Torofy Blog

Depression and Heart Disease

Chronic The Invisible Pain


Describe what pain is. What is pain? Describing pain is really hard. Oh my gosh. I mean I guess it depends on the person and what kind of pain you’re persevering through trying to. It can be described in lots of ways. What instigated the opioid crisis is that there was a crisis of pain. It make me feel sad and exhausted. There might be some mental anguish that comes with it. Back spasms to the point that I’m pretty much immobile. Oh yeah I’ve had three broken arms. and a Broken finger. Broken ribs. Yeah I have back pain and so i take cyclobenzaprine to help it. As Americans we want a pill that takes it away. By just bending down or getting out of the bed. It’s like worst, like the worst pain imaginable. It’s like somebody taking like an ice pick or something and just jabbing at your back. So some of the estimates are that there’s over 100 million Americans that suffer from chronic pain. That’s more people experiencing pain than cardiovascular issues, hypertension. And being able to see someone like my mom or a family member go through something painful like migraine, that’s when it started to actually hit home that it is a real thing. People take opioids on a regular basis become tolerant they need more over time. Oftentimes people will tell me they feel like that’s all that they think they are is their pain problem. They’ve lost contact with everything else. They’re just pain. We used to live in Sparks with not much of a yard and we wanted to be able to raise animals for our kids to have, both as pets and to raise for food. So we moved out to Yerington and bought a couple acres and we have a lot of animals that we raise. It’s a lot of work. We’ve lived here for six years. I was a teacher by trade. I taught for about seven years and then our three kids got diagnosed with some disorders that were progressive and we were told that they would just get worse. Their care required a lot of monitoring, a lot of attention. I had to end up staying home from teaching. I was an avid runner. I ran long distances, I did a marathon. Running was my stress outlet for taking care of chronically ill children and it was what I did for myself. It was my escape. I tore my hip labrum I had to have surgery to repair it and 10 days after surgery, my left foot turned purple. It felt like my toes were being cut off 24/7. My doctor sent me to the E.R.. They thought maybe I had a blood clot. And then when everything came back that I didn’t have blood clot, they then sent me to Sierra Neurosurgery and I saw Dr. Blake for the first time and he diagnosed me with complex regional pain syndrome. I was told that, you know it would be questionable whether I would walk again, whether I would run again, whether I would get back to any of my activities. And living on a small farm with a husband who is incredibly busy and not home a lot and taking care of three kids by myself was, pretty overwhelming. I could not put my foot down on the ground. If you put a cotton ball on my foot it felt like razor blades. It was constantly screaming in pain. With CRPS unfortunately there is not a cure. It is something that, people can go into remission. But it’s something that you kind of deal with forever, is what the research says. It is very much an invisible disease. People don’t see it. My foot will change colors but I have a sock or a shoe on. People don’t see what it looks like. They can’t tell what I feel like. And I constantly go back and forth in my head about Do they understand how bad I feel or should I say anything, should I not, should I just smile? Pain can be very invisible. I actually had a number of people one woman in particular said Mike, Dr. Lewandowski she said. She says “I wish my pain was like a cut on my sleeve right here and you could see the blood rushing down my arm.” She said “people would jump up to see how to help me and stop that because they could see it but my pain’s not that way.” And so nobody recognizes nobody appreciates what it is I’m going through.” There’s estimates that say 100 million people are walking around with pain. It’s the most common complaint that a patient goes to a doctor with. But pain can’t be seen. You know it’s an experience. It’s a body experience. And a mind experience. Every patient or every person experiences pain differently. The definition of pain is that it has a sensory and emotional component. And it’s the experiences of those two things, the emotional and the actual sensory information, that make up what we actually feel or understand and everyone experiences things differently just like we experience a sunset differently. That’s how pain feels. Pain is very different and very complicated in that way. Well let’s say that someone is walking on the sidewalk and they trip and fall, they break their leg. OK that’s acute pain. There’s tissue damage, it’s immediate, it’s severe. It stops the individual from moving. You go to the emergency room, they set the leg. They put on the cast and five months later, the pain continues. You may have now moved from an acute pain injury to chronic pain. And the treatment needs to change. Our passion is basically belonging to the Corvette club and we drive on different tours here their various different places every year. Belonging to the Corvette Club, we usually do one major drive in the year. Well driving from Bowling Green Kentucky back home here is about thirty two hundred miles. And you stop and think, I’m having a hard time sitting on a couch. What’s it gonna be like sitting on a car and getting shaken to bits you know? I deal with pain every day. I don’t have a day where I don’t