What is CRPS? 
What are the symptoms? 
How do I get help? 
Special Guest Nurse Beth
Posted on February 22, 2019
*This is a transcript of the video interview from above

 Kristi: Hello everyone, my name is Kristi Oen. I’m a CRPS Conqueror and the founder of PAIN Help which stands for Pay Attention I Need Help, which is a mantra that vibrates in your inner being when you have CRPS.

A lot of people don’t actually know that they have CRPS, that was true for me for decades. My CRPS started when I was 10 years old but instead of being diagnosed with CRPS, I was told that it was just in my head, that there was nothing wrong with me and I went through life not really understanding and not having any support or doctors who understood what was happening to me.
Today we are joined by Nurse Beth Seickel who is going to be helping us understand more about CRPS. She is a wealth of knowledge. Just recently I was talking to Nurse Beth and she was telling me that if I had known, if I had been diagnosed with CRPS ahead of time, before my c-section we could have done something to stop my CRPS from going whole body. That was the start of what felt like the end of my life, the CRPS went into my organs and everywhere.

 
So it is really important to get early diagnosis and early help with CRPS.


Nurse Beth thank you for joining us, please tell us a little about your story.

Beth: Hi, I’m Nurse Beth. I was an ER trauma nurse for a long time and I had never heard of CRPS or AKA RSD until I was diagnosed 12 years ago after a fall in the hospital that tore my ACL. Ok I thought, a little surgery, a little PT, a little inconvenience but no big deal. Until I started having all this really odd neuropathic sensations going up and down my leg, which I knew where not post op. Where wind would blow on it and it would be like a machete slicing into me. I know I’m a little nutty but I thought that’s just not possible. Where I would take a shower and the unaffected side would feel normal but the affected side would feel like shards of glass were cutting into me. I would be in the shower saying what is going on here, this is really strange. It still took me 6 months to get diagnosed. I think because I was able to articulate the medical terms of what I was experiencing that helped expedite the diagnosis.

Kristi: Awesome, so what would you say in general is CRPS? Let’s go ahead and let you take the floor and talk about what it is and what happens with it and how you might know if you have it.

Beth: Well the first thing I did actually was reach out to RSDSA, a non-profit organization and talked to Jim Broatch, the director. He was so supportive. He spent a long time with me on the phone so now it is really my privilege to give back a little.

CRPS stands for Complex Regional Pain Syndrome that’s the current term as of 1993, people still refer to it as RSD, reflex sympathetic dystrophy. It is the same thing and unfortunately over the years the name has changed probably 25 times. Some people call it amplified pain syndrome, hand and foot syndrome, there are a lot of different names but it is all CRPS.

Kristi: That’s really important because I know that I have been diagnosed with a lot of things throughout time as well. I remember being diagnosed with myofascial pain but they didn’t quite understand the extreme of what we are experiencing like you are talking about the shards of glass pain, the burning sensation, the wind blowing – that’s the craziest thing – people don’t get it - being outside and the wind blowing and you feel like you are dying. Before we started recording you mentioned you weren’t sure how long you could stay in the light, wearing sunglasses being in a dark place, all of that is really part of what we are dealing with.

Beth: It’s about learning about your triggers. For me I really had to understand what was physiologically happening because it’s a neuroinflamatory condition and something happens to disrupt the healing process and causes your nervous and immune system to malfunction. I like the analogy of a fuse box. If you blew all the fuses, in order to reset it you need to reprogram all those fuses but it’s really hard to do when you have certain triggers that set you off. And everybody with any neuroinflamatory condition have triggers. Learn what your triggers are but the triggers do change over time. If you are fortunate that you are diagnosed promptly and you get treatment promptly and it stays in one little area and if you put it in remission, that’s the ultimate goal. Most of us don’t follow that path. And it does spread into your other limbs and organs. It is not just a condition of limbs, which is a common misconception.

Kristi: Exactly, I’m glad you brought up that it is trauma induced. So why don’t you explain a little bit about how you label CRPS, what are the qualifiers to say you have CRPS?

Beth: Number one there is no one diagnostic test to prove that you have it and that’s the hardest thing. I admit as a health professional myself it much easier if you say you think you have this then we just order this scan and boom there you are. Of course it’s easier. So it becomes a diagnosis of exclusion. Ruling other things out, this is just as important. There are two different types and they both have similar and different symptoms. Ask me the question again; my brain fog is kicking in.

