my name's Alexis Davis I'm a social media manager here at rsdsa I'm joined by Jim roach Executive Vice President and director of rcsa best of latano and Leanne sanfrini PhD who are tonight's guests so I'm going to introduce both of them to you and then we're going to jump into this engaging Facebook Live tonight so Leanne was raised in Buffalo New York and completed her PhD in medical Clinical Psychology at the University of Alabama at Birmingham following a pre-doctoral internship in postdoctor
al pain psychology fellowship at the University of Florida Health Sciences Center Leanne returned to Birmingham Alabama to work for the Dolex Clinic a privately owned outpatient outpatient pain management clinic Leanne has spoken extensively at National scientific conferences and Regional workshops it's past president of the Southern pain society and has been a lead author on a book and several book chapters about the role of psychology within pain management teams outside of work Leanne enjoys
exploring her new home in Canada nature photography the endless quest for the best pizza in the Lower Mainland and knitting crocheting and of course Dr sancrini has been on one of our Facebook lives before so welcome back we are excited and thankful to have you back and next of course we have uh Beth Sultana a CRPS fighter since 1996. she has dedicated her life to Bringing attention to CRPS she's executive director of fight the flame a non-profit established to raise awareness and educate medica
l professionals and the public about CRPS while providing resources to support the CRPS Community Beth facilitates a monthly CRPS support group and coordinates to aim will fight the flame 5K and 1K family role and stroll she is happily married to her loving supportive husband Steve and together they have raised two fabulous children Alana and Landon she currently resides in Charlotte North Carolina with Steve and their two cats and we may actually see one of the cats tonight hopefully we do um n
ow tonight like I mentioned we're going to have a short presentation and then we will open the floor up to questions so if you have any questions on anything that these two ladies share tonight please put them in the chat um you can also send them to us in a message and I'm also checking the Facebook messages on our page if you don't want to publicly post your question but we are going to make sure that we are discussing everything that you want to hear or everything that you want to know I shou
ld say about managing pain flares all right but before we jump into that Jim do we have any announcements thanks for watching and Leanne and Beth thank you for coming here you're both tremendous supporters of rfcsa and we used to we used to go down Charlotte for the WASP each year and this it's so exciting that you do in the conference again in Charlotte so really excited about that and we're going to have a link I know you have a link we're going to have a link too but two quick things that we'
re doing our fourth annual virtual walk in June we're gonna have a link to John to join us there and if you can't do it in person then do it in your home and it's really a lot of fun and live stream from all across the nation and hopefully the world and secondly we're reflecting stories of our mission from people with crush and we're finding remission as active symptoms and we really want to give hope for a lot of people who aren't there yet and so we're excited about this presentation for the f
ighting players is so difficult at times well again thanks Alexis thanks man thanks Beth yes alrighty well Beth I will let you kick it off um with your presentation right hi everybody we're going to be talking about fighting flares and living through it as I was just introduced I am Beth stolitano and I've been a crpf spider for 27 years fight the flame came about from my family when my son was 12 years old he and some friends wanted to raise awareness for CRPS and fight the flame was born I'm v
ery happy that I have all of my family and friends that are very supportive and they help I have a wonderful support system and that also helps me get through tonight we are all here together because we ourselves are either experiencing pain flares or a loved one of ours is having pain flares having pain chronic pain is nothing short of just Agony nobody would ever wish that upon themselves or another person tonight we're going to be talking about some tips on how to manage your pain there are t
imes throughout your life with CRPS that you will get a pain flare which is an um escalation of pain at some point it is temporary when our pain flares up we know that it will end most people with CRPS will experience this while these pain flares are generally the result of your nervous system becoming either hypersensitive or hyperactive due to illness or the weather barometric pressure uh cold heat depression if you're stressed hypothesis which is sensitivity to noise and sounds they're all di
fferent types of reasons why you can go into flare-up so people with CRPS have all different types of pain and they're unfortunately our owls are always pointing up but when it gets past the certain breakthrough that's when we call it breakthrough pain and all that is where a flare-up starts things that we have to remember about CRPS paint flares is that first of all they are temporary the flares can be random and increased sporadically it could last any amount of time minutes hours days weeks I
hope not but this doesn't mean that your CRPS is getting more worse it doesn't mean that it's spreading a flare-up doesn't mean any more damage we also have to remember that flare-ups are completely normal in the cycle of CRPS this is a pain flare cycle when your pain is at such a high level it's hard to think about anything else but your pain when we're in a pain flare we're in pain our bodies and muscles become tense move it then becomes reduced or agitated depressed or mad and then that can
cause turns it turns into stress and more stress equals more pain and it's a continuous cycle unfortunately it's vicious when our pain becomes fierce our hearts our heart rate begins to increase and the stress hormone cortisol is activated and begins to rage through our bodies this acts alone along with other raging hormones is what worsens CRPS painting learning how to cope and withstand pink flares is a crucial component of your pain management program we need to address these issues before th
