Occupational Therapy and CRPS: What Really Works?
Posted on March 29, 2019
Kristi: Hello everyone Kristi Oen here and I am a CRPS conqueror and the founder of PAIN help. Today we are talking with Justin Messier who is an occupational therapist. We are going to be talking about occupational therapy and CRPS. Justin why don't you tell everybody a little bit about yourself.
Justin: I'm also her husband that's kind of important too. A little about myself, born in Northern New York met Kristi about four years ago, as she was attempting to heal herself. I’ve been an occupational therapist almost twenty years.
Kristi: The story of how we met is my hip froze up on me.  I've come to realize it's probably not a CRPS issue but my hip was frozen. What I would do is take my fist and pound and hit on my hip, sometimes I would have other people hit it. Do you remember when I would have other people hit my hip? I would hit my hip to try to get it back in place so that I could move and walk again. Justin saw me attempting this and he said…do you remember what you said?
Justin: I don’t. I’m a guy. I don’t remember a lot of things.
Kristi: You said, what are you doing?
Justin: That’s probably not what was going through my head.
Kristi: You said, that’s not the best thing to do. So then he did a few acupressure points…
Justin: Trigger points
Kristi: ...to help so I could move and walk again. And that’s how we became friends and…
Justin: The rest is history.
Kristi: And the rest is history, that’s right. So Justin,
Justin: Yes
Kristi: You are a National Board Certified Occupational Therapist, right?
Justin: Correct.
Kristi: What did they teach you about CRPS and chronic pain in school?
Justin: From a school perspective those are two different beasts. CRPS – nothing. I don’t even think it was called CRPS when I was in school it was probably reflex sympathetic dystrophy and I really don't remember learning anything about that.  Maybe tangentially, chronic pain is an underlying factor pretty much in I would say at least 85% of people I work with. They have some sort of chronic pain and most people like Kristi put it on the back burner.  It effects their everyday life but they just pushed through and deal with it except when other things are exacerbated and then usually the chronic pain is tenfold worse than it should be.
Kristi: You were telling me that you actually had experience with somebody with RSD very early in your career.
Justin: Yes I did, probably within the first I would say six months of working. I was working with a gentleman who would had a stroke. A one sided hemiparesis, which was his dominant side and aphasic expressively and…
Kristi: (Laughing) No one knows what you are saying…
Justin: He wasn’t able to speak easily. His vocabulary consisted of the numbers 1 2 and 3 except when he got angry than he could swear. I was working with him and every so often and not really a true cycle, his arm would swell up and he would be extremely sensitive and in extreme pain.  I really had no clue what was going on so I did some research.
Kristi: And he wasn’t diagnosed.
Justin:  No, he wasn’t diagnosed at that point with RSD, reflex sympathetic dystrophy.  Even though he wasn't diagnosed with that condition when doing my research it really fit the mold.  At the facility I was at a doctor may show up once a month if we were lucky, so I took it on my own to look at the symptoms and treated accordingly. I started out really with some things that Kristi doesn't like. Like desensitization and contrast baths. Desensitization is using different textures to hopefully allow the nervous system to tolerate it.
Kristi: It's called torture. So basically you take different things… 
Justin: Sheep skin, linen, cotton balls…
Kristi: …rub on the problem area over and over again hoping the sensation will go down.
Justin: Yes, hopefully it’s not as painful or hypersensitive.
Kristi: Right. And that was something when we first got together - cuz he met me while I was in a really bad flare and really sick – he asked, have you ever tried that. And I said don’t ever talk to me about that again because I just think it's one of the meanest things and for me it made me feel much worse.  
One of the reasons were talking here is because you have to find what works for you for different people different things will work. So Justin's talking about some of the things that worked with his patients and I'll talk about things that work for me. 
Justin: Contrast baths you use a basin with moderately warm water and moderately cold water and you submerge the affected area if you can in the water to have the temperature contrast and again more to desensitize the person and hopefully to normalize the sensation so they can tolerate life again.
Kristi: For me, once again that’s too much. For me the cold really hurt me quite significantly.  Anything that was even semi-cold was really like driving huge knives, not just my CRPS burning pain, it was also like increase knives driving through me especially in my joints. So that was not something we were actually going to do but it is something that has worked for you and some of your patients in the past.
We didn’t do the desensitization or the contrast baths because they really bothered me so tried other things.  Justin always told me to keep moving even though it hurt a lot. It was a lot of pain for me to stand or do anything, it was about keeping moving. So we came up with going in the pool, we had to heat the pool to an extreme amount…
Justin: Not extreme
Kristi: It was like 90
Justin: 95
Kristi: Yes, that’s like a hot tub. Even then I would also wear a wet suit because my thyroid was messed up at the time and I was always cold. It was hard though to get the wetsuit on because it was painful to wear clothing, so there was this game we were playing to get things going. 

