Get a referral to see a pain management specialist. Usually this person is an anesthesiologist with advanced training in pain management. I would research each doctor to see if they have a background in crps. If you are successful in finding a doctor like this in your area, he/she would handle all of your care. If you have crps, this doctor would diagnose it through a variety of ways, prescribe all of your treatments, medications, pt., etc. It helps to have one person handling all of it.

I travel to another state for my care because my state is woefully short on specialists in this area. Crps is a complicated disease and finding someone who is up-to-date on it is very important.

Good luck.

I think we have all tried to explain what you need to do in order to obtain/rule out a diagnosis of CRPS.

Its not easy for folks here when you are quite so aggressive in your posts - we can't diagnose anything and we don't know what your 29 year medical history is. We are only trying to help by answering your questions based on our personal experiences and out limited knowledge of what you have said. Everyone here is dealing with chronic pain and other serious associated problems so we all have it tough too. That's what makes us able to empathise and help if you let us.

Thanks for the responses everyone, every bit of info and experience helps in its own way. I sincerely apologize for being rude. I've completely removed myself from society because I know I go against the general grain. Some posts have been exactly what I was asking for and I really do appreciate the effort anyone gives to help someone else.

Hi Cactusfoot, sounds like you have been thru the mill and back. Constant pain is so hard to deal with. Your foot looks terribly painful and swollen. Like I mentioned before, I had RSD for 5 years before being diagnosed. I knew something was really wrong and I needed to get to a different Dr. I actually travelled across the country to a sport injury group (orthopedics) that specialized in athletes. (Eugene, Oregon) where Nike was founded and the summer olympic running trials were done) When the Dr. walked in the room and looked at my hand, he said he was afraid it might be RSD.Was sent for nuclear med. (DYE) tests. Once the RSD was confirmed, he started me on physical therapy, because I had NO motion or use of fingers etc. Came back to Arizona and saw a neurologist who did further studies and confirmed and then saw orthopedic specialist who confirmed it and continued the PT and got partial use of fingers, enough to type but not curl fingers to palm. Grateful for the use I have- A tens unit also helped me in the earlier painful times with the hand. That was ordered by the Oregon Dr. When my Rsd continuted to spread saw two more neurologists who confirmed it was RSD, but unable to stop the spread.
On a note of encouragement, although I have full body RSD, the electric shocks, uncontrollable spasms, have stopped!. I think Neurotin and Lyrica may have helped in that.
I don't know where you live, but my feelings are that if you feel you have RSD, a good sports injury group, may be a good starting point. Professional basketball, football, baseball, hockey, runners, all have good team doctors. Those groups have Drs. that specialize in the foot, or hand, or knee etc. I have called groups up before and asked if they have a dr. knowledeable in RSD. Neurologists, aneseaologists ( who do the nerve blocks) the same way some may have knowledge of RSD. Pain Management centers?
If you post your state or area where you live, you may get some referrals from board members who go to a RSD Dr. in your area. I know how frustrating it is that so few Drs. even know what this condition is or how to go about treating us. Hang in there- Hope you can get some relief soon. Can you even put any weight down on that foot? Glad you are posting- loretta

I use a cane to help keep from stumbling because I can usually put about half or three quarters of my weight on it. Every day is different. I live in southern Arizona but I'm willing to travel anywhere if it can help.

Hi Cactusfoot, I thought you may be in Arizona due to your 'name' I live in Phoenix. There is a RSD support group here that meets once a month and I believe there is one in Tucson too. You can get the address and times thru RSDSA on line. It was here in Scottsdale at the Mayo Clinic that the Ketamine studies were done with 5=6 Dr. Schwartzman was one of them. A friend of mine worked with them during the studies. Dr. Harbot, Dr. Correll were among the group. This was done maybe 10-12years ago before they went up north and set up practice. I have name of neurologist that diagnosed me and is familiar with RSD. Also my orthopedic dr who was responsible for me getting the use of my frozen left hand back. His physical therapy group were good and experienced with RSD. There is another neurologist here that I've gone too that has his own HBOT equipment in his office. He is expensive and I don't believe takes insurance of any kind.
Take care, loretta

I highly recommend the resources available at RSDSA.org. Jim Broatch, the director, is wonderful.

So sorry for all you have been through. I truly hope you find some answers soon.

I could not tolerate Neurontin or Lyrica. I take Topamax, it is also an anti-seizure med, it works well for chronic head pain.

All the best, Sandy

Have you tried swimming? Warm water PT is great for RSD.

In case it is RSD do not use ICE! Do not allow more surgery until you get a diagnosis.

Regular PT can be harmful. Make sure your therapist has RSD experience or is at least knowledgable.

Pics are NOT enough for even a qualified RSD doc to determine what's wrong. There are other disorders that are similar such as neuropathic pain from diabetes.

If your insurance includes mental health services, a pain psychologist would help. Not only is isolation a factor with a severe pain disorder, but there are several things you could use help addressing: financial stress, coming to terms with your changed lifestyle, how other's deal with your illness, potential disability, learning to reduce stress, learning coping strategies such as deep breathing, etc... And you might not click with the first one you meet--but there are good ones out there.

BTW, are you hypersensitive to touch? Vibrations? Noise?

Missed one of your later posts. You said you weren't asking for this, but if you haven't read the diagnostic criteria here, http://rsdfoundation.org/en/en_clini...html#DIAGNOSIS
then this might help.

Good luck!

Yeah found out shortly after leaving the hospital when the pain set in that ice made it worse. Have stayed away from it since. Warm/hot water is soothing but the motion of any substance in certain areas is intolerable. It's a lot of nerve damage from about half calf down, leaving me with a slab of numbness in the center and a literal gateway to hell on the left side of the foot, ankle and heel. Fortunately the right side of the foot is mostly normal, the big toe is healthy and strong, and my right leg has no problems. The first 3 surgeries were done in the 2 weeks following the injury where they removed some shattered bones, adjusted some relocated stuff and cleaned it up. The next 2 were about 5 years apart starting 5ish years later, and the last one was 14 months ago. I don't want any more surgeries, I've never wanted any except they say they know what is wrong and how to fix it and when you constantly hit that 10 on the meter throughout your most careful of days you look for ways out. And when they are wrong and it doesn't make things any better only worse they say NOW WE REALLY KNOW! LET US CUT YOU AGAIN LOL