ey arrive things that we have to look into are harming your nervous system interrupt thoughts of pain and distraction these things can help counterbalance your pain flares no matter what type of pain flare you are having the most important thing we need to do is calm our nervous system when we're in flare-up it's if our nervous system is a tornado and we need to do whatever we can do to bring that wind speed down that can be done through meditation relaxation positioning and reframing which we'r
e going to talk about meditation for pain relief is that it helps slow our nervous system down meditation can help relax your mind some restore calmness to your body and ease your pain I know some of you are thinking they can't do it it's not they don't want to sit down they don't want to go well that's not meditation meditation the truth of it it is hard it takes practice but it can be done and it can be very helpful the first thing that I would suggest if you've never tried meditation is just
to sit quietly for a minute or two and just concentrate on your breathing that's it just concentrate on breathing every couple days or so add a minute or two after three or four weeks you're gonna find I really hope that meditation can be successful in helping you relax whether you are a beginner or a seasoned veteran know that you need not know this alone there are thousands of CDs and apps and podcasts that do guided medication remember it will take practice I put some of my favorite ones up f
or you to see and one of my favorite podcasts as well but there are tons of them um having someone help you through this process especially in the beginning gives you a place to start and age your mind from as it tries to wander which it will try to I recommend bookmarking these sites so you don't have to frantically look for them when you are in pain relaxation there's a reason we take warm baths and epsom salt the warm baths boosts our blood circulation which helps with our pain and epsom salt
has two main ingredients they has magnesium and sulfate and both of those ingredients have shown to have beneficial effects with patients suffering from neuropathic pain magnesium helps our bodies by supporting our immune system maintaining muscles and bones and nerve functioning and regulates our heart rhythm people with chronic pain have found that magnesium is helpful in relaxing muscles calming their nerve receptors and alleviating pain and inflammation we talked about in the pain cycle tha
t when we're in pain our muscles seem to tense up helping our muscles relax is a very important thing and a very easy exercise to do that is if you start at the bottom of your body your feet and you clench up your feet as tight as you can for five minutes for five seconds and then let go and then move up to your calves tight tight tight tight tight and let that go if you go through each of your muscles you will be helping them calm down a little bit heat therapy can ease muscles and it also help
s reduce swelling using things like heating pads or instant hot hands cozy blankets or fuzzy socks all of that is helpful aromatherapy Studies have shown that aromatherapy can alleviate pain because it soothes your body and your mind aromatherapy activates your smell receptors and causes of the nervous system to respond and release dopamine and serotonin which are you're like you're a happy hormones and this can result of decreasing pain sense like lavender Rosemary peppermint Ginger are all wel
l recommended and you can achieve this as simple as lighting a scented candle when we talk about interruptions of pain we have several ways that we can go about doing this one is through sensory memories changing our scenery reframing and positioning with sensory memory really what we're trying to do is we want to interrupt what's happening now and get thinking of a wonderful place that we can remember so think of a time or place where you felt happy relaxed or secure maybe it's when you were a
child and you were sitting in your Mom's Kitchen a Beach vacation whatever that time is but then really put your mind there and start thinking about what smells were you smelling what were you wearing where were you sitting look at all of the different senses that you have and really try to concentrate on that moment and that will help you to try to interrupt your pain cycle another thing that's really easy to do I call it 555 is go outside or go into a different room and buy five things five it
ems five colors and five different shapes again this is just to get your mind distracted from what's going on right now with your body reframing trying not to catastrophize catastrophizing is believing that it is the worst the situation is the worst it could possibly be saying something like I hurt my back and it will never get better well you don't know that for a fact how about try although my back hurts now um let me track some strategies and see if I can reduce my pain you hear us that peopl
e saying this flare will never ends I will never be able to do or my entire body hurts well think about that does your entire body hurt truly do a quick body scan do your fingernails hurt do your ears hurt do your eyelashes hurt if you can say no to any of these then it's not your whole body and you are catastrophizing we should also try to avoid should statements thinking in terms of how things should must or ought to be saying things like this injury should have never happened well of course i
t shouldn't but you're not gaining anything from that and that's not going to help you saying reframing that and saying I wish this never happened I'm frustrated but I'm ready to start focusing on what I can do now the other thing we try to avoid is emotional reasoning reasoning excuse me believing how you feel reflects reflects how things really are just because you think it does not mean it's a fact your feelings are opinions not facts so just because you feel useless doesn't mean you are usel
ess you can say I can't do everything that I used to be able to do but there are things I'm learning how to do differently that is more of a positive spin on things and that's what reframing really tries to get you to do as far as your position try to change positions as often as you can because we know that staying stagnant only can exacerbate our pain if you can try some gentle stretchings as well when we are in a heightened state of pain it may be hard to think logically it is best to plan ah