But once I was in the warm water of the pool and start doing something like Tai Chi or just floating with a little bit of movement or swimming, that really did help.
Other things we found to help was meditation and positive mindset. 

If Justin as my husband comes in and says calm down, relax – that doesn’t go over very well. But if he comes in and says let’s do a meditation together or do something that would help calm and relax both of us, I appreciated it and it helped us both.
For pretty much the first two years we were together, I was lying in bed you took care of me – pretty much completely; you helped me move, you pushed me in my wheelchair, brought me food, I ate, slept, did everything in bed, in the bedroom.
For us what turned everything around was…
Justin: Throughout all of these difficult times we are trying everything under the sun, and most people do. Whatever works, even 2% of positive gain is 2%. Supplements, hyperbaric oxygen, home intravenous that I learned how to do…
Kristi: Oh my God, we did IV’s at home with the glutathione – that was crazy.
Justin: Lots of different things, whatever possible, sometimes not easily within financial means but we made it work .
Kristi: Yes we were spending $25,000 a year out of pockets on medications/supplements, myofascial release, acupuncture, everything
Justin: So what turned it around…
Kristi: Yes, what turned it around?  The thing that really changed it around for us was getting the wellness device.  Increasing the blood flow, moving everything and getting the body the way that it was supposed to be. 

What is it like from your you side? They hear me speaking about my perspective all the time as I was getting better. Especially from a medical perspective, for two years I’ve been pretty much permanently disabled, in a wheelchair, lying in bed, you know what life was like – you signed up for that. 
Justin: Ya, on a personal standpoint when the medical device started helping her you know it's challenging because she's feeling better and by nature I'm a helpful person. Some people don't like to be helped because it's nice to be independent but it's just my nature no matter what and also in terms of consoling or affection to touch and touching somebody with CRPS is tough. As she is getting better I know I can probably touch her more but there is still that fear that I am going to hurt her. 
On the medical side of it it's pretty miraculous really to think of something so simple that this device does how it truly helped correct what her body has been challenged with for 30 years.
Kristi: Yes
Justin: Yes, it’s pretty powerful. It even works for me. It helps my issues which are comparatively speaking exceptionally minor but you know it's given us a life. More vacation time, more fun together, more affection. 
Kristi: It’s all true and that’s the big game changer for us. 
Justin: And it saved us a lot of money.
Kristi: It saves us tons of money, oh my God, so much money. 

So what kind of recommendations would you have for people that have CRPS and are thinking about doing occupational therapy?
Justin: In terms of therapy, really whatever…
Kristi: Also, not really giving medical advice, this is for educational purposes only.
Justin: I’m not really at all, I’m not giving medical advice. It is more of an empathy, being aware, educating each other.  

Tell them: here’s how I feel, here’s what happened to me in the past, how I’ve been treated, what the effects were.
Ask what possible could you offer me as a therapist or as a health coach or a mediation person or as an acupuncturist? What could you possibly do to help me?
To communicate is really important.  Having a rapport is really important to any therapeutic relationship, be it with a spouse or with a patient. 

