Managing Chronic Pain with Psoriatic Arthritis Transcript
“Welcome to this episode of “Psoriasis Uncovered™”, a podcast series produced by the National Psoriasis Foundation, the nation’s leading organization for individuals living with psoriasis and psoriatic arthritis. Join us to hear our guest speakers uncover topics that lead to a better understanding of the disease and management, to coping and thriving with psoriasis and psoriatic arthritis.”
Sue: Hello and welcome to today's episode of Psoriasis Uncovered, where we will dive deep into the topic of pain and pain management. Something many people with psoriatic arthritis know all too well. Pain can be complex. It can be chronic. It can be acute. It's a very complex physical, emotional, and deeply personal issue to deal with. And we're going to talk about what pain really is, how it affects us, and what we can do to manage it more effectively. I'm Susan McClelland-Tobert, and I'll be your moderator for today's discussion. I'm a recently retired pediatric cardiologist who also lives with psoriatic disease. Pain is something I'm very familiar with experiencing as I've had a number of issues with my joints and tendons. I've had dactylitis, enthesitis, inflammation. Joining me for this discussion is my former colleague, Dr. Erin Maslowski, a physician, a physiatrist at Emplify Health System, where she specializes in physical medicine, rehabilitation and orthopedic sports medicine. She specifically helps those who are in need of pain management. LB Herbert is our second guest, who you've heard before on Psoriasis Uncovered. She also knows what it's like to live with pain associated with psoriatic disease. And she's developed her own pain toolkit. Welcome, Erin and LB. I'm so glad you're both here. LB, managing chronic pain is such a personal journey. Beyond the physical discomfort, pain affects our emotions, our energy, how we interact with others. Can you share what pain means to you and how it's shaped your daily life?
LB: So for me, pain is unpredictable. Like, I never know what I'm going to wake up to or experience that day. It could be small, sharp pains here and there, or just a feeling that my whole body's been consumed. And what I find the most exhausting is almost the uncertainty because I don't know how to plan for it. It used to affect me much more so, and we're going to talk a little bit how I've overcome that, but it's just having to build a new structure around that unpredictability and manage it so it doesn't manage me.
Sue: Thanks for sharing that. I can really relate to what you've shared that pain can make it difficult even to just get out of bed. There's such a mix of physical limitation and sometimes even just an emotional frustration that pops up and how do you figure that out. So Erin, I'd like to turn to you for just a minute. From your perspective as a pain specialist, what's happening in our bodies and brains when we experience pain, both the acute and chronic?
Dr. Maslowski: Thanks for inviting me to do this, Sue. So when we experience a pain that is acute in nature, acute just means that it just started. It's protective. So you touch a hot stove, your body's telling you remove your hand from the hot stove or you're going to experience injury and that all happens by specialized nerve endings called nociceptors that are detecting that tissue damage, inflammation, something like that. It's then sent as a signal up the spinal cord to the brain where it is processed in our pain processing centers of the brain. And so then your brain makes meaning of these signals and creates an experience that I think from a very early age we recognize as pain. So nobody likes to hurt themselves, but when you have an injury like that, the system is working like it's supposed to. But with chronic pain, so when I say chronic pain by definition, it just means a pain that has been present for more than three months could be any, for any reason. It's different. We say the system, the nervous system that we talked about can become hypersensitized. And sometimes that's referred to as central sensitization. So it's as if you had a volume dial and actually unfortunately the pain that you typically feel can be experienced as greater than the original signal and so the pain signals are there even when the tissue is not as we say the issue. So in an inflammatory condition, so for example like psoriatic arthritis which we're discussing today, that ongoing inflammation, keeps triggering the pain pathways, but it does not serve the same purpose. It is not protective. And then unfortunately, the nervous system can get very efficient at conducting those messages. And so chronic pain can be affected by all kinds of other factors too, such as sleep, stress, your activity levels, too much activity, not enough activity, all of that factors in. Unfortunately the brain can get very good at conducting these pain signals and that creates a negative experience for the individual. So that's why treating chronic pain is just so complicated.
Sue: Erin, you are speaking my experience in this moment. And I have to say, what I'm hearing is all right, the effectiveness of this mechanism of warning. OK, we hurt ourselves. Pain happens. Boom. We pull our hand away from the hot stove. Has now gone awry and boy, it's like I'm always all on and I think that is really a point that's jumping out at me from what you've shared. It helps me make better sense of why even when maybe the disease itself is under control and I know that, boy, I still am all on with the pain. How about practical management, Erin? Like what are the general principles of pain management for anyone with arthritis or something inflammatory like this, what do you usually recommend to patients first?
