Ignorance about RSD
 

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?

I agree about the ignorance of some doctors and RSD!!!

My family doc tried to pin my pain on Fibro... I bluntly said that I may now have Fibro but I had NONE of the symptoms when I was diagnosed with RSD by seven different doctors.

When I said this, he just looked at me and then dropped the subject and no longer addressed my pain. He just did a quick physical and ordered various blood tests....

:(
Abbie

Hi RN and welcome to neurotalk,
Although we are not Drs., there are years and years of experience =living with RSD. Your ortho is protecting himself!- He is minimizing the symptoms-could it be fear of lawsuit? That's a guess, if so,
he'll put you off until the 2 year statue of limititions is over with.
Are you in physical therapy? Physical therapy and meds has kept me mobile and not sensitive to touch. RSD is an autonomic disorder, affecting involuntary organs.. Anti-anxiety med is good for some of us. RSD affects the limbic part of our brain-some of us forget words, while we are speaking, grasp for wording-panic attacks can be a sign-I had never had them before. High and or Low blood pressure. circulation, poor immune system are all signs of rsd.Many are on disability. It was 4 years before I was diagnosed. I got it right after surgery.
Ask anything youu want, you'll get a lot of information and support. Two sources for research are RSDSA - you can put your zip code in and find the closest support group. Also rsdrx.com is a site and under puzzles list are 146 questions with Drs. answer. Dr. Hooshmand is retired, but some good information. Take care, loretta

Orthopedic docs are notoriously ignorant of RSD! My first doc was an ortho, and he accused me of malingering, and sent me off to a psych. That's when I started my journey to find a doctor, which was the first 7 years!

Thank God my Chiro recognized it, and sent me to Dr S, in Philly. Got me in quick, too.

This is YOUR Body, YOUR Life!
If this (doctor) were say, a friend, you'd "defriend" him quickly!
Don't be afraid to do that now, he's not got your best interest at heart, I don't it's fear of anything, other than just plain ignorance!

Your PM doc should know a good Neuro for you!

Be Well!

Pete
asb

thanks Loretta
 

Thanks Loretta for the info. I have poor word finding problems and short term memory which i just figured it was the meds. I am in PT/OT and trialed SCS. Still undecided. Researching ketamine now.

Pete thanks for the advice. You say you went to Dr. S. Did u have ketamine inf?

RN,
I had a 10 day, 24/7 Lidocaine infusion. It worked but, not so much that I'd bother again...
I'm kind of far gone having had this since '83. Had the Lidocaine in 2001.

I see his ex partner, (and still good friend) Dr.Knobler now in Fort Washington, PA. I've know them both since about 89-90, and they're both great doctors for rsd!

Hope you do well!
(I truly do think it's time for you to move on from the Ortho, and on to a knowledgeable Neuro)~!

Blessings to you, we're all here for you!

Pete
asb

If I had a dime every doctor over the past year and a half that told me wrong info about my RSD, I would be a rich woman. I went for a check-up at my MD's yesterday and he is the ONLY person who actually knows how to treat me. He has MS, so he understands what it is that I go through. My neurologist has a fit when I look things up on the internet, but I had the symptoms of RSD long before I started looking on the web. My MD just rolled his eyes and told he that I need to educate myself so I can be the best patient I can be for the doctors. I told him that I found this board and he was really excited...I told him that there is an MS board, so he may be joining.

Being brushed off by doctors is a normal side effect of our treatment as RSD patients...I'm getting used to it, but I am armed with way more knowledge than I used to and I think it ****** my neurologist off, because I can back up what I am presenting to him.
Good luck,
Cindi:)

Thank u so much i will look up fmichael for the link!!

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.:mad: 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. :hug:

neurology
 

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.

In need of a doctor who knows
 

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!!