for almost 2 yrs now i haven had daily flares. there is no preventing them, each and everyday … mainly focusing on my face and knees with severity and on my hands feet and ears but i wouldn’t say as severe (tho maybe it’s just easier to cool off those parts)
i had surgery last tuesday and the nurse explained how i needed to use the washroom once i woke up. the anaesthetic ‘put to sleep all my systems’ and how it would probably not have a bowel movement for a day or so… as my system was trying to ‘wake up’
as i was at home recovering i didn’t have a flare anywhere for almost a day and a half. i figure the anaesthetic also put my EM to sleep!!!
of course it didn’t last but it was the first time i had gone a single day without a burn.
That’s not surprising. You may have been given the anesthetic Propofol. While Propofol’s mechanism of action is not specifically known, Propofol analogs have been shown to act as sodium channel blockers. Pharmaceutical companies have been researching Nav1.7 sodium channel blockers for the treatment of erythromelalgia.
I currently take a sodium channel blocker that is very effective for me. Interestingly, the doctor who prescribed Mexiletine for me as a first line treatment for erythromelalgia is himself an anesthesiologist, a doctor of anesthesia.
Hi Carter, I saw my new pain specialist a couple of weeks ago and asked him if he you would consider prescribing Mexiletine as I would love to try it upon your recommendation. To his knowledge it is only used in Australia at present by Vets on cats and dogs. He will get back to me in another week or so. He told me not to get too excited because it may not be possible to access it here. Just thought I would update you. Hope you are well.
Hi cherry, have you noticed more stress in your life in the last two years then in the previous? I have had this condition for approximately 40 years and have noticed with every decade unfortunately there were more stressful events in my life, like other medical diagnoses, The death of my husband and other major life traumas. I’ve noticed the flareups worsening, spreading and becoming more intense. In my case I can pinpoint. Is this something that you are able to pinpoint to? Hope you get some relief soon.
It does appear, based on others comments by community members, that mexiletine is not available in Australia. Lidocaine infusion may be a comparable treatment option. Mexiletine is considered the oral analogue of lidocaine, which is also a sodium channel blocker. I’ve not had a lidocaine infusion, but there are reports in the medical literature of the two being used together. (see link below)
I wonder why it is not available in Australia for patients like myself? Does that mean that it is not even possible to bring into this country to trial it? I was thinking perhaps I could send one of my caregivers to America to bring back One years supply if that was even an option. Thank you for updating me. So disappointing though, it feels like Australia is very behind other advanced countries.
In addition to mexiletine and lidocaine iv, I think carbamazepine and ranolazine are sodium channel blockers as well used in neuropathic pain and similar conditions. (Note I am not a doctor My sense from EM groups is that lidocaine iv is “stronger” than mexiletine – ie, someone may not respond at all to mexiletine but get a response to the lidocaine iv, at which point mexiletine can help prolong lidocaine’s effects. … again i am not a dr
I am in the US and one time my doctor wrote a prescription, sent it to a Canadian pharmacy, which mailed to me the drug. (Since the drug was not yet available in the US but was in Canada.)
Thank you so very much for your thoughts and suggestions. It does make good sense to have the infusion first. I had a Ketamine infusion two years ago for CRPS and it went horribly wrong. But perhaps the same thing won’t happen second time round.
Cherry - I had a procedure and was given fentanyl iv. For that night I actually felt normal. Totally tolerant to heat, and even felt like my old self again. It was amazing + bittersweet. Unfortunately lasted only the rest of the day. Anyway i remembered your post and so wanted to comment.
heat tolerant… the sound of that just seems so sweet! i remembered those hours and just sensing my body was different. i began crying when i realized how long it had been without a flare… i was so elated! and then even the crying didn’t turn into a burn! it was amazing.
Yes, I totally understand how you cried. I am burning like usual today at nothing, just existing. While the break was nice, it is hard to return to the usual, daily burning. However, it gives hope that maybe my body can remember what it feels like to be normal (pre-burning!). I will certainly tell my pain docs about it, and see if they have any ideas.
I dont know why, but the experience made me more inclined to want to try a ketamine iv. It was suggested to me by a doc but there is currently a shortage in my pain mgmt center.
If you remember your anesthetic that day, I’d be interested. Take care. PS crying will make my face + ears erupt too usually lol.
Hello Hope,
This mail comes at you from an American Ex-Pat living in Switzerland, life-long EM sufferer. I was browsing the site and stumbled over your exchange. When I saw that you’re in Australia and evidently also recognized the stress/EM relationship, I wondered, if I could refer you to my long post under " Diagnosis & Management" inside this forum category, where I had such great results with Australian Lamb skin and Chinese Silk in terms of managing my flare-ups or, as you call them, burns.
Beta Blockers killed off any sense of stress for me. Pelts, fur, silk are the materials I am literally surrounded with all day in bed and at home, sleep and clothing. My flare ups and temperature issues are almost completely under control and totally manageable by now. Maybe that could be an avenue for you too to explore… find more detail in my post…
My sense from EM groups is that lidocaine iv is “stronger” than mexiletine – ie, someone may not respond at all to mexiletine but get a response to the lidocaine iv, at which point mexiletine can help prolong lidocaine’s effects. … again i am not a dr