My name’s Brandi and I live in regional Victoria. I started having burning feet symptoms about 3 1/2 years ago. Like so many of you it’s been a very bumpy road since then! My symptoms have greatly deteriorated this last year and now my face, ears and hands have joined the bonfire. Life has really almost gone to a grinding halt, however I really try to stay sane through nature, friends and art. I’m also a big fan of the Neuroscience App called Curable which seems to really help calm the mind down and pain signals along with it sometimes.
I’ve seen a number of specialists in Melbourne including a neurologist (who diagnosed me with SFN), a Pain Specialist, a Rheumatologist (who referred me straight on) to a Vascular specialist who I’ve FaceTimed and spoken with twice, Dr Peter Blombery. I’m currently trialling Gabapentin, however after about a month of trying to stick with it things have really gotten worse so i’ll be slowly moving back to the Lyrica from today. This year alone I’ve tried Cymbalta, Propanonol and another one (mind blank from the years of Lyrica!).
I’m so sorry to read of the state others here are in and greatly empathise. So nice to know I’m not alone even though it’s so so awful.
Very few people really understand how this affects me and I if they do it’s like gold. Such a crazy weird condition, I don’t blame others who don’t understand! What makes you flare? Well… walking, standing too long, falling asleep, showering, eating, heightened emotions, alcohol, sugar, barometric pressure changes… and just heaps of other things .
I’m a box maker and work with Australian native timbers and glass. I love my work but EM is really limiting me to how much time I can spend in the workshop. Which is sad because it’s one of the few places I can become absorbed in something that’s helps me not notice the pain. Mornings used to be best hmm but not since the Gabapentin so it’s back to the Lyrica ASAP!
I was very happy to find this forum and hope I can learn some things to possibly help and if possible offer some encouragement to my fellow EMers.
Hi Brandi… Bless your heart, you do have a lot to deal with… I am glad the Lyrica helps you so much… so far I’ve not tried that one, but I do take a handful of pills every day… I’m fairly recently diabetic, so am on Metformin and Piogliatizin for that. Also take Cymbalta and Gabapentin… NO Magnesium now, because it stops the Gabapentin from working… I use a rubbing oil that I get from Amazon… called NEUROPATHY and is made from Frankincense and Myrrh… The oil has become a standby for me when my feet flare up all red and hot… It helps the pain so much… Also, cold water to cool them down… Always sitting with feet up, in a recliner and sleeping in a bed that I can keep my feet raised… All these things have made a huge difference for me… Unfortunately, like you, I can’t spend much time enjoying my hobbies because I can’t stand or sit with my feet down for very long… I realize that your EM condition is more with your face, ears, etc… so our situations are quite different… But I wanted to respond to your message and let you know that others are thinking about you and hoping to remind you that you are not alone by any means in this life changing condition… It sounds like you’re already trying many methods to ease your pain and live a good life… I applaud you for that… We just don’t quit trying to find better ways to improve our situation and get rid of those mean ole flares… Good luck to you! Hotfooted
Brandi, please read RUNWTHME’S message for her experience with meds that have been giving her some relief… She mentions Hydrochloroquine making a big difference in her face etc flares, plus other things, too… She seems to have ER like it affects you…
Also, somewhere else I saw one person uses a frozen cold pack inside a pillowcase to cool her face and ears… If you haven’t tried that, maybe it will help… I have used the cold pack socks to cool my feet and it helped so much in the hot summer days and nights in California…
Thank you so much for your reply Hotfooted. I definitely use all manner of cool packs and cold water and fans/elevation also, that’s the only relief really. A cool running creek is the very best if we’re out and about. Thank you again, it’s nice to know on here that I’m not alone in this life.