Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue (Alan Pocinki MD)

well like Claire I’ve got a lot to cover in a short period of time Sandee asked me to come up with something that would be generally applicable so I’m gonna hit a lot of serve topics and try to stress some basic concepts and not get into a lot of details I’ve added some details and some of the slides that you can look at later but yeah and I’m glad they all haven’t seen how many of you have not heard me speak before I’m gonna review a bunch of a bunch of things in a short period of time and you know no financial conflicts of interest I certainly am gonna discuss off-label uses of a lot of medications but just briefly so Claire presented one construct one model for how pieces fit together and you could do this in many different ways I think for most people pain is probably the primary driver behind depression fatigue and poor sleep but the what I’m trying to get across in this slide is the idea that all these things are interrelated that if you’re depressed you’re gonna be much sensitive to pain your sleep is gonna be bad fatigue is gonna be bad as long as you’re in pain it’s gonna be hard to get your depression under control it’s gonna be hard to get a little sleep and your fatigue is never improved so how do you break this cycle well I rarely include references in my slides because a lot of what I say up until recently has not been supported by any medical literature so I’d echo what McLaren said it’s nice to start finding some things this I just came across literally in a plane yesterday reviewing some abstracts from last year’s mild pain conferences a big international conference on on pain management and dr. Meece was the coordinator of the whole program and he got up to make the introductory remarks and said every patient of chronic widespread pain requires evaluation of their sleep since poor sleep and depression ER and penalty associated pain and this is this is just huge because pain specialists don’t know anything about sleep so for a pain specialist to get up at a pain conference and say pain patients need to have their sleep looked into it’s pretty groundbreaking so how do you break the cycle the basic basic approach is you have to address everything together but if you say okay you know as a set as long as you’re in pain your sleep your depression your fatigue are not gonna get completely better as long as your depressed pain sleeping fatigue will not improve much but the big the big hurdle here the big obstacle is there is no magic formula for how you know there’s no magic pill that’s gonna work for everybody and that’s because everybody’s different way to go around the room and as you’ve seen in some of the surveys that Claire presented that 60% of people will have this and 47% people have that no two patients are going to be the same in terms of their symptoms and then there’s also tremendous variability in how people respond to their symptoms two patients with identical medical problems could have different sensations different reactions to them depending on their life situation and their support systems and whether they tend to be a generally optimistic or pessimistic person whole bunch of other factors and then there are physiologic factors a big one is you know how healthy were you before things started to fall apart do you have other medical conditions unrelated to a loss and loss that are going to complicate matters and then I’d like to put in a plug for the gentle axe people because pharmacogenetics is really a big factor individuals respond very differently to medications and understanding what their BBQ many backgrounds take some takes a significant amount of trial and error and the guesswork out of coming up with medications so obvious stating the obvious here every patient where is a comprehensive treatment program that’s also going to be individualized so their particular setting in the situation so how do we go about addressing pain fatigue depression poor sleep well and again Claire alluded to this one study on pain the different types of pain and so figuring out what kind of pain somebody has it’s pretty pretty essential to deciding what’s gonna be the optimal treatment for them so muscle and joint pain tends to be primarily mechanical in this condition but there are inflammatory components that are some there epatha components visceral pain means pain typically in these in Alex Denis is gonna be abdominal pain coming from the internal organs and that can have inflammatory mechanical and neuropathic and even occasionally ischemic scream it being lack of blood flow causing pain and then I think we’re gonna hear a lecture and I could easily talk for an hour on headache about fifteen fifteen or sixteen different types of headache that patients with a left at how much they’re pretty exposed to and so it’s certainly not a question of oh you have headaches here take this pill or dare do this and a lot of patients and doctors themselves are discouraged they’ll treat somebody’s headache and maybe the