My RSD started in November 2000. So I'm just on the 8 year mark now for my right arm and hand, and I'm nearly at the 3 year mark for my leg and foot.

How many of the original components are still with you, the sweating, the outward signs of red molting or blue, thin limbs or swollen limbs. And all of the above questions following use of your affected area.
My arm doesn't go red when it's touched now, I don't have big issues with allodynia since my 1st ketamine treatment got rid of that in 2004. Still have swelling and purply/mottled hand and foot, but not the whole limb so much. After use? they're worse.


Which are the predominate features that dominate now. Burning pain, swelling, purply colour change, bone pain, stiffness, weakness, sharp stinging pain.

What has changed in terms of your pain form previous years. I'm worse now in terms of mobility, movement, dependance, fatigue, pain levels, coping ability, psychologically, (so EVERY ASPECT!) than I have been in the whole 8 years, except I have more use of my hand than I had before. Also insomnia is a big issue now, I average 2-3 hours sleep a night.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
I can't be very active at all. I worked out my base and peak times for doing things, and for instance the amount of time I can stand with weight both even on my legs is just 20 seconds. At my lowest pain level, I can walk around the house with a mild limp. At my worst, I can't put my foot on the ground at all, let alone stand on it. I spend most of my time almost at my peak level, with maybe a few hours in 3 days total where I can walk with just a mild limp. I have fairly good use of my hand though, but thats due to a lot of hard work for a lot of years.

How weak are your affected limbs?
See above for my leg. I can hold a 2ltr bottle of milk with my right hand for about 10 seconds before it starts to shake and I have to let go, but at least I can hold it!

Which therapy modalities have helped the most? Definitely physio.I've gone from having no use of my hand, and a totally frozen shoulder, to having good use of my hand (mostly), being able to write with my right hand again. My shoulder is starting to screw up again now, but its been fine for a few years. I also still see a pain psych, which I think is invaluable.

Meds, whats working- have your meds increased or decreased.
Meds have increased. Almost run out of available medications to try, as I've tried everything. At the moment, I'm on 40mg oxycontin a day, 900mg neurontin, 75mg endep and 50mg baclofen, plus vitamins etc. I've had other times where I've been on this much, and other times where just the endep and baclofen have been enough. I know these all help right now as I just had a week without the oxy and it was a nightmare, but I'm still not quite there. I'm still in a lot of pain, a lot of the day.

Ability to work?
Me work?! My husband can't even work! Well, he does 2 days a week because we need the money and he needs to get out of the house, but he sets things up for me so I don't have to do much on those days, and he catches up with it all when he comes home. Right now, I need him home all the time to look after me and Hannah. It's hard doing everything when you're on crutches 24/7- you can't even carry a drink into another room. I have to put things on the high chair tray and push it from room to room! lol I'm hoping that one day I'll be able to work again. That's why I'm now doing a Business Administation course from home, and last year completed a Human Resources Management course. Hopefully one day I can put all this learning to use- providing they hurry up and cure us!

Hope that helps!
x Kate