Hi again from Philadelphia.
My daughter is waiting to get approved for the site but loves the outreach and advice. She wonders if anyone else has flares that were so bad they couldn’t walk. She is trying to get away from cold water soaking but finds it her only relief. Now she is beginning to have blisters although her feet are in plastic booties (not going in the water without them). Any suggestions? Believe it or not, she has been this way for almost a month with no relief from flares.
For sure stop the water soaking any ice etc. Asap, it just makes it worse in the end. I often get to the point I can’t walk it is so painful, I’ve found medical marijuana helps me the best with my em pain and barely notice my feet are burning.
I should also mention I have a wheelchair for bad days that I can elevate my feet with, have a disability placard and use electric carts when shopping frequently, it takes time but it’s possible to adapt.
My feet are terrible. I have flares where I could cut my feet off and believe it would be less pain.
My feet are white around toes with dry skin sure with heat.
I need to cream my feet as getting so dry.
Cold water only helps momentarily then pain of cold hurts. Take feet out back to where I begun.
Sorry no help but huge cuddle
Thanks for the hug and it’s good that she’s not alone in this
Has she tried Bobs protocol?
She is trying to wean herself off ice. Cool water while her feet are in plastic. Still using fans. But she trying to get away from the cold to warm water. She has read about this and wants to get comfortable without keeping them cold all the time.
Yes, I had the flares bad enough that I crawled to the bathroom because my feet hurt too badly. This was after I was on chemo for awhile so thought that made EM worse as I had it since childhood but not so it was noticeable. I finally got someone to agree with me that it wasn’t neuropathy and once I was officially diagnosed and started Hydroxychloriquine it finally came under control. It took 5 months to see some results and gradually it’s become more and more tolerable. I at first was using cool water (when it was the worst) and for years I’d been using a frozen ice bag with care not to freeze my feet. The cool water was not a good thing, I knew, so I quit doing that. I began using a fan and I still use it every night, trying also to keep my feet moistened because dryness is always a problem. I’ve been on Hydroxychloriquine over 1 1/2 years now (aside from the COVID-19 scare making it scarce so I was without it for a few months - and the flares were getting worse again). And also, yes, I had blisters but apparently from the flares not from soaking. They never were very big and didn’t break open. I assume this was because I got on Hydroxy and got it under control.
Thanks for the advice and comments about the flares and blisters. The hardest part is the waiting game and finding a physician willing to learn and coordinate a team
I had this for over 10 yrs but this is my 1st flare. I didn’t know I had it before as it was just my feet were burning at night and had no other symptoms and my Dr said he didn’t know what it was but could be menopause or my Thyroid. After we went into lockdown the flare started with my feet and ankles swelling up and going bright red at night and pale in the morning.It has since got worse with intense itching and find it hard to walk and my feet stay red even in the morning. Some days are worse than others. I keep my feet cool with a large fan which helps but I do put my feet in cool water (not cold) and I add Epsom salts which do help a lot and eases the itching. I also got some cream on Amazon called BALNEUM dry skin and itch relief which does help with the itching for a couple of hours and keeps the skin hydrated. I also use Diprobase ointment for the little sores I have as I do sometimes scratch in my sleep.It has now progressed to my calves and shins and the redness goes up my legs I am so sorry for your daughter and hope she gets some relief soon.
That’s how my em started was with the itching and redness