have pain. It’s just the degree of pain that I have to deal with. We were having a birthday party for my son. So I went over to pick the cover off the couch and I was standing in front of the couch. But I had to reach up on to the top of the you know the couch I grab that blanket to pull. There was a sudden super pain in my lower back and I got up. And I couldn’t move. And then from then on that’s what started my back pain, just in most innocent thing like that. I got worse and worse and then that’s when I actually hurt my back moving the desk at work it’s like just a pull, and then there’s sharp pain. That’s when I had my first surgery. From that point on, I was on some type of pain medication. The benefits medication are to take away the pain. But even on some of the strongest doses it doesn’t take the pain away completely. For almost five years I was very immobile I mean I couldn’t do any housework. I could, you know, I could take care of myself and that was about it. I’d get up and I go “Well I guess I’ll just watch TV because I don’t feel like doing anything else because I’m in pain.” Opioid medications have a place and that place can be used in both acute and chronic pain. The problem is is that they are extremely powerful medications. In the acute situation that’s what you need. You need something that’s very strong. In chronic pain the effects of the medication are significant in the beginning and then they lose their effectiveness over time. Meanwhile your body develops tolerance which means that it takes more to get the same effect. And sometimes those patients develop dependent meaning that if they were to stop the medication they would go into withdrawal. If somebody wants to get off of opioids and they’ve been on them for a long time I used the dam analogy. I would describe their life as this dam that’s been built that’s holding the water and when they were young it was a brand new dam and there weren’t any issues with it. And over time they developed a painful condition that created cracks in those cracks were then filled in with opioid medication. The opioids filled the dam and became the only option. The patient then now wants to get off and the only way to remove the bricks out of the dam is to do it slowly to keep all the water in. You have to kind of pull each brick out and replace it with something else and usually that is some alternative treatment whether it’s an injection, yoga ,massage therapy exeterea, exetera. All of those pieces have to be replaced so that the dam is structurally sound and holding the water. If she tried to get up on the chair and twisted just one wrong way. That would be it would be going to the E.R. And then they’d shoot her up full of pills and give her heavy drugs to get the pain to go away. Being that way also leads to depression because you just don’t, you don’t want to do anything. You’re sad because everybody else is doing all the things that they normally do and you’re stuck there doing nothing. It typically would start with a physical trauma of some kind, an injury. It then moves into an expectation that it should be taken away and fixed. When it doesn’t heal and it continues then people get scared and they can start to catastrophize about the pain. So the thinking starts to play a role in maintaining or perpetuating the problem. Then we start developing avoidance. I don’t want to do anything if I could re injure myself so their life starts to shrink and that leads to anger and frustration that this whole thing happened in the beginning. And what does that do to the physical pain? It flares it up and makes it worse. And we go around and around. It was hard. It was really, really hard. You know when you love somebody so damn much you know you feel their pain. You want it to go away. You wanted to stop so you can you know do things together. And you know she just could do it. Because of the dependence in the short run, when the patient stops the opioids they get much worse because they’re in withdrawal. The pain goes up because pain is one of the symptoms of withdrawal. The opiate receptors are used to being filled are now screaming. So that has to be managed. In chronic pain, we have a condition that you assume is going to be with the person for life. That’s what chronic means. It might come and go, it might get worse or better. But whatever source of the pain or whatever the pain is about is going to be with that patient for life. So we have to really look at what happens when people take opioids. What happens is, temporarily, short term, they will work. Fast forward to two months. The patient comes back and they say you know Doc it was working great. But after the pill it seems to wear off. So I’m taking three instead of two a day. Is that OK?. That’s the point where the doc ought to say well maybe that’s not so O.K.. You know in a appropriate physician patient relationship to go in and say Doc what do you think about me coming off these opioids. I would think most doctors would say great idea let’s make a plan. So I moved to Pahrump in basically 1990 it was December of ’89. Came here didn’t plan on really staying in Pahrump but here I am. Raised my two sons here and I like the small town feel the sense of community is strong. You don’t get that when you live in the big cities you know Las Vegas. So these are these are the baseball fields where I spend a lot of time coaching youth over the years. Going through the memories are kicking in, you know. So being a baseball coach I mean all those years of being out there doing it on the field. Teaching the fundamentals of it being you know physically do it. There’s no way I could do it now. I would love