If you don’t have a positive outlook and rapport together then you aren’t going to achieve anything.
Kristi: It’s a good idea to ask if they have ever worked with someone with CRPS before. I have heard so many nightmares and I have worked with so many practitioners where things haven’t gone well.  
I would suggest saying, please don’t touch me without asking my permission. And give them the card from RSDSA that says, I have CRPS this is what it is like so they have an idea of what it is before you go in. https://rsds.org/wp-content/uploads/2014/12/I-Have-CRPS-Card-06-26-13-NEW.pdf
There are so many times I went to a chiropractor or other practitioner and I got much worse because of the way that I react to things. Definitely ask if they have worked with people with CRPS before and make sure they are caring and sensitive and able to work with you. You aren’t just a cog in a machine, make sure you actually have some sort of voice and say in what’s happening to you.
Justin: Right, that’s the key, what’s happening. The practitioner or whomever they may be, they should explain to you step-by-step what they're going to do no matter what. 
Kristi: Yes, before they touch you.
Justin: When I work with people, I say here’s the plan, here’s what we are going to do. I'll tell it to them step by step.  Then as each step is coming up I'm going to repeat it just so they can be aware of what's going to happen and they can stop me at any time. 

They can tell me their fears or their anxieties because really fear and anxiety is a major issue.   Step by step instructions and the option to stop at any time that's really key. If you look at true quasi standard protocol for this it's you have to do this then this then this.  If you start doing one thing and it's so painful that the person is crying or can't handle it, it’s foolish. You're going to ruin your rapport with the person if you're forcing them to do something just best it is standard protocol with RSD or CRPS.  

In my personal opinion, there's no true standard. You can try lots of similar things but just like anything every person is totally different.  

There's no magic pill, there's a combination, even with this device I can use a certain way and it's going to work for me.  Kristi can't use it the same way I do. It works under the same principle but we use it both a little bit differently.  
Kristi: And that’s why it’s so important to have somebody who knows what they are doing with that device to help you through because it is absolutely amazing and life changing and look he can touch me. Do it…(Justin touches Kristi’s arm and she laughs). And I’m not killing him.
Justin: Not yet…
Kristi: Do you remember?  You would never have been able to brush this close to me or do anything.  
Justin: I always worry when she brushes up against me.
Kristi: Yes, you kind of stiffen up, because you don’t want to get yelled at
Justin: No matter what it’s always my fault. You guys always remember that, it’s always your fault. 
Kristi: All right, cool. That’s a good note to end on I think. I’ll remember that. Anything else you want to through in there. 

Absolutely take care of yourself, pay attention to your own body, if you are ready to make some big changes and you want learn more about the wellness device and the things that we did that helped, make sure you get in touch with us.  
Justin: Actually I do. A lot of people are hung up on lots of things.  When I first met Kristi, she had to wear certain textures for comfort, because it made life tolerable. 

The key is to be comfortable with yourself no matter what you have to wear, how you have to be. 

Obviously you don't want to run around naked out in public...you might want to because it’s more comfortable but then the breeze might hurt you. On different days Kristi would wear a heavy parka and sunglasses just to protect herself. When she was in the house she always wore the same comfortable clothes. If you have to do that, do it. 

Take care of yourself don't worry about what other people think or say.  I truly think society is getting a little bit better at accepting others.  Be comfortable in your own skin. It's hard for me just the way I grew up, it's very hard for me to be comfortable in my own skin and accept who I am and how I am. Kristi is a great example of accepting the challenges she has and just going with it.  
Kristi: Often Justin would get more upset when people would make comments or say things about me.  When I would be in my winter coat in Florida and it's 80° and all bundled up, somebody would make a comment and you would get upset. 
You have to own you and it is tough sometimes but you've got to be you and you have to take care of yourself. CRPS is not something you can mess around with.  Now I don't have to worry so much but you have to do things for you. Don't be embarrassed about that.
Justin: I’ll stand up for anybody for education's sake.  I did get annoyed significantly, that's a gentle way of putting it.  

But it's more about educating society and having people understand that outwardly you may look okay and look like you're feeling good but it's hurting. 

So just be aware.
Kristi: Awesome, thank you Justin for joining us as an occupational therapist today.
Justin: I joined you as your husband.
Kristi: (laughing) who knows a little bit.
Justin: Thank you guys so much and we hope to talk to you soon. Bye 


PAIN is a four letter word but so is HOPE.

Kristi Oen
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