Dr. Maslowski: Well, specifically, if there is a rheumatologic condition that is inflammatory in nature, job number one is to get established with a rheumatologist and have them control the underlying disease. So we wouldn't want to do anything else before really getting that managed and figured out. And that's not what I do. People come to me because they want better management strategies for their pain. And so some of the other things that we would talk about, a very basic one is low impact exercise. There's just so much data to support this. And I used to think that was in the setting of osteoarthritis. That's where I live and so that's where the data that I was seeing really supported that, but I've had conversations with rheumatologists who say, nope, that's what we recommend too. And in fact, the American Academy of Rheumatology I know lists warm water pool exercise as one of their top recommendations for pain management. So we're not talking even about It's the right thing to do, exercise is good, etc. We're actually saying it's going to help your pain and that warm water piece seems to be really important. So even if you can't tolerate exercise on land or on a machine or at the gym, getting in a warm water pool, sometimes hotels will open up their resources to our exercisers in our community or some of my patients, if they have the means, invest in a hot tub and do their exercises in the hot tub. So those are just some ideas. Another thing is understanding your body. I know our pain psychologist will have people go ahead and make a pain diary and the point is not to get so sort of obsessed with your pain that you're thinking about it all the time. But if there is something that is consistently a trigger, maybe it's time to ask for help from a neighbor or a handyman or your brother or somebody else. Hopefully you have the resource or a person in your life that could help you if the lawn Is killing you. Maybe somebody could help you with your lawn. Maybe your child could help you with the lawn. That type of thing. Heat and ice. Boy, those have been with us since the beginning of time and that's another experiment. Most of my patients prefer one over the other and they often want to know what is best. I would say whatever works best for you is what's best. And of course alternating heat and ice might be the best option. Usually a treatment would be about 15 minutes for either or if you alternate 15 minutes a piece. And then if you don't have any medical issues that would prevent you from starting over-the-counter pain medication like Tylenol, ibuprofen, Voltaren gel is now available without a prescription. Those are great. Lidocaine patches, Tiger balm, capsaicin cream, all of these can be helpful and the topicals tend to be very, very safe. With Voltaren gel, there is an upper limit on taking Voltaren gel. So the instructions are on the tube. So I would just again, I understand when people have diffuse body aches. You know you'd like to just get a tub of it and hop in, but you really can't. And so make sure you're taking Voltaren gel or any of these medications as directed as well. And I think just because sometimes these things are available even at a gas station, we think they maybe aren't as helpful. But ibuprofen is an excellent non-steroid anti-inflammatory drug. If you have no other reason that you shouldn't take that medication, then I think it can be very impactful. So those are some basics, I'd say.
Sue: So the fact that my heating pad is my best friend, you're saying thumbs up, that's OK.
Dr. Maslowski: That is OK, but I have seen many people who have changed the appearance of their skin because they live with a heating pad on their back. So I love a heating pad myself, but I always set a timer and take it off after 15 minutes. You get what I think it's called a lenticular rash from overuse of a heating pattern. Unfortunately that is permanent, so you just want to be careful with that.
Sue: OK, that's actually really helpful to know. Great point. Thanks, Erin. I appreciate those recommendations so much. LB, when you first start to feel your pain flaring, what do you reach for? What's in your early toolkit?
LB: So my toolkit really replicates a lot of what Erin just talked about. I go to those basics of the heat and the cold. I think for me more so it's the heat. But as she said, we’re limited with the heating pad, it's my hand warmer. So I have these cute little heat up, look like little avocados and when my hands hurt from typing, I can just grab onto them, especially at work. Say you're in a meeting, I'll take that time and not typing to hold on and just kind of get that achiness away. I have a mini tens unit and that to me really helps to disperse the pain too. You can put it on. Nobody really knows that you have it and it kind of deflects it for me. I do say don't use it driving though, that's just a good safety tip. Topical ointments, now that the Voltaren gel's over the counter or the patches, that's a great way. But overall, I just try to keep moving. You know, they say motion is the lotion for your joints. And I stretch, I do some PT exercises, grab little weights, walk. Just try to do something to keep those joints from really, I feel like they're almost stiffening up if I sit still and that just exasperates my pain.
Sue: Yeah, I, I would agree with that too. It's really interesting to me how sitting for a period of time, I I feel so creaky. It's like trying to open up those joints again just to get out of the chair. And heat too is really one of my favorites. Something came to mind though, as we're sharing here is that it's probably reasonable to be cautious about some of these gels, etcetera if you have active psoriasis and skin rash, because they can really kind of get into those cracks and inflame and cause more pain themselves if they're reacting with open areas on your skin. LB, I'm curious what tends to trigger your psoriatic flares and sometimes that can be hard to figure out. Do you recognize when one is coming on?