to. I had a work injury moving a piece of equipment that probably shouldn’t have been moving. They were supposed to send a crew out and they sent one guy but he was, you know six foot six and I don’t know 420 pounds. He was just a massive young guy. I mean he was in his 20s and he grabbed this piece of equipment and he’s like oh yeah we can move it. If I could take that moment back I would. Because that was a life changer for me. When I was to the point where the pain was so bad and my back that the muscle spasms were locking me up and my knees were giving out to where I couldn’t even walk and function to do my job I had to turn to something. What was the treatment plan when it first happened? Opioids. We have 6 percent of the world’s population and we use over 90 percent of the commercially available opioids. So America uses a lot of opioids and so that’s just the treatment modalities that the doctors use. I went through the injections in the spine you know in the back and doing all that I went through the sets of those and got the relief from them but that’s a that’s not a fix. It’s a Band-Aid. When you’re in that much pain and you’re trying to do simple things,putting your socks on. I mean your fuse is this short because you’re in that much pain already. And I just have to watch what I’m doing and think before I before I act and do something. I’ve got a lot of life left. But I just know that I have to be careful when I’m doing it. I want to enjoy this stuff while it’s happening but be able to reflect on it and remember that stuff too and if you’re hooked on pain pills and altering your brain I mean you’re not going to remember that stuff. Pain is indicating that there’s something deeper going on. It’s our bodies inflammatory response. Every medicine we take is risk versus benefit. If the benefit outweighs the risk we take the medication. They’re effective. There’s nothing that’s more effective than them. They block pain nearly immediately. But that’s the science behind them. They work. It’s just that when misused they can cause people problems there’s always something else and you can explore. There’s a different treatment that’s a non opioid treatment that you could try. There’s the discussion that you can have with your practitioner. And if you’re taking an opioid and everything’s fine that’s great. If you’re taking an opioid and you think that there should be a better quality of life for you or there’s some problem that you’re having with it. There are resources out there that could help you with that. Well the model that I was trained and we use this called a bio psychosocial model. And what that really says is that it encompasses not only the physiology the physical part the biological part but there’s also an equally important psychological social and emotional piece. So to really look at the whole person we need to take a look at that perspective. And in fact you know any injury occurs in a context and there’s a meaning to the person for that injury. Sometimes it’s very traumatic. Sometimes there’s anger and frustration and blame all of those things play a role in how people ultimately experience their persistent pain. A lot of times when we assess patients in pain management clinic we’re assessing what have they tried and failed. What have they tried has been successful. And can we optimize what’s been successful. Can we add things that they’ve never tried. Those are the things that we’re trying to do because it is a mixture of many things there’s not going to be one silver bullet or a magic pill that’s going to take it all away. And oftentimes it’s not going to be curable. Pain can affect all aspects of the life. So what I usually what I like to do is that I like to use examples of things and so people who walk in here usually have this problem and the problem is represented by this ping pong ball and that ping pong ball represents pain. And usually by the time people get to see me as a pain psychologist their life that they used to have has shrunk down to the size of this glass. And this is what life feels like to them. And people usually get this. They go “Yeah. It feels heavy it’s all of who I am. It’s all consuming. I don’t like this.” And when I say as I said “you know what you probably would like me to help you do is to take this problem and get rid of it, throw it away.” But the problem is, the harder we try to get rid of it it keeps coming back. So. What I’ve learned is is to shift the focus from trying to help people get rid of this thing to look at where their life is now and essentially move from this life. To this life. And here’s what happens. And at this point I usually become very quiet and I let them tell me what this means to them. And 95 percent of the people get this and they say something like this. “Wow. Are you saying that if I have a bigger life, the same amount of pain is experienced differently?”I say exactly. You get it and your task then is to move from this small life that pain is created to a bigger life, a fuller life. Because if you have a fuller life and you practice some the skills such as breathing exercises. You practice meditation you add more things to your strategy to your life all of a sudden your experience changes and you’ll notice the pain is still part of that new life. But it’s not the only thing that’s in it. And that’s the difference. I just remember feeling overwhelmed that there wasn’t one thing I could do to help this pain and I kind of figured out then that it was gonna be a long road and there probably wasn’t like a magic fix. I don’t tend to focus just on the pain. And I think that helps me. I think if if I were to sit and dwell on the pain 