headaches get 60% better that’s because you’ve only treated one type of headache and there are still other types of headaches that persist so the biggest issue in approaching pain is don’t underestimate it and this is a major problem for patients it’s actually a major problem for parents does that say unfortunately for physicians – it’s hard especially for young people to recognize how much pain they’re in and we have this unfortunate system of asking patients to rate their pain on a scale of one to ten and if you wait in pain for much of your life you don’t know what zero feels like and so it’s really hard to tell where you are and conversely there are lots of patients who recognize their name but say things like oh it’s not that bad I’m used to it I’ve learned to live with it I don’t really want to be taking lots of pain medication it’s not helpful living in pain is perpetuating the vicious cycle of poor sleep fatigue and oppression how do we address depression well again depression is different things for different people I find in sort of a this construct to be useful it sort of pharmacologic approach when you get to the point that that depression is bad enough and a big enough factor in pain and sleep and fatigue to warrant medication for it and this is not this is not you know a hundred percent scientifically and pathophysiological accurate but but this is a construct that I modified from a pamphlet many years ago that that patients have found very helpful in understanding why for example a particular medication might relieve some of their symptoms of depression but not all of them and so you’ll see that a lot of a lot of physicians reached first for serotonin drugs and treating depression and serotonin drugs are great for anxiety and worry and obsessive-compulsive tendencies and things like that but they really don’t do much for things like pain and fatigue and cognitive impairment and motivation which tend to be pretty widespread features of depression in patients with ehlers-danlos syndrome so depression like pain tends to be something that patients underestimate they’ll say well of course I’m depressed wouldn’t you be depressed I’ve got you know my quality of life is terrible and I’m in pain I can’t do the things that my friends do and it’s it’s Dharma’s understandable for me to press there me too depressed that’s very true but that doesn’t mean that it is an oddity of being addressed in some way so again like pain saying that we asked for some to us but I’m used to being too positive it’s not that bad and I can I can deal with it I don’t need to take medication I don’t need counseling I can just you know suck it up and deal with it it’s not a helpful approach to getting better a couple of their points that that just to sort of highlight you don’t have to be sad to be depressed again to go back to that Venn diagram you can have problems with fatigue and poor concentration and lack of motivation and not be crying it’s out all the time and still be depressed and similarly the concept that deficiencies of these various neurotransmitters shown in the diagram can be significant even the absence of what are generally considered the diagnostic features of clinical depression so sleep again very much like pain and and depression requires different types of approaches for different types of sleep problems and so some people will have the primarily trouble getting to sleep well there’s a lot of trouble staying asleep others will get to sleep okay but wake up and can’t get back to sleep and there are many factors that that affect us and just pain is a big one anxiety worry are big ones environmental factors can’t be overlooked a lot of people have you know find that they get a new mattress and on the whole they’re paying their sleep become significantly better so again you’re seeing the theme here don’t underestimate how bad your pain is don’t underestimate how depressed you are don’t underestimate how bad your sleep is i I hear over and over ask people how they are they’re sleeping and they say well I’m sleeping fine or they say well I don’t really sleep that well but I never have and I’m used to it and that said just never been a good sleeper again you can’t really expect your fatigue and even your pain and your depression to get better if you’re not getting a list of my sleep the big problem with sleep is that a lot of people don’t sleep well and aren’t aware of how badly they’re sleeping you know come back to that and that’s a concept that we don’t sleep misperception so very often I hear from people I’m a great sleeper I can sleep anytime anywhere I can sleep 10 12 14 hours I’ve always been a good sleeper and when I say to them you know I think that means you’re not a good sleeper there really have trouble wrapping they’re getting their hands around that concept I say you know if you if you sleep nine hours and you wake up tired some things along with your plate and they said well no that’s mine I say that’s like fine well but you just said you slept eight or nine hours and you wake up tired or you’ll sleep eight hours and then a couple hours later you’ll I don’t have a nap that’s that and I hesitate to use the n-word and try to tell people that’s not normal because normal is so different for different people but trying to explain to ask patients you know do you feel rested you get up in the morning and I’ll come back to that I think in the next slide but this idea of sleep misperception is actually it’s not unique damos and the concept of Arnon refer to sleep there are studies showing this many as 90% of patients sleep apnea aren’t aware that they have it because they’re asleep and a lot of patients with periodic limb movements can be moving around interesting all night and not be aware of it and the most common features of non restorative of poor quality sleep interest and most tend to be a lack of deep sleep and frequent disruptions to the continuity of sleep that we call arousal and the only real symptoms of those are feeling tired when you get up in the morning it’s not anything else you’re gonna be aware of and I’ll show you an illustration of that so because of this sleep studies really are helpful you really just don’t know what’s going on while you’re asleep without having the problem is that most sleep specialists are not training to recognize the type of sleep disorder that we see most often in our journalist patients and so I’ve seen a lot of patients who come in with the part of the normal sleep study but they’re clearly and on normal home sleep monitoring it’s really helpful because it’s often gonna be difficult to sleep in a sleep lab unfortunately the best of the home sleep monitors company of a bankrupt at about a year ago so there we’re limited in what’s available now one of the probably the most helpful thing we have right now or so though the movement based monitors the fitbit’s and jaw bones and basis and things like that that can’t that can tell you a little bit about when you’re sleeping when you’re a week and but not all the sleep stage information we like to have so here’s what I need my cursor on this line I’m a little tiny red down here okay well look our dear that’s loud so as I mentioned the most common sleep disorder we see in Afghan lessons is characterized by frequent arousal which are these disruptions to the continuity of sleep and awakenings so in the sleep lab we define an awakening as a disruption to the continuity of your sleep that lasts more than 30 seconds turns out that most people need to be awake for at least two minutes to remember having been wait and then if your sleep is disrupted for less than 30 seconds we call that an arousal so in this this first horizontal bar these are what we call hypno graham showing sleep stages through the course of the night you’ll see that this patient starts off and green which is shallow sleep and then there’s a big chunk of blue which is deep sleep and then shallow and the reddish brown is REM and that then their patient cycles through most the shallow sleep and REM for the rest of the night with most the deep sleep being early at night the lower bar is a fairly typical sleep study for a patient with ehlers-danlos who slept for seven hours and thought she slept pretty well and woke up feeling like she hadn’t slept and you’ll see right away by looking at this that there’s no red and no blue that she had no deep sleep and essentially no REM there’s nothing that looks like a normal cycle what you can’t see here is that she remembered waking up twice and she actually woke up 23 times and in addition to the 23 awakenings she had a hundred and twenty-five arousal so the continent of her sleep with broke in a hundred and fifty times over seven hours and she was only aware of two of them so that’s why you really need a sleep study to find this I always add this slide because the unfortunate footnote to the previous slide is that the second sleep study with 150 arousals was read as normal by avoid sir sleep doctor so although the doctor here is telling the patient that his MRI shows his head his riddle of conventional wisdom it shouldn’t fact be the patient who’s telling the doctor that his head is riddled with conventional wisdom and then fatigue like paying an aggression and sleep different types of fatigue different causes of fatigue need to be addressed differently clearly much of the fatigue in our demos comes from poor sleep on pain depression and autonomic dysfunction but that doesn’t mean these are the only causes of fatigue and this Claire alluded to as many contributing factors that you can identify and address do something about are going to help even if they’re only small pieces of the puzzle so I don’t have time and past years I’ve spent an hour just discussing autonomic dysfunction so I don’t have time to go into that but since so many of you have never heard me speak and this is I don’t think anybody here I think there’s a talk in pots but but I don’t know the function affects so many other things so just very very very basic two minutes I’m not another area system basically for those of you and this