separate from each other because of the constant pressure and trauma. So first things first. You can’t really do much about EM until the skin lesions are healing. Because the lesions themselves trigger constant pain and flares and vice-versa. It’s the perfect combination for living in hell.
Fortunately, I happened to read Dr. Norman Doidge’s book,The Brain’s Way of Healing (available on Amazon) because I’m interested in new advances in neuroscience. One of the chapters deals with low-intensity laser therapy (LILT) and talks about the work that Dr. Fred Kahn has been doing in Toronto or more than 25 years (Chapter 4, pp. 123-159). This treatment has been used for more than 50 years in Eastern Europe and Russia. In the beginning, it was used primarily to aid post-operative healing of skin. It 's amazing how quickly wounds heal with LILT. Within 6 weeks of LILT treatment, my skin was no longer purple and mottled between flares and all of the skin lesions were healed over. Then, Dr. Kahn concentrated on working on the EM itself and it made quite a difference in my tolerance for heat, massage and exercise. I don’t know where you live but Dr. Khan has a training institute and there are many health care professionals available around the world with the training to use LILT properly. If you contact their main office, they can tell you if there is someone in your area (https://bioflexlaser.com/) [I don’t have any financial connection to Bioflex.]
I followed that with a course of clinically-based neurofeedback and neurostimulation that was similar to the PoNS treament described in chapter 7. This also helped decrease the intensity, duration and frequency of my flares and also helped with the autonomic dysregulation issues that I have. As a result, last year I was able to lower the dose of medications I take for EM (now very small doses of Lyrica and Cymbalta spread throughout the day). I sleep through the night. I no longer need fans or cool water foot baths during the day. I can go to a store and stay an hour or more. My feet may flare if it’s warm and I may feel some discomfort, but I don’t experience the severe pain and swelling. And when they do flare, they cool down fairly quickly on their own.
So, don’t give up. There is help and doctors who are willing to learn about EM and “strange” approaches they know nothing about. I wish you all the best.
Dragica
@Dragica thank you so very much !!! This gives me so much hope !!! I will definitely look into everything you mentioned !!! This is the best news I’ve had all year !!! Thank you ! Thank you ! Thank you !
HI Gemgal.
I’m so happy that my comments and experiences have given you hope. It is hope that will get you through this very difficult disease and the collateral damage to skin, nervous system and mental health. This isn’t a disease where there is a magic pill. It takes a multi-focus approach to cope with EM. I hope you can find a way to get your skin healed. It take s lot of patience. Try to stay out of cooling baths even in plastic bags (which is what I use before bed). It provides short-term relief in the short run but in the long-run it reduces your feet’s ability to regulate themselves. Eventually, you need cooler and cooler water to do the trick and soon you can’t live without it. Fans are better, but they dry out the skin. If you can find low-light laser that would be your best bet. By the time I got to Dr. Kahn he was afraid that I would lose my feet. He said he’d never seen feet as bad outside of trench warfare when he was the head of a field hospital.
For your pain, I suggest doing mindful breathing exercises and trying TAPPING. It’s a combination of cognitive-behavioral treatment with tapping on acupressure points. It kept me relatively sane during ties of terrible pain. It helped me to not be afraid of my pain, but to see it as an opportunity to rid myself of the pain and disease. Being able to make that mind shift was fundamental to handling pain without adding more meds. All pain has both physical and emotional components. Folks with EM and other chronic pain find relief when they deal with pain on physical, emotional (and spiritual) levels. Here’s a good source for learning how to do “tapping” (or Emotional Freedom Technique-EFT): www.thetappingsolution.com has videos that show you how to do it and has various free meditations. And Nick Ortner’s book The Tapping Solution for Pain Relief is also very helpful (at Amazon - https://www.amazon.com/Tapping-Solution-Relief-Step-Step/dp/1401945252 ).
If you have other questions, I would be happy to share my experience. I am a semi-retired health care professional and researcher. I work in the area of helping children and families build their resilience.
Best wishes for speedy healing,
Dragica
@Dragica I feel like you are going going to be my saviour ! I am so thankful that you are in this group and able to share your knowledge with me !
I am literally using cooling baths all day long now - it is the only thing that relieves the burning pain…I’m so afraid to stop using it…I fear I will lose my mind with the pain I’m in - I can’t imagine not using them. I find that if I have my feet up with a fan they get so swollen and tight. It feels good while I have it in but then when I go to get up I can barely walk. They feel
Like they will split open with each step aaah !
It makes no sense because elevating and cooling is supposed to make them better 
I do my best to wean myself off of them though…thank you again for everything !
Hi Gemgal.
