I am new to this horrible syndrome.
My question is what physicial therapy are you doing for RDS/CPRS?
Are you going to PT? What is the therapist doing for you?
Are you doing things at home?

I just need some suggestions as what to expect/what to ask for.
Thanks for all your input.

Warm water therapy was the best therapy for me when I was at my worst. I found a therapeutic therapy pool at our town's recreation center, and used it daily whenever I could. I have cold RSD, and the warm water felt awesome. Usually warm water pools are heated to at least 93 degrees. Try to keep moving as much as you can.

I would urge you to be extremely careful when allowing any physical therapist to touch you. Most have no clue what they are doing. And even if they do know what they are doing, they honestly don't seem to care whether or not they hurt you. Make sure anyone you use has good credentials and is experienced in working with RSD patients, or is at least willing to learn about RSD. Your best bet is to perhaps get a list of home exercises from a PT and not let them put their hands on you. I used to flare 10-12 hours after my appts. and it was truly a nightmare.

I had about 200 units of physical therapy over the course of a few years. First when I was initially injured, and then after I had 2 shoulder surgeries, and then when I was diagnosed with RSD. I thought physical therapy was the right thing to do when you were diagnosed with RSD, but honestly, I should have quit trying at it well before I did....

The best of luck to you, Sandy

Welcome to the forum. Sorry we had to meet like this.

I have CRPS in the foot as well. It is the result of multiple toe surgeries.

This is a good resource and a good place to vent.......

You will find that EVERY patient is unique as far as treatments. There are similarities of course, but you will have to find what works for you through trial and error.

It is best to use a multi-disciplinary approach to this disorder. The #1 piece of advice I can give you is to assemble a team of professionals that understands this disorder. That in itself can be difficult. Many doctors have had little or no experience with this. If you find one of those, say thank you very much and keep looking.

I use a podiatrist, physical therapist, chiropractor, massage therapist, general practitioner and a pain management doctor. Each one brings something unique to the table that has helped me. I do most of my own physical therapy now, as I was trained by a very competent and compassionate physical therapist.

Give us some details as to how long you had it, cause, specific symptoms, things you have tried, etc. That will help us in making suggestions.

I haven't had it very long, but it seems like a life time already. As I am the bread winner for the family. My husband had a spinal cord injury just over a year and half ago. We are trying to get his disability approved. I am used up all of my PTO and medical leave, so my company does not have to leave my job open for me. And I now have to pay COBRA to keep the insurance but we cannot afford that as what is left in the savings will have to go to rent this month.

I had Tarsal Tunnel Release on my left ankle on 03/22. No weight bearing for 2 weeks after the staples were taken out he said that I could use my boot and crutches to walk but when I put my foot down to walk it felt like I was walking on broken glass and I kept trying to put my foot down and walking. The surgeon said he never heard of that, the "broken glass" feeling. So after multiple visits to the surgeon and a trip to the ER because the sole of my foot was blue (I really thought they were going have to amputate the foot) and telling him my foot hurt he gave a referrel to a pain management clinic.
My foot hurt so bad by that time all I could do was cry and this was not using the foot. I had burning, shooting electrical jerking sensations in my foot going to my toes. I called his office one last time for help with the pain and he refused (that was a Friday afternoon) so on my 50th birthday I went to a neurologist I had seen before for my neck. He game me neurontin and about 3 other perscriptions. He gave the diagnosis of RDS. I did go to the pain clinic also and she called it CRPS (05/31) and started LSB. I have had three. This las one helped alot until I went to PT the next day which was yesterday.
At first PT was just post surgery then for RSD using the pool put this still hurts and my toes hurt the worst but it still hurts the inside of my left left to the ankle then the whole sole and heel of the foot. It is mostly red alot then it can be white and blue. There is so much atrophy in the leg and foot. After I walk on it for a couple of minutes it starts to swell. By then end of the day its about twice the size of my other foot/leg.
The foot is so sensative I do not wear socks or but the sheets on it. the last time I wore closed shoes my foot feel a sleep and didn't waske up until I took the shoe off.
I have another appointment with PM doctor to see where we go from here.??
That's most of my story. Not sure if you can follow, seems like I am just rambling.

Rambling is okay. It goes with the territory. No worries....! Sorry to hear about your financial situation; it is so common here. I am now on disability myself because of the CRPS. Is only about a third of what I used to make, but I'll take it. Better than no income at all. Disability is a possibility here, if you decide to test those waters. Keep a very good medical records trail.

Physical therapy is essential, but must not be overdone. There are some therapists that know how to handle CRPS, and others don't. ASK THEM IF THEY HAVE HAD EXPERIENCE! And be honest with them about your pain level. You must be blunt and up front with them. Too aggressive of a therapy can set you back.

It took me a few months of very slow progression of physical therapy to get my foot back to a normal size.

The sensitivity you are experiencing is a classic symptom of CRPS.

What specific drugs are you using? For me, neurontin is the cornerstone of my pharmaceutical treatment. It is one of the first drugs that many doctors will try. It was originally for treating seizures (epilepsy), but seems to work pretty well for nerve pain as well. They call that "off label" usage.