LB: I do recognize it. Fortunately, with my new biologic, they've really been under control the past few years. But before then, it was to me, I used to call it like I was filling with cement from the waist down. I just, I started to feel my legs were solid, my joints were solid, and there was a heaviness I couldn't explain. I wouldn't say it was as much painful. It's just like this consuming feeling that wasn't normal for me. And what I had to do was just start moving. And I would say to the kids, we're going to the mall or we're going to just you're going to walk Mom around. And I might be shuffling, but I just wanted to keep the movement going. And some of that was also to get myself tired enough to sleep through it. Because I think we all know that when you have the pain, you don't get as good a sleep, and if you don't get as good a sleep, you're not getting that recovery that you should have.
Sue: Yeah, that is a huge catch 22. It just one feeds off the other. So I heard you say that you have these other symptoms of this feeling of the wet cement. How about the pain? Like how do you recognize when maybe more pain is coming on? Is it all tied together?
LB: It is in a way, especially when there's weather changes, like say the pressure, extreme weather, extreme pressure. I start to feel it in certain parts of my body and I'll know that I'm like, yeah, it's coming on, just even like a a painful episode for me and I have to just start to mitigate it from the start, cause I know if I let it go, it's almost like the snowball effect. It gets worse. So it's like cut it off in the beginning before it gets any worse from there.
Sue: So what kind of proactive steps do you take? Like when you feel this starting to happen?
LB: I use, if it's say a skin flare, I go and put some topical. I only use the topical in case of emergence for myself. Otherwise the biologic has it under control. My uveitis, I start with the steroid eye drops that I have once that comes on. Regular pain I'm on Meloxicam every other day. I may go to my Meloxicam once a day and under really bad flare conditions I have a steroid pack that the rheumatologist has given me because she knows I know when it's coming on so I can start on that immediately to control it before it gets too far.
Sue: Thank you for sharing that. LB, as I'm listening to you, we are kindred spirits and sometimes just sharing the fact that there is someone else out there who understands and can connect with what you're saying is comforting in itself. So thank you for sharing because I I feel like my experiences are so very similar and you try your hardest to take those proactive steps, which may or may not work. So it's kind of sometimes just a guessing game. Erin, once the pain starts to escalate, or maybe you kind of get into that weird chronic pain cycle, like what are the next steps? Or when do you even consider advanced treatments like injections or other interventions?
Dr. Maslowski: Yeah, so when I start to think of injections I find it works best for someone who has problems that are somewhat localized. So for example, a knee, a hip. Then we might try a steroid injection in that instance. And I often say to patients they are typically covered by insurance for chronic pain conditions and do show a short-term benefit for chronic conditions. Where I really turn to steroids is because somebody is having a flare up. So for example, especially with psoriatic arthritis, you might notice that one of your joints has become quite boggy and full of fluid. And then we take off some of that fluid and put a bit of cortisone in there to try to keep the inflammation down so it doesn't just reaccumulate. So again, it's hard to treat many areas of the body with an injection, but if one area is particularly problematic, that's when I think that injections work the best. And then when it comes to chronic pain, inflammatory arthritis, really again, that's going to be about a biologic to manage that disease. However, say you're somebody who has knee arthritis (back to the knee) and you've even been offered a knee replacement, but you don't want to have one of those just yet. We can offer something called a nerve ablation, which is where we use thermal energy to break down the nerve, damage the nerve. And that is a semi-permanent in the sense that when the nerve recovers the pain will likely come back, but that is a technique that we use to manage chronic pain and those last six months to a year. So it kind of depends on the problem, where it's located, and how it's behaving. The history of that problem, how is it presenting? Why are we addressing it now? Was there an injury? Did it just flare up or are we trying to get this thing under control? And sometimes I make those decisions also not only taking into account history and physical exam, but also what does your imaging show? So if a knee looks perfectly normal on x-ray then typically I would not recommend some of these approaches because let's just leave that normal looking knee alone, that type of thing, so.
Sue: So I have a question around that. Erin, you talked about injections. Is this in my imagination or not? I feel like when I've had an injection of a steroid in and around an inflamed tendon, the rest of me feels better for a while too. Is that accurate?
Dr. Maslowski: Yes, there is systemic carry over of that steroid to your whole system. It does not just stay localized. Now most of it stays put. So that's why for example, say one of my patients has a spine condition. If I'm just seeing them in my office and I want to give them something right away, oral steroids might calm down that pain. But we do think that an injected steroid right at the problem helps more because it is more localized. However, both of those will give the patients a systemic exposure to steroid. And one of the ways we know for sure it’s not just Sue imagining this in her head, is because we know that steroids elevate blood sugars, right? So if we give a steroid injection to a diabetic, we will inform them that this will raise your blood sugars and that's seen whether you inject it or take it by mouth and that effect lasts maybe three days, occasionally a little longer, but that just proves that the systemic effects of steroids are there because they can see it in their blood sugars. So similarly, my patients will often tell me “ever since I got my back injected, my knee has been feeling a lot better” and that's that systemic carryover.
