I’m new here so I hope I’m following the rules properly! I’m in my late 30’s married and mom to 3 year old boy and have a laundry list of conditions: hyper-mobile EDS type 3, POTS, MCAS, CRPS, mold illness, etc….
I’m wondering if anyone else has had permanent toenail removal surgery (on both feet) and how you managed the post op flares. I’m a month out and I’m in my second round of flaring up, my doc removed the scabs rather aggressively and it sent me through another crazy cycle of incredible pain!!!
I would greatly appreciate any support, tips or treatment options that worked! I’m miserable and I feel like I can barely be upright for more than a couple minutes before the burning, throbbing pain starts back up.
My name is Merl I’m a member of the modsupport team here on Ben’s Friends. Although erythro was one of what I call my ‘pseudo’ diagnosis ie It could be ‘x’ or it could be ‘y’ or it could be erythro…’ the medicos couldn’t give me a definitive answer. The temperature gauge in my head, the hypothalamus, has been damaged and my temperature regulation is a mess. When I get cold, I sweat. But when I get hot my system goes into overload. Horrible. I have what I call my ‘Goldilocks Zone’ not too hot, but not too cold, but just right. I try to regulate my environment to manage better.
Trying to manage around multiple diagnosis eds, pots, mcas, crps etc can make the process so much more difficult. Finding a management tool that works for one could cause a flare in another and vise versa. For many people with complex needs, us, some medicos like to run us through the ranges of medications. But finding what works, for you, specifically, can really be a case of trial and error and error and err…. I was placed on a heap of trials from heart meds to epilepsy meds to psych meds to nerve pain meds to opiate pain meds. I was up, I was down. Heck, sometimes I was sideways. But if there was a pharmaceutical ‘key’ that worked, I wanted it, so I trialled them all. Unfortunately, there was no key for me. But it may be worth investigating for yourself.
What I have found is that something others profess to be the ‘key’ for them, maybe of very little benefit to another. I have a friend who swears by a nerve pain med, it’s a wonder drug for him. But the side effects for me from that same medication are awful. Not for me. This is not a ‘One-Size-Fits-All’ type scenario. Finding what works for YOU can be very personal to you.
I went through the same thing and oh my god the flares were the most intense I’ve ever had. I had to elevate (I have a leg elevation pillow) and just keep cold packs with me at all times. It took a month before the worst of it subsided. I also have CRPS in that foot so it was just both of them combining to make a hell unlike anything else.
My name is Michelle from Australia. I am so sorry for what you are going through. I only have Erythromelalgia. The burning and pain I get is so unbearable. We are in summer here, and of course the heat puts me in excruciating pain. I’ve tried all medications myself, and nothing works. I wish I could help you more. My daughter had EDS type 6 . It’s very rare. She passed in January 2021.
I’m happy to keep in contact with you if you would like too. Sending you blessings.
Keep house cold, the cold helps stop flares and helps greatly, also bought a Bedfan it goes under the sheets, it keeps body cool in sleep, lastly cannibis gummy bears, cut one into 4 parts, take 1/4 wait two hours, take another 1.4 until you can work up to one whole, also spray bottles full of water, water puts the fire out