is a new concept the autonomic nervous system regulates everything in your body that goes on automatically so blood pressure of circulation breathing digestion everything that’s happening all the time you don’t have to consciously think about and it’s a pretty simple system the sympathetic side generally speeds things up and can be thought of as the accelerator and that’s your fight-or-flight response and the parasympathetic system is the vessel and digest then it can be thought of as the brain sympathetic hyperactivity or the tendency to make too much adrenaline in response to minor stresses can I think you can imagine make pain sensitivity worse can make sleep problems worse and the times can mimic anxiety panic and even hypomania and that’s something I spoke for almost an hour about last year and if your parasympathetic nervous system is overactive which is as Claire mentioned is less common that can aggravate fatigue and just a general sense of mell s so so in addition to the big three of pain sleep and depression anemia is a fairly common problem we always look for low thyroid other sort of common routine medical problems need to be looking for micronutrient deficiencies are very common in others demos but two big ones are probably vitamin D and b12 deficiency remarkably common in the population in general but seemingly more prevalent in those patients that was well magnesium deficiencies also very common the general population the problem with magnesium deficiency is that standard blood tests for magnesium is not going to tell you where your magnesium levels are because only about 1% of your total body than users in your bloodstream so for a lot of different symptoms will apparently get people magnesium there it relieves fatigue and muscle cramps that can help digestion so don’t overlook simple things hormone deficiencies is something I think we’re just starting to look at and find frankly both both we’re having trouble finding and the chronologist who are interested in helping us try to sort out these parts of the puzzle in the past here I’ve looked at I’ve been struck by the prevalence of low levels of DHEA and testosterone especially in young women I started looking because I was saying young women who were feeling better sleeping better having more energy exercising regularly and despite regular exercise were not building any muscle tone we’re not building the strength of the muscle tone that they needed to help stabilize their loose joints and it was clear that something was missing an extremely high percentage of these people turned out to have a normal classroom level in women is about 15 to 75 I probably found about 80% of young women were in the single digits levels of 4 & 6 some fluid imbalance is another thing we talk about any of you have had problems with orthostatic intolerance or pots or just lightheaded have probably been told to to increase your salt intake and and for 20-plus years we tell people you know eat marsala drink my water and this was very surprising to me in the past year when I went to look at salt fluid balance to see whether my patients were were doing this appropriate on their own and I was struck by the fact that or not and I’ll show you those data in a second and then I just added mitochondrial disorders which are not common but you’re really getting to the bottom of the barrel and nobody can understand the basis of your symptoms you might read about my upon dual disorders so again for over 1/2 finding somebody with more expertise to help me understand this I readily admit I don’t know a lot about Sydney physiology and things like that but I thought well ok I can at least look at the concentration of the blood and the concentration of the urine to get some idea of what’s going on with somebody saw fluid balance and what I found is that the total concentration of everything in the blood should be between 280 and 300 and over and over again I was seeing numbers right at c8 281 to 7 million 277 and these were patients who’ve been told eat lots of salt and yet still their blood concentrations were low and if I looked at their urine to see okay is this a problem with the kidneys are the kidneys dumping salt and fluid the patients eating plenty of salt but the kidneys for some reason aren’t holding on to it turns out that was not the fact that the kidneys are trying to hold on to solve and get rid of clean water to try and get the concentration of the blood up so the bottom line is that eighty and ninety percent of people that I’ve been seeing that have been hold eat lots of salt and drink plenty of water they’re getting way too much water and not nearly enough salt so so the best solution no pun intended are the electrolyte drinks basically when you drink plain water you’re diluting out your blood and then your kidneys have to work hard to hold on to salt and get rid of the water you just drank to try to keep your blood concentration um so replacing plain water electrolyte solution is an easy way to go limiting the amount of plain water you drink is helpful