Kristi: So there is complex regional pain syndrome 1 and then there is a 2. I was saying for both of them you have to have a trauma that induced the CRPS, it’s not a genetic thing, and then there are other qualifiers.

Beth: Right and trauma doesn’t have to be a major trauma, it could be a minor trauma, like a sprained ankle or a blood draw or an immunization, not that you shouldn’t get them. But I’m just saying that sometimes it is a minor little thing. A major trauma could be surgery like it was for me. I’ve met people who have gotten it after a heart attack or a stroke; because it happens when there is a disruption in the healing process. If you have a sprained ankle you still need a healing process to fix that sprain. If you have a blood draw, there is still a little bit of the healing process to regroup from having a blood draw. The important thing to remember is that CPRS comes from a disruption in the healing process. And unfortunately sometimes even with a great recorded medical history (because that is really how to diagnosis this is, is with great history and ruling out other things that it could be that we have diagnostic indicators for) it becomes idiopathic meaning we don’t really have any idea of why it develops.

Kristi: Thank you, I want to say at this point because we didn’t say it earlier, we are not giving medical advice right now, we are educating and giving our experiences and obviously you (Nurse Beth) have a medical background so we are doing a little bit of education so you can talk to your doctor and be better prepared. We are going to share some information later about how you can help your doctor understand CRPS a little bit late. Right now I want to dive into some of the pictures that are behind you to help our audience know more about the possible symptoms of CRPS. These may be some of the things that you might be noticing, some of the sensations that you might be feeling and some of the visuals of what you might be experiencing.

Beth: Let me just say though at the beginning of this journey most of us including myself did not look like any of this. Most of it is symptomatic at the beginning so it is very difficult when you go into a practitioner and say I’m feeling all these electric currents going up and down my leg, I can’t tolerate a sheet on foot, I can’t wear shoes or socks, I can’t take a shower because it’s like shards of glass. And they look at you like, WHAT? Listen I’ve been on the other side too, so I can understand that if I didn’t have this, it would sound very bizarre so I admit that. So I don’t want anyone to think that oh my gosh this is what you look like at the beginning. That’s not true. Everybody’s a little different so just keep that in mind. Some of the pictures that you can see are me. At the beginning I used to just turn a little blue on my toenail until over the years I started turning like this I would turn scolding red hot, like burning hot with a blue totally dead foot and every time it would happen I would tell my family can you believe this? Scientifically it is very odd to me that your brain can do that. I mean I have skills but I don’t have that kind of skill. 

Some of the other symptoms you might see, you can get very shiny. Again it’s all part of the autonomic dysfunction that is causing my nervous and immune system to totally malfunction and get shiny. I remember meeting a parent who was looking at this board and started crying and I said I’m sorry what is upsetting you? She said my son looks like that, he gets wet and I thought he was just being a typical teenager and spritzing himself. I said no, but if you start learning about the autonomic nervous system it totally makes sense. Do I look like this all the time, no, it depends on the type of flair, it depends on the day. It just kind of depends.

Another possible symptom is called Livedo reticulari, which looks like a trellis and is a little more definitive.  I get that skin burning sensation and then I’ll get these markings all over my body. It is very common with this condition.

There is also sometimes when CRPS affects your nails and your hair. So the nails get either super hard or then they flip and get super soft and start splitting that’s all part of the trophic changes. 


Remember everyone’s CRPS is a little bit different and some might have more symptoms of one or of the other. 


Up here a change people can get too, dystonic movements, where your muscles are spasuming so much that they just almost lock in place. And with that you get a lot of atrophy, your skin gets kinda skinny. I didn’t get that particular symptom and maybe that’s because I was diagnosed fairly promptly. But those are some of the signs. The discoloration as much as I can laugh about it a little bit and say I have skills, it is easier for clinicians to see it and say what’s that? So in the beginning you might just get swelling or odd sweating. You may only sweat in one area and not sweat in another area these are some of the strange, weird symptoms that make clinicians go, ah I don’t know what that is.

Kristi: I’m glad you brought up the swelling and the other differences. I’ve never had super extreme color changes where it is that bad, I have some but it is not like your extreme changes. Never having some of the obvious classic symptoms it can make it is harder for somebody to recognize. If they were looking for that on me they aren’t going to find it. I did have the extreme swelling, the extreme pain other things I was experiencing. Not until recently when I was talking to you and talking to other people did the sweating thing come up for me. I never associated it with CRPS but it’s one side of my body and one armpit that are extremely sensitive and extremely sweaty.


When you are thinking about these things that are really bizarre that are happening to you, it’s time to start thinking that it could be CRPS. 


With that thought then comes talking to your doctor about it, that’s one of the major concerns I’ve had is finding a doctor that understands this. I think that you guys have worked really hard being a part of the RSDSA and coming up with things to help doctors because you guys actually came up with an accredited course where the doctors can get free CEU’s, they have to do them anyways, but they can get it free and they can learn and help you out as well. So let’s talk about that a little bit.

Beth: I’m not a practicing practitioner anymore, I did lose my career to CRPS, but to renew your license you have to have CEU’s. Therefore I created little cards with course information on it for walks and presentations that I do. The information is directly from the RSDSA website but I put them on cardstock so it makes them easier to do, so here are two types of free courses one is on comprehensive overview and the other is like a case study because medical people like that. (note: this first course isn’t currently available a revision is being made, check back again later). The other is pediatric because unfortunately children get this too, as you know Kristi. https://rsds.org/rsdsa-pediatric-crps-accredited-online-course/ Unfortunately it is hard enough for adults to be diagnosed so it is much harder for children to get diagnosed. Unfortunately many children get labeled with conversion disorder and different kinds of psychological conditions because there is not one diagnostic indicator to say this is what the problem is and let’s move forward. Or parents lose parental rights, which is totally heartbreaking. So whether you have CRPS or not you can start sharing this and start passing them around (note the cards were for the other course that isn’t available right now so I haven’t attached them), put them in libraries, put them in clinics and say to the doctor, you know even if you are a person watching this and you don’t have it, you might say to your doctor– you might not have this but I am sure you have a patient with it.

Kristi: I love that you said that, I got goose bumps. You might not have this, but I bet you have patient who does. Thanks for bringing up about pediatric CRPS, as you know I’ve had it since I was 10. And I’ve endured. A lot of times there were thoughts of committing suicide and checking out. There people that I meet and they say I know someone with CRPS and I say I need to talk to them, and they say oh sorry you can’t, they committed suicide. It is just one of those things where we really need to be hyper aware and vigilant about what people are telling us and catching and picking up on some of those signals so we can help them out. Because as a young child when I was told by doctors that the pain was in my head and basically they wanted to send me to psychiatrists, I just stopped talking about it, the pain was still there, my extreme things were going on, thoughts of suicide were going on in my head, but I couldn’t talk about it anymore because I felt like I was going to be put in the crazy category.

Beth: You needed to be validated

Kristi: Exactly.

Beth: And unfortunately it still happens. In our country, unfortunately with mental health issues and pain there are a lot of myths and stigmas about it. You know how you feel, if one practitioner can’t help you, you say thank you and you move along. I know it is really hard to do when you are at that level, this is not a pain like surgical pain or endometriosis – it is not like that at all – it is almost and I admit to you – if I didn’t have it I don’t think I could articulate exactly what it is - it is physical torture.


But there is great hope. There are lots of things that you can do. But empowering yourself is really critical.


Kristi: It is extremely critical, recognizing that you have it and getting your voice out there. I love what you are saying about you need to interview your doctors. You need to find good ones that are for you. I had a terrible experience with a pain specialist when I moved to Florida – I moved down here for my health. When I moved down here and tried to find new one, it really was about interviewing them. I went to a pain specialist I filled out that card and I’m red all over marked with high levels of pain - I forget what name of that pain scale is but CRPS is above child birth on the pain scale and that’s all day pain pretty much – going through flairs etc. I filled it out and it was all red and he said this is impossible. I always used to tell people don’t touch me without asking my permission first, even doctors, he went and touched me and I screamed and he says how is that possible? I said I told you I have CRPS, you saw my sheet and then in that moment I just knew he wasn’t the right person for me – it’s not going to work.