Sue: Sure. Well, I appreciate that. So it wasn't all in my imagination. And I'm getting the sense though that it's not like you can really just go around injecting every sore spot with steroids forever, is that correct?
Dr. Maslowski: It wouldn't be very good for you. So just like your rheumatologist is keeping an eye on, some of these conditions, they do feel better if you're taking a lot of steroids. But there's some unwanted side effects that are often, some of which are not reversible. Some of those are physical, some of those are physiologic. So we want to keep an eye on how much steroid you're receiving. For example, bone density can suffer with chronic steroid use, and there's other issues too that we'd like to avoid. So we just want to be using judiciously is the key.
Sue: Sounds good. Yeah, that all makes sense. Erin, I have one more thing I want to touch on here on this same line of thinking. You spoke about how our brain perceives pain, chronic pain, and I'm wondering if you can make a couple brief comments about some of the medications that exist now that kind of change up how the brain is perceiving pain. So not local steroid injection or steroids in general, but some of the other medications that are out there. I think there's maybe some others that exist. Is that correct?
Dr. Maslowski: Yeah. And as far as I know, we mostly are speculating as to why those help. So, there are a variety of classes of drugs that we call upon to help with chronic pain. For example, we use gabapentin as a pain medication developed for treatment of seizures and it works on the calcium channels of nerves and actually it acts by reducing the excitation of the nervous system. We don't use it very often for seizures. We by far use it more commonly for pain. So we don't understand exactly why neuron or gabapentin helps pain specifically, but it does. And so that would be one approach for pain management. Another that comes to mind is duloxetine, which is marketed as Cymbalta. That is a SNRI (serotonin norepinephrine reuptake inhibitor). So it's a bit different than some of the other antidepressants like fluoxetine or Effexor or something like that. The SNRIs seem to also have an effect on pain. So when people are having pain central sensitization, sometimes I will be more likely to turn to some of these medications that seem to have an effect on neurotransmitters specifically because that is part of this nervous system mediated pain pathway. So Sue, does that answer your question?
Sue: That does answer my question. And actually it's helpful because I think now today more than ever, we have broader choices and many more tools at our fingertips to kind of try to manage this other than Tylenol, ibuprofen forever sort of thing. Erin, we talked about the steroid side effects. So before we kind of leave the medication topic, is there any other meds out there that you'd like kind of give us a little caution about?
Dr. Maslowski: Yeah. So interestingly, I think one of the medicines that is most accessible to us is one of the medicines that I most often tell people they have to back away from, and that is ibuprofen, naproxen, the non-steroidal anti-inflammatory drugs. I think these are the most effective medications that we have for pain, even more so than opioids. But for anybody who has kidney disease, a history of gastrointestinal bleeding, there's just not an option for you. Coronary artery disease is worsened by NSAID exposure. Some of the NSAIDs had to be taken off the market and so forth. So readily available, but not for everybody. Likewise, Tylenol is the medicine that I think most people are on until the end of their life, but not somebody who has a liver problem. So if you have a history of liver disease, you have to be careful with that one. Many of the medicines that are effective for pain, not Tylenol and ibuprofen, but the other ones, will have a cognitive dulling of sorts. You feel maybe down, lethargic, slowed. People have different ways of describing this, but that can be true for gabapentin, like we talked about earlier, and that makes sense when we think about how these medications function, they are slowing down your nervous system. Likewise, the antidepressants are pretty well tolerated, so that's good. But then we move into muscle relaxants they can also have that kind of heavy, lethargic feeling associated with them. So you want to watch out for how these medications make you feel because nobody has time to feel slow and heavy or brain fog, that sort of thing. And then I'll just lastly mention the opioids. We're not turning to them as often for chronic pain. But I do use them occasionally, especially when somebody can't really tolerate anything else. And so I'm most often using opioids in someone who is quite elderly because actually they are not hard on your kidney or your liver, so those can be in the right situation used very sparingly, very helpful. But of course the opioid epidemic is well known to most, so we're really careful around that one too. And so here's the crucial part. I always set realistic expectations with my patients. I tell patients that our goal isn't necessarily to get to zero pain. That's just not realistic. We really want to focus on improving our function and quality of life. So if we can get your pain down two points or cut it in half by 50% and that allows you to do the things that are important to you then that becomes worth it. Sometimes that means that we have to use medications strategically. So for example, if something makes you tired, well, maybe that's going to help you before bedtime so that you can get a full night's rest. Or maybe it makes you tired, but you have rare but very, very painful flare-ups. Well, then maybe we're only gonna use that medication for flare ups and that sort of thing.