I also use naproxen sodium (Aleve) 220mg, two of them.....twice a day. It helps with inflammation and ticks the pain a bit. I used to be on percocet, but weaned myself off of it because I got somewhat better and didn't want to be addicted to narcotics. That was fun with the withdrawal symptoms, but I'm doing okay without it.

I think the key for you is good physical therapy and finding the right mix of drugs. Your pain management doctor can be the key to the drugs, and you need to find the RIGHT physical therapist. If you aren't happy with the first one or the second one, KEEP LOOKING until you find one that you like. It is essential to your progression. I love warm water therapy. It feels great and loosens things up to allow the necessary physical therapy.

Some very good links. Knowledge is power here. Check them out.................

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://rsdrx.com/

Good luck!

I have RSD in both feet and now it spread to my hands and arms. I go to pain management and get injections. I also swim and lift weights. Pool therapy is the best. I go to DR. Schwartzman in Phila PA. he is well known nationally and internationally. Lidocaine infusions are supposed to be really helpful. The big problem is getting the insurance to pay for it, since it is considered in the experimental stage. Another DR. suggested Ketamine infusions, which I am seriously considering since I am out of work because I just had my leg reconstructed. My right leg is all metal from my knee up to my hip. I wake up in pain every day; but I try and keep a good attitude. I can't wait to go back to work, it takes my mind off of it. The big thing is to find a good DR. that knows about RSD and has some empathy, and really understands the disease.

I am sorry you are dealing with this but welcome to the boards. Pre rsd and pn dx they thought I had TTS. I did not though. I was in an air boot for many months which actually made worse in the long run. I was so sensitive and lacked range of motion. Getting out of the air boot and in shoes was horrid pain. I felt like knives were in my foot and a broken ankle.
I am having a hard time with socks again but for me I had to slowly reintroduce these items. I could open a sock shop with how many I have tried.
As for PT well I have not had the best luck with it. When I went to Cleveland Clinic though program they said I had to get moving or I too would atrophy. I already have little range of motion. So I started walking on my own and increased my time.
I think we are all different in terms of the activity which is most helpful. I do feel starting slow and working forward is better. Part of the problem at CC is they pushed me too much and that was even said after they felt I was pushed too much. That brings me to my next point is how key it is to work with people who know a lot about rsd. Did you mention have you been to a neurologist? If not I would go to one. Has your pain doctor put you on meds like neurontin or talked about other procedures?
Hang in there

I agree that a group of specialists is a great way to get things going. If you don't like the specialists, find another. This is your body and you have control over who touches it. I have been to physical therapy twice for my RSD and they couldn't really do much for me, but each client is different. I would like to add to the list of specialties, accupunture and behavior therapy (therapist, counselor) both need to be experienced with RSD and have, or have had several RSD clients. My therapists is a great place to vent, I work through my disability with him, I am fully disabled have had to leave my job, can't drive...have gave up a lot of my independence. My therapists really understands the illness and is extremely helpful. Accupunture is been great for me at handling the side effects of my many medications, it has also decreased sensitivity slightly.
Best Wishes,
Andrea

Thanks everyone for the encouragement. It's hard with all that pain as everyone here is well aware. Right now I just have the PM and a neurologist.
I am thinking about looking for a physiatrist.

I am changing physical therapists. I have an appointment on Monday with a place that has a dedicated therapy pool which is heated to 92 degrees. They told me they have treated patients with RSD. I guess that doesn't really mean they specialize in RSD.

SandyRI My foot always hurts worse after pt and sometimes I think it does more harm than good.

I have had 3 LSB those are the only injections that I have had. I do take neurontin, muscle relaxers, pain meds, zanax and naproxen. I am not sure how to find RSD specialists in my area. I have checked on the internet but that did not work. I live in an area that has medical expertise so one would think I could find a specialist or two.

daniella, looking back, I agree with you, I believe that the air boot made my foot worse before and after the surgery.

birchlake I thought about going to a chiropractor. I have been to one in the past but none in the area in which I live now. I was looking up chiropractors that do Active Release Therapy and one was listed that also specialized in nerve entrapments. But they did not take my insurance.

painfull I tried accupuncture my foot did not like it. I think it was the specific kind he did though. Don't have the courage at this time to try again.

Lorraine Shade I hear, read really, that your doctor is the specialist for RSD.

Dear Paininthefoot,

Since you are still in the early phase of your RSD, remission is more likely now than at any other time.

I am doing fairly well with ketamine infusions. I was injured in Nov 2006, diagnosed with RSD in June of 2008 and didn't start ketamine until April 2010. There was a whole lot of horrible painful stuff that happened in between, and sometimes I am bitter about it. But I am much better now than I was!! My ketamine is possible because my insurance pays 100% of the cost of my infusions, I was injured on the job.

Birchlake's suggestions are awesome. Read as much as you can, and remember that you have to "use it or lose it."

Please take care and keep in touch, xoxox Sandy