forget the conventional wisdom that salt is bad for you and and more striking than almost anything I think additionally has been the number of times that I’ve asked people you know to estimate how much water they drink in a typical day and they’d say well I don’t I don’t really know that’s it well okay you know do you drink water and these this they say yeah I probably drink ten or twelve of these in a day like you’re drinking five or six liters of water a day there’s no way you can get enough salt to keep up with that so again looking at non pharmacologic stuff as much as possible trying to improve self fluid balance this made a big difference in a lot of patients yeah there are a few yeah yes the question is can you get electrolyte replacement without the sugar yeah there are a few such products one of them I recommend it’s called neuen and you you in put your little tablets and you drop one tablet into your standard water bottle and that instant electrolyte solution so there show me convenient somebody who’s thinking me about I’m sorry in as a nail CN you you in and they come in different flavors and somebody recently told me about Powerade zero which is a which is a sugar-free electrolytes openin again I’m just sort of true starting to learn about these things but but I have been struck you want to look at the sodium concentration that a lot of a lot of the sports drinks will have sodium concentration so between 150 to 300 milligrams of sodium per liter the new and it’s about 720 so it’s again the bottom lines most people heard tilted heel I saw him during a lot of water not getting nearly enough salt SKR a TCH right and there’s something called Eli T – o ite selectra lights make some electrolyte replacement concentrate as a liquid concentrates that then you dilute in water so there are options out there I’m sorry this question about daily IV saline infusions well what I found is that most people even patients if at one point we’re getting IV saline most people don’t need it most people can regulate their salt fluid balance orally the problem with a lot of people are meeting IV saline is that they were drinking too much water and you need salt to hold on to water and try and explain to people that you’re chronically dehydrated because you’re drinking too much water it’s not an easy thing to do but if you think that you need salt the hold onto fluid and you think about this concept that drinking water dilutes out your blood and then you have to get rid of the water in order to keep your but that that thinking clean water often can make your problem worse so how did we break the cycle well clearly we need to go and identify as many cert treatable and correctable factors as we can and put together a comprehensive treatment program so here’s where I’m gonna I’m going to skip a lot of specifics I think the one thing I’m a stress on this slide is is to have some realistic goals that that pain relief you know reducing your overall pain levels by 50% is a realistic goal you get taking somebody who says their pain is a six to an eight down to one or two may not be a realistic goal and remember this is both a challenge and a help in some ways that I often tell people my job would be a lot easier if all the parts weren’t connected but one treatment can also can often make something else worse or make something else better or one medication may counteract the effects of another so ideally we try to use that to our benefit and use a medication that might for example help both pain and sleep so this is another construct this is another way of looking at this vicious that a lot of my patients find very helpful and that is to say okay you know what do I have to do to get better and fun if you look at fatigue as the central problem and with depression and pain and poor sleep operating fatigue what I suggest to people is think about having your own fuel tank your own energy supply and then basically sleep is your office your only is your best chance to put gas in the tank I’m sorry scratch SKR a TCH not so dope but if you think about having your own energy supply and that sleep is your is it really your only good chance of putting gas in the tank and then stress is like pain suck up energy if they’re chronically dehydrated that’s depleting energy if you’re tired but you’re constantly trying to plow through the fatigue that’s that’s using up energy any sort of emotional stress or depression we use up energy any other metabolic factors to food deficiencies in vitamins things like that all of those are using up energy and then if you’re also trying is there energy to deal with household responsibilities or school or work all of those things are drawing from your energy supply and so then it becomes very easy I think for my patients look at this and recognize that on most days they’re using up more energy during the day than they put in the tank the night before and this is really how the vicious cycle spiraled out of control and so then the answer to how do I get better is to try and undo this get a better more restful