Sue: So I think really connecting with a Pain Specialist could be of benefit to a patient. And at the same time I'm a big proponent of doing what I can day-to-day. It's not like my pain person is living right beside me and I can get their help immediately. So a lot of it is this kind of personal management, what works best for us and LB I'd love to turn back to you because you've built your own pain toolkit and we'd love to hear more about it. How do you decide what tools to use? What tools are in your kit even, and when do you use them?
LB: So a lot of the tools, as I mentioned earlier, the heating pad, the ice packs, the electric hand warmers, the TENS unit, the Voltaren gel, steroids if it gets really bad. But I really try to avoid any pharmaceutical. But it's not just those physical tools. I do work with a pain psychologist and it's been incredibly helpful. We focus on that emotional side of the pain and different strategies to help me live with it rather than fight it constantly. So mindfulness, pacing, trying to reframe what I'm going through has become just as important as anything say I could like rub on or plug in and attach. It's it's given me a new outlook because we know, you think about it often, if you start to get depressed, I find my pain gets worse. If my pain gets worse, I start to get depressed. So that whole-mind body crossover is just trying to address it all at once and the work with her has really changed a lot of how I live with my psoriatic arthritis.
Sue: LB, what I appreciate about that is really considering the whole person. So it's not just about treating a joint, it's about inviting in this wholeness, this mindfulness, this pausing and pacing like you mentioned that really is respectful and dignifying for you as a whole person. Thank you for highlighting that. I would agree too that I had to do a mindset shift around thinking I could get my pain down to a one or a zero and that took some time to think through and self-manage that maybe only a three or a four is where I'm going to land at sometimes during the month. And what is possible with that level of discomfort, even though I would love to get to the point of saying, oh gosh, I can be that youthful person again, springing around with zero pain. That's just not realistic anymore. And that's hard to kind of rearrange your thinking that way. Which makes me wonder, LB, you're a one-to-one mentor with the National Psoriasis Foundation, and I'm curious in that mentor role, how do you approach or do you when you're with a mentee, discussion around pain and management of all of that, what kind of tools and support do you offer?
LB: I try to give them the advice of what I follow and how I go about approaching my pain. There's no probably one magic bullet. I myself am one that I stay away from the pain medication. Steroids is probably as much as I'm going to take for oral drugs because I don't want the dulling. I want to be able to work. I have a very, I'd say a high cognitive job. I want to be able to drive safe, care for my family. So that was not an option for me. They may elect that as an option and I may not be the mentor for them because I'm very much we need to kind of rewire our brain a bit. I'm trying not to be a pain psychologist, but I'm trying to give them some tools that I've learned on my own. You can't let yourself get sedentary. I think that is my one big push is you got to fight through it. You got to get up, move. If you just move three feet, you move 3 feet more than if you stayed on the couch. And you got to take those actions for yourself and try some of these to find out what's going to work for you. And the toolkit's not one thing, as you saw my toolkit's like a suitcase full, but you know keep at it because the end result is really worth it.
Sue: I'm wondering, as you're sharing that, I think I might need you as a cheerleader sometimes because one of the challenges is overcoming the fatigue that sometimes accompanies a flare, which is entirely different than the pain. But there's like this rolling commentary in the brain that happens. I bargain with myself, “Well, do I need the groceries today or not?” Because I'm way too tired to get up off the couch and I know how much it's going to hurt. And I'm wondering if you've encountered that either yourself LB or with those that you've mentored, that whole cheerleading piece.
LB: Yeah, it's good. You need it. Everybody needs a cheerleader in their corner. You know, you may not cheer for yourself, but to have somebody else cheer you on, I think is really important. And maybe it's a meet in the middle, right? You can't get off the couch and get the groceries, but can you go to the kitchen table, sit down and order and have them delivered from Instacart, say? Or make a list to give to somebody. I'm not one to ever ask for help. So for me, that kind of was like, well, I can't ask somebody else. I'm going to have to force myself to do it. But maybe find that support person, find your spouse and say, “hey, today I can't do it, but I made you a list and you can call me on the phone if you're in the aisle and you don't know which one you want and we can get this done.” Kind of teamwork makes the dream work in that situation. But yeah, I think if you get sedentary and you get down, which is so easy to do. You may not get back up as easily as you could. So, pick up the phone, even go to the resources of the National Psoriasis Foundation has. Get yourself a one-to-one mentor or just, find somebody else out there that you can connect with and they don't have to have psoriatic arthritis. You may have a friend with RA. Or a friend with lupus. I think we all feel that fatigue and that pain and just commiserating with somebody else goes a long way. It's kind of like dissing the pain together.
