I wish to mitigate actual physical pain when exercise causes 'good' pain
April 22, 2020 7:07 PM Subscribe
I wish to mitigate actual extreme physical pain when exercise causes pain. CW: suicidal ideation.
I have been chronically disabled for ~15 years with what my doctors are calling pseudo fibromyalgia and pseudo chronic fatigue, stemming from a back injury in the Army. 'Pseudo' because I don't meet the exact diagnostic criteria for either, but have essentially all the symptoms and drawbacks of both. I consciously and actively do NOT think of methods of suicide, but with stress or inattention or not being under control enough, my automatic thoughts are "I want to vomit and die": you always feel great after vomiting, and then I'd be dead and not have to worry anymore.
Because of the pandemic, the several procedure type treatments that were on the docket have been delayed indefinitely, like spinal nerve blocks and transcranial magnetic stimulation. I have one medication, duloxetine, for mood and nerve pain, that is the only thing that keeps me from being a crying wreck every day. Nothing else legal works: NMDA antagonist dissociatives were working, making me as functional as a dissociative can make one functional, but I've been hitting what seems to be an inevitable tolerance wall that, uniquely to NMDAs, may never alleviate or go away. Benzos get me to sleep, but do not improve my restfulness. Without them, I wake up exhausted, get progressively more exhausted throughout the day, and go to bed exhausted and unable to sleep. With them, I can at least sleep. I am (I forget which) either intolerant to or have a pseudo allergy to opiates; they either don't work at all, give me bizarre side effects, or both, so they are not an option.
While I'm aware of the flawed PACE study, I see my only real options for improvement at the moment are some kind of stretching/yoga/muscle training regimen. This takes my already extreme pain and bumps it up to 11. If there were some way of mitigating the extra exercise pain (which I usually enjoy) I could do more of it, and hopefully improve something.
I don't know what else to do. We've tried every conventional pain and psychiatric medication, I've tried many illicit substances, and nothing works. I am not in any kind of imminent intentional suicide risk, but I am just waiting for something to come out of the blue and kill me so I can be dead and over with it. I don't know what to do, and death is better than this.
I have been chronically disabled for ~15 years with what my doctors are calling pseudo fibromyalgia and pseudo chronic fatigue, stemming from a back injury in the Army. 'Pseudo' because I don't meet the exact diagnostic criteria for either, but have essentially all the symptoms and drawbacks of both. I consciously and actively do NOT think of methods of suicide, but with stress or inattention or not being under control enough, my automatic thoughts are "I want to vomit and die": you always feel great after vomiting, and then I'd be dead and not have to worry anymore.
Because of the pandemic, the several procedure type treatments that were on the docket have been delayed indefinitely, like spinal nerve blocks and transcranial magnetic stimulation. I have one medication, duloxetine, for mood and nerve pain, that is the only thing that keeps me from being a crying wreck every day. Nothing else legal works: NMDA antagonist dissociatives were working, making me as functional as a dissociative can make one functional, but I've been hitting what seems to be an inevitable tolerance wall that, uniquely to NMDAs, may never alleviate or go away. Benzos get me to sleep, but do not improve my restfulness. Without them, I wake up exhausted, get progressively more exhausted throughout the day, and go to bed exhausted and unable to sleep. With them, I can at least sleep. I am (I forget which) either intolerant to or have a pseudo allergy to opiates; they either don't work at all, give me bizarre side effects, or both, so they are not an option.
While I'm aware of the flawed PACE study, I see my only real options for improvement at the moment are some kind of stretching/yoga/muscle training regimen. This takes my already extreme pain and bumps it up to 11. If there were some way of mitigating the extra exercise pain (which I usually enjoy) I could do more of it, and hopefully improve something.
I don't know what else to do. We've tried every conventional pain and psychiatric medication, I've tried many illicit substances, and nothing works. I am not in any kind of imminent intentional suicide risk, but I am just waiting for something to come out of the blue and kill me so I can be dead and over with it. I don't know what to do, and death is better than this.
Can you try a really really gentle ramp up into yoga? I love Yoga with Adriene on YouTube in part because she focuses so much on what feels good in *your* body, not on getting into the perfect pose.
You might start with this video - A Little Goes a Long Way. I’d do it several days in a row if you can. Then move on to some of her other short, gentle videos. The point is not to “do yoga,” it’s to learn how to listen to your body and find what feels good.
While I don’t have near the chronic pain you do, I was having daily neck and shoulder pain for many years. After a few weeks of doing her Yoga for the Upper Back video consistently, I finally felt like I had times I was pain free there. I had spent so long NOT listening to my neck and shoulders, blocking out their messages so I could go about my day, that it was a delightful surprise to realize if I DID pay attention, I could soothe and ease the pain - not always immediately but with time and gentle consistency.
Hang in there. I have family members with fibromyalgia and chronic fatigue, and they’re some of the toughest cookies and strongest people I know.
posted by bananacabana at 9:08 PM on April 22, 2020 [8 favorites]
You might start with this video - A Little Goes a Long Way. I’d do it several days in a row if you can. Then move on to some of her other short, gentle videos. The point is not to “do yoga,” it’s to learn how to listen to your body and find what feels good.
While I don’t have near the chronic pain you do, I was having daily neck and shoulder pain for many years. After a few weeks of doing her Yoga for the Upper Back video consistently, I finally felt like I had times I was pain free there. I had spent so long NOT listening to my neck and shoulders, blocking out their messages so I could go about my day, that it was a delightful surprise to realize if I DID pay attention, I could soothe and ease the pain - not always immediately but with time and gentle consistency.
Hang in there. I have family members with fibromyalgia and chronic fatigue, and they’re some of the toughest cookies and strongest people I know.
posted by bananacabana at 9:08 PM on April 22, 2020 [8 favorites]
Hi, I'm sorry to hear you're experiencing this. I don't have your exact experience or an experience related to what you describe stemming from a specific physical injury or event; I have chronic pain ("fibromyalgia" aka the diagnosis that tells you "pain hurts!") and as a result, have at times experienced a spectrum of suicidal ideation which pops into my head at basically any time, whether it seems appropriate or relevant to the moment or situation or not. I hate saying it like this, and I'm also not a trained... Well, anything. What has helped me is to call suicidal ideation "unwelcome guests that are going to come into my house in spite of the fact that they're not invited." The suicidal thoughts are the unwelcome guests. When they "pop in" (the way an unwelcome guest might!), I address them with some mindful admission of their presence, but don't let them "run the house." I might tell the thoughts, "yes, I know you're here, and you can sit in the corner. I know you're bringing scary imagery into the my brain because you are in pain. Thank you very much for reminding me that I'm in pain. If you sit in th corner, you can be here while I continue to do XYZ thing [drive the car, make dinner, etc etc]." I learned how to do this outside of therapy and furthered this practice in therapy, and it has served me well. Thoughts are just thoughts, even though your pain is extremