i know ur going thru hell in a handbasket i been there myself have u tried cbd oil that helped me when i was in serious pain it takes the edge off a little and although it makes u feel a little zoned out its not bad enough to call it off everybody is different how they deal with pain and u can definitely try different amounts of the oil under ur tongue to come to terms with how much u take
dont give up stay positive and keep looking for answers
ANDY
Hi Gemgal.
Please see my reply on your email below.
West wishes,
Dragica
Hi again.
When your doctors look for someone who is an EM specialist, they might consider speaking with Dr. Mark Davis at the Mayo Clinic (see the link below).
He’s probably the leading expert in the US about EM treatment since Dr. Jay Cohen died. The Mayo is one of the most famous treatment centres in the world.
Dr. Davis was helpful to me in deciding whether to use the CREAM they use for healing wounds and reducing EM symptoms.
It’s a combo of ketamine and amitriptyline. They claim to have had great success with many patients. Here is a link to an article written about the results of the cream for EM by Davis and colleagues https://erythromelalgia.org/wp-content/uploads/2019/01/Poterucha-Topical-amitriptyline-combined-with-ketamine-for-the-treatment-of-EM.pdf. I think you should read it and send the link to the doctors who are treating your wounds. It might really work for you since its used as a cream and may cause less side effects than meds taken orally.
Here is the link to Dr. Davis—
Cheers,
Darlene
Thank you so so so much ! I am so grateful for you ! Thank you for sharing such amazing knowledge with me ! I will definitely do everything you’ve said here ! Have a wonderful evening ! 
Take care
Deanna
@Andy thanks so much ! It’s just been so absolutely awful ! I’ve never experienced such horrendous pain in my life ! 
with all the blisters breaking and getting so infected it just made it all so much worse ! Unfortunately I can’t use CBD oil I’ve had allergic reactions to it 
but I have some good doctors on my side now so I will keep marching along - thanks again. Take care 
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@Dragica I am in such a bad place right now ! The pain is almost unbearable ! I’ve been given so many medications and nothing seems to be working ! I’m even trying OxyContin which I really didn’t want to do but the tramadol wasn’t even touching the pain !
I’m so confused at times because The normal treatment for EM is to have your feet raised above your heart this supposedly helps with the edema and the pain however as soon as my feet are up they begin burning both with heat and nerve pain. I am unable to have any kind of compression at this time because the wounds are not healing they are so deep and so raw I feel like I’m never going to get rid of this Edema I am being told that there is not an infection in the wounds but they still continue to ooze a yellow/green fluid. I at least have Homecare coming in now to help with the bandaging but honestly my feet feel worse with the bandages on then with him off. I just don’t know what to do anymore. I passed on the information you gave me to the doctors who are treating me right now I am unsure of how well it was received. Most of the people that I have been referred to now seem very interested in the EM and helping me heal but it is such a slow process I had to sit for an hour and a half past my appointment time at the doctors yesterday and I suffered dearly for it. My nerve pain was so bad by the time I got home I was screaming so loudly that my neighbour next-door tapped on my closed window to make sure I was ok. I have ordered the books you suggested from Amazon but do you have any other advice on how to deal with the nerve pain?
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HI Gemgal.
I’m so sorry that you’re in so much pain. This is a very hard phase to be in. You just have to get those wounds healed. So, don’t give up—it will get better.
CLEAR pale yellow liquid (serous portion of bodily fluids) is the liquid portion of red blood. The pressure in feet from EM flares causes the serous portion to leak out when we have open sores. HOWEVER, if the yellow liquid is milky or greenish, then there may be an infection. Your homecare people should be able to tell you if you have an infection.
I found compression for swelling to be torture and elevating made it worse for me, too. People don’t realize that bandages hold in heat and make our flares worse. I finally decided I had to try another approach. Because I had so little skin left that wasn’t oozing sores, I actually used Kleenex around the top and bottom of my feet to cover them and then held them in place with a roll of “sports tape” (it’s a ultra thin open foam tape that people in sports use to provide support to their joints or hold non-adhesive bandage squares, e.g., Telfa pads, in place without adhesive). It’s very light and airy and doesn’t make it hard to walk because of lumps and bumps. Feet with serious skin problems are so delicate and sensitive to pressure. Any tiny bump or lump hurts sooooo much. Sports stores should have it (this is an example of this type of sports tape https://www.nationalsports.com/products/renfrew-tape-foam-wrap-blue?variant=21383310868559&gclid=EAIaIQobChMIsoihqP-H6wIVGaSzCh26lQX3EAQYAyABEgJHw_D_BwE#fo_c=2635&fo_k=1d8690795c1b8a5cd1da9f4b47d6d025&fo_s=gplaca&utm_campaign=gs-2018-09-20&utm_source=google&utm_medium=smart_campaign). Just make sure it doesn’t touch the wounds. I changed the Kleenex several times a day and it was definitely better than bandages. You can only do this IF there is no infection and if the floors you walk on are kept clean. You just roll it around the Kleenex or Telfa pad to hold it in place and I taped it shut with paper tape (or scotch tape if you’re desperate). I also found it helped keep my feet from swelling as much because of the slight compression.
Some people have found mild salt water footbaths to be helpful (dissolve salt into boiled water –let it cool to room temp and then soak for 5 minutes and let dry in the air). You can go online to find out how much salt to use for the soak. You can ask your wound specialist about this, too. They used to use this method a good deal before antibiotics were available, especially in war zones. It still works.
Again, low light laser treatment could heal things very quickly and the pain would be reduced, too. You said AHS—is that Alberta Health Services? If you do live in Alberta, are you near any larger city? If you email the Meditech people they can tell you who they may have trained with low light laser in your area. It’s worth the expense, if it heals your feet more quickly.
Remember, I gave you Dr. Davis’ info about the amitriptyline/ketamine cream they use at the MAYO EM Clinic. Talk to your doctors about the cream for the pain—I’m pretty sure that Dr. Davis told me they are using it with patients who have very severe skin breakdown with good results. Your dermatology people should know about this.
Re meds—pain killers, especially opioids, do very little for the nerve pain associated with EM. They work best for acute pain from surgery or recent injury. They are not meant for chronic pain conditions. That’s most likely why you are getting any relief form these meds. Because you have other health issues, that’s why I’m suggesting that you find out about the cream above.
I hope this helps. I know how hard this phase of recovery can be.
Best wishes.
Dragica
@Dragica thank you so much for your sympathy and compassion Thank you for the ideas as well I do have ketamine cream but it burns so bad if it gets in any of the open sores I will def ask about the LILT again…I had brought it up at my last appointment but it kinda got lost in the conversation.
Yes AHS is Alberta but I am 5 hours from the nearest big city and travelling is a nightmare for me ! Hopefully the opioids can at least put me to sleep tonight ! Thank you for your reply - I appreciate you
Show your doctors this article from the medical journal JAMA Dermatology.
@CarterDK thank you so much ! I will
For sure show it to my doctors !
You’re welcome. Sorry the ketamine cream burns so much. I wonder how the folks at the Mayo clinic deal with that issue? They have so many people with severe skin breakdown. It might be worth a very brief email to Dr. Davis (I sent you his Mayo info before). Or you might reach out to the Facebook group for EM people (EM Warriors)… They’re a fairly large group so somebody may have dealt with this before.
Take care.
Dragica
I am not a doctor, but if I was and had a patient that was going through what you are, I would assist them by searching out a doctor who may be able to help. Drs have a lot of medical connections and should be able to steer you in the right direction.
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