night’s sleep reduce your pain rest when you’re tired don’t plow through the fatigue make sure you’re not dehydrated that you’re regulating yourself fluid balance recognize the other stresses that using up energy try to minimize them as best you can so and I will like to stress that putting together a treatment program is not all about medication that basic things like resting when you’re tired and not forcing yourself to keep going anyway are important measures and that there are lots of nonpharmacologic approaches for the treatment of pain depression sleep and fatigue I’ll just go through those very briefly clearly exercise in physical therapy are helpful long-term if you’re getting the appropriate physical therapy of course massage can be tricky if it’s either too aggressive it could be painful if it’s too relaxing it confer to destabilize your joints some people find things like acupuncture and dry needling also helpful pain medications again I’m not going to go through this list it’s actually despite the busy slide it’s a very short list when you’re dealing with pain you’ll find you can look down the list pretty quickly trying things they don’t help whether you have side effects from them enough to move on to something else similarly there’s a lot of non pharmacologic measures to deal with depression anxiety and stress so just general just general I found that the idea of empowerment the idea of having a treatment program of saying okay here’s what do I need to do to get better this is what I need to do helps people have a little more positive outlook that’s that’s very important their recovery trying to reduce stress recognizing that that various stresses whether they’re emotional or physical stresses are sucking up the energy that you’re trying to conserve relaxation techniques are very helpful especially in the city of autonomic problems where your body is tending to overreact to stress if you could tone that down do things like deep breathing or meditation a lot of people find that’s not helpful there are then other interventions where you need a specialist to help you with things like neurofeedback and mindfulness based stress reduction and and more conventional counseling and psychotherapy and then I come back to this just in terms of choosing medications then if you look at what your primary symptoms of depression are that’s helpful in saying okay well different medications work through different pathways so as I mentioned the serotonin drugs will help mostly with things like anxiety and worry and obsessions the serotonin norepinephrine drugs can help both the and pain and fatigue wellbutrin helps a lot with can help with energy and motivation Remeron us an interesting drug that can help with sleep and appetite as well as movie and then occasionally a lot of medication a lot of patients will take it in any precedent Phil still somewhat but not completely better and adding the so called augmenting or secondary agent can help boost mood and energy and sense of well-being I added here specifically that benzodiazepines like diamonds an accent out of it and klonopin but not medications for depression I see them prescribed a lot and these are Downers they make depression worse well I see clonazepam klompen in particularly when I see people in klonopin I will say to them you’re complaining about cognitive problems and fatigue and depression why are you taking a medication that causes all three of those things and of course there’s a lot of non pharmacologic measures to improve your sleep basic sleep hygiene comfortable mattress making in room dark and quiet and a comfortable temperature are really important because your body has trouble both autonomics regulating things your body’s gonna over respond to small noises it’s gonna over respond to light and then look for sleep apnea and treat it as significant but be wary that a lot of sleep doctors will find very mild sleep apnea on a sleep study and because they don’t have a better explanation for what’s wrong with your sleep they’ll recommend that you get treated for sleep apnea medications for poor sleep this is again I think I gave an hour lecture yes it’s very much trial and error and most patients are going to need a combination of medicines with complementary effects people do tend one thing I’ll point out here is that a lot of people do not think about taking pain medication at bedtime they’re just not aware of the fact that they’re in pain overnight and how much pain maybe disrupt your sleep and finding the right combination can be a frustrating trial and error process frustrating for the doctor well as the patient but when you do find a combination and gets you arrested nicely that really gets the whole ball rolling it gets the whole vicious cycle going back the other way so again I don’t have time to go through all these and various different medications we use to help improve the quality of sleep in various different ways and addressing different problems that people have with their sleep and then measures overall to reduce fatigue