Exercise With CRPS with Jessica Rossman, DPT - RSDSA

Jessica Rossman, DPT presented at RSDSA's conference in Texas about the importance of exercise despite having CRPS. Dr. Rossman also discusses physical therapy for people with CRPS.
To learn more about complex regional pain syndrome (CRPS) and reflex sympathetic dystrophy (RSD), visit Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)’s website at rsds.org. #RSDSA #CRPS #RSD

[@julieahrnes8778]

I am a physical therapist assistant, CSCS with complex regional pain syndrome for almost 4 years. I owned a gym. I watched this video and I have many thoughts. The first thought is that when I go back to work in a clinic, I will let the therapists practice on me before patients. I loved the modified pain charts in this presentation. Those are so correct. The main thing to remember is that most of us can't stand to be touched due to allodynia. So modalities and hands on approaches will only cause us more pain. Also, at least for myself, if you are causing me pain that pain will only make me worse. Once a flare begins, it is not going to end by the end of our session. It will probably make me flare for days and cause great fatigue. We are a difficult group for PT. It's great that you want to try however. The most important thing with us is to get us moving and using our painful limbs, but on our own terms. Explain that exercise might make us worse, but we will get better. I really would avoid all needles with a CRPS patient. The thought of electrical stimulation or ultra sound is mostly unthinkable. Maybe a cold laser simply because it just sits there and doesn't move. Desensitization only causes more pain. I can barely stand to wear my socks and shoes. Doing it more doesn't make it any easier, it only aggravates. If the CRPS is peripheral, then really focus on core, posture and breathing interventions. The last doctor that I let examine my foot caused a 4 week long flare. Sorry, but that's the way that it is for us. Most medical professionals don't want to work with us because we don't improve. We need empathy and encouragement. I exercise everyday, but I owned a gym before. Most of us didn't exercise before CRPS, so it's going to be a tall order to get us to exercise with pain. Normal people can't understand us. We are unique and very fragile. I run 4 miles per day, but I started with only being able to walk from my car to the track for months. Our progression is very slow. You will not see us improve in 4-6 weeks and if you do then we are lying to you to make you feel better. In 4-6 weeks in a patient with CRPS the most that you can hope for is to inspire us to start trying to move. Focusing on the core or the body parts without CRPS will help us to feel like we're accomplishing something. This isn't adhesive capsulitis or a sore lower back. CRPS is inexplicable pain. Don't expect anything in improvement, but please try to stay positive for our sake. If you can get someone to agree to start swimming or walking or gentle strength training then you have succeeded.

[@jasonrichter497]

Same for me.

[@girlwhosbeenthroughalot4997]

Love what u have to say. You are correct

[@BWhite-tb7ir]

Julie, Thank you!!! I went undiagnosed with crps for 16 in my back and pelvis. I didn't understand that the pain I had wasn't normal for someone with the amount of fractures to vertebrae and pelvis that I experienced. With all of this I was a professional equestrian for most of those years in extreme pain. Finally after a lisfrac fracture dislocation I was diagnosed. After this the crps has spread throughout my entire body and viscerally. Any traditional physical therapy I have had has made me drastically worse. They all knew I had crps. I had to determine on my own what I could do and how much. I've been able to get back on a horse, at a walk only. I recently started aquatic therapy in a 90° pool which has been very helpful. It's the first PT that hasn't been harmful. This video was alarming in ways as it Really didn't seem like they Really understand crps. I know we need to keep me, I think that is huge, but this video showed a compmele lack of understand thing level of pain, tremors, and lesions that we can suffer from doing too much. a crps pain scale does Not end at a 10....it goes Much higher. Dr. Aradillas in Philly drew the 'crps pain scale,' which was not addressed in the video...it really did not show that they understand how harmful pt can be. And how painful.

[@michellehirsch-davis3968]

I resonate with 90% of what you are saying.

