Someone mssg'd me, so I am going to update my experience best I can to date:
Still having major bone pain & edema/swelling has only gotten worse. My feet & legs swell the most & arms/shoulders, but everything does now with minimal exertion. My feet/toes have been getting really swollen to the point of not being weight bearing, my toes the pads are swollen like they are little hammers & I have developed "blister" type purplish spots on several of my toes(the ones that are swollen/swell the most). I noticed the spots back in Aug. on my L foot(which was always my worst side, so used R more), and then they started on my R foot, and I was having difficulty standing/ being on them at all. I was already limiting myself to no more than about an hour at a time being on them, due to the pain/swelling & crashing from PEM 48-72 hrs after minimal activity, so if I do anything for 1 hr. I wait 7-8 hrs before trying to do anything else like shower(my feet get bright cherry red in the shower, and now I have noticed that I have red bands that go up inside of my legs from the ankle up past the knee, this is new for me, or I did not notice it like I do now, and I know of no reason for it, and it is in the same place each time on both legs(again I think a cicrc/vascular issue). Saw my Dr. & they did not know for sure what the toe spots were, I "thought" it was blister/rub spots from them swelling so much, but they weren't sure. They suggested a Dermatologist or Podiatrist, since I think it is a circulation/edema issue I went w/ Podiatrist & see them in Feb. I did see a Neurologist for my legs back in 2016, and they said I had mild peripheral neuropathy, and w/ not much they can do & cost of seeing, I have not seen again from my initial visits/scans.
I already was very limited activity wise, I go out to the stores once a week/10 days, and do not do anything days before doing that, or after. I try to do one big thing a week, but limiting to no more than an hour or so on my feet, like vacuum/laundry/etc..but it is a battle, the swelling & pain make it very difficult. I also have stomach issues after exertion, or if it is hot/etc.. It is vey much dancing on a razors edge at all times, and the very bad days I can go from being OK to just totally uncomfortable & super irritable. It feels like every nerve is firing and nothing helps, I just try to sit and relax and hope it passes. Weather is def a factor.
I still take 5/325 Hydrocodone & .5 Xanax together w/ 500mg of Acetaminophen 3x day, and Ambien 10 mg every night and Benadryl about 30 mins before taking the others. I also take a multi-vitamin 2x day & L-lysine 1000mg a day. Some days I sleep OK, others not well at all and feel like I have been hit by a truck. I do not know what to do about the swelling, and am hoping the Podiatrist has some idea what to do that will help, otherwise I really don't know what I will do. I am not looking forward to the heat again at all. Getting tired hope this helps, and I haven't forgotten anything.
TrixieStix Small Fiber Neuropathy, what is your treatment for that? & has it helped you?