Sue: Yeah, I I agree with that. And even just somebody giving a little bit of compassion can actually make your pain feel less. It's amazing. Yeah. Yeah. So I'm getting the sense then that there's so many different ways we can battle this chronic pain issue. And it's also about creating a team, like a pain management team. Erin, who else should be a part of a patient's pain management team?
Dr. Maslowski: Well, I mean, we talked before about how you need that rheumatologist, a good connection with that specialty, of course. And then a primary care provider is required for everyone, but you want somebody to kind of look at the overall health, all of your wellness levels and screenings and managing how that all fits together. I often tell patients who live with chronic pain that they need a physical therapist on speed dial. These folks can teach you specific exercises, help you move better, develop strategies, protect your joints. And sometimes we will get an occupational therapist involved as well. So especially for upper extremity concerns, that's a little bit more of an occupational therapist realm, especially a hand therapist. And then occupational therapists also help with day-to-day activities of daily living. They both can, but an occupational therapist can help make modifications if necessary for dressing, bathing, eating, that type of thing. And I'm really glad that LB brought up the mental health professional. That is also on my list. We are so fortunate that we have a pain psychologist embedded in our department who can really help people treat their pain cognitively, and there are various approaches to that that are well described and validated. It's just another way to approach the problem. I can't tell you, I can almost predict it. So many of my patients when I bring this up say, so you're saying this is all in my head, which is exactly the opposite of what we're saying. But when you think about it, pain is mostly in your head. That is where the pain is interpreted. So it makes sense that we would give a lot of time and attention to a therapy that addresses that directly. Then there's the people like me. I am a physical medicine doctor by training. There's also pain management specialists. They can come from a variety of fields, but they do a pain management fellowship. And so we are part of the team, but certainly not the only members of that team.
Sue: And I'm thinking at the very center of the team is the patient.
Dr. Maslowski: So that's so true because the patient is their own best advocate and they're the ones that knows their pain best - what makes it worse, what makes it better, what it even feels like, what's effective. So the patients that do the best are the ones that really are leading this team of various specialties.
Sue: Yeah, I think keeping those lines of communication open and nowadays more than ever, being able to send a message to your provider. Granted, it might take them a while to reply, a day or so, that you can kind of keep those links and that communication line open so much more easily and streamline your own advocacy that way too.
Dr. Maslowski: Right.
Sue: LB, have you encountered in the times that you've been a mentor or maybe even personally, was there any stigma to overcome around seeking the help of a psychologist? Or what advice might you give to someone who as Erin mentioned says, “you're telling me it's all in my head”?
LB: Oh, I think there's so much stigma around mental health as it is, whether we're talking about in psoriasis or outside, that people feel almost embarrassed or ashamed to admit that they need that help. But I also think they may not know it's available. So to me, I have a PhD in industrial psychology. So I don't cover the clinical side, but I would have never thought to seek out a pain psychologist. I was at my rheumatology office explaining to her that I wasn't just feeling myself. I was achy. I was sore. I was kind of down. And she had a patient who was also a pain psychologist, so she knew her and recommended I meet with her and just see if there was a fit. And its really changed my life, but I would've never thought that. You know, you might even hear in passing, but never stop to be like, what do I even look up to find a pain psychologist? So I'm hoping this episode alone really raises that awareness that patients can ask their doctor, whether it's their rheumatologist or their primary or go through some of the online resources to find a mental health provider that specializes in pain. I think that's a great way to open it up. It can be done easily online, so you don't have to worry about travel. You can be on that couch if you're not feeling well and get partnered with the right person.
Sue: Yeah, virtual visits nowadays have really revolutionized how patients can access the support that they need as well. Definitely. I took a pain course that was over a six-week period. It was all virtual and was able to do that in the comfort of my own home and learn more about how to kind of dive into some of these things that you have suggested as well. LB. I'm wondering if we can return to the fatigue and sleep going hand in hand with kind of that vicious cycle of chronic pain. And LB, I'd like to tap your experience around ideas of how to kind of maybe overcome some of the challenge around there. Can you share some of the strategies that you've learned from your pain psychologist to help you cope with pain, kind of preoccupying your thoughts draining your energy? Any ideas there?