ead and establish strategies that will help you persevere when experience a pain flare we want to interrupt your mind from thinking about your pain there are so many methods of accomplishing this Tech using these techniques to distract you will also calming your body and your nervous system remembering these devices while experiencing pain may be difficult which is why every person should have in case of fire rape glass box you're in case of fire break black great glass box is for emergencies on
ly it is to be used when it's just that when your body is on fire when you are in a horrible 10 plus pain flare-up you need to do something immediately even if it's just to lower your pain level down to a nine or an eight just so you can breathe a little bit better and calm down everyone's box will look differently but everybody should have one you need to pack your bags box now before you are in flare if you wait until you're in a pain flare-up to start looking for items to help you it's too la
te you need those items ahead of time so that when you're in a flare-up you can go and choose something to help alleviate something now you are in case of fire break glass box is really just a box of distractions Studies have shown that mental distractions can greatly reduce your pain distractions it's very important you know that do not erase your pain the purpose of distraction is to help with the thoughts of your pain out of focus for a time being we want to break that immediate cycle of over
whelming pain when you want to come start building your box the first thing to do is create a list what kinds of things do you think would go in your box remember no two boxes will look the same everyone's symptoms as do their coping strategies look different what helps one might not help another I like listening to music when I'm in pain to calm down but that may exacerbate someone else's pain you also want to remember to include your activities that we just talked about in calming your nervous
system then choose some items to place in your box to a bag or Corner wherever you decide that can help distract you items that can help redirect your brain to focus on a specific task these are some possibilities bubbles you might not realize the wide bubbles blowing bubbles help slow down your breathing gives you something to do see and feel crafts any project that can keep your hands and mind occupied Studies have actually shown that adult coloring books like mandalas can actually be a thera
peutic help to distract you from your pain reduce anxiety increase your self-esteem and yield a calming sense concentration exercises now this is really to keep your mind from thinking about your pain it's to concentrate on other things any type of task that can occupy your mind you want to really get yourself try counting by fours or sevens or twelves I don't think I would get very far but that's something you would do concentrating something that I actually do do for myself is I play an alphab
et game choose a song Animals boys names food whatever and go through each letter of the alphabet trying to put that letter to it so Ann Barbara Carol again just something that you have to start thinking about puzzles and games help keep your mind engaged and distract from Pain by redirecting your focus doing things like jigsaw puzzles to do go or crossword word finds all of those things take you take your mind thinking things to notice laughter is one of the first things I write there it is ext
remely difficult to cry in pain when you are laughing hysterically well keep that in mind maybe you have a favorite comedy movie or show that you can keep in the back of your head or have a video of do you have a particular stand-up comment that you like well listen to his podcast or try viewing a show on TV inspirational quotes are very important to me I like to read ones about perseverance and strength and if you have personal mantras that are significant to you and your current situation thin
gs like I know this won't last forever or I'm strong enough to combat this flare so petting an animal has been shown to reduce your cortisol level which is your stress hormone which helps reduce tension and improves your mood pets also provide a wonderful loving distraction from Pain and I know some of you are saying but I don't have a pet you can actually do this with just the stuffed animal and you they say that you should get the exact same results secret tricks so everybody has their own lit
tle tricks I will share mine whenever I am starting to get overwhelmed or stressed or I feel my pain level starting to increase I put a Fireball candy in my mouth those hot cinnamon candies I hate them absolutely hate them but when they're in my mouth it kind of shocks my system the only thing I can think about is that hot ball in my mouth I can't even focus on my pain because I'm focused on when is it going to be out when am I going to be done with it everyone has their own I have a friend who
put ice cube in their hands and would close their hand real tight until it was completely melted well as you can guess the only thing you could think about is that freezing cold and you can find you'll find what whatever works for you other things you might want to consider maybe a favorite snack or a drink magazine book TENS unit um maybe some phone numbers of your close friends and family so you could speak to them your medic medication and CBD type oils or lotions a journal can help and a wei
ghted blanket or pillow the weight of a blanket can actually help decrease your cortisol level helping your muscles relax it is a good idea however to let someone else know where your box is in case they should need to get it for you the most important thing when you're in a pain flare is you have to think positively and practice kindness and self-compassion don't beat yourself up you need to allow yourself your body to recover and give your body whatever it needs at that moment focus on the thi
ngs that you can control reassure yourself that flares do not last forever they all have ending points remember we said flare-ups are like tornadoes they're wild tumultuous and wreak havoc but all tornadoes all of them they fade away so will your pain flare you have been in this situation before and you've fought your way through it you won that battle and that day is now in your past you can conquer this now and as well this day will be part of your history because you are a fighter when you re