Beth: You have to find someone who is vested. The issue is looking at it from a different perspective. CRPS is listed as a chronic pain condition and that is true but more so it is a chronic medical condition just like sickle cell, MS, Lupus and I think right now it is listed as a rare condition. I don’t think personally it is as rare as we think it is because every time I talk to someone, people say wow I know someone who suffered in silence for a long time or I didn’t understand. Unfortunately, what we see in print and in the media is the negative part of it and as a nurse there are both sides, I get that, but…


...when you live with something that is really off the wall that doesn’t mean you are off the wall.


Even people with major psychological issues they still can have a medical condition. You can’t ignore someone’s medical condition because you can’t figure it out. It’s ok as a practitioner to say, I hear what you are saying but I have no idea – I respect that – and maybe they aren’t the right person for you. You have to be the CEO of you. If you were furnishing your home and you wanted to fix your living room up and get new furniture, you would certainly not go to the first one and say excellent. So I personally don’t understand why we don’t do that with our health. Even if you have a practitioner that you find and your team is a whole lot of people, it doesn’t just have to be one person with pain management – even if they aren’t totally knowledgeable about CRPS if they are willing to take the little class, if they are willing to go online to rsds.org where there is a lot of peer reviewed literature to become knowledgeable and they are willing to work with you, I’m good with that. Sometimes people who say they know it all worry’s me – nobody knows it all.

Kristi: My General Practitioner now is absolutely amazing and I love her and she didn’t necessarily know a lot about CRPS but she was constantly working with me and I was in control of what was happening to me. I like to keep everything very scientific like only change one thing at time, only try one thing at a time. You really have to go low and slow when dealing with CRPS and work with someone who really does care. She was willing to do research, willing to follow me, willing to listen to me – not just somebody’s who is telling you to take this pill, take this pill see you later – bye – whatever. You really need to be a part of what is happening with you and that’s why we are doing this call, for more education. I’m sure Nurse Beth said she can talk for hours and I know I could too so we are definitely going to have more conversations about more things later.

Beth: If you are watching this and have been diagnosed with CRPS, you might be thinking what do we do next? One of the things to do is go online to rsds.org and download things that I carry with me. And why do I do it, because sometimes I can’t articulate if I’m in the hospital and I’m in a pain crisis and I can’t speak. You can get a CRPS card and you can download it from rsds.org, https://rsds.org/wp-content/uploads/2014/12/I-Have-CRPS-Card-06-26-13-NEW.pdf you can also download the hospital guidelines https://rsds.org/wp-content/uploads/2018/12/RSDSA-Information-Package-01-01-19.pdf (p16 and ER are p 17 of this packet) one side is what you would do as a patient, things to empower yourself and then what the staff can do to help you. The other one is a dental guideline – most people don’t like going to the dentist but this the gateway to your health and ignoring this will make your CRPS worse. https://rsds.org/wp-content/uploads/2018/03/Dental-Guidelines-3-20-18.pdf And an ER guidelines – what you do and then the staff – I have found this to be very validating so it’s not just the patient saying I have this weird condition – don’t touch me – don’t put the sheet on me – You say here or my husband can give it to them. As a practitioner I had many patients with conditions I really didn’t understand I appreciated when they would come in with a little card and say this is what I have so we could pass it amongst each other at change of shift. It is empowering and validating for you as a patient.

Kristi: I love it. We just connected recently and I know we are going to be good friends going forward as I’m learning more. I just got this material so I haven’t had a chance to use it yet, but for example I went to my doctor that I love and adore but she had a different nurse who went to take my pulse oxygen with the thing that goes on the finger. She put it on and I said I can’t do it, it hurts- she said it doesn’t hurt put it on – I said no, I‘m not doing it. Then she asked what my pain level on the pain scale is and I said I don’t have to say that. In that situation if I had something like that card, I think it would help – it validates you – you aren’t just that crazy person who says it hurts when they put something on your finger. We need to help make them more aware.

Beth: Part of it is we have to understand that in North America all medical and nursing schools they have 5-7 mandatory hours of pain management education versus if you go to veterinarian school you get 75+ hours of mandatory pain management. Yet chronic pain conditions including sickle cell are the number one reason people go to the ER or the doctor. The disparity of our practitioners is training so therefore this is where the link is so organizations like RSDSA and what you are doing Kristi will help open the dialogue for it.


Myths and stigmas come from lack of education.


Kristi: Exactly. Thank you, Nurse Beth for all you do and for coming out today. Your unique perspective as a nurse and a CRPS patient helps to create that missing link that we need to help others. Thank you again
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