Physical Therapy & Complex Regional Pain Syndrome (CRPS): a guide for success

I have wanted to write about this topic for a while.  This summer I found myself back in a wheelchair for the 2nd time in my life and this time, my CRPS flare had gotten so bad that I was out of work for over 3 months.  I wasn’t able to walk, drive or even sit up for long periods of time.  I couldn’t navigate the stairs in the house or take care of my dogs.  I felt completely helpless as I sat alone at home, feeling defeated.  It honestly pissed me off that CRPS had won.  I quickly fell into the darkest depression that I had ever experienced.

Looking back, that seems like a lifetime ago instead of just 10 months.  Today I am stronger. I am almost 20 lbs lighter and my range of motion has improved. I am walking an average of 6,000K steps . I am driving. I am working.  I got my life back.  Physical therapy didn’t act alone in this battle as it was paired with a 3 day ketamine infusion, a combo of medications and a damn good Licensed Counselor. But Physical therapy became a lifeline for me.  I looked forward to going every single day.  I liked socializing with my physical therapists, I LOVED seeing the progress as my muscles grew stronger and my brain improved the communication to move my body. Little by little, step by step, I was able to begin to rebuild my life.

Overview of Physical Therapy & CRPS

Physical therapy  (PT) can be a very sensitive topic with people who suffer with Complex Regional Pain Syndrome.  There are very strong opinions on the subject and they range from, don’t move the affected limb as that will cause a flare ——-> to ——> push through the pain.  There seems to be this school of thought that “No Pain No Gain” should be the motto behind PT for CRPS.  I had Therapists from the both ends of the spectrum and where I found my comfort was somewhere in the middle, leaning more towards pushing limits and boundaries but not to the point of constantly bringing a flare to the surface.

I also just want to acknowledge, as I do with every piece I write about CRPS, that everyone is DIFFERENT.  I have yet to meet 2 people who have the exact same CRPS.  That is one of the factors that makes it complex.  This is important to remember for several reasons.

1. What works for me in therapy may not work for you
2. You absolutely cannot compare your body and the progress that you are making to anyone else.

You may have to remind yourself of these 2 factors every day.  You may also want to let your Physical Therapist in on this.  Many PTs have never worked with CRPS so they are also researching and talking to colleagues about how to treat.  They may also not know that the limb will change colors.  (Think about it if you google CRPS, really dramatic pictures show up, not limbs that look normal and sometimes our CRPS limbs look normal).

Physical Therapy is one of the biggest challenges that individuals with CRPS will have throughout their lifetime.  

Physical therapy, if done correctly will help you gain more control over a body that is in chaos. 

Guidelines to making Strides in Physical Therapy with CRPS:

Referral: Ask your doctor for a referral to a physical therapy clinic.  Your doctor may know a therapist that they have referred other CRPS patients.  Do not be afraid to ask for what you need.  Remember providers work for you.

PT Initial Assessment:

Start where you are. Be honest with yourself.  Recognize that you may have lost quite a bit of function in a small amount of time.  A flare or a spread of the disease can happen quick and in your body’s attempt to protect the “injured” body part will want to immobilize, which can cause a backlash of your body function backsliding. Try your best but don’t fixate on not being able to do it perfectly.

For example, if you could walk in a normal gait across the room last month but unable to walk a few steps in a normal gait, that is okay.  You are being referred to PT for this reason. You have to give your body time to rehabilitate itself. You are healing not only the part of your body that has an injury but you are also breaking the neuro-connection of your nervous system over reacting. Resetting your body’s response and healing process will take time. And again, that is okay as well.

Realistic Goals:

Whenever I go to PT I come in with a small notebook and a pen with my own goals.  (I know, I’m a nerd!) I share these in my initial session because I want to be on the same page as my therapist.  My goals may have to be revised but it provides us a place to start. I have my PT clarify any language that I don’t understand. What does 30% increase in flexibility of lower extremity really mean? Does this mean I should be able to slide into a split in 6 weeks? Or does this mean I am working to curl my toes?

