I answered already on the other board but just so the people who only come here can see my answers, I'm re-posting here CZ.


I've had rsd for 5 1/2 yrs now. Next Feb will be 6 yrs. When it began I had severe swelling from the knee down and foot of my left leg. I was on crutches for about 2 months, maybe a bit more, went to pt, learned to walk again and the swelling disappeared. Since then I've only had minor swelling in my ankles. Oh, guess I should mention now that it spread to all 4 limbs in 11 months.

Color was a bluish/purplish that got darker the longer my legs were down. Still gets that way, haven't noticed that it's any worse but definitely not any better! My arms didn't have any color changes until about a yr and a half ago. You notice the change only if my arms are hanging by my side.

My feet,legs and knees were always very cold to the touch and have remained so. My hands and arms, well hands and elbows are cold to the touch and arms themselves can feel cool but not as cold as the rest. I also have it in my shoulders,hips and part of my upper and lower back. I don't notice any temp change to the skin in those areas.

Hair loss was there on legs and my head from the start. Haven't lost any more on my legs, but the hair loss on my head is worse now then it was then. Within a few months the skin on my legs became shiny, thin and dry. Now the dryness is much worse and my whole body has very dry skin, even those areas not having active rsd in them. I've always had oily skin. The bottoms of my feet are also worse than before with drier and also a bit thicker skin.

Sweating at the start wasn't a problem really. I got hot flashes and around that time of the month my legs would sweat at night. Now, still have hot flashes and sweat day or night all over not just the legs anymore! LOL

Very soon after it started my toenails all but quit growing. I only had to clip them once every 2 months. It's still the same. My fingernails had no change. None of my nails are either harder or softer than they were before rsd.

I didn't feel the first "burn" until between 4 and 6 months after it all began. Even so I never burned much at all. At this point I do burn more all over but not as much as others I've talked to. I guess an average "burn rate" would be at least one episode every 3-4 days or so.

Sensitivity.....was only to air on my legs at the start. The air sensitivity on my arms began about 2 1/2 years ago and is worse now for both arms and legs. Even the slightest bit of air hurts. I didn't develop any touch sensitivity to arms or legs until about 2 yrs ago. It's especially bad when my pain is high. My whole body is very touch sensitive, even my head and scalp. Things like noise, has always bothered me but is definitely much worse now. Vibration wasn't an issue for the first 3 yrs but now I can't stand riding in a car at all unless I absolutely have to for going to the doc. It just hurts too much.

Leg numbness became an issue in the last yr and a half. I have off and on numbness in arms

I cope now the same way I have from the beginning. I keep as busy as I can, find something to laugh about every day even when I don't feel much like laughing. I meditated before and it became more important to keep doing it after. It helps by keeping me calm and helping my mind stay focused on something else besides the pain.

The pain itself was horrific to start with. Even with my high threshold for pain it overwhelmed me. None of the wc docs would give me any meds so it just made it worse. By the end of the 1st year my body had adjusted to the level of pain I felt. It was still bad but not as horrific, even with no meds. Now at 5 1/2 yrs with pain med it's lower. My good days average about a 3-4 and bad days about a 7-8. Of course pain is subjective to each of us because my 4 is someone else's 8 or 9. The feeling of it I'd say definitely changed. I used to describe it as severe, unrelenting, crushing, sharp, stabbing, shooting. Now it's still sharp, stabbing and shooting but not crushing. I still feel it bone deep at times. I feel more muscle pain now than then.

I have more muscle spasms at times now than in the beginning but on the baclofen I have much less uncontrollable jerking of my limbs. My legs were very bad for the first 2 yrs.

Not very active. I can clean house a bit at a time. If I do too much it results in more muscle spasms, uncontrollable limb jerking and a higher pain level for 2-3 days, unable to do anything other than lay on the couch and take meds.

Much weaker than they used to be. When it started I only had about 10-20% weakness and now it's about 70-80% in my legs. My arms, maybe 5% and hasn't changed.

I had land based pt 1st time for 6 sessions along with water pt. That got me walking on my own again. Had land pt 2nd time for 10 sessions before she dismissed me because it was only making me worse. I tried a TENS and it was the most painful thing I have ever experienced! I'd have to say water pt was the best and would've been better if the water had been warm. LOL

I take generic vicodin, 10/325. I had taken 7.5/325 for a little over 2 years and increased it this past Jan. I take baclofen 10mg, was 2 x's a day and increased to 3 x's a day last month. I began taking Lyrica 75mg in Jan and went up to 150mg once a day over the next few months. I took it to hopefully help the leg numbness. I'm now back down to 75mg once a day because it made the numbness 10 times worse. It hasn't gotten any better even though I've decreased the dosage. I think it's permanent now.

I haven't worked since I was hurt in Feb 2003 and will never work again. It's all due to the rsd. I can't stand or walk for long. I was a cook and that's a stand/walk job. Oh...I did work for about a week when wc MADE me a few months after the rsd started. They didn't try that one again! LOL

I think I covered everything. If you want to clarify something or need more info, don't hesitate to ask!

Hugs,

Karen

Added to original post,CZ asked about major treatments,such as block,elec shock therapy,etc:

I was on wc so wasn't given much in the way of treatment. LOL

I was finally given the go ahead to get one block done. It was done May of 2004, 1 yr and 3 months after it all began. The doc wanted to do 2 a week for 4 weeks on both legs. WC said nope, only left leg, don't care about "spread", only on the leg that was originally injured.

Rather glad it was only one side though. I left the office and was about 1 minute from the place when the most horrific pain hit. OMG!!! It was far worse than when it started. I wasn't able to walk,stand,sit,lay down....it all caused my 10 to hit 20. I suffered like that for 2 months after the block. Needless to say I told them all I will NOT ever do another one! LOL My neuro agreed so didn't push it. I didn't and don't have money to get any other kind of treatment.

Hope today was a good day for you. It was an ok day here. :-D

Hugs,

Karen