Finding a Physical Therapist - Part Two
4) If they took you on as a patient would they automatically put you into their "pain patient program" or would they be able to customize a program for you based on the needs of an CRPS patient? Would they treat your "chronic pain" differently from "acute pain"?
Many physical therapy clinics are finally coming around on these questions but it is a slow turnaround. First, let us address the difference between acute pain and chronic pain. Doctor Tim Sams in his book called "ABC's of Pain Relief and Treatment", states "Chronic pain is not simply acute pain that doesn't go away", and " If short-term and long-term pain were not the same thing, then why would the treatments for acute pain make chronic pain go away? The answer is that they do not. The treatments for acute pain can be helpful at best and occasionally destructive at worst."
All too often the primary goal of the chronic pain patient in going into physical therapy and the goal of the Doctor/physical therapist are not the same. While the pain patient is seeking to reduce their pain, the medical professionals are simply seeking to increase the ROM (range of motion). If decreased pain is a by-product that is a bonus, but it is all about getting the patient moving again.
This can create problems in that the chronic pain patient becomes discouraged if, within the first three to four weeks they don't feel any decrease in pain, even if their ROM has changed. While the acute-pain patient can see immediate gains, the chronic pain patient needs to look long-term. They need to look 3 to 6 months and more down the road in their physical therapy plan for their first gains because they are in this for the long-haul.
However, what ends up happening in many cases, especially with certain types of insurance and in some WC cases, is that they are told what program to put you in and it is usually the Pain Patient Program. This is a standardized program which is fine for most types of acute pain. It is set on the principle of NO PAIN, NO GAIN! It can involve everything from classroom instruction (many CRPS patients cannot sit for very long without pain), to land therapy, sometimes very aggressive land therapy.
With CRPS, NO PAIN is ALL THE GAIN, as a Doctor friend of mine used to say. The PT program for a CRPS patient must be a combination of Aqua Therapy, a basic water therapy program typically based on the Arthritis Society's Water Therapy Classes, cardio therapy when possible, and ROM exercises. The Aqua Therapy is the most beneficial form of therapy for CRPS patients. It involves stretching, walking, and even some light weights, but all done in a warm water pool. It has the added benefit of reducing allodynia (sensitivity to touch) in most cases as well.
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 CRPS.
Ask about how they treat the hypersensitivity issue that most CRPS patients have. This again goes to the No Pain Is ALL The Gain and "do not treat CRPS patients the same way you treat all other chronic pain patients" when it comes to physical therapy programs. Rubbing the CRPS area until it is raw and the nerves are completely shot is not much different than destroying them with extended use of cold. See Dr Hooshmand's Puzzle on this. You must use the time in Physical Therapy to try and repair the protective sheath surrounding the nerves not try and destroy them.
With CRPS sometimes doing nothing is better than doing the wrong thing if the wrong thing ends up causing irreversible damage or spread of the disease. But you don't have to do nothing, most everyone can do something. Soak that extremity in warm water if possible. Epsom salts have magnesium which is wonderful to soak into your body for CRPS patients in a warm bath (reduces inflammation, helps the nerve function, helps absorption of nutrients, and can even ease migraines in some people).
There are all kinds of exercise programs for everyone; from those unable to get of of their wheelchairs (who can be placed in the pool with special winches), to pool aerobics, you can walk in place in the water or do much more aggressive ZOOMBA in there, walk on land in 15 to 30 minute intervals four to five times a day, slow walk or walk more vigorously, or combine and alternate any of the above.
These are just a few options obviously. Movement is key to keeping ahead of this disease. It doesn't have to be physical therapy and it won't always be physical therapy for everyone. Maybe it would simply be better for you to LIVE LIFE!
You can get out of the house and volunteer in your town one, two, or more days a week for an hour or two a day exercising your body and your mind because remember, unless we keep our mind sharp we won't remember why we are exercising in the first place. CRPS is already attacking our memory! Volunteer at your local church, shelter, or school. Churches and schools are always looking for people to come in and help. You set your own hours and they understand when you tell them you can only come in for an hour or two at a time one or two days a week. The important thing is that you are doing something!
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 away then leave your name, number, and the reason why you called (looking for a therapist who treats Complex Regional Pain Syndrome), and a time to call you back.
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 Pain Care Doctor, your GP, etc. Chances are good they know of one they can recommend.
6) Should CRPS Patients use ICE in ANY part of their Physical Therapy?
The short and long answer is ABSOLUTELY NOT, if at all possible! Not in ice packs, not in hot/cold contrast therapy, not cold packs, not ice in any form, with a very few exceptions (see below). For a more detailed answer read the information regarding CRPS and ICE. It is very important.
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, and a bad one can accelerate your CRPS and possibly even make it worsen and/or spread.
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
The American RSDHope team!
THE EXCEPTIONS REGARDING ICE - The exceptions deal with those times when there is an injury, blunt force trauma (severe fall, blunt force impact, etc.) where there is extreme swelling involved and their needs to be some ice applied to the area. What is the procedure?
The R.I.C.E. Method; If you suffer an injury such as a sprain, strain, muscle pull, or tear, immediate first aid treatment can prevent complications and help you heal faster. One of the most popular acronyms to remember if you get a sports injury is PRICE, which stands for Protection, Rest, Ice, Compression and Elevation. Using these immediate first aid measures is believed to relieve pain, limit swelling and protect the injured soft tissue.
FOR CRPS PATIENTS this can get tricky because the CRPS affected areas are typically aggravated negatively by the application of ice; sometimes immediately and sometimes it is sometimes it can take hours, days, even weeks before any changes are manifested. There can even be cases where damage is not known until much later when it is too late to stop or reverse the effects. The rule of thumb is don't use ice unless you have to, and if you have to use it as little as possible.
We at American RSDHope are not Medical Professionals. Be sure to discuss with your Doctor any new information before stopping or starting any form of therapy and/or treatment.