@Browni I see a few doctors in the neurology department, the neurology department sees quite a few EM patients. However, I only see them once every year or year and a half so the big one for me has been my primary. With EM being so resistant to treatment methods, the best bet is to find a physician who you can see frequently and try treatments carefully and methodically. I truly believe that this is the best way to find something that works. Of course, ruling out secondary EM should be of utmost importance as a first step.
1 year update: I currently still take propranolol, mexiletine, cyproheptadine, and feverfew and try to use the capsaicin cream a few times a week before bed. The routine has become effortless now and I take my meds with breakfast and dinner which is easy enough. I have meant to post an update for a while but to be honest I feel slightly guilty talking about my improvement here since so many people are struggling. But I did make a rather rapid, complete recovery and feel that the methods I used should be on here to help others.
I made massive strides this past year and am 100% back to my active lifestyle with no limitations, even in the warmer months. While the medications and capsaicin helped me, the most significant improvements came through increases in activity. I started with long walks, fighting through the discomfort and then that turned into short 20 minute runs, these short runs turned into long 1-2 hour runs. My feet slowly improved with the desensitization. I also added in walking whenever I could, joined a mens basketball league, started wearing slippers around the house, sleeping with socks on, and wearing shoes whenever I left the house. I didn’t let the EM dictate my choices. I returned to a normal social life and started medical school which both forced me to train my feet to get used to being in a more dependent position for long periods of time. As my feet improved, so did my ears and knees. I realize that this is not a feasible thing for some people on this forum due to their pain levels but the most important takeaway from my recovery was that activity played a key role. Don’t let this thing knock you down, keep moving as much as you can.
Edit: The combination of activity with the capsaicin cream crucial to my improvement as well. The capsaicin cream would cause a burning sensation in my feet which would distract my mind from the EM. I think this neural desensitization and creation of a new pathway helped quite a bit. Capsaicin cream works best during the hot months because it will cause the most burning then, which I found leads to the best results if you can endure the cream.
Hopefully the second to last update: I am weaning off of the capsacin cream and mexiletine and am still completely symptom free. I am still taking a beta blocker for my blood pressure (switched to metoprolol so I no longer take a non-selective beta blocker for EM) and cyproheptadine offers coverage with my year long allergies. Both of these are rather benign medications but the capsaicin and mexiletine are strong treatments so I am hoping to be completely off of both by 2021.
I realize my contributions and activity here have been slowly diminishing and that is mostly due to wanting to put this behind me but is also just a byproduct of being back in school. I do check my inbox at least once a week so if anyone has any questions or wants any advice at all, I am more than happy to help. I am very busy this year preparing for medical board exams but this community helped me quite a bit while I was lost so if I can offer any guidance from experience or just general advice I am here to help.
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Congratulations, Joe!
What is your mexiletine reduction schedule? I’ve been taking one capsule (150mg) once daily since March.
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Thanks! My plan is to taper down to one 200mg tablet (normal treatment has been 2x daily) and see how that is tolerated and then stop completely if I can. Even so, taking it once daily would be better. The mexiletine has been the last thing that I have been tapering off of. I am starting the taper this upcoming Saturday. I am now off of the propranolol and take metoprolol solely for my moderately high BP and use the capsaicin cream 2x/week as opposed to everyday. After the mexiletine and capsaicin tapers are complete, I will be off all meds for EM. How has the reduction to one tablet per day been going for you so far? It will definitely be the hardest treatment for me to stop.
My reduction to one capsule a day has been successful. I haven’t had any flaring. I still have occasional paresthesia (pins and needles) at night if I get too warm while under bedding. Said paresthesia only occurs while I’m asleep.
I am likely to stay at one capsule (150mg) a day for the foreseeable future.
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Thank you so much for sharing! Your symptoms look so much like mine.
Congrats! I got the approval to dip down to 200mg 1x daily. I had not seen my EM physician at Northwestern in 1.5 years and apparently did not fill her in on my improvement, safe to say she was in awe that I am asymptomatic now. She doesn’t see any danger in being on mexiletine long-term which was an important question I had to ask her.
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You’re so much like me, Joe! I haven’t spoken to my doctor in like… 3 years? I haven’t seen him in person in 5 years! I think it’s kinda crazy they keep approving refills without seeing me. I guess they assume if there was a problem I’d contact them, since initially I was a hurricane of activity. I didn’t ask last year about reducing from 3 times daily to twice daily because my prescription already said “2-3 times daily.” I suppose I should have asked when reducing to once daily. He probably just would have said try it. After all, EM is very trial and error. If you seek to someday stop mexiletine entirely, you could go from 200mg capsules to 150mg capsules as an interim step.
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I was thinking the same thing that I could have just gone for it because it is all a giant experiment anyways. We did actually discuss switching to 150mg capsules but decided to use what I already have and that’s the 200mg. I view them both as the same if taken twice daily, the inconvenience of the mexiletine lies solely in the act of how often it has to be taken and it has to be taken with something of substance. If the taper down to one 200mg capsule goes well, 150 would definitely be the next step prior to complete succession.
Hello JOESHMOE
I am new to the site. I have MS and primary erythromelalgia.
I was wondering if you are open to sharing your doctor at Northwestern. I see a neurologist there for my MS but he does not treat erythromelalgia. While my MS is manageable, my erythromelalgia is flaring more and more. I need to take a new approach and would appreciate a referral.
Thank you.