LB: Yeah, so she taught me a bit about reframing my thinking, some relaxation techniques, and just how to manage the frustration and fears that come with chronic pain. So as the pain comes on, your brain might go to a dark place. Like, am I going into a deep flare? Is my biologic not working, and you start just spiraling what this could mean you make the gloom and doom out of it, how to, stop and overcome that. And she's like, you know, “you've overcome this before, you can do it again. It's not the end of the world, you know, and just kind of reminding me that maybe I've been here before and I was able to get through it”. And also how to just refocus. We did learn, my obsessive compulsive personality disorder, I like everything neat in a certain spot. That's been my way of honestly coping with some of it. I'm keeping my mind busy. It may drive my family a little crazy that everything's in its spot, but it diverts my attention away. So we've kind of come to some middle ground there and just working through that and letting some things go on that front and thinking more positive thoughts and not beating myself up over past events in my life or past feelings and emotions that I've had. And also I it gave me that cheerleading sense. Like I don't think I could have been a cheerleader for somebody else until I learned to be a cheerleader for myself.
Sue: That's profound. We need to all be cheerleaders for ourselves. That's what I hear you saying first and foremost. Erin, is there anything that you would add to or comment on around the fatigue part? Beyond what LB shared as far as like combating it. It's to me it seems like it's not just the run-of-the-mill “now I'm tired”, it's something different.
Dr. Maslowski: Right. I would agree. And fatigue happens for so many different reasons. So it's really complicated. But it does seem like this is a fatigue that is not simply fixed by a vacation or spending all morning in bed or something that typically would help a person catch up on their rest. So this is a real thing. It is part of the disorder, unfortunately, the disease and exhaustion can really take a toll on people's sense of well-being. It's a serious issue. I think some of the stuff that we hear commonly about sleep hygiene can help. So keeping that consistent sleep schedule, making your bedroom cool and dark, limiting the screen time before bed, that all makes a lot of sense. Really do the basics. And then you might want to just think about energy conservation or pacing, which just means that you're placing priority on those things that are the most important and then building in rest breaks and then occasionally saying no to things that are less important. I think as I reflect on my own life, I can think of things that I say yes to because I feel obligated or I'm doing it for somebody else. And this is a time when you're trying to really continue participation in the things that are the most important that you might just have to pick and choose. And that's tough, but I think it could be really helpful. One thing that people notice as another strategy that is counterintuitive is that exercise can help, and that might seem unlikely if you're feeling really low and exhausted. But gentle movement, even if it's just going for a walk outside, might help, but it might not. I would just enter into that with some curiosity and say, well, I'm just going to try it for 10 to 15 minutes. If I'm still tired, then this is not going to be the ticket. But you might just find 10 minutes in that you would like to keep going because you're actually feeling a little bit better. So even though you don't feel like a light exercise episode, that might be helpful. And so I think that when people are really in good touch with their body, then they'll be able to perceive if this fatigue seems to be a lot, even for them. Even though I often experience fatigue as part of my disease process, this seems like more for me. And then that can be something that you take to your rheumatologist, your primary care provider and they can start looking for other causes for fatigue. So once again it's very important to be in touch with what your body feels like.
Sue: Yeah, I personally feel that fatigue can sometimes demand as much of my attention as pain can, and it's almost like I guess I liken it to my immune system is in overdrive. So if I'm exercising one day, for example, and overuse a muscle, that muscle might be sore and tired the next day. That's kind of what happens to my immune system. When it's in overdrive and everything's inflamed, it's going to be sore and tired for a while until I can settle it down, and calm it down and kind of get back into a better pace of things. And what I hear you saying, Erin, is this whole idea of thinking it through, conserving your energy, or at least being aware of balancing kind of the activity piece with the energy conservation is really, really important and It took me personally a while to arrive at that spot of understanding my body to recognize that. LB, do you have any comments about movement and like what kinds of activities in particular do you find most beneficial?
LB: I think walking, that's the one it's the easiest. It's like probably the safest. I'm not running up hills or doing anything that I might fall off of something else. Stretching. So I have the luxury of physical therapy through an app supplied by our health insurance company. So that comes with exercise and I've met with the physical therapist there and they tailor those. So when I have time, I can do some of those stretches. And also I do martial arts, so I am a teacher. I don't train as hard as I used to, but I'm able to keep that motion and that different movement going. And that just gives me a wider range of motion also.
Sue: Do you think that it's inevitable over time LB that we're just going to kind of really end up slowing down in our ability to do things? I'm curious of your thoughts on that.
LB: know there are things I can no longer do that I used to do. I mean, just opening jars and bottles and different things. I'm always passing it to my husband or finding my handy dandy jar opener. There's certain things with body. My leg isn't going as high as it used to. It's still getting up there, but I can't, do what I once did 10 years ago. And I think we're all going to face that. But I think we have to also stop and go, what can I still do? Look at all the things I can still do. Even if something is taken off the list of what I can't do or I can do it limited, there's still so much more you can do and also with some stretching and working with say a physical therapist. There are things you didn't realize you could do or other options for exercise and activity out there.