I can really empathize with your pain. It seems like it will be never ending, but there is hope. My feet were very bad, too.
Re cooling baths—you can still use them for now until your wounds heal, but try not to make them too cold. Very gradually work on making them less cold—it may take a while but that’s OK. The cooling baths can slow down the healing of the wounds. The cooling baths are conditioning your feet to require it. The goal is to desensitize your feet to heat. Sometimes you can fool your brain (which controls everything) into thinking it is cooler than it perceives it to be by putting a cold towel around your neck and especially in the temple area. You might notice that when you wash your face with cold water it sends shivers down your legs. That tells the brain you are cooler than you are. The temples are the most sensitive to cold. When pain is very bad, you might splash your face with cold water or put cold water or cold packs against your temples. It really helps me when I feel warm and that makes my feet flare. It might help you. I discovered this by accident. It may be worth a try😊.
Re medication: Are you on any medications? Very small amounts of meds work taken several times a day tend to work better than a larger amount once or twice a day for many people with EM. Dr. Jay Cohen (now deceased) was the medical consultant to The Erythromelalgia Association (TEA). He is the one I worked with regarding medications. You can read about his approaches on the TEA website and they have a free downloadable booklet for people with EM—it’s very useful. https://erythromelalgia.org/
I started on very small doses of Lyrica (¼ of the lowest dose available) once a day and then very slowly increased until we reached a side effect that was not tolerable. A few months later we slowly added a small amount of Cymbalta once a day. It was the perfect combo for me. The Cymbalta cut down the swelling that Lyrica sometimes causes. A month after starting Lyrica I was able to sleep through the night instead of 1-2 hours per night and excruciating pain in between.
See if you can find someplace that offers Low-intensity laser—you’ve got to get your feet healed before you can move on. Many chiropractors and physios are using LILT to heal skin and injuries
Just keep trying. Most of us find a way to make things better by not giving up. We need to be very good advocates for ourselves by reading everything we can find online about this disease and new approaches to dealing with pain.
Good luck!
Dragica
@Dragica I cannot tell you how thankful I am for all your knowledge and advice ! It is just so comforting to know that there is someone who truly cares about the suffering and can give honest and helpful information! I have never dealt with such horrendous pain than the pain I’ve had from these blisters and the surrounding skin it’s been traumatizing
I have had to fight so hard for medical care the past 2 weeks and I have been treated so poorly it has been nothing short of degrading.
Seeing all your suggestions has given me such hope - thank you for that I will for sure look into and try everything you’ve said !
@Dragica unfortunately I cannot take Lyrica or cymbalta as I had serious side effects with them. I’m even having trouble with the gabapentin now too
I’m looking forward to trying all the other methods you’ve shared though thanks again !
Hi Gemgal.
Sorry to hear that you had serious side effects with these 2 drugs. Often the side effects are caused by too high a dose to start, especially in women. If you don’t mind me asking, what kinds of side effects did you have?
Cheers,
Darlene
@Dragica thank you so much for always being so kind my side effects with the cymbalta was that I was terribly dizzy and then the 3rd day I was on it I passed out about an hour after taking it when I walked into my kitchen and hit my head on a metal garbage can. They don’t know if I was unconscious from passing out or if I actually remained unconscious from hitting my head on the garbage can but I came too in a small pool of blood.
But I think you’re right that it was too high of a starting dose.
The Lyrica after being on it for a few months I started having suicidal thoughts, so I definitely can’t take it. I have been experiencing some success with the gabapentin helping the Horrid nerve pain I get so that’s a positive I have followed your advice and I’m using the cooling water less and less.
Instead I put my legs on a wedge that sits on my recliner and I have a fan blowing on my feet…it feels like it’s keeping my feet cool however when I stand up my feet feel terribly painful and tight and it’s almost hard to walk so I’m not sure why that is ???
I had a meeting today at the rehab department after being referred there by the head of ambulatory. I was referred because I went to the AHS department to file a complaint about the lack of care and support I was receiving from the doctors and nurses in emerge (I’m not sure if I had discussed that with you or not - I’ve been so highly medicated with pain meds my memory is foggy) Anyways the meeting went really well and I’m feeling much better about the future they used two different treatments one on each foot. The left foot has a silicone ag dressing with no border and there is an Edema netting over top of it up to my knee. The left foot has triad hydrophilic paste and thick gauze covered with a bum net. They are to be changed twice a week in outpatients. The goal is to clear up the blisters and eventually get me in compression socks to clear up the Edema. Both the surgeon and wound specialist plan on studying EM so that they can help me better and the specialist said she is going to try to find a doctor in Canada that specializes in EM…so I’m feeling a lot better thank you for your care
Take care
Deanna