Again. This is okay to have smaller short term goals.

Do your Homework:

Just like in school, you have to do your homework.  If you don’t go home and practice you will not be able to reach your goals in a timely manner and your body will not be getting exactly what it needs.  Rome was not built in a day.  Your body is relearning almost everything again so be kind to yourself. Will it be hard and/or hurt when you go home and try these exercises on your own? Probably. Will that homework help you meet your goals? most definitely.

Never use the “it hurts” reason to not do a little movement or desensitization.  If CRPS warriors wait until we don’t hurt, we will be waiting forever… the time is now. It cannot be an excuse to slack on your strength exercises or desensitization.  (Again, its a weird balancing act)

Did I feel silly buying a 20 pound bag of rice and then later pouring it into a bucket and putting my bare, sensitive CRPS feet in that bucket? Absolutely. But that simple silly yet painful exercise helped me get to the point that I could put a sock and shoe on.

Know your limits. Only push a little past where you know the limit is.

Many people with CRPS have a baseline that changes everyday. My rule of thumb is 1 more rep than yesterday or if doing cardio like swimming, add small amounts of time such as 1 minute or 2 minutes. I started with sitting on the pool steps and gradually took baby steps (literally) to get to where I am now of weight lifting 3-4x a week and walking or using the spin bike for 30 minutes.

Sometimes it felt like I was going backwards but at least I was moving.

Document

Remember that nerdy journal I brought to my first appointment?  Well it actually comes everyday. I don’t write everything down because the PT is doing that but I summarize how I feel and rate my pain but try not to focus too much on a pain score.

This has helped TREMENDOUSLY as I have been fighting for ketamine treatments.  I have so many things documented that they can’t deny my progress. You won’t be able to deny your progress either.  You may need to read day 1 to get over a rough patch on day 35.

Ask Questions:

Never feel bad about asking questions.  That is why you are working with a professional. They may not realize that they are using language or jargon that is common in their field but to the average person makes no sense. They enjoy spending time and helping you understand how the small pieces will fit into the big picture.

Rest.

This is equally as important as moving.  Your body needs rest after working so hard. Especially a body that is dealing with the CRPS Maniac.  If I go to PT or the gym, I allow myself a chore free evening at home. (Motivation to get to there right?!)

If you are having a Flare it is important to rest but it also crucial to not stop moving for long periods of time.  During a flare I will still go to PT but I may float in the pool, do light stretches or try to tolerate massage (some CRPS people can tolerate massage, some cannot)

Be kind to yourself/Show Love

Don’t over do it.  Extreme exercise or overuse can cause a huge flare to your whole body.  Try to listen to your body.  Although part of PT is painful for PT it should not be causing an entire meltdown of your nervous system.

Your body is relearning almost everything again so be kind to yourself.

Your body has been through a lot lately so be kind and patient to yourself. Have realistic expectations. Yes you were a marathon runner last year but CRPS has changed a lot. (Dealing with the whole psychological aspect is a whole other post!) You may have lost your ability to walk evenly on both feet, treat those feet with kindness, Be understanding that they are getting the wrong message from your brain and nervous system. Don’t hate that body part. When you begin to hate the affected part of your body, you will create a divide. A wall between you and your feet.  There are many people that completely disassociate from their CRPS injury.  This makes sense. That injury has now changed many things about your life, changed your mobility and you may blame that body part. But being angry at your foot or your hand is not going to help. If you hate the way your foot looks, you aren’t allowing it to work as part of the system, you will be slower to make progress.  (One of the things that I do is pamper my feet. Which also works on desensitization. Putting on lotion, oil and painting my toenails.).

Again, this post is not intended as individual medical advice.  These are my own observations and opinions. ALWAYS consult a doctor before beginning a new routine. If you have a PT story that you would like to share feel free to comment in the notes!