[WolfLarsen]

Hello again!

First of all, thanks to everyone who responded to my first post! I can tell this is a very supportive place for RSD sufferers.

I did get an appointment with a specialist in town- a physiast/ pain management doctor (my foot doc, who is 1000 miles away now and I haven't seen in 2 months, suddenly called and picked the guy for me. Nice doc...). He said he did have a fair amount of RSD experience, and he *seemed* to be knowledgeable. He said nerve blocks might or might not work given how long I've had this, and would set me back $7500 for a set of 3, so he advised me to try medication first. I'm supposed to try prednisone ( a steroid) for 6 days, starting at 60 mg and tapering off, and then the antidepressant amitripityline at 25mg a day after that. The prednisone helping a lot, except....

I did something dumb on monday...I know they say avoid cold, but I thought I was an exception...the foot had gotten stuck in a warm hot swollen burning-prone state, with reduced mobility due to bulged-out veins. I could get it to go away for a little bit but it would come back. So I tried what had worked like a charm in the past- dipping in 60 F water a few times over a few hour period, then relieving the resultant stiffness at the end by splashing
with warm water. Unfortunately my RSD is so much worse now that it didn't really thaw out- I could just get it to barely move. The prednisone, which I started today, seems to have helped pretty noticeably- the tissues are pretty well unstiffened and also much less prone to hot/cold reaction. Mainly the tendons or maybe joints seems to have tightened up- I can't bend the toes down all the way, they prevent full motion of the ankle, and when a draft of cold air hits I can feel the tendons tighten up.

Running the joints under a hot faucet for awhile periodically seems to be helping a very little bit...I'm thinking of soaking in warm water (although this caused hot-burny-bulged-veins in the past) or contrast baths (although I fear the cold water might just balance out the hot to no net effect). Any suggestions?

What about the meds? They are ridiculously cheap and I'm hoping he didn't go too far in saving me money because I'm uninsured. Mainly I need to relieve stiffness and weird hot/cold reactions- actual pain is not a big deal in my case.

Contrast baths? When I did them before, when the RSD was less severe, the foot would immediately become immobile afterwards, and while I could loosen it up again, it was prone towards stiffening up again for a good while afterwards. My pt didn't know why it did this so I stopped. What is other people's experience with this?

Anyone tried mirror theapy? Sounded interesting,,,

Some asked how long I've had this. The precipitating injury was 13 months ago. It was a little weird from the beginning- it had excessive swelling that didn't dissappear and was really easily re-hurt- but the first really weird stuff was 2 months into it, when a soak in very hot water and epsom salts made it swell up really bad. I had to avoid warm showers for many weeks afterwards, but it wasn't that bad for awhile (aside from not healing and some swelling part of the time). My doc gave me an aircast which I wore until april and in retrospect was a bad idea because it caused atrophy which still hasn't been remedied. In February I started getting worse swelling, chills and numbness. By May this had gotten so bad that I tried heating pads, hot water bottles, soaking in warm water- which caused it to get red and swollen alternating with cold and stiff. It was finally diagnosed as RSD in June by the 4th doctor I went to. It improved gradually thanks mainly to physical therapy, but then over the past 4-6 weeks has really deteriorated, probably mainly due to getting hurt by dumb pt and by resultant lack of exercise. Also, my seasonal job ended, and
with it my own apartment- I've been stuck on my parents hide-a-bed and can't keep the air temp ultra-warm like I used to (yes, warm water and etc is bad for it but it likes warm air...hrm).

So I've had it for 13 months quite possibly, but it was a pretty mild case I guess until May/june. Right now all I have is the exaggerated hot/cold sensations + stiffness, which sort of hurt a little bit if they get really bad. How likely is it that I'll end up (if it worsens) with the horrible pain that seems to be so strongly associated with this disease?

Anyway, thanks!

[bobber]

Hi Wolf
I can elaberate on some of what your asking,But thats why were a team,,my experience with the swelligng,, when it started in my ankles,,one of my dr;s suggested to use compression stockings,[and im a dude],,but it works and keeps my feet white instead of colors,amd less veiny,,I was made to wear them[thats where i got them from the hospital] right after my THR surgery,,they make you were them to keep from clotting,,and as for the prenizone,,once your past day 3 [the heavy loading stage],,then i got relief,,but by he time i got down to the last couple of pills [day 5-6] some of the pain returned,,then the dr; after explaining to him,,he just gave me a script of them,,either way it enabled me to exercise while on the meds,and i weaned myself off the prednzone and from wearing the stockings,,but the stockings work,,ive found out that exercise is the best meds for rsd,,,it just hard to want to do exspecially if im on pain meds,,i dont feel like doing anything,,so i only take them twice a day to keep me moving,,,prayer is also very powerfull[james 5],,,,good luck to you,,and you know what wolf ?,,,sometimes[not always] ,,ice does help me,,but the key is dont leave it on too long,,5-10 min,,,it and other things like activity helped me to desensitive the limbs along with pool exercises,,in the pool,,you get to do activeity and desenseitize at the same time,,,,,,,,,,,,good luck................and may God bless you............bobber

[AintSoBad]

WolfL,

I think that you're finding that a lot of hot / cold isn't helping. (or, it may be that the rsd is simply progressing).
Sometimes, the rsd feels better in warmer temps, because as I just explained in another post, how humidity, or lack of it, can effect the pores. (rsd seems to have an effect on all kinds of things that should be automatic, now they're not. Like, if you get a chill, you may perspire.) Stimulate the sympathetics, and, more often than not, something bad will happen. (Or, probably not what you'd expect, normally).

If it's only your foot, that you need to keep warm at night, maybe a loose, but warm sock would help.
Electric heating pad.
As far as electric blankets go, I FAR prefer the ones that cover the mattress, rather than cover me. Why? Because as we sleep, and we get too warm, we can toss the blanket off.
If it's a mattress cover "automatic" (like a Sunbeam), you usually set it and forget it.
Even if you toss the blanket, or, it falls off, you're still warm! Amazing difference!

I'd say not to play around to much with the temperature changes on the foot, because this whole thing is about NOT stimulating the nerves, they're over active already, and don't know what to do, when stimulated.
A luke warm epsom salt soak would be good.

If your foot gets cold, does it also get clammy and wet? (Cold sweating)
My feet do, (i'm full body), and I spray my feet with anti perspirant.

As far as your last question, will the major pain come, I'd love to say no. All I can say is I doubt anyone knows.

Like Bobber said. Prayer is good!

Be well,

Pete

[Scottish Girl]

Hi Wolf,

As AintSoBad said, no one can predict the course of RSD. Some people end up worse than others. Regarding the medication you're on, are you upping the dose when your RSD gets worse or are you following a prescribed course? It took me a long time to find the correct dose for me which I maintain daily. I've noticed a huge difference in my RSD, and although the side effects are pretty horrendous, I'd much rather have that than the horrible pain I was in. It's finding the dose to suit you that's important.

You also mentioned nerve blocks. I get these regularly, every 6 weeks or so, and that, combined with my medication, means that my RSD is pretty much kept at bay. I do have days where it's bad, but on the whole the effect has been good.

Mirror therapy has had good and bad reviews I think. I have also tried this, but I have to say that it did nothing for me. It's all about tricking your brain, but unfortunately mine didn't want to be tricked. That's not to say that it wouldn't work for you. If you get a chance to try it you should take it up.

Take care