After 5 years, I’ve been diagnosed with erythromylalgia. Started with very red right foot and extreme pain on tips of middle toes. Pain eventually went away. I have cold or heat sensations on those toes. Also had numbness on those toes on the right foot. Now i have numbness on toes on both feet. Sometimes the heat sensation is so bad, i have to take my shoes off and it feels better. Neurologist diagnosed neuropathy and sent me to a dermatologist. They BELIEVE it’s EM. I’ve been prescribed calcium channel blockers along with gabapentin. Maybe helped a bit? Recently tried beta blockers. I’m an active cyclist, and the beta blockers were terrible. They want me to increase gabapentin and try mexilitene and I’m skeptical. Any help would be appreciated.
Hey Rick,
My name is Merl, I’m a member of the modsupport team here on Ben’s friends.
EM has been one of the many ‘pseudo’ diagnoses I’ve received. I have a little nasty growing in my head, right in the centre of my brain and it’s putting pressure on all of the structures around it, including the hypothalamus. In very layman’s terms, the hypothalamus acts like the body’s temperature gauge. It was decided that the surgeon would go in and remove the little nasty, but when he got in there it was found to be too close to brain structures I need to survive to be removed, so the mass was reduced. But to get to it they needed to go through the hypothalamus and this sent my temp regulation for a spin. I sweat when I get cold, cooling me further. It’s awful. When it gets hot, I have to be able to control my environment. I have what I call my ‘Goldilocks zone’, not too hot, but not too cold, but just right’. My aim (Not always successfully) is to stay in that zone.
The neurosurgeon’s view is “Well, I operated. I fixed.” And admittedly he did reduce the size of the mass, but the flow on effects of the ‘fix’ have been many and varied. I’ve seen many, many medicos, from all sorts of specializations and they all seem to have their own theories, discrediting any other opinions that differ from their own. I had more theories and diagnoses than I could count on my fingers (and toes).This is why I call some of these diagnoses as ‘pseudo’ diagnoses ie “If it’s not ‘X’ and it’s not ‘Y’ then it could be ‘EM’. So, for me it has not been a direct diagnosis, but rather an elimination process.
I’ve been trialled on all sorts of medications/treatments from heart meds to psych meds to electrical signalling meds and some of the side effects were horrible. I was up, I was down, heck, sometimes I was sideways. Just nasty. I had botox injections in my neck and shoulders to relax the muscles, I tried a TENS machine, hydrotherapy, acupuncture, Bowen therapy, manipulative physio etc, etc, but with minimal success.
Here’s what I have found: If I reject a treatment the medicos will often hold it against me with statements such as ‘Patient unwilling to trial treatment ‘X’ or place a sticker on my file “Non compliant patient”. When I explain that their treatment plan is not working, they’ll remind me ‘…But you rejected treatment ‘X’ and that could be your key…’. So, I have learnt to trial them all, just on the off chance that one of them could be my ‘key’, but then I cannot be called ‘non-compliant’. And if I’m lucky enough to find my ‘key’, all the better.
Something I have learnt through this medical roundabout is that some medicos will send us for repeated tests/scans/procedures, often testing for the same thing. Due to this I keep my own records of who I’ve seen, what tests I’ve had and the results. This can help reduce some of the duplications, it can also show the medicos that I’m being proactive in my own care.
This is NOT a ‘One-size-fits-all’ type scenario. What can work wonders for some people can be of very little benefit to another, so it really can be a case of trial and error to work out what works best for you.
Hope it helps
Merl from the Modsupport Team
Thank you for your response. I’m really sorry for all you’ve been through. I agree, all my doctors seem to be “guessing” what i have. Some have said reynauds, and many have just said they don’t know. Regardless, the treatments haven’t taken away the symptoms. What makes me nervous is that some symptoms seem a bit better, but the neuropathy seems to be getting worse.
I’ve had it 20 years and tried everything. Mexilitine has far and away been the best drug I’ve tried. It’s given me my life back to a large degree. Most people take 150mg 3x a day on Mex. I take 200mg 3x and tolerate it fine. I’d start slow and work. your way up. I’d give it a try. I also take Lyrica (similar to gabapentine) but that’s more for my small fiber neuropathy pain.
Great to hear. I’ve had prior issues with afib (they say it may cause issues) and take Desvenlafaxine (this is a listed drug that should t be combined with it). A little hesitant, but since it works for you, i may give it a try.