Sue: Yeah, that positive bent on things I think is really important rather than considering what's been lost, what is still present and can be preserved or even maybe even gained. Which leads me, Erin, to my next question for you. What's next in the world of pain management? What's on the horizon? Because we want to keep thinking about the future being bright.
Dr. Maslowski: I think that some of the pain neuroscience education that we've talked about already is still really feeling fresh and new, even though it's been around since I started practicing 15 years ago. I think this feels like an untapped resource that we're still trying to figure out how to really bring that to patients and make it actionable. I am always impressed with how advanced research and the constant evolution of medical interventions and specifically in the biologics, how that can profoundly impact inflammatory arthritis. And so I don't prescribe those drugs, but they are just, I think that is an area that is just constantly growing and changing and becoming more powerful. On the other end of that pendulum is integrative approaches that have been with us for since the beginning of humanity that are finally getting the attention they deserve, like yoga, meditation, acupuncture. There is good evidence to support those interventions and so people should definitely be exploring them as they can afford to. In my area, which is again a little bit different than inflammatory disease, but more of that general osteoarthritis that all of us will get as we age. I think regenerative medicine has got a lot of attention. It is not really covered by insurance and so that is a barrier. But we're talking about taking people's either blood or bone marrow aspirate so actually taking the fluid out of their bone marrow and treating it usually with a centrifuge and specialized kits, and then injecting that into degenerative body parts like a knee for example, or elsewhere, and noticing that people can stimulate a healing response. So those are pro-inflammatory procedures. And so can we use them in somebody with inflammatory disease? It's not contraindicated, but that is something that if you say you had a bad knee and you're interested in learning more about that kind of cutting edge treatment of regenerative medicine, it's just something that I would talk about with your rheumatologist because we might want to hold your disease modifying drug so that we can really get the most benefit out of that. So you know we're asking the question about how to address these problems in different ways and coming up with some really interesting and sophisticated approaches compared to even when I was in medical school 20 years ago.
Sue: The innovation and the ongoing research and really the support in these areas of study is so important for the futures of our patients, absolutely, and the futures for ourselves too. Well, we're rounding it out here, Erin and LB, and I'm wondering before we close, I'll just address each of you individually. Erin, do you have any final words of encouragement for our listeners?
Dr. Maslowski: Yeah, I hope so. So you don't have to do all of this in order to feel better. I think I would just pick one thing. Start small, explore it a bit. And just consider it an experiment. And if that one thing that you've tried, that medicine or that exercise didn't work out, well, then you're gonna try something else. There's so many different things to try, So starting small, trying one thing, keeping with what's helping, and then sort of discarding what didn't work for you. And again, being the advocate for yourself is so important. Track, know what's going on with your healthcare. Ask those questions. Because you're ultimately going to have the most investment, the most invested in your own well-being. Nobody else knows what you're going through. So being your own advocate is so important, and that might include asking for support when you need it. Even though it's hard, everyone will have to do that at some point in their life. And then maybe just giving yourself some grace. Like It's hard to live with chronic pain. That might mean that you have to sit this one out occasionally and nobody wants to, but if that means you're going to have a better week overall, that might be worth it. So just giving yourself the permission to do that and I think ultimately will lead to a better outcome for you.
Sue: Thank you, Erin. LB, any final words?
LB: Well, Erin took most of my final words, which is great though, because it's a consistent message. You know, it's that build your tools, build your support system, give yourself grace. You're not weak for having pain. You didn't do this to yourself. What matters is that pain doesn't get to run your entire story. Don't let it define you or be who you are. Take that control and you can overcome. I'm not saying the pain's going to go away 100%, but get the control so you can get back to living your life the way you want to live your life versus pain dictating how you're going to live your life.
Sue: Thank you, LB. I'm just so encouraged by what each of you shared today. There's so many options and so many supports that exist for those individuals with chronic pain, and there's more on the horizon. And I think ultimately the message here is about to think positively and put yourself in that space of I'm going to keep showing up for myself, keep advocating for myself and do what I can. Give myself the grace. Now we've heard it three times, so that's big part of the message. And in the end, it's OK if you do need to reach out for help. It's very likely that there's someone compassionate enough in your own circle of influence, in your own world, that's going to be there for you too. And so I think that's what being human is, is through connection and support we can overcome. We don't have to let obstacles like psoriatic disease limit us.
Sue: Thank you both for such a thoughtful discussion. Pain may be tough to manage, but it's not something we face alone. For more tips, you can explore LB's pain toolkit or request a copy of the Chronic Pain Management Guide by contacting our Patient Navigator Center by e-mail at education@psoriasis.org.
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