Sorry for the slow reply. Are you sure it is primary first of all? Mine was assumed to be primary because I am young, it usually shows up early for primary cases. I have seen Dr. Driss in the neurology department once in person and once in a phone visit. I honestly can’t recommend it to be honest which is why I have been hesitant to respond. I scheduled the appointment with her when I was still stuck in the dark. I was put on a 1 year waitlist with her as well as mayo clinic but ended up getting into Mayo in 2 months. Mayo was more beneficial as they gave me the diagnosis and then I was able to take it back to my primary and start chipping away at treatments safely and systematically. That is the best way to go about it in my opinion. Frequent check ups while trialing treatments is what eventually led me to find the things that worked. It takes a year to get in with Dr. Driss and she primarily sees neuromuscular disorders but has seen EM a few times. She did prescribe me Mexiletine but that was the next drug my primary was going to try with me. With that being said, she is a phenomenal physician and has seen EM before so it might be worth a shot.
Thank you very much!
I was diagnosed by the Mayo Clinic in August 2019 with primary EM. I had always assumed it was secondary to my MS but mistaken.
I recently went to see my neurologist for MS check-up. My feet were in a terrible flare, so he witnessed it. He/I can’t figure out what has happened in the last 12 months that the EM has deteriorated. My ability to tolerate heat has gotten worse also. To rule out anything MS-related, I have recently had MRIs of my brain, cervical and thoracic spine. The MRI results were stable with prior tests (MRI tests are every few years). I have chronic and inactive lesions but nothing new to explain my intolerance of heat and increased flares. With my MS, my existing symptoms have gotten worse from original lesions but no new lesions.
Working with functional chiropractor, I have tried red light/infrared light and cold laser therapies. While it made no impact with my EM, I have had remarkable functional improvement with my MS. My neurologist feels that my weaker leg has gotten stronger. I believe it is directly related to trying light therapy.
In addition to increased flares with EM, I have developed digestive issues over the last 8 months (never an issue before), heat intolerance worse, terrible allergy season, increased fatigue, I get winded walking up a flights of stairs, and weird sensitivity to the heat from lightbulbs. My neurologist ordered autonomic testing with Dr. Driss. I don’t have an appointment with her, but she reads the results. Your post is confirming I am on the right path with another resource at Northwestern (many thanks again). Now, I can at least say to my neurologist that she does see EM patients.
I was offered autonomic testing at Mayo but it is too far away when considering covid and I do not want to wait.
Overall, there is something happening that is impacting more than just my EM. If I can figure what it is, I may be able to minimize my EM flares. I have to chip away at a bunch of things. I am slowly doing this with multiple doctor visits.
Recently, my doctor at the Mayo Clinic put me on a clonidine patch. It is better than their compounded cream but not disease-changing. I will wait until after the autonomic testing in Jan 2021 to figure out the next step.
Everyone here is so helpful and knowledgeable. i am scared to put my 2 cents in but you may want to consider testing for small fiber neuropathy. The test is a skin punch biopsy. completely painless takes 15 minutes in a drs office. it can appear in MS patients i was diagnosed 6 months ago and your symptoms sound like mine
Please, never feel
That 2 cents could just be the 2 cents another members needs to link up their own symptoms.
We all have to manage a rare condition, who better to get ideas on how to manage it all than people who are having to manage their own load/symptoms.
It’s everybody’s 2 cents worth that eventually adds up to a $ and makes this place what it is.
Merl from the Modsupport Team
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Hello, just wanted to chime in that I agree wholeheartedly with Merl. Always put your “two cents worth” in. This community has enlighted me more than any Dr. and has given me a sense of hope and strength that I wouldn’t have otherwise.
I have asked for a SFN test only to be informed that testing isn’t done in my area and that my Dr. doesn’t believe the testing/results are very accurate.
While I have read that treatment for SFN isn’t far from treatment of EM symptoms, certainly if there is an underlying cause, treatment of that could be helpful.
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Thank you for your suggestion. I will add it to the list to discuss with my doctor. I me with my neurologist for an MS appointment and we both feel my MS is very stable. My weaker side is getting stronger. The puzzle for me is the EM and open to suggestions.
Since I last posted, the doctor at the Mayo Clinic increased my clonidine dosage from 1mg to a 2mg patch. I have seen great improvement during the week when I am not rushing around and moving fast (flares are limited to when I wake up in the morning). Last weekend, the result was not so great after working out and being on my feet most of the day. That said, it has only been 10 days. I have an option of trying the 3mg patch but will wait until after my autonomic testing in January 2021.
The higher dosage of the clonidine patch has also helped my nasal breathing and the small blood vessels in my nose. My doctor said that clonidine was first used as a nasal decongestant explaining my improvement. I have rosacea and my skin looks great. I typically have redness in my cheeks during this time of year. My skin is very clear now.
The last piece of my puzzle is that I am 53. I do think my fluctuating hormones are influencing everything. None of the doctors really want to explore this piece.
Thank you for excepting me this group I have felt so alone suffering with em and so many friends and family don’t understand. I carnt work anymore I hardly go out of the door due to walking and pain . I live in Australia and the heat is unbearable and trying to sleep with my feet and hands on fire .
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Same here about the acceptance!
Thankfully, I’ve been able to manage my symptoms, but I am nervous about long term effects. I do get flare ups (and more recently because of the weather warming up) that look very similar to these here, and it was much worse before I got any treatment. It’s nice to know that I am not alone, and I will be contributing a bit more to this site as I see fit.
Hello fellow sufferers and everyone reading!
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Yes. I forgot to say I take benedryl
As my primary doc suggested that
Read my post written today… that states what is helping me . Have had EM forever and now am much, much better. Still some flares . Oh and swimming is a godsend for the feet and circulation. Skipping under water and heel walking and tip toe walking under water helps my feet and legs .
Some days great other times uggh. But now less flare ups .
Glad I am retired.
Everyone stay well!
Pati
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