ach that other side of your flare commend yourself for getting through it and once your flare-up is passed review your plan what things in your box worked what didn't you may need to adjust your box from time to time so we talked about what to do when you have a pain flare let's talk about how to try try to avoid them things that help you reduce your chances for flare-up are managing stress getting support pacing resting and even making some dietary changes I always think it's funny when you go
to the doctor the doctor says reduce your stress or eliminate stress like the stressful there is absolutely no way around it and being a chronic pain patient just adds more we know we cannot erase our stressors but we can start to prepare for them we can recognize and try to understand our stressors and then respond appropriately to lessen their effects on us our bodies and our pain level ask for help speak with a mental health specialist heightened stress levels increase pain so try relaxation
meditation talking whatever it can you whatever you can do to reduce your stress level some other ideas join a support group joining a support group helps you to know that you are not alone you can speak to others that know exactly what you have been through something that's very challenging to do but very important as a pain patient is pacing a lot of people believe that if they're having a good day well let's go out and do as much as we can well if you go to the store and shopping and then the
post office and then wherever else you might suffer for the next couple days because of that we can't just push ourselves on the good days we need to do something on our good days and our bad days keeping a daily or weekly to-do list can Aid you in doing some of this daily pacing break down some of your tasks into chunks looking at your list and seeing that it's time to clean the kitchen may seem very overwhelming especially if you're having a pain day maybe break back down maybe I'll clean the
kitchen today but if that's too overwhelming how about I'll take care of the dishes and clean the counter it could be in your former pre-injury light you were able to clean the house in one day don't expect that to happen now you can still get your house just this clean just do it in smaller steps make sure you pause to rest ask for help what's really awesome very important is that you are honest with yourself and others about your needs and limitations don't stop doing everything there may be
some times where you have to reduce your activity for a few days but just keep moving and plan to gradually increase your previous levels of activity it's helpful to journal if you keep a pain Journal you can recognize the conditions of your day your activity and how it affects your pain level stay hydrated and you might want to try an anti-inflammatory diet anti-inflammatory diets do just that we're trying to calm the inflammation in your body adding things like spinach and kale and broccoli th
ose are all anti-inflammatory foods fruits like blueberries actually all almost all berries cherries the darker the better are great for you nuts and almond I'm sorry walnuts and almonds are perfect anti-inflammatory foods an easy way to start with anti-inflammatory is adding certain spices spices that have the properties of anti-inflammatory markers are garlic turmeric Ginger and cinnamon green tea can also help and olive oil olive oil they say to try to get one tablespoon of olive oil in wheth
er it's through your cooking or salad dressing and that helps a lot and for those of you this might be a treat what a great anti-inflammatory food is dark chocolate just make sure you don't overdo on that one please try if you can to avoid the foods that are inflammatory such as dairy products processed food sugar gluten MSG caffeine I know you're thinking all the good stuff but you will find that it does make a difference I said before about joining a support group I truly believe it's very imp
ortant for anybody in pain and their caregivers to be in a support group you are all welcome to join the fight the flame support group we meet on the second Saturday of every month from one to three Eastern via Zoom however if that does day does not work for you all you need to do is contact rsdsa and they have a list of groups generally most groups are not meeting in person anymore so you could pick your group based on what day if your free Tuesday night will look for a group it could be in Sea
ttle it could be in New York but just get to a group to help upcoming fight the flame events as Jim mentioned next month we are hosting a conference learning to thrive with CRPS we are bringing in seven speakers to help us with some ways and techniques to help us learn with our pain and then in September I'm very happy to say we are having our 10th Annual fight the flame 5K and 1K family rolling stroll I want to thank you for giving me this opportunity to chat with you and I want to wish everybo
dy a low paying day absolutely amazing thank you so much Beth there are so many people in the comments who are loving all of your tips we are getting requests for your slides so thank you for sharing all this with us definitely very helpful I think she won an Oscar Alexis yes well my husband always said I'm a drama queen so but we are not done yet so as I have been putting in the chat and I mentioned earlier we are definitely going to take your questions uh you know about managing pain flares in
the science and psychology behind them so please continue to leave your questions in the chat and we already have a few so we will go ahead and kick it off but like I said leave them in the chat or if you don't want to leave them publicly in the chat send them to us in a message and I can read them that way so I'm going to start with the first question how does someone find a counselor to help them through everything that they're doing with with CRPS um I'll take that one since I'm a counselor
that is comfortable with CRPS yeah this can be challenging now but let me add to this your your it was like you were channeling pain psychologists all across the country with what you shared with us so that information is wonderful backed in science it's something we would promote as clinicians as well so thank you for sharing that in such a lovely way um but you know sometimes we need we go through those rough patches um early in diagnosis uh before we kind of get everything set before we estab
