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.
- What works for me in therapy may not work for you
- 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.
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.
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.
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.
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!
9 thoughts on “Physical Therapy & Complex Regional Pain Syndrome (CRPS): a guide for success”
Thanks for an inspiring post. PT is challenging, but it is one area where we can have an impact on our own well being. I think your insights and advice are spot on.
For the first 2 years of living with CRPS, my pain levels were overwhelming. My symptoms spread and I developed deep icy bone pain. It took almost 2 years of ketamine infusion therapy, and working with a really good pain management psychologist, before I was ready to re-inhabit my body. Since then, I have made slow progress by committing to walking my dog every day, and swimming a few times a week.
When I started swimming, I couldn’t kick with that foot, or touch the wall to push off. Very slowly, I have been able to desensitize my foot and can now swim for 45 minutes and push off the wall. During this process, there have been subtle changes in how my foot feels to my brain. In a way I am more “alive” in my foot, after so many years of turning away from it and trying not to feel it ~ trying to get away from the pain ~ swimming has helped me to reintegrate my foot as a part of my body that it’s safe to experience.
With my walking, progress has been extremely slow. I went from being able to sit in a chair in the yard and throw the ball for my dog to being able to stand and throw the ball. About a year ago, I was ready to commit to walking with him again. We started out going about a block. I went whether I was in pain and limping or not. At first, every single step was a major effort, my attention focused internally. Now I enjoy our walks, and can even forget about my foot for short periods of time. Very slowly I have been able to build up to walking a mile. I still limp back to the house, and some days I can’t do it at all, but I have surprised myself with the progress I’ve been able to make. My gait has improved and I feel less disabled.
Thanks for sharing your story, and encouraging us with your success.
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Thanks G! resource it away! 🙂
Unfortunately, it seems like the Ketamine therapy is what helps to make PT a reasonable choice. Getting insurance coverage for that is an ongoing problem.
I have been dealing with crps for 20+ years. I now live in a small town and healthcare coverage is minimal. I had been treated with methadone for pain but unbeknownst to me methadone builds up 8n the body and I suffered an overdose that almost killed me. (I had been taking only the prescribed amount.) I was in the ICU five days and then after several kore days.moved to rehab. (I suffered a fractured tibia when I fell asa a result of the overdose. The very evening I came home from rehab i collapsed again. I am no longer allowed an opiod for pain management. This is now an unforgiving roller coaster of pain and twice monthly lidocaine injections. I am frustrated and angry. Most days I can’t move more than enough to let my dog out. I need help, but my ssi covers very little. Help!
I am so sorry to hear about your situation and can only imagine the frustration and fear you must feel having to adjust to this situation. I hope that your pain management doctor will offer other approaches and might reconsider your situation. Access to opioids has become a very hot topic since the CDC guidelines changed and doctors have become much more cautious about prescribing them. It sounds like you could use both pain management and emotional support. I wish I could offer help.
Meanwhile we are under this COVID-19 situation which increases our stress and anxiety. Have you tried contacting RSDSA for advice or looking to see if there is a support group in your area that might be meeting virtually? My group is meeting on Zoom. Though it doesn’t help to change the situation, having people who understand can help us cope.
Sending gentle hugs and encouragement during this really challenging time,
Hi! My name is Rose. I have has CRPS for 6 years. I have had the worst month of my life this past August. My pain was soo bad I actually asked God to take my life.( I am way too chicken to take my own) I finally saw my
Pain Management Doc and he ordered percocet. I don’t normally take such heavy drugs, but it finally made my pain manageable.
I am wondering about the Zoom group meetings you mentioned. How do I get to join those?
Rose, I wrote a reply, but My comment is being moderated, but the follow up comment went up before the longer response. Thank you for sharing your update. I am so happy to hear you have had some relief live. Meanwhile, you can reach me through the support group website email@example.com.
Sorry, here is the Facebook live video with Dr. Getson
Great blog I enjoyed readingg