24/7. I would be much worse off. And we just like well it’s not, something will happen. Some something will make this better. There’s a ways that we can make this better. And that’s how we’ve, always gotten through all of all of our issues all of the things that we’ve overcome. And I’m extremely proud of my wife for the progress that she’s made and she’s done it through determination through being stubborn through through just never stopping never quitting never accepting. I find that distraction is a big friend of mine. I try to stay busy. Busy just doing household things. Taking care of the kids driving them back and forth. But, how do you do all that with your pain? It doesn’t matter if I hurt it doesn’t matter has to get done. It’s not an option to not do these things I have to do it still has to get done. Trying to focus on other things, tends to help me. My spinal cord stimulator has been a huge help. I have done the ketamine infusions. I also see a psychologist. She’s helped me. A lot. Just staying active trying to stay active. I think for all the people that. Live with chronic pain. My biggest message would be to not give up in trying to find ways to help herself. Seek out the doctors that are willing to think outside the box. Seek out researching yourself researching for yourself finding talking to other people who have your same condition see what kind of treatments they’ve tried. I think there are a lot of treatments that could help for each condition. It just depends on the person. And I’ve been very lucky that my doctor has been open to continuing to try different things with me. Life can be better. You do not have to live the way you’ve been living. Over the course of time. With proper skills and training some diligence.Some courage. You may end up finding freedom. Good how are you doing. Well better. How’s your back? Actually it’s remarkably well. She has to come into the office and not be able to even barely lay down on the acupuncture bed. When I first saw her I really felt like she had given up. But she didn’t think she would ever be out of pain which was just going to continue on medications and it was debilitating for her and her husband and for her family her son and daughter in law and granddaughter. She started to see a little bit of change and they got more and more and more motivated. And as she got more and more and more motivated and motivated her husband they started changing their eating habits. They started going for walks. They were really paying attention to how they were functioning. And she started really taking control of her life again. All these things that she was doing for me was giving me back my life that I didn’t have. And now it’s just like hey you know we go all over the place together and do things so. It’s a bit of a big step forward. It helped a lot. So yoga, Yoga is my really good friend right now. So the yoga and the stretching and all that is just really good. The meditation part of it and the breathing and all that and stretching it all comes together to help the mind and the body and soul. I know it helps some because he’s very busy throughout the day not just sitting at this desk but running around various places having traveled to Vegas and he puts a lot of pressure on his body so to have again a time out throughout the workday to kind of rejuvinate and recover. It’s been very helpful. Without the alternative treatments I would probably be dependent on taking opioids on a regular basis. I mean you know that I wouldn’t be able to, I wouldn’t be able to function I wouldn’t be able to come to work and function and you can have normal daily activities of living like people need. We’re both excited to get you know when the 21st of August comes around and we head for Las Vegas. We’re going to be just jumping up and down. Just a lot of fun to be able to go do something that we both enjoy immensely. The way you play out the whole trip is going to be about 8 thousand miles. OK. You’re in the car. You give it a little gas. Star out. Tops off, your hair blowing in the wind. You’re just free. It’s just a different kind of feeling. Wherever she goes through the ups and downs the ins and outs you know I’ll be there with her. She’s down I’m down there to help her up. And she does the same for me. Well like I said he’s an angel I owe my life to him. Because without him I couldn’t do anything for myself. He means the world to me and without him I’d be lost. And I wouldn’t have a Corvette! There is hope for people with persistence. You need to talk to your doctor about. The possibility of developing a team a team of specialists to help you. We know that pain is not just a physical sensation but it has emotional social, many other contexts. People get better. You can get on with your life and be more than your pain problem. What I love about my job mostly is watching a patient go from having something that is affecting their life so significantly to something that is just a peripheral thought in their day that doesn’t affect their life as much. And that transition is very rewarding. At some point in our life we’re all dealing with pain and so we should be able to get together to help everybody else with their pain. The most important thing that you can do is believe that you can get better. This is not how it has to be for you. Have a have a life that’s filled with the kinds of activities that are important to you. The hope is that your perception, the way you look at this plays a huge role in how much suffering you have. I want to encourage you to add to your life despite having pain and live the fullest you can.

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