[@oliviaortiz5989]

Total agree with the explanation😓 well put TY🙂 hope your feeling better!! I am just starting my journey going on 3 months and have many questions not answered yet! I am reading about so many variations this DECEASE can take quite scary not knowing how my case will follow☹️🤒🤕🤧 all I can think of is how much I miss my HEALTH😥😥😥😥 ALWAYS BEEN VERY ACTIVE, the gym was my hobby now all I can do is walk.

[@drawntofashionillustration9596]

Swimming early on was ok, then temperature fluctuations in the pool sent me to bed for a whole day. So I found a physio who understands CRPS and I do 5 simple exercises everyday, log them on the app and slowly, slowly my days of 7/10 pain have reduced by 50%. I still have pain, and I feel my foot every second of every day, but now the pain is 2/10 and I have learned to stop focusing on my foot, do some art, meditate and turn down the heat in my nervous system. I also acknowledged I have PTSD after my fall down a slippery set of stairs, and can speak to someone qualified about my fears of stairs, not trusting my foot and how to navigate an uncertain environment full of dangerous steps, high curbs, sidewalks that are damaged and uneven, the list goes on. I grieve for missing out on 6 months of life, I grieve for my poor foot too, but I now have a new life full of knowledge of this disease and can help others. I have started using my good foot to talk to my hurt foot, kind of like puppets. The good foot encourages hurt foot, says things like, “I am sorry you have been out of action mate! Keep doing your exercises, we have lots of walks to go on and we have always been a great team. Can’t wait to get swimming again and going to the beach. I am here for you every step of the way.” My physio thinks I am kookie but I love my puppet show.

[@drawntofashionillustration9596]

Update: it’s been six months since broken metatarsal and cuboid microfractures. I have moved out of chronic into intermittent pain, but that was only during the last month. I still limp. I can’t stand to wear shoes for long periods, but I am up to 3000 steps a day. I have a zoom-Telehealth with a fantastic physio who specialises in recovering from limping, a symptom of ‘body memory’ from wearing the boot. My hips ache a lot due to lack of strength and my poor gait. The brain memorises good AND bad patterns, so unlearning the limp is a long process. But doing calf stretches/bike/rowing/weighted squats gives me immense relief. Slow-go is the mantra. Build up the strength in the knee and hips and the pressure on the foot is reduced.

[@gregbisesi9966]

It’s so important to keep the affected body part moving as much as possible. Once bone loss starts happening from immobility it’s pretty much downhill from there. You need to find the fine line of pushing the limb through the pain by moving or exercising it, but know when to stop, because overdoing it can have negative consequences with either a flare or more pain and swelling. My wife was very good at pushing her foot to a limit. after overdoing it a few times and putting herself into a flare for several days, learned how much she could push before pulling back the reins. Wendy’s physicians said that her ability to move and walk on the foot even though it was incredibly painful was one vital component in her recovery from CRPS.

[@RSDSA]

Thanks for sharing this information, Greg. How is Wendy doing these days?

[@gregbisesi9966]

RSDSA thank you for asking. She’s doing great. We’re about 1 month out from her infusions and she’s about 90% symptom free. She started hyperbaric chamber therapy to see if it can open up more circulation in the foot. She says it appears to be helping. Her foot isn’t as cold. Otherwise being the athlete that she was before this disease, she’s recruited 2 of her friends to fast walk a half marathon in April. She’s been walking 6-8 miles twice a week. The foot aches (it still has 2 plates in it from the injury) but it no longer throws her into a two week long flare of pain and burning up to her neck. Like I stated, keeping that body moving is so critical to a recovery and stopping bone loss. Thank you again for asking about her recovery. Anything we can do to help others with this awful disease is always our goal. 😃

[@RSDSA]

that's great news. Have you ever considered organizing an awareness/fundraising walk/run for RSDSA? We can help. Where do you live?

