I was diagnosed with RSD 2 months ago after a 5 level Lumbar Laminectomy for Spinal Stenosis. My surgeon dismissed me saying his surgery was successful. A Neurologist, who diagnosed me, and a Neurosurgeon, who told me I have Chronic Pain, also dismissed me, sending me to Pain management and PT.

I'm on Lyrica, Kadian and Percocet. Tried PT. They did desensitizing work on my thigh, some TENS, muscle massaging, and stretching for my quads and hamstrings. None of this worked. I couldnt even walk out of the office. I was in more pain and had problems walking after each session.

All I hear on this forum is PT - what works? Do you go to therapists who are specialiasts? I am at a lost. I have been out of work for 3 months since my surgery, and can only work from home. I NEED TO GET ON WITH MY LIFE.

Here is an article:
"Do physical therapy and occupational therapy reduce the impairment percentage in reflex sympathetic dystrophy?", Oerlemans H.M., Goris J.A., de Boo T., Oostendorp R.A., Allied Health Services - University Hospital Nijmegen - The Netherlands, Am. J. Phys. Med. Rehabil. [78(6):533-9], November - December 1999

Although several sources tend to disagree on the importance of physical therapy in RSD patients, many do agree on the necessity of movement and of this movement not being aggressive.

In November - December of 1999, a study was performed on 135 RSD patients with RSD present less than a year. The importance of physical therapy for these RSD patients, under these circumstances (RSD < 1 year) was investigated. The study revealed that physical therapy could not significantly reduce a patient's impairment level.

When PT does next to nothing in improving a patient's condition, it might even make things worse if not done properly, if the patient's condition is not understood or taken into account.

The general rule is, no aggressive therapy (because of possible flare ups) and movement within the pain limit. RSD patients can not be pushed beyond the limit, this will often make things worse. However, they do have to exercise. Keeping active is important. A convenient way needs to be found for them to move with the least possible harmful consequences.

Establish what they can still do, find out how long they can make good use of the arm or leg and start from there. Don't try to work with them once a day for half an hour to get the maximum out of your session. This can have a bad effect.

Recently, it's been proven that there is a lack of oxygen in the tissue of the RSD affected limb (Dr. Goris-The Netherlands), which explains why too much physical therapy all at once is pernicious to the patient and will worsen the condition.

Too little movement may also worsen the condition. Patients need to move lots, but in bits. The whole day is their training schedule and exercising frequently during the day is good, in amounts they can handle. Work with them and give them a training schedule they can do throughout the entire day.

When establishing such a schedule, try to keep a good balance between enough rest and counterwaying movement. Small and frequent bits of activity broken by rest are preferred. Movement each hour, each half hour.

Late stage RSD patients have osteoporosis and in no small way. Even RSD patients in early stages may have weak limbs. RSD patients with atrophied limbs barely have muscle strength. Take these things into account when working with them. Exercises in water (body temperature) might be most beneficial and will eliminate a great deal of pain while moving.

The therapist must be on the lookout for recurring signs of inflammation with the patient. These are looked upon as a good and
correct indicator of "too much".

I was wanting to answer someone elses' post on this topic (Jasmine's), so I will do so here, as I answer your question.

You were diagnosed 2 months ago. How long did you go to PT? Couldn't have been long, right?

I have been going to Physical Therapy for 4 months. I was dx with RSD after I had started PT.
So, I've been going to PT specifically for my RSD for 11 weeks, and I have gone 5 days a week (3 hour sessions at this point). My pain got WORSE at the beginning and still does get worse right after/ during my PT sessions. A few hours after the sessions I wouldn't say my pain is worse. Overall PT has helped me. (I know everyone is different, and the same treatments might not work for you, so I am just telling you my experience ). I have been able to move more normally, pain has improved overall, and I can tolerate more.

After my physical therapists has rubbed velcro () on my arms, I am able to tolerate gentle touches a LOT easier! That velcro is sure nasty, and it was AWFUL to feel it, but now, you know what? I can tolerate my physical therapist putting the eletric stim pads on my arms without screaming in pain. So, I HAVE seen benefit from physical therapy. Desensitization is a must! You have to learn to wear clothing, or keep wearing clothing! Some days I feel like I cannot possibly feel my shirt on my shoulders/ arms anymore... but what choice do I have?? I have to wear it (), and I have to have desensitization to those areas!

At PT my therapist works on: strengthening my affected areas, desensitizing, stretching, contrast type things (cold whirlpool, hot packs, etc), and movement movement movement! Easy? No. But I have the hope that it will help me. I cry, and have screamed at times from the pain. The therapists are sympathetic, but they know it's got to be done. It's for my own good. They are super!

As far as finding a PT place that knows what they are doing, try this:
*ask your Dr. to call your therapist with the detailed instructions of what treatment you need. My PM Dr. did this, and it really helped my physical therapist.
*Print out papers on RSD so that your physical therapist knows more about your condition, and they can help you better, after getting more of an understanding of what RSD is.
*Lastly, if you know what needs to be done, speak!! Sometimes if you know the treatment you need, then just tell your therapist, and ask him if he can do those specific things. Whether that be movement excercizes or desensitization.
REMEMBER, you are responsible for YOUR HEALTH. You care about it more than anyone else does, and you've got to be sure that you are listened to, and you get the treatment needed. You cannot EVER assume that people (Drs., physical therapists or anyone else) *know* what they are doing in regards to your health. You have to take responsibility, educate yourself, research and do everything you can. Find out as much as you can. KNOWLEDGE IS POWER!! ASK QUESTIONS!

