[Fattieratties]

Hello, my name is richard and I was diagnosed south RDS in 1999. I remember all the bring test and millions of needles leading up to a very bad decision to receive a surgical lumbar sympathectomy. 3 years later I had an accident that left me needing a an ankle reconstruction.after that surgery things started getting worse.I now have the pain in my left leg along with constant swelling of that leg. Also I'm starting to have the same symptoms in both arms and hands.I have severe headaches all the time and most recently I've had unbearable lower back pain.none of the doctors I have seen seem to know much if anything about RSD. so far all they have done is throw pain polls at me and glare like tours all I came there for.its so frustrating I want to screemn can any one please help me try and figure out if any of these are connected or not and tell me what I should do. Thank you very much fruit your time.

[catra121]

Hi Richard. I'm sorry to hear what you are going through. Doctors...sometimes you just want to smack them for their incompetence when it comes to RSD. I think your first order of business needs to be to find a doctor who specializes in RSD. Not just one who may or may not know what it is, but who actually specializes in it. There are some links at the top of the forum in a stickied post that you might find helpful as resources. If you tell us where you are from, some members may be able to help you find a good doctor in your area for RSD. You can also do a search here on NT because you'll find many posts where people were looking for doctors in a particular area and one of those may have some helpful information too.

Your new symptoms could definitely be connected with RSD...especially if the doctors can't find anything else to explain the problems. But you really need to see a doctor who specializes in RSD to be sure. If it's RSD, then the "throwing pills at it" method doesn't really work...as I am sure you know quite well.

In the mean time there's really not a whole lot I can recommend other than dumping your current doctors and getting to one who knows what's what. I know it's not much but I know that taking hot baths with epsom salts helps me, as well as an ultrasound heat therapy treatment right after the bath and then using a TENS unit (both of these devices can be ordered off of amazon.com if you are interested in trying them). Just be cautious with any treatment because what helps one person and cause problems for another. I don't know if you are in any physical therapy but this would be a great place to request trying TENS and ultrasound to see if they work.

And remember...immobilization and ice are two of the worst things you can do for RSD. So make sure to keep trying to move that leg even if it's only a little bit. I don't know if what you have is RSD but if the other doctors don't have any other answers for you then it could be. Get to someone who knows what they are doing with RSD before you get any worse.

Take care...and if you have any more questions please post them. Everyone here is very helpful and I have learned so much on here from others. Just remember that what works for one person doesn't necessarily work for the next. We are all different and respond to different meds and treatments...which is part of why so many doctors struggle with RSD...it's just so WIERD...

[Fattieratties]

First I want to start by thanking you for your time and quick response. Currently I live in virginia beach virginia. My primary care dr has no clue about RSD and the only other doctor I see is a pain management dr. I'm gonna look around and try to find a dr who specializes in RSD. I do use a tens unit but the only other thing I have for treatment is the hot tub at the ymca and my pain meds. Its been hard trying to find treatment because I just recently got health insurance back. I'll let you know the progreas. Thank you for your kind response.it is greatly appreciated.
Richard

[AintSoBad]

I agree w/ Catra, but for dumping your current doctors. UNTIL and UNLESS you get better ones. I had a chiropractor who realized I had RSD. Then, got me to doctor Schwartzman in Philly. Find a University Hospital as close as you can and get to the 'Chief of Neurology".
Ask about their knowledge and treatment of RSD. DO NOT BE SHY! This is Your Life!

Some (many) neurologists, (the doctors who should be treating rsd, get into neuro, to keep their hands clean. That's OK, so long as they know what they're doing!
So ask lots of questions, state your symptoms and concerns, and expect to hear the right answers, DEFINITIVE ANSWERS!
AGain, don't be shy!
And, try a chiropractor in the meantime....