the biggest one seems obvious I’m gonna keep coming back to that get adequate rest that there’s so many of us who are so busy and try to pretend we’re not sick and plow through the day and keep doing all the things we have to do really even just taking short breaks even if you just take a five-minute timeout put your feet up close your eyes let the mother cool off for a minute you won’t be quite as wiped out at the end of the day and exercise however limited is gonna be important saw several people yesterday and the many consultations we did the way they’re too exhausted and too much pain to exercise and almost everybody you know in those situations can at the very least start by lying flat on their back closing your eyes and moving their arms and legs around a little bit just without having to worry about about gravity and without aggravating pain stimulants can be helpful they’re sort of a double-edged sword you really have to be careful not you’re not taking stimulants to help you plow through the fatigue if you’re exhausted from pain and poor sleep you need to deal with those things and not just take stimulants because cenotes can just aggravate your autonomic dysfunction you could just make the whole buzz along and you’re stimulating soon little orders off the crash and that’s just aggravating the whole vicious cycle that we’re trying to correct but in the same token judicious use of stimulants early in the day can help reset your circadian rhythms if there’s somebody who you know can’t get up early and it takes hours and hours to get functional then you’re gonna have to learn it at a reasonable hour but if you can get up and take something and be a little more active early in the day that can often help with your sleep and your and your circadian clock 13 supplements can help with fatigue especially b12 and then treatments to improve your circulation in your autonomic function we talked a lot about adequate salt and fluid both some patients will need medications as well so how do we how do we break this nasty vicious cycle we look at each one of the contributing factors and we try to identify the ones that we can do something about and put them together into an overall comprehensive treatment program yes the questions about about circadian rhythm dysfunction are jealous yes it’s very prevalent for people have circadian rhythm disorders the most common pattern probably our patients who dragged through most of the day and then either get a little energy in the morning that that’s phased by late afternoon early evening and then get a second wind say 9 or 10 o’clock at night and we’ll say you know midnight is the most weight I am all day so there’s no way I can go to sleep then that’s very common for some people unfortunately that’s their first wind a drag through the whole day and they’re not awake till 10 o’clock at night so that type of circadian dysfunction is very prevalent you know I’ve Dennis and I don’t know enough about it to to to guess what the underlying pathophysiology sir I’m not sure I got the whole question with medications that help reset there’s getting rhythms help with other symptoms yes yeah we often will we often will try to he’ll try to do that yeah I think I think I need to hold questions further out and to make sure I can get through my talk here so get through here so we get back to this slide and and the overall going through piece by piece what can we do to to relieve pain as much as possible how can we optimize sleep quality how can we minimize dehydration with these other stresses to conserve energy because as you replenish your energy pool you’ll get the vicious cycle going back the other way with less pain and a more restful night’s sleep you’ll have more energy you’ll do more the more you do the better your sleep the more you do the better you feel it gets better your energy level improves and as your depression gets better than pain and sleep and fatigue will get better as your sleep gets better than fatigue and depression and pain or reduced as your fatigue improves then you feel better and you do more and conversely you sleep better the mood improves and this whole vicious cycle is reversed and that’s how you get better so thank you very much for your attention sorry I just lost my acknowledgement slide I did one Hey thank you the nfn Sandi for obviously inviting me in for all their hard work and spreading knowledge and awareness and my colleagues especially clarify kimono and Fraser Henderson who taught me most of what I you know about you know if demos and my friends Peter Rowe and David Goldstein who encouraged me many years ago when other people thought I was nuts it explain some of these phenomena and of course I thank my patients for having the confidence in me to basically let me experiment on them and say you know this is what I think is going on and I think this medication might help you are you willing to try it and this is how I’ve learned what works and what doesn’t and reinforced my understanding of the the physiology of this illness thank you

