Ugh.
I’m sorry to hear that.
While there are documented cases in medical journals of Mexiletine being very successful in treating Erythromelalgia, I seem to be in the minority here. At least a half dozen have tried it because of my story and not had a similar response. I think there was one woman who said it helped.
I hope you are able to find another medication that is beneficial for you.
Sorry to hear that !! I hope you find something that works for you soon! Have a nice weekend !!
Hi Carter, just wanted to say “hi” and ask how’re you doing?
Thanks for asking. There is not much new or different with me. I’m doing relatively well. How about yourself?
Hi Carter,
If I remember correctly, you have EM in your knees, right?
Yes, I have it primarily in my knees. I think the lesser symptoms in my feet are related.
Ok, my biggest areas are my thighs and knees too.
Feet are toes.
I’m going to Hopkins next Monday.
Praying I can try something.
Keep us informed how your appointment goes. My symptoms line up with areas where there is bone — patella at the knee, malleolus at the ankle, and often like streaks with the metatarsals in the foot. I can only feel the symptoms at the knee and foot though. The symptoms at the ankle have no sensation and only appear if I take a hot shower. That’s not unusual though. Mexiletine blocks most of the sensation in general for me.
Hi Carter, it’s sounds like you’ve been pretty cool. I hope that’s still the case. I’m still taking 150mg Mex morning and night. The CBD oil has vastly changed my quality of life. Still taking 150mg Lyrica a.m & p.m. New side effect-walking into walls. Oh well, you can’t have everything. Toodles
I’m glad it sounds like your quality of life has improved, Satochan. I continue to do well. I just got back from vacation. I’ve been taking Mexiletine twice a day recently, rather than 3 times a day. It’s a lot easier than 3 times daily with food. I’m also still taking Propranolol, but only semi regularly, every other day or every 3 days. If I skip a day it isn’t a big deal. Unfortunately, I can’t stop the Propranolol entirely without making symptoms worse. I did get symptoms ocassionally on vacation, but they tend to look worse than they feel and go away once my legs are no longer in a dependent position. Overall, it wasn’t a problem.
Walking into walls? Yikes. That doesn’t sound good. Be careful with that.
Hi Carter, I tried taking 100mg of Lyrica in the morning but was flaring at noon. Did I tell you that the Mex makes my fingers tremble? So strange. If I’m meeting friends for lunch, I just don’t take the morning dose and am normal. So bizarre. I’ve decided I’m not going to fool around with my meds and the cbd oil any more. I’ve reached a livable (most of the time) amount of pain and I’m happy with that. I hope you continue to improve. Patricia
Ugh! I’m sorry to hear that. I don’t have that problem with Mexiletine. I’ve had Essential Tremor since adolescence, a benign neurological condition, but Mexilitine doesn’t worsen it. Since I regularly take Propranonol now, which helps ET, my tremor has been well controlled.
I don’t really have any consistent pain either.
I finally tried Mexiletine and unfortunately it did not improve my EM symptoms. It did cause some stomach issues and insomnia though once I began taking 150mg twice a day. It is so disappointing as I know it has dramatically helped at least a few others.
It is perplexing to me how EM that is not secondary to something else does not respond to various medications consistently in people. Why do sufferers find relief in such a variety of pharmaceuticals? From anti-depressants to anti-seizure meds to anti-arrhythmics and so on. I’ve been trying to think of another medical condition that is like this. One would think that whatever neurovascular dysfunction is present in people with EM would respond somewhat similarly to any given medication.
I sure hope someday somebody figures this out.
I’m so sorry to hear you were not helped by Mexiletine, nwgirl. While disease is never welcome, I do feel very fortunate there is medication beneficial for me.
It is frustrating EM seems to have such varied responsiveness. One possible cause for that would be we don’t all have the same thing. It is a major assumption to presume we do. There is no standardize blood test for EM. We’ve all been diagnosed (or self-diagnosed) through observation only. I think I probably have erythromelalgia, but am not 100% certain. It was a diagnosis of exclusion, which does not necessarily account for the unknown.
Thanks Carter - so do you think that EM should possibly be defined as more of a symptom (or a collection of symptoms) that could have a variety of causes rather than a disease unto itself? For example, we could all experience headaches that feel similar but the causes of the headaches could be completely different. It’s like when you go onto the Internet to research some commonplace symptoms you’re experiencing and you run the risk of thinking you have something fatal because so many diseases, both minor and major, share the same symptoms.
That is an excellent question, nwgirl. There is certainly a variant of erythromelalgia that is a disease unto itself. However, most cases are not classifiable as such. In instances where a concomitant disease state exists, such as Rheumatoid Arthritis or Fibromyalgia, I would guess most cases are a secondary symptom. There are still others though who don’t easily fit either pattern, previously healthy individuals with no familial history and adult onset. Even more mysterious are the episodic outbreaks of erythromelalgia in rural villages in China.
If I had to hazard a guess, I would bet most here either have erythromelalgia secondary to a pre-existing condition or are misdiagnosed and don’t have erythromelalgia at all. Some may even have erythromelalgia secondary to a disease state not yet apparent, as a leading indicator.
Logically, however, the simplest explanation for the disparate responsiveness is that we simply don’t all have the same condition. The symptom set, while seemingly similar, is likely triggered by varied causes.
I agree Carter - it must be that our EM symptoms come from a variety of different causes and that while a given medication might help with one of the causes, it might not help with the others. I am one of the previously healthy ones (actually I’m still very healthy with the exception of EM) with no family history and adult-onset. Makes it impossible to understand what’s going on.
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For me at least it is an extremely frustrating feeling that things are so trial-and-error – I feel like doctors are just throwing the kitchen sink at me, when I wish there was a more elegant solution to find out what is going on at the root (I am otherwise “healthy”) and there was more of a “personalized medicine” approach. I’m sure that is stating the obvious, though!
Just wanted to add that even for depression – much more common than EM and perhaps more researched – antidepressants may help in some cases but not in others. Everyone’s brain chemistry is unique and there is some level of trial-and-error there as well. So it might be difficult to predict how an individual will respond to an antidepressant – whether it is prescribed for EM, depression, or something else.
Also I’m not sure if there isn’t more of a continuum when it comes to some of these things (but I’m certainly not an expert). For example, with raynaud’s and EM. Or: I have been diagnosed with EM in my face – but whose to say it is not very painful/neurogenic rosacea, or that it is not a “migraine of the face” (I get migraines often), or an extension of red ear syndrome. In some ways I feel like there is no use to quibble over semantics… and in the end it will still be trial and error with the same collection of potential medications…
Ah well.
That’s a good point, standing_cat. Despite depression being a common malady, it’s not clear why SSRI’s are effective against depression. While it’s known SSRI’s allow greater serotonin availability in the brain, depression is not thought to be a simple serotonin deficiency.
It’s not uncommon for a drug’s mechanism of action to be unknown. Aspirin was in use for decades before its mechanism of action was discovered in 1971 and Acetaminophen’s (Tylenol) mechanism of action is still not completely understood.
My doctor believes idiopathic erythromelalgia in otherwise healthy individuals with no familial history or secondary condition likely results from an errant, spontaneous gene mutation. Basically, he proposes it’s just random bad luck.
Thanks for your thoughts Carter. I’m curious if you knew you had a sodium channel mutation or not? I’m very glad Mexiletine is helping your condition and continues to help you. It seems like finding anything that helps with this condition (these conditions?) is nothing short of a miracle ha. best wishes