Pete

ASB

[Nanc]

Hi Richard! So sorry for what you are dealing with. It is terrible when we suffer so much and have to deal with doctors who are just flat-out stupid! (Sorry, but I have had several of them) Anyway, I agree with catra that you need to find a knowledgeable doctor first thing. That, I know, is a huge challenge in itself. From recent experience, I would not recommend UVA's pain clinic at all. They were great back in the early 90's when I went there, but not now. The dr I saw there a little more than a year ago was a joke.
Did you look into MCV/VCU? There seems to be some really good drs there. I do not see anyone there for RSD, but I do for migraines. Their Neurology dept is supposed to be the best. I have heard that there are RSD specialists there as well. I see someone else to manage my pain and he implanted both spinal cord stimulators in me last year. It took a long time to find this dr, but I love him!! He is at Stony Point Spine Center here in Richmond.
I cannot tolerate most meds, pt, tens, bath soaks, so the SCS works for me. Everyone is different so you really need to find someone who is experienced and open minded!!

I wish you luck!!
Nanc

[Fattieratties]

Hello everyone and again thank you for your informative responses.. Funny thing happened while I was doing some research on doctors in my area who specialize in RSD in my area. The doctor I see for pain management pops up at the top of the list...I must say I didn't see that one coming. I've set am appointment for the 17th so fingers crossed she will be able top get me started on a treatment or at the very least lead me in a direction to find someone who will be able to help. At least for now I have some hope that things might be looking up. I've got my fingers and toes crossed, well as best as I can cross them lol.again I want to say thank you to everyone for your kind and informative words.I'll keep you updated we to what's going thank you and keep smiling..

[Fattieratties]

My dr got me in today but the appointment was pretty much pointless. She put me on neurontin but dismissed everything including my new symptoms. She said this new medicine would take care of everything. I really hate it when I feel like everything I say or how I'm feeling is dismissed. I'm gonna give this new medicine a chance but its still frustrating.I've also looked for other specialist in my area but the closest one I can find is in Richmond virginia about 2 hours away.grrr.why must things things always be so difficult. Thank you for letting me vent and if anyone has any ideas please pass them on.

[betsykk]

Hi Richard,
I live about an hour north of you and have a 20 yr old daughter with RSD. You are right, there are not a lot of good doctors in our area. Dr Hamza at Stony Point in Richmond is ok; he would most likely want to try you on a pain pump to see how you do. We see Dr Chin in DC for 3 day ketamine infusions. It has given my daughter some good relief. There is a good practice in NC..I think it is the Raleigh area if you are interested in exploring ketamine. There is a great group on FB called The Ketamine Klub for CRPS/RSD. They have a document with all the doctors that patients have reported that use ketamine. It's a good list because all the doctors listed use other treatments and not just ketamine and there is some great info on insurance as well.

[reluctant@thetable]

Originally Posted by betsykk

Hi Richard,
I live about an hour north of you and have a 20 yr old daughter with RSD. You are right, there are not a lot of good doctors in our area. Dr Hamza at Stony Point in Richmond is ok; he would most likely want to try you on a pain pump to see how you do. We see Dr Chin in DC for 3 day ketamine infusions. It has given my daughter some good relief. There is a good practice in NC..I think it is the Raleigh area if you are interested in exploring ketamine. There is a great group on FB called The Ketamine Klub for CRPS/RSD. They have a document with all the doctors that patients have reported that use ketamine. It's a good list because all the doctors listed use other treatments and not just ketamine and there is some great info on insurance as well.

Hi Betsy. I have a question about the Ketamine Klub on facebook. Perhaps I am doing something wrong. A number of weeks ago I went to the facebook site and saw there are 2 Ketamine Klubs. One is a closed group with 200 plus members and the other, which seems to be a more recent group, does not appear to be closed. I requested to join both clubs because I am trying to get Ketamine treatments. I heard back from one group asking me for more information about myself which I provided. I haven't heard back since and haven't been accepted.

I also read that someone else on this forum was having difficulty getting accepted. Do you know anything about this?

Thanks.