lish our Baseline during flares during stressful times in our lives and so it can be helpful to reach out and have um in addition to your support group and peer support have some professional um counseling as well kind of that objective safe space to share what you're going through and get some get some feedback on that um not gonna lie now I'm in Canada now but both in the U.S and Canada there are just there's a shortage of mental health workers I can imagine many of you who have tried to find
one finds long waiting lists or people aren't taking new clients so it is really a shame and and it at least people um in the dark with that so A couple ways I can suggest if you're looking for somebody you can and I think Beth you mentioned this too that this is something you recommend go on psychology today I think that's the easiest way to figure out who's in your area all right there's a couple methods here so sometimes depending on how insurance covers it if you're in the States you can ask
your insurance provider first give me a list of Who You cover right because you might find this awesome therapist who's on psychology today but it's not covered by your insurance so I would say ask because you they might not cover psychology they might counselor license uh cover licensed clinical social workers or other types of counselors which is awesome find out who they are they are then look them up Sierra Leon Psychology today look at their profile you know and see what they um what they
might be specializing in um there's usually a list on the right hand side of a psychology today profile that will say health issues pain depression anxiety so you can see if that person would match up with your needs I will offer I don't know that you necessarily have to find somebody super trained in CRPS now it might be comforting to have someone who already is understanding of the special issues surrounding the pain condition but a good therapist worth their salt is going to research that the
y're going to learn they're going to listen to you because it's really about your own personal experience with the pain right now they don't have to know everything about it but they will then go do their research that's how I learned for sure I didn't know when I started so um just look for somebody who has some health or pain background um and then in the meantime if there's a list or a waiting list I've become aware of a fairly recent app development like a phone app called curable interestin
g title right thinking about a cure versus management but it is a really lovely chronic pain specific app that is rooted in cognitive behavioral therapy so a lot of the stuff that Beth mentioned that reframing those negative thoughts choosing healthier behaviors using guided meditations that's all in this app that can kind of support you through these modules so there's not exactly that one-to-one personalization but it gets you there it gets you some of that training under the scientific models
that are proven to work with chronic pain and CRPS uh while you're waiting for a a one-to-one therapist so that that's a long-winded answer but I hope I hope that's specific enough to help um some people no that's great I just added the links to curable and psychology today into the chat Beth I also did add the links to your upcoming events in the chat as well we actually already have a question about uh your upcoming conference best someone did ask well the North Carolina conference be availab
le live online or will it be recorded or does the people have to intend in person um well of course we would like people to come in person it is definitely going to be recorded and we just found out that we are going to be able to stream that live stream you'll just have to register to stream it okay and of course we will share more information about that as we get it thank you all right so I'm gonna hop into another question we have a good number of questions going so I'm excited now um someone
asked how do you balance between being realistic and being overly positive um like a little bit more context you know I believe things will continue to be bad and I'll never live a normal life everyone thinks I'll get better um you know there's got to be some common ground there um Beth you want me to start and then I would love to hear your be a positive person and I'm a psychologist but positive psychology and like just do it the power of positive thinking and everything's gonna be perfect it
doesn't always wash so Beth you really alluded to the fact that we have to hold space for the grief and the losses and the mood changes that come along with this as well as holding space for some optimism that this can get better right so I tend to counsel clients to keep almost like two to divide their head into two where we have this you know this is gonna get better it can right the trajectory is often that it can and I'm gonna work hard to get there and I'm gonna learn about this and I'm go
ing to use my skills to manage um and then also keep that realistic space of and this is what I'm dealing with right now it might not be better yet what you mentioned Beth what can I control in the moment right so kind of focusing on that realism of this is rough and this has been a tough journey and I hold space for that grief and that anger and that anxiety but also having the hope that over time and with more knowledge and more support it can get better so there's room to hold both things is
what I would say with that what are your thoughts on that Beth how have you had that Journey um it is said that our video has ended just so you know oh sorry about that I'm still seeing us over on Facebook so I think we're still good okay um well you know being a pain patient for 27 years I will tell you I've had plenty of plenty of times where I just thought my Flair was just going to get me and that would be it um I I had one recently and I was just crying on the couch and I kept trying you kn
ow I in on my phone I was trying to place a Duke go I had a celebrity game show on trying to like laugh at what they were doing and but then I just kept remembering okay I had this before I've had this before this is terrible but I am going to get through this and that's where I came with that Mantra that you know you've been through this before you survived that that day's in your past because I try to tell myself that all the time that I'm a fighter that I'll be able to conquer this even as I