18 comments

  1. I am glad that these videos are available this year. I wasnt able to attend this year's conference, I am hoping to be there next year!

  2. Thank you so much for posting this!  I am to sick to travel.  This will help me and so many!  Thank you thank you thank you!

  3. #EDSAwareness Sleep disturbances are common in EDS. According to Alan Pocinki, "The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night." There are other problems, too. Apnea occurs for two reasons—one type is obstructive, which people with EDS are particularly prone to, as the connective tissue mutation means our tissue is "floppier" than usual, leading to more easily caused obstruction when the tissue doesn't hold its shape well. Central apnea also happens in some with EDS, possibly because of those interface issues surrounding the area where the skull meets the spine which affect cerebrospinal fluid flow, the cerebellum, and autonomic function. There's a little information on fibromylagia and sleep included, because there's some thought that at least some FM is undiagnosed hypermobility EDS, and almost any of us with hypermobility EDS either do or could carry a FM diagnosis.

    From Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction":

    "Non-restorative sleep in EDS: frequent arousals and awakenings, little or no deep sleep.

    "Don’t overlook the basics:
    • Good sleep hygiene
    • Comfortable mattress
    • Dark and quiet
    • Elevate head of bed (if lightheaded during the day)
    • Treat sleep apnea, limb movements only if significant

    "Complex medication “regimen” is often required:
    • Multiple medications with complementary effects, e.g. one medication for pain, one to reduce arousals, one to increase deep sleep
    • Finding the right combination can be a frustrating trial and error process
    • Home sleep monitor may be helpful

    "The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night. Medications to suppress, offset, or block this excess activity are effective in improving sleep, measured both by polysomnography and symptoms. Improving sleep and minimizing daytime stresses helps to replenish autonomic reserves, which in turn improves daytime autonomic balance and also helps improve sleep, which in turn improves daytime function, which in turn improves circadian rhythms and sleep, which is how you get better."

    Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction" and "Pseudo-Psychiatric Symptoms in Ehlers-Danlos Syndrome", at http://www.ednf.org/2013-annual-conference; "Hypermobility Handout" and "Sleep DIsorders in EDS" http://www.ednf.org/2012-annual-conference; Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue, his general session from EDNF's 2014 Learning Conference, https://youtu.be/9TxKDVkaDFM

    Susan Cordes, MS CGC, "Sleep, Pain and Fatigue in EDS" http://www.ednf.org/2012-annual-conference

    Evaluation for sleep apnea in patients with Ehlers-Danlos syndrome and Marfan: a questionnaire study.
    http://www.ncbi.nlm.nih.gov/pubmed/11903337

    Study of Sleep Disturbance in Ehlers-Danlos
    http://jointpainrelief.com.au/study-of-sleep-disturbance-in-ehlers-danlos/

    Patients With Fibromyalgia 11 Times More Likely to Have Restless Legs Syndrome http://www.medscape.com/viewarticle/730935

    Objective Measures of Disordered Sleep in Fibromyalgia
    http://www.ednf.org/images/stories/pdfs_medical/2009_10/2009_chervin_jrheum_sleep.pdf

    Sleep-Disordered Breathing: Autonomic Mechanisms and Arrhythmias
    http://www.ednf.org/images/stories/pdfs_medical/2009_09/2009_Leung_ProgCardioDis_sleep.pdf

    Sleep continuity and architecture: Associations with pain-inhibitory processes in patients with temporomandibular joint disorder
    http://www.ednf.org/images/stories/pdfs_medical/2009_edwards_ejpain.pdf

  4. EDS patients also produce adrenaline in their sleep, which is another cause of sleep disturbances. Also not that I keep getting an error when I attempt to watch this video).

  5. Us EDS people are easily distracted with beeps…feel overwhelmed by external stimuli in the environment because their is so much chaos in our bodies, I think….

  6. Our lives with EDS are filled with many levels of difficulty. The amazing thing is we're able to maintain our sanity when we're being assaulted by our own bodies!

    And, of course, disbelieved by those who refuse to understand us.

    Our observers have no clue what we're enduring. This doctor's work is impressive and important. My hat's off to him. May his insights be widely shared with and understood by the professionals in medicine and law with whom we must contend.

  7. Is it possible to get proper captions for this? Very difficult to listen to the audio between the beeps and the echoing quality of the audio capture.

  8. Have you seen the Oura ring? Bateman Horne Centre mentioned they are using it… the latest one looks interesting. Not check but looks good data and at home hypnogram data …. just a matter of MEcfs and EDS patients going to have to figure out our graphs AND what we actually DO about them.

  9. Real short Answer, to really big Problems…. Give us Ethical Pain Care with PROPER LEVELS of Morphine Titration Therapy that Allow us increased physical activity and instructed physical therapy, Believe us/ Validate us/ refuse to give up on us… AND WATCH US SOAR!! 🦅
    From my experience most of my problems have been Doctors denying me needed medicine, being 'afraid of' my illness(s) and level of intractable pain with EDS, being negligible with denying pain care that worked very well and saved my complete health, mental health and sleep hygiene. Intractable Pain/ centralized pain is the 'Great Complicator' in many chronic diseases, untill it is treated doctors will not see palliative care patients improve in many of there other symptom manifestations for it's the common denominator. Please treat your Patients well and ethically by treating well..

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