I've had RSD since 1986. I was "lucky" that only my left foot was involved until I fell and fractured my left Tibial Plateau in Dec, 2004. 5 days later my right foot was unbelievably swollen and the PM doctor associated with the Orthopedist confirmed spread of the RSD demon. The fracture displacement for needing surgery was borderline, so we let heal without surgery because of the RSD, though the RSD spread despite that and despite massive doses of Neurontin. It's been difficult living with this, I've persevered through a few small bumps and bruises causing flare-ups(I'm always in RSD pain and worse in the evening and have the RSD insomnia); but 4 days ago I tripped and twisted my left ankle and bruised my right knee. It was not a hard fall as I was on carpeting. My whole left foot swelled up and is still swollen, though the side of the ankle i twisted is not as ad as it was. However, my whole right leg puffed up and though my leg below the knee is somewhat better, 1 spot just below my knee is getting worse and late yesterday a red rash started around there making me think it's an RSD reaction. Any thoughts? Anything anyone knows to prevent this worsening?

I've read this forum for a long time, but this is the first time I've ever written on this or anything like it. Thanks for any suggestions. I'd appreciate any ideas. I don't have a pain management doc, but a wonderful family practitioner, who is willing to read and try things I find out about. I also recently found I have bone spurs in my right hip, which seem to be worsened by the RSD at night, and I have a very capable, caring chiropractor, who has worked with some RSD patients and has been researching other ways to help.

BJWK,
I'm sorry for your worsening experience, with the demon.

I understand your plea for help. Truly. I just don't know what to tell you to do. You know your body. Does hot or cold help or worsen? Normally I'd suggest cool compresses, but so many here hate the word cold! I've had this since 83, and I can't stand heat any more, after a head injury. The two injuries 'conflict'.
So, you may try a bathtub, with your choice of temp, and some Epsom Salts...
Sometimes, i find when my methadone doesn't cut it, (weather changes) that an Aleve or two, will just bump it up enough to help it 'break through'!

It's these little things, that we must keep in our arsenal, and not forget them, when we're at our worst.

And, last but most importantly, get on the phone with your doctor. I don't know your drug regimen or anything like that. But, it's time for you to get very serious about this battle!
Maybe find a true RSD expert, (or as close as they humanly get).

Do you got to
rsdsa.org
?

You should, and check out their search for doctors, I believe you just put in your zip code.
I also suggest you become a member, and get their newsletter!

Ask any more questions you may have, that's why we're all here, for you!

(Let us know too, approximately where you live,, someone here may know a good RSD physician)....

Be well as can be!


Pete
asb

Boy, does it feel good to get your supportive reply. The rash and puffed area below my knee has been worsening all evening...I've had increased RSD symptoms in the evening for longer than I can remember, but this is BAD and strangely the other areas that usually swell, stab, and burn aren't doing that. Pete, i had just decided that I should call my Dr. in the morning and feel more sure of that decision having read your post. I also have an appointment with the chiropractor, which should be helpful since I'm kind of limping to avoid pressure on the ankle I twisted and that puts a strain on my hip that has the bone spurs.

I live in the Milwaukee area, zip code 53217. I asked my Dr. if he knew a pain specialist and he didn't have anything good to say about anyone in the area. The pain guy I saw in 2004 had nothing else to suggest. I previously lived in MA and had nerve blocks done there that did not help, so the pain doc here didn't think it was worth doing again and might even be detrimental. It took over a year before the diagnosis of RSD was made in 1986, thought the huge swelling of my right ankle started in 1985. Unfortunately many wrong things were done along the way...casts, surgery, more immobilization. From everything I've read, the RSD was in me too long for the many treatments i tried to work.

I am a member of RSDSA and have been for many years. I thought I'd had RSD for a long time, but you really have! Thanks for the tips and support.
BJWK in Milwaukee

Normally I'd say 'get thee to the pain clinic for a nerve block', but as they haven't worked for you in the past, who knows ?

I still think trying that might be your best shot of trying to make sure this new pain isn't permanent. They work best for 'newer' rsd

I've been lucky in my 6 year battle that it hasn't spread.

Best wishes trying to find a quick solution !

Pete, your message helped me. After a horendously painful night I called my dr. this morning and got an appointment right away. You had mentioned methadone, which i never have taken. i asked my doctor about it and he gave me an Rx. There's a question as to whether the red rash on my very bruised, swollen knee is RSD showing its ugly self or bleeding beneath the skin or in the joint. Whichever, hopefully the methadone and lidocaine patch...also not used previously will make for a better night.

Hope you have a relatively pain free night too.

Thanks for taking the time to help,
BJWK