Relatively new to this excellent forum, been posting occasionally but finally getting around to an introduction…
Screen name: Stan
Country: kiwi, now in Australia
Region: Melbourne, Vic
Are you a patient: patient
Diagnosed? : Yes (self), not gene tested yet
Treatments: Pregabalin (Lyrica) helps at 225mg nocte.
Looking forward to new sodium channel blockers becoming available.
Also trialling various antioxidants including ALA, thiamine, magnesium orotate and CoQ10. The latter 3 were suggested by my endocrinologist as they are being trialled for DPN.
Started Bob’s protocol 2 weeks ago and this is helping a lot
Avoiding excessive cooling.
Meditation or rather being in the moment, just watching the burning feelings, without being in resistance to them, helps too, as does music especially the “chill” genre! Both together are even better.
Your story : Several years increasing burning red feet. Initially very infrequent now almost constant. Flares triggered by the usual heat, exercise and having feet down eg prolonged sitting. In retrospect 1st episode aged about 10. Also occasionally affects my ears. Intense in that location. Likely primary EM (?) as father gets very occasional symptoms too. As a medical doctor myself I had wondered whether it was EM but had until recently dismissed the possibility (how could I have such a rare condition, ha ha?!) having been to a neurologist who thought it was diabetic peripheral neuropathy although all tests (bloods, MRIs, NCS, EMG) had been negative. Not had skin biopsy. Maybe associated SFN. I have recently treated mild type 1.5 diabetes (LADA= latent autoimmune diabetes of adulthood) like my dad, although HbA1C’s never diagnostic for diabetes, some fasting glucoses were high indicating a glucose dysregulation. My late sister had classic type 1 diabetes onset aged 10. Extensive tests have not turned up any proven secondary cause, although high GAD antibodies, a usual marker for auto immune diabetes. Interestingly my father’s GAD abs are negative.
Something else about me: enjoy being active, walking, cycling, don’t run anymore due to a soccer related knee injury, kayaking, snow skiing, fly fishing /catch & release, music mostly jazz, rock and chill (!), spicy food, espresso and red wine. Fortunately these latter don’t seem to aggravate symptoms, although exercise has recently been restricted.
Doing some PubMed reading and there’s certainly lots there, mostly highly technical research (even with medical training) but it seems very promising.
Here to learn and share.