From:
http://www.rsdhope.org/Showpage.asp?...9&PGCT_ID=4012

An article for you, that may give you some ideas/ understanding.


PHYSICAL THERAPY - HOW DO YOU FIND A THERAPIST ?

HOW DO YOU LOCATE A PHYSICAL THERAPIST KNOWLEDGEABLE ABOUT RSD/CRPS?


There have been a lot of questions recently concerning this topic so we thought we would put together some thoughts and tidbits that we have learned over the last decade or so.

The good news is that current RSD/CRPS patients have a great head-start on those of us who came before because you have so much more knowledge about RSD/CRPS than we did a dozen years ago. Not only what you yourselves have learned but also what is available on the internet through websites and listserves, etc.

With this knowledge in hand, you can call and talk to the lead therapists in these clinics and ask them about their knowledge of RSD. You can find out very quickly how much they actually know about the disease and about treating it with PT by asking a few simple questions. Their answers will tell you whether or not to trust your body and health with them. In the hands of the wrong therapist your RSD can actually accelerate and worsen the same as in the hands of the wrong Doctor.

Here are the basic questions I would ask a Physical Therapist;

1) Are you familiar with Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome?

If the answer is no then you probably should move on. There may be cases where you don't have many options in your area and you may be able to find a therapist who is willing to learn about the disease. In which case we have tapes, brochures, and of course the website to help. Your Doctor may also be able to provide guidelines for them.

I know that some people suggest just only giving them the initials RSD and seeing if they know what they stand for, or not asking about CRPS and seeing if they are up to date with the latest name change but this isn't about games. You want to determine their knowledge of actually treating the disease. They may not know the letters but may know the disease. They don't have to know everything about the disease, that is where your Doctor comes in. What is paramount here is DO THEY KNOW HOW TO TREAT YOU?

2) Have you treated RSD/CRPS patients in the past, and/or currently, and if so, how many?

Ideally the answer should be four, five or more but if you don't live in a large city that may not be feasible based on the number of patients available. However, it isn't enough for them to simply answer "None but we do treat Chronic Pain patients".

RSD therapy and CP therapy are two totally different animals due to two key components; allodynia and the adverse reaction RSD patients have to ice, or hot/cold contrast therapy. We touch on allodynia below and most everyone knows how ice causes RSD to worsen and/or spread.

3) Do you have a therapeutic or warm water pool?

This is a pool that is at least 88 degrees. It is used for patients with all sorts of injuries as well as diseases like arthritis, fibromyalgia, and of course, RSD. It is the BEST form of therapy for RSD. It is without a doubt the form of therapy RSD patients should be doing in our opinion. From everything we have seen, heard, and read over the years it seems to have the best results with the least impact. It also has the added benefit of reducing allodynia in many cases while at the same time increasing mobility. The end result being not only a reduction in pain but oftentimes a reduction in medication as well. We do have an article on the website about this;

AQUA THERAPY

Allodynia is part of the First of the Four Symptoms of RSD, see FOUR MAIN SYMPTOMS OF RSD

Allodynia is an extreme sensitivity to touch. Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations.

This is one of the most painful parts about RSD and this side effect can be reduced by Aqua Therapy. It takes quite a few visits but eventually you will notice a difference and it is amazing! This also seems to be the least painful way of reducing allodynia. After all, who doesn't like a nice dip in a warm pool? It is especially nice during the winter for those of us who live up north!

If you are on Medicare, this type of therapy is typically paid for by Medicare and there is no Physical Therapy cap for RSD patients. Your Doctor just has to write the prescription for it and, of course, you have to show improvement. A decrease in the allodynia is enough to show improvement and continue treatment. Being in the pool you greatly decrease the impact on your body because the water displaces your weight.

Land therapy, in contrast, whether it be massage, band therapy, exercises, or any type of stretching where they stretch your body by grabbing you and pulling, can be very painful due to the allodynia as well as the impact of the exercises themselves on RSD limbs.

4) If they took you on as a patient would they automatically put you into their "chronic pain patient program" or would they be able to customize a program for you based on the needs of an RSD patient?

This may seem like a dumb question because your thought would be, of course they would tailor any new patient therapy to the needs of the patient. However, what ends up happening in many cases, especially with certain types of insurance and in some WC cases, they are told what program to put you into and it is usually the Chronic Pain Patient Program. This is a standardized program and is fine for most types of chronic pain. It is set on the principle of NO PAIN, NO GAIN! It can involve everything from classroom instruction (and many RSD patients cannot sit for very long without pain), to land therapy (which we all know can result in extra pain for RSD patients).

With RSD, NO PAIN, is ALL THE GAIN, as a Doctor friend of mine used to say. The PT program for an RSD patient must be a combination of Aqua Therapy, a basic water therapy program typically based on the Arthritis Society's Water Therapy Classes. It involves stretching, walking, and even some light weights, but all done in the pool. In addition some therapists will use warm packs afterwards.

It is important to remember that while the warm packs work very well for most patients they must never be followed by the cold or ice packs as the ice will simply further damage the already weakened myelin sheath surrounding our already damaged nerves. Even though the ice may feel good for a brief time it will end up causing severe damage and repeated use of ice packs or hot/cold contrast therapy will, in many cases, accelerate the RSD/CRPS.

5) Where do I start to look for such a Physical Therapist?

The best place to start is in the nearest large hospital. Sometimes you may have to travel an hour or more but if you find the right therapist it is worth it. Since many of your questions can be asked over the phone, call as many places as possible. Don't be put off by the person who answers the phone either. You want to talk to the Director of the clinic if possible or, at the very least, one or more of the physical therapists.

If they can't talk to you right then leave your name, number, and the reason why you called (looking for a therapist who treats Reflex Sympathetic Dystrophy), and a time to call you back. Find out when a good time to call back is; sometimes the mornings are very busy in clinics and the afternoon is a better time to be able to chat with someone, it all depends on the clinic.

There is nothing wrong with the smaller physical therapy centers but they are less likely to have a therapeutic pool so it is best to stick with the larger hospitals.

Also, talk with your Doctors; your RSD Doctor, your GP, etc. Chances are good they know of one they can recommend.

Remember, a good Physical Therapist can be a key member of your medical team and play a very important role in helping you get your life back!

Hopefully this will give you a head start! If you have ideas that you would like to add, send them in to RSDHope@mail.org

Peace, Keith Orsini


Keith has had RSD/CRPS since 1974. He has full body RSD/CRPS. He is not a Medical Doctor. Be sure to talk over any advice with your Doctor.