Originally Posted by Debbie V

hi,
Well, unfortunatly I fit the bill. I was originally diagnosed in November 1999 with RSD in my left foot. By around Feb 2000 it had moved up and encompassed my entire left leg, and from then till late 2001 it spread to include mmy right leg as well. So now have it in both my legs toes to hips. I think the easiest way for me is to leave the question your asking then my answer after it. so, here we go.

I am interested in general and specific knowledge of how you are coping now.
Well, day by day. having more bad ones than good, never know what kind of day will be. pain meds are both a life saver as well as a curse.

Which are the predominate features that dominate know.
The swelling, bruising, hypersensitivity to everything.

what type of pain.
Burning, numbness which I think is the worst.

How consistent.
Think the beter question is how often do u not have pain. I am in constant pain, if I can go a day with my pain level below a 7 I am thrilled!!!

What has changed in terms of your pain form previous years.
Think I have gotten so use to it, that it is at times easier to block it to a point. Definatly does require me to pace myself more, as on that one good day, if do too much, Ill be down for 4, rather than if say, ok, today is a good day, Im gonna try to do 2 loads of laundry and stop there. Then may be able to do a little something else the next day. Where, before, on a good day, I would be like yeahh Im gonna steam clean my carpets, clean my whole house and then be down the next week.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
Fairly in active anymore. I use to do Rennisance faires and run a kitchen for a group of anywhere from oh, 6 to 26 people, spend 2 days prep cooking and then finish it so could eat that weekend, 3 meals a day. Now, can't do 2 faire weekends in a row, can't do kitchen anymore. Havent run a kitchen full time now in about 3 years, towards stopping it, It would take me oh, at least a week to recoup from a whole weekend usually more like 2 weeks.

How weak are your affected limbs?
on a scale from 1 to 10, 10 being not able to stay up, a good day is about a 6, a bad day, of course a9 or 10 which are those that stay inbed except to go to the bathroom.

Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.
use meditation alot, more recently which really does make me feel great. Allows me to not take the sleeping meds all the time and even though may only sleep 4 hrs, feel like slept 10.

Meds, whats working- have your meds increased or decreased.
Oh, definatly increased. mainly because of tollerances building up and eventually having to change. Baclofen has been a life saver fr the spasms. had one so bad 3 months ago, that fell and actually the non spasming foot ended up breaking and dislocating both ankles, the tib in 3 spots and the fib in 2.

Ability to work?
Dr.s wanted me to stop after a major car accident in 2002 August, but as a single mom with a child in high school and nothing from there dad, had to work. pushed but had to accept in Oct. 03 was no longer possible. because of the pain, the pain meds side effects unable to work when would take enough to take the pain to a tollerable level, as well as just couldnt sit at a desk anymore, spend most of time laying in bed or on the couch with legs up.

And if not is it due to meds as well as pain from RSD?
it's was a combination of both as well as the more I would push myself, the worst seem to get.

Hope these help, if need me to elaborate more on something let me know.

Blessed Be
Deb

RSD is not who we are, but only a part of who we are, what we are and have to be are fighters and survivors
Please add as many elements as you can think of that I have not mentioned. I am going to post on braintalk too. I will post the results together. I hoping to see some type of pattern. Thank you so much in advance if you feel like sharing some of your experiences. sincerely, cz