am crying I'm trying to tell myself these things and it does help because I do know that it is going to end when I don't know but I know that there is going to be an end and that's what helps me but generally I try to stay as positive as I possibly can did you ever see those movies where like a future self video tapes a recording for their previous self like or you know something like that where or somebody who you know they sort of give a message to themselves it's almost like we need to do tha
t and that comes with that preparation like you mentioned Beth when we're feeling fairly decent where we're feeling a little confident write your plan down write your encouragement write videotape a little something on your phone like girl you can do this you know whatever it is so that when you're having those tougher times you can look at that sheet or you can play that video like oh that advice is coming from me and giving yourself your own encouragement to stay optimistic I love that idea th
at is a great idea I think we yeah we can all definitely use that alrighty so a couple more questions that we are getting here's one I started occupational therapy but as I'm in an acute phase they said they can't do much how long do these acute phases last can I possibly expect to go back to work I mean I think you're in a cute phase with CRPS that's another question yeah to be honest the honest answer is I don't know and no one can tell you and if someone can tell you that you'll be better in
a year and you'll go back to work they're lying to you I'm sorry but you just have to deal and be mindful of where you are at this moment um I most therapists would want to work with you I should think so you might want to talk to your therapist a little bit more about that and if not possibly seek out some other help um it's rsdsa actually put out a CD a long time ago about four occupational physical therapists because they didn't know much about it to help them Aid people with CRPS they're lea
rning they're learning just like we're learning and the rest of the medical community is learning but as to when you can go back to work yes it is actually possible you can when um yeah I think that's fair bath I mean and that that gives that gives that hope but also again that realism of we're not quite sure as as you know Beth and I'm sure everyone who's been dealing with this that newish diagnosis just can be really overwhelming and and going online and learning about it can really be a lot a
nd there is a variable time to get that Baseline under control to find your right pain management team to find your right Rhythm and energy level and routine and all that it can take a while to get that set um and that might be what that occupational therapist is hoping for waiting for that Baseline right to know then okay how do we test your function if you test and push through too early that can be really rough you just might not be ready yet right but once we find that Baseline then it's a l
ittle easier to test those limits and progress the function back to work I want to I just want to share one little thing a little hope here so the program I work in is about Injured Workers and one of our main goals is to get people back to work clearly as clinicians we want to improve the whole quality of life right Leisure family and work but there is it's funded by a workers compensation system and so there that is a primary goal so we see a good percentage of CRPS clients we see a good perce
ntage of those go back the timeline is variable for sure I want to celebrate a success we had recently we're just about six weeks ago we had a client start CRPS in the foot walking on the side of the foot tentatively could not put the foot down was wearing slide shoes couldn't tolerate the shoe around and when she embraced pretty much everything what Beth was talking about she embraced that idea of acceptance of the symptoms of testing her limits of engaging in meaningful activities rather than
focusing on the pain right setting the small goals trusting that pain does not mean damage right and more pain does not mean more damage she trusted that this is six weeks in she is now wearing clothes shoes well practically a normal gate and she's ready to progress to desensitizing to steel-toed boots to get back to her work in a warehouse shocking now that is that's on the side of the spectrum that's pretty amazing but I will credit her 100 because she embraced all of those things and met the
pain with acceptance and bravery and controlling what she could control rather than saying I'm stuck here I'm victimized so I give her so much credit and I I shared that so that you whoever asked that question can keep that hope right honor the depression honor the grief but do the work focus on what you can control get your team assembled and it's definitely possible to get back to your life yeah or construct a new life right that might look different than the one you had but still is very mean
ingful and full Alexis I'd like to ask a question when people in your support who do they ever go to the emergency department and what advice do you have for them um so we do have that we talk about that a lot and unfortunately you know it's never happened to me but it has happened to people in their support in my group that they'll go to the emergency they're in major flare-up and sometimes they're treated unfortunately like drug Seekers um what I have told people what I've suggested is that if
you are a major flare-up and you do need some medical Intervention when you go to the hospital tell them you need pain intervention not I mean medication I need drugs but that you need some pain intervention some um what's the other term I use there's that brain fog coming but um you want to make sure that they understand I also strongly believe that you have a list for them of what CRPS is whether it's from rsdsa they have a little card The Telltale card or if you have your own or whatever it
is because educating the people in the emergency department is a huge undertaking and unfortunately anytime I've been to the emergency room for a family member or whatnot I ask everyone there it is so rare that I have ever heard of anyone knowing what CRPS not a single ambulance driver I've ever come across knows what it is so having that information for them even if it's just a couple little sentences so they can see what it is and why you're having a flare-up and what you can do um going in an