I do not go to a PT place that specializes in RSD treatment. They are a local PT place. My physical therapist who I regularly work with has seen about 8 other patients with RSD. He has a basic understanding, he took an interest in my case, he has talked with my Dr. about my treatment, he has listened to me/ my suggestions/ my ideas, and he knows more about nerves than the other physical therapists. Yes, it is best if you find someone who is experienced with RSD, but that is really hard to find. I would say second best is find someone who is willing to learn. My physical therapist didn't know much, but he was willing to learn.


Don't let anyone baby you- that is the worst thing. You cannot baby yourself either. That is so easy to do, but that is really bad for you. You have to learn to move and do things "normally", if at all possible.


I wouldn't completely rule out PT for yourself. PT teaches your limbs how to move correctly. You have to gain normal function, you have to learn to use the affected limb. Don't give up! It is so hard. I know it is. I'm going through this too. I have RSD in both of my feet/legs and both of my arms/ shoulders. It is hard, and it stinks to go through this. Some days I feel like giving up, but I am determined to get through this. I want to try everything I can. Right now it's medications and physical therapy for me. It has worked for others, and I hope it'll do the same for me.

What can you do? You try everything possible. You stick to doing a treatment until you know it is unsuccessful. That is why I am saying not to rule out PT. I am assuming you didn't go for too long. You really can't rule out PT in 2, 5 or even 12 weeks, I think.

See the following websites:
http://www.rsdalert.co.uk/treatments/PT.htm
http://orthopaediccare.net/view/pati...erid=hnnvrsdta



I would suggest doing more research on physical therapy and RSD. Educate yourself and others.

For how long did you go to PT? How long were your PT sessions? And how often did you go?

BTW, have you tried taking pain meds. right before PT to help you get through it? That can really help- especially with the desensitization aspect.

I hope I have helped you in some way.

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.

I spent almost 4 years in PT 2 times a week. I started out for back problems, then went to TOS and then RSD and Fibro.

I had 3 PTers I loved and one I hated and one my vote is still out on. He got depressed taking care of me and I was told later his wife has MS and I reminded him to much of her. He was a perfectionist so he couldn't deal with the health issues.

I had a husband and wife team who had studied in Holland and they believed in massage therapy more then the strenious exercises. So I mostly got massages, stretching of the arms and fingers, myofasial releases, and heat.


I got worse at first but I kept going and the more I went the better I got so i don't think a person should give up on it. After they work on you it's going to make a person more sore for awhile because we are so tender all over.

The one PTer wanted me to lift weights, therabands and riding a bike and I couldn't do any of them. I quit going to him real quick.

If I had not stayed in therapy I would not be walking today and that was my goal to keep from ending up in a wheelchair.

Don't give up on it but make sure they know something about RSD. Some can't even tell you what it is. There are some PTers out there that actually know more then a Dr. does about RSD and other syndromes that we have.

I exercise here at home and try to walk in the summer months.

You are in the first stages of the RSD and dealing with it and I can sympathise with you because I know what your pain is like. Don't give up.

The reason most Drs. drop us is because they don't know how to deal with it even though they can diagnose it. Some Drs. won't even tell you you have it to keep from confronting it. Don't let that bother you. You need a good PM Dr. and also maybe find an Anesteologist that does blocks.

Ada

Hi
Don't know if you helped Laurie--"you sure helped me" I will be on phone
tomorrow till I find PT. for RSD I have got to do this very expensive my INS.
will pay something-just finding some one in GR. MI. area do you know of a
place?
TAKE CARE
SUSAN

I don't know of a place, since I live way out in the NorthEast! Sorry!

I am glad I was of help to someone. I have many thoughts on this issue, and maybe I can share more on this topic when I have more time later...


Best Wishes. Please keep me updated on how you are doing finding a physical therapist.

PT is NOT easy, but it is regarded as the "cornerstone to RSD treatment" and is mention in every RSD article I have read. Why? It is SO important to keep your affected extremity MOVING!

I would encourage you to do more reading on RSD/ PT if you can.

Here are some sites from the RSDSA, regarding PT/ RSD:
http://www.rsds.org/3/education/desensitization.htm
http://www.rsds.org/3/education/home_exercises.htm
http://www.rsds.org/3/education/footwear.htm
http://www.rsds.org/3/education/aquatic_therapy.htm

Love, IHH

bump





Susan, how are you doing? Any luck in finding a PT place?

Laurie, how are you?

Hi
Start my pt. Mon can hardly wait sure hope it helps It is so cold here really going to hurt getting out--had a MRI last night- what for? been doing a few stretcing ex.after stretcing my back when I release the stretch slightly burning in back--I don't know if any thing will ever give me some quality back. How are you?
SUSAN