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-   -   Question (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/31474-question.html)

Debby 11-10-2007 03:41 PM

Guess I am a bit late with my reply, haven't been here for awhile............just too much to do, to much going on & too tired all the time.

The pain is worse from middle of the afternoon on for me also. I think some of it is because I am up during the day. When up my lower limbs swell some, causing pain from that on top of the pain to just plain walk around the house. Some things in the house if I don't do, just never get done, so I do it even if it hurts me to do it, like vacuum the house, sweep/mop the floors, do the laundry. I didn't get to vacuum this past week & now it is really bad *LOL* But like I said if I don't do it, it won't get done cause I have tried 'not' doing it. *LOL* Then it never gets done at all. So like I said mine is due to being on my poor feet & then they just plain hurt more &/or swell which makes it hurt even more. It is like a vicious circle. If I am out of the house I use one of the store's scooters & if they are all in use I use my electric chair to shop or go in a park or for whatever. I make it around my home but not outside. I do try to not use my chair, say when I go to the library or in to a doctors office. I know if I don't make myself walk on my feet I would be in way worse shape than I already am. I tried hard not to let them become deformed & fixed in position & yes one leg is way smaller than the other & they tire very very fast because they are weak from lack of use. I do have a high pain tolerance, atleast I think I do. And the first year of this was the worst. I was in bed probably 95% of the time & wow I really lost use. Not good at all. But I had very little pain control at that time. Once I had better pain control with pain meds I made myself do things with them I didn't want to do & I think that is what has kept me as mobile as I am.

But yes I hurt alot from middle/late afternoon on. I hurt badly when I first wake up too, but with a bit of walking some of that works it way out.

And I do have fibromyalgia. Dx'ed with it in 1989, Dx'ed with RSD in 2004. For me RSD pain overrides Fibro pain most of the time. And yes weather is very hard on me due to having Fibro, RSD & Sjogrens.

I have no answers on how to make that different, to hurt less in the evenings & night.

Take care,
DebbyV


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