[@gregbisesi9966]

RSDSA Have not really thought about it but would be open to exploring the possibility. So yes we would be open to information to do a CRPS awareness run/walk. We live in northern Utah. Race season here is over for the winter but will ramp up in the spring. Wendy volunteers with the non profit Goal Foundation of Utah. They sponsor the Ogden Marathon, Tour of Utah bike race, Exterra and many other athletic events. We may be able to take your suggestions and team up with one of the larger Goal Foundation races to maybe add a 3K or 5k to Run and or walk. Or keep it to smaller venue back in here in beautiful Ogden valley, but still attract a large amount of running and walking enthusiasts. Wendy is also assisting the physical therapist at the only pain clinic north of Salt Lake City to get their CRPS support group going again so we could even get the clinic involved. Lots of good possibilities. Feel free to contact me anytime.

[@RSDSA]

Greg, please supply me with an email and I'll connect you with Jeri Krassner, our special events coordinator

[@bbeerrnnii1]

Do you have the prestentation available? I'm interested in the pain scales

[@terrysteward6765]

Does anyone know of any studies done on hydrotherapy for CRPS-2?

[@michellehirsch-davis3968]

I'm curious as well 🤔

[@foreverkenzie2397]

tips for increasing toe movement?

[@MargaretBoyd-go1lq]

As a suffer of CRPS I found most of this video alarming 😮😢

[@fleurde-lys1730]

What if you have both arms hand shoulders your crps is bilateral how do you work with that in regards to when you said you strap your good arm so you use your bad one ?

[@BurtBowers]

Have used different therapists, the first 2 therapy places was too aggressive with me & didn't even have a clue what CRPS was?.. the one I use now they do massage hard into my quads which it is the knee one of the main issues of having CRPS. it isn't easy though I am thinking how much of the hard massaging they do is doing more good than harm? I have it hard walking on my left side been using walker always can't be without it. anyone with any input on this issue any info would be appreciated...

[@lurlinehalliman9764]

I've been told NEVER to use ice with CRPS. You may want to research that.

[@jesswhycamarz]

bad pain is living with crps, at any level. A level 7 pain means your day is basically set that you’ll be suffering all day or worse. My level 7 pain keeps me up all night in tears, and that’s not even as bad as it can get. I really wish ppl without chronic pain, especially with crps would never speak at about it. Honestly

[@dorenehendricks6627]

I have MUSCLE WASTING AND this is one thing besides lifting I can not do makes mine worse and spread I WISH

[@michellehirsch-davis3968]

You mentioned the slides would be available. Is there a link?

[@RSDSA]

we do not have her slides, sorry

[@michellehirsch-davis3968]

@@RSDSA do you have a way to get in touch with her?

[@RSDSA]

what is your email and I'll forward the request to her?

[@michellehirsch-davis3968]

@@RSDSA [e-mail]

[@RSDSA]

I reached out to Jessica on your behalf and gave your email

[@luke144]

I've had to redefine my level 10 so many times!

[@michelelena1816]

Tired of endless PT and getting worse! Total BS video. Unless you have CRPS you have no idea what you are talking about.

[@RSDSA]

sorry that was your experience. Was the PT familiar with helping to restore function in people with CRPS?

[@michelelena1816]

@@RSDSA Allegedly, they treat CRPS. I am going to stop PT it is a waste of my time and money. Zero improvement and worse by the day.

[@jrayne6360]

Same for me. I have It In my left leg due to a horse kick 3 years ago and the hospitals where I live never heard of CRPS and at first tried to tell me It was all In my head and my brain was making me feel pain that wasn't really there. Then my PT Ignored what I said about being hard / aggressive since Its very sensitive and ever since Its hurt way more and hasn't gotten better. I can't walk on my own without a crutch and I just turned 20 years old and It feels like this will be the rest of my life and I want to kil my self constantly because of the pain. (I have other mental reasons too) but living In agony 24/7 Is hell.

[@teneishabrown7875]

@@jrayne6360 keep fighting don't give up I know it's hard God only knows but I'm right there too it's easy to give up but keep pushing

[@MrMatheusfroes]

@@jrayne6360 did you get better?