Hi Rn, Thanks for the return letter. Are you doing any hydro therapy? I've had RSD 15 years . Maybe 3 years ago, my toes started curling up off the floor, and my Dr. had me do dailey exercises in our pool . I faithfully did the exercises and in about 4 months, my toes were touching the ground again. I'm so grateful. I am very aware of my limbs and any changes.
I wasn't diagnosed for 4 years, but had therapy for frozen shoulder (really rsd following surgery) I got range of motion back and remission. They warned me I may get it in other side and I did. More therapy and another remission. Was water skiing and felt pull in left hand. Hand frozen like a board, Misdiagnosed with RA, went to sports injury dr. and diagnosed with rsd in 1 minute, followed up with test. Got right into therapy and got about 50% range of motion in my hand. partially paralyzed, but grateful I can partially bend fingers. went to other hand and got right in for therapy.
It's the Limbic part of our brain that causes the symptoms you mentioned. I also have high and low blood pressure-rsd related.
I have internal RSD also. Please read about the SCS from ones that have had it. There are some good accounts, but some very very bad ones too. Spread can occur from SCS.
Take care. your friend, loretta

Hey Loretta, Oh my gosh you have been thru a lot. It's unbelievable how the brain works. What does internal RSD feel like? Burn, muscle spasms? My therapist just mentioned trying hydro therapy. I have a pool, but didnt get in this summer b/c i was afraid of it being cold. Thinking of getting a hot tub, but don't know if i could go out in winter to get in it. I do use the tub and it does make it feel better. Has anyone used an outdoor hot tub in the winter? The thought of it makes me shiver. I have read some about SCS, but not many positive. It's like a double edged sword-get one it may cause spreading, dont and it may spread. I'M soo confused which adds to my confusion! I am going to ask PM Dr.about lidocaine inf. Are they FDA approved? See ya. your friend, donna

I know what it feels like to be told its all in your head. You leave the Dr. office and feel like you are crazy. I have more than one Dr. tell me if you would just get off all the meds. you would be fine, the pain is all in your head. I had one Dr. pretty much destroy my insurance claim. Only we know how we feel and what hurts. It is hard some days. One thing that has helped me is hot yoga. It is very hard at first and difficult to get used to, but really helps to relax all the muscles and sweat out toxins.

my neurologist today told me rsd dont spread.. and she thinks i have fibro.. they want to test me for it.. she wants my medical records sent to them to look them over. then they will set up tests. my attorney said NO!. i am trying to get into another dr.. one who does ketamine.. who actually knows about rsd.. she said its callled regional so it means, there are 2 different kinds, and that the kind i have dont spread.. i am even more confused than i was when i went. i just wanted 1 question answered.. i went in for a checkup on migranes.. its a pain in the ****.. I just need some answers. and everyone has different ones.

QUOTE=RNcrps2;590413]Recently went to ortho. dr. (who did past surgery) and he finally admitted that i have RSD but all of his information is wrong. He says things like: oh it doesn't spread, it usually gets better and goes away, it's not chronic, and I think your pain Dr. has you on too much medicine. When i attempted to correct him- he just looked at me like i was wrong. I left the office soo angry!! I felt like he didn't believe the pain RSD causes. My pain Dr. said my RSD is over a year and that it is chronic. That there is a chance of it spreading if we don't get it under control. He has me on lyrica, cymbalta, kadian and lidoderm patches. Everything i have read says it needs a combination of meds to get under control. I trust my pain Dr. Anyone know of current medical articles on RSD that i can give this ortho dr.? Has anyone had this problem?[/QUOTE]

I have had RSD for over 8 years.It has gone from 1 foot,knee,to the other foot,and back to the original site but niow in the hip and inner thigh and left buttock.I am in pain every stinking day.Guess who I see where I live?A PA.That is who is handling me.When I mention pain I guess the three Hydocodones I do a day plus the 5 Neurontins should cover.hah! Well, they don't feel my body.I recently tried to explain That I know my Hip area is getting RSD-they gave me a darn Cortisone shot that did not work.Said it was Bursitis.Not 1 X-Ray taken before this shot.IF I go for good help I too will have to travel hundreds of miles.There is no one,except my wife,who knows the pain I go through.I am the only one working now as my wife was let go of her job after typing for over 20 years.She ran out of Family Medical Leave due to the lengthy recovery time of the Carpel Tunnel she got.Nice huh?Well that is Maine for ya.All for the workers.HELP!!