d saying you know I need medication I need you know to learn that may look more like drug seeking and I know you're not but you just have to try to um put yourself out differently advice I could get for that so someone will follow up to the previous question any recommendations for dealing with work or boss when experiencing pain forever so this is someone who has gone back to work and just trying to you know get through each day how do you work with the boss so that may not understand Leanne do
you want to answer you want me to um why don't you start and then I'll follow up with that yeah so you know first of all we do have a couple good things going for us is that CRPS is recognized by um our federal government or whatever it is a legal um disability if if I hope that makes sense but it is listed as a disability um and we do have you know the Disability Act where people have to be treated fairly and with respect that being said you're right a boss does not have to give you off as man
y days as you may need however if you go in and explain sit down say I need some time with you can you schedule some time again bring some information about CRPS go to RSD you know call ask me we have printed material bring that to your boss and say I just want you to understand what I'm going through I can definitely do this job but please know I might not be able to come in physically if I'm having a huge flare-up but I will make up my work you know assure them that you will get the work done
it just might be on a different timetable or maybe he'll have to work from home that day or take work on half days something to the effect of that and I would hope that a boss who cares about his employer and the players come wants his work done appropriately we'll work with you but I wouldn't just bring it on them and say I'm not feeling well I can't come in today I think I would have a sit down with them explain to them CRPS bring some written material and see if you guys can work out somethin
g yeah I don't have anything to add but I think that's great I mean you're just encouraging like really good communication it's going to depend on your relationship with your boss and how much you want to divulge right but just that assertive um honest communication you're still a hard worker you still want to do a good job that hasn't changed your values haven't changed it's just how you can get that work done we might need a little creativity here you might need a little give and take so you c
an be the best worker for them that you can be so I like that encouragement is really good educate and communicate yeah I would like to mention an organization called job accommodations Network jan.org and they they could talk to you about reasonable accommodations and what are your rights on the Americans with Disabilities really know your rights that's good perfect I think I just found them ask jan.org is that correct Jim um it could be it's jan.org yes all right perfect I'm gonna drop that in
the chat so many different resources and speaking of resources we just had someone asked how do we get the written materials for friends and family to understand what's happening with me we have tons of resources on the rcsa website we can definitely send you specific ones just of course send us an email info RCS rsds.org and of course as you may have heard we have a new website that we are hoping to get launched in the next couple of months and so um I'm very excited about it and we will of co
urse still have great resources there um some more to come with that I just want to make sure that I put that out there before we ended for the evening because we do have a couple of a couple more questions that I want to make sure um this is also why I feel a support group is very important um like I just had last month or two months ago uh a group for caregivers or for family members um it is important they don't understand how could we expect someone to understand if they've never heard of th
is you know they they can't understand how you can walk five feet today and tomorrow you can walk 100 you know 100 I don't know do you know what I'm saying I think it's really important that you have um some sort of meeting for caregivers start a group for caregivers and there are plenty of caregiver groups out there plenty of them um I have a huge list if anyone wants but I think it's really important that caregivers get the support they need as well and a little self plug my last Facebook live
was about caregiver support fabulous one yes thank you yes definitely amazing and of course we do have caregiver resources on the rscsa website as well and those are not going anywhere when we switch over to the new site all right so yeah we do have a couple minutes south actually I think we have two more questions and then um we will end for the evening um here's the here's a good one they're all good but here's a good one what do you do when the pain flare-up is absolutely not going away it's
10 out of 10 for days and you're exhausted from lack of sleep and then they go on you know you end up in the ER they do nothing to help you then what can you refuse to leave the hospital until they help you kind of a double two questions I can't answer that legally I don't know that I mean I know that um with my flare-ups um a lot of times I get migraines and my I had one that just kept going and going and going along with the pain I personally do not go to the hospital because I for me I don't
take pain medication so I don't know what they were going to do for me um for me I really just go through my Inspire list of things to do and I just keep trying and trying and trying because again I know you feel like it's not going to end it has to it will I promise it will like I said it can last for weeks unfortunately um I hope it doesn't but and then I would talk when you feel better I would talk to your pain management doctor and say what are some new things we can try you know if this is
n't working what can I ask can I try nowadays they do have a lot of different treatments not all work for everyone buddy you can look also to Alternative medication too whether it's reflexology or craniosity from massage um and now ldn's really helping a lot of people and there's injections there's so many things that people can try now that I suggest working with your pain management doctor and see if they can help you come up with something else yeah that's I empathize with that because it is
so frightening right because there isn't a crystal ball to say oh just get by three more days and it's going to be okay you just don't know and like you you mentioned like you're getting more and more exhausted from lack of sleep from it and it it just can really spiral so yeah I definitely agree I think the time to go in for emergency care or really worrying that something new is happening is if you're having new symptoms brand new location right that tends to mean maybe something new is going
on we need maybe emergent care if it's a flare of your existing symptoms that's something where I would again I would encourage with Beth go through your your box your in case of you know full air break glassing and then you know when you're done with it go through it again and yes that's frustrating quality of life dips a bit when you're going well not a bit probably a lot when you're going through the flare let the people around you know you're struggling get that extra support um and and be p
atient and compassionate to yourself with it having the fear about it adding on the anger adding on the the the the the the the fear of it it makes it worse right what we resist persists and grow stronger the more we fight it the stronger it can dig in so if you can just say okay here's what I'm in let me strap in this is where we're at right now and you kind of soften around it a little bit it might ease a little quicker all right so our last question there's another question just came in but t
hey kind of align so I'm going to kind of um put them together someone asked have you determine if you need physical therapy and then there's another question that says um my occupational therapist wants me to have a pain level of at least five drawing therapy it makes me feel like I'm failing slash not trying hard enough if I don't want to push myself to be in a lot more pain thoughts on dealing with pain and occupational therapy oh well I will take that one just did first Beth and we both had
that same reaction like what um so like so I work on my team with a physical therapist and occupational therapist so our team is psych PT OT and medical pharmacy um I would say everyone probably could use some physiotherapy at some point um whether it is and there's different types of physio right so it there we tend to think about rehab physio like we're gonna get strength and we're gonna get stamina and we're gonna do weights and we're gonna do cardio and we're gonna get stronger fine for some
but I think the quality physiotherapy for CRPS specifically is more about reconnecting brain and body part right how many of you let's say if you have it in your arm or hand or your leg you want that part away from you we reject the part that doesn't feel good and so good trained pain physios will help you reintegrate that part and let the brain start connecting again so there's techniques like desensitization or something called graded motor imagery where you're in that you're visualizing that
part moving well and moving with success just like an athlete would imagine you know making a basket like thousands of times before they even shoot the basket you are imagining that part moving successfully and in Hell in a healthy way before you even move it so there's some really good physio out there that is specific even for CRPS mirror box therapy a lot of good stuff with that uh and Beth you can follow up with the PT but I do want to mention I think that's a tall order I would like all of
you to right now have a two out of 10 pain go what who who can who can say that that's that is not under our control right so I would ask that OT what they mean by that like you're aiming to push from a three to a five and that and five is okay or are they wanting you to get it down from where you are to a five I'm not quite sure what that is but that's a tall order just to like pick a number and go for it we have some wonderful pts um who have been filmed and if you email the info rsds.org one
was fabulous uh Jonathan bass this whole topic was should PT version and we could send that to you the first time six seconds that's great there's a really good video on graded motor Imaging and mirror box therapy too so we're here to help yeah we definitely have a lot of those great videos like Jim just said on our Facebook page from previous lives and then we also have those videos on our YouTube channel as well so definitely check that out there's a Year's worth of resources there oh yeah bu
t I think we are at time we um have answered the questions that we have in the chat so I just wanted to take a moment to thank our guests thank you Dr cianfrini for coming back and of course thank you Beth um Beth is also um a sponsor of in reform our monthly newsletter for the month of February and for the month of March um so in real form will go out within the next week before the month is over someone did just comment in the chat saying that they love our newsletters and I just definitely wa
nt to make sure to be thanked Beth and fight the flame for sponsoring in reform we definitely appreciate it and of course the information that Beth shared earlier in her presentation about her upcoming events we will also include um in in reform and they've also been put into the chat here on Facebook and I will add them to the comments on YouTube once I get this video uploaded so once again everyone thank you for joining us as always we will have this video pinned to the top of our Facebook tim
eline for easy access until our next Facebook live and like I just mentioned we will also add it to our YouTube channel speaking of our next Facebook live we will have Dr Bethany rains on Tuesday April 4th uh she will join us to discuss the Neuroscience of brain based pain therapies so we are definitely excited to have her for our um early April Facebook live and of course just keep an eye out on our website our social channels and our newsletter for future dates because we already have live sch
eduled all the way through May so once again if you have any questions for us if you need a support group if you are looking for a new physician or if you want to tell your story on the rcsa blog please send us an email at info rsds.org all righty and everyone have a great evening thank you bye
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