Quote:
Originally Posted by WolfLarsen
I was diagnosed with RSD by a foot & ankle specialist. He first tried some simple physical therapy treatments but it hasn't worked yet so I'm wondering what course I should persue next.
It sounded like I should go to a neurologist, who then might refer me to a pain clinic, with anesthesiologists specialising in pain management. I'm curious to hear what advice others might have on this- on who to see and what treatments are worth considering, etc.
I want to keep costs down- I don't have insurance or a job right now- but I also want to get this cured.
Also, whats the best way to find specialists who are sufficiently knowledgeable about this? It seems to be pretty critical with RSD. This went undiagnosed for months until I finally found someone who figured out what it was- my primary care guy ranted about how I was a hypochondriac and wasting his time.
Right now I live 50 miles from Sioux Falls, SD, but staying with relatives is an option- I have some that live about 90 miles from the Mayo Clinic.
Anyway, any advice anyone has is surely appreciated!
If anyone's curious this is kind of where my RSD is at right now:
My RSD by the sound of it seems less severe than may cases. Its mainly very weird about temperature. If it gets below the low-mid 80s I have to bundle my foot heavily to keep it warm, and it tends to become very stiff and immobile. But if it gets too warm, which is pretty frequent, it gets red and inflamed and very uncomfortably hot. I wouldn't say it hurts much except if its really too hot (burning) or too cold (aching), although its extremely touchy and easy to injure by overexertion or walking on it when stiff, etc.
I had been able to walk on it pretty well until recently a physical therapist did some ill-advised stuff to it and messed it up so bad I was crutches only for a week, which was apparently enough for the RSD to worsen dramatically just from inactivity and I now find my foot so stiffened and touchy that more than a few steps walking on it seems risky. It also abruptly spread to my other foot, which I had slightly injured, and for awhile I was getting an exaggerated pain sensation in addition to hot and cold, although its tapering off a bit now.
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Hi Wolf and Welcome to Neurotalk,
I'm so sorry for your diagnosis, but glad you were diagnosed early. You have the best opportunity for remission in the early stages. Physical therapy was a lifesaver for me. I also used massage therapy, gently and water therapy. The water needs to be 86 degrees. There are public pools, that offer water aerobics at very low cost or just adult times you can do your own or swim. Even your bath tub with epsom salts. My toes were curling and my Dr. had me do exercises and in about 4 months my toes touched the ground again. I have one hand partially paralyzed due to wrong diagnosis and delay of treatment. But I'm grateful to a sports injury hand specialist who diagnosed me in 1 minute from seeing my hand. He did a neuclear med test and was confirmed. I had therapy for desensitization and also did therapy at home. Take 4-5 plastic bowls and put different textures in them. I used cotton balls, coffee grounds, rice, popcorn kernals, sand, run your hand and feet thru the bowls. It's really important to desensitize your limbs.
I have one Dr. who happens to be a neurologist, psychiatrist, & pharmacologist. When I went full body, I really needed to talk to someone and am grateful to find him. Been seeing him for the last 5 years and attribute
my mobility and mental health to him. I see him once every two months. Saw him once a month until 4-6 months ago. Because it was 4 years when I was diagnosed, I've only had p.t. massage therapy and meds.
RSD is an autonomic disorder, which means it involves your involuntary organs. rsdrx.com is an excellent website from a rsd dr. that is now retired. the puzzles list is 140 questions about rsd and his answers. It's an excellent source of information besides the ones already mentioned.
Please read as much as you can. Never hesitate to share you pain and your good days with us. This is a wondeful group who are so compassionate and want to help in any way we can. Like others mentioned, don't waste any time in getting in to a pain dr.
The Mayo Clinic here in Scottsdale, AZ was the site for the ketamine studies a few years ago. 56th street & Mayo Blvd. There is a Dr. there that specializes in the feet. He is the only one I believe. I have a friend that works in administration if you need any names or phone numbers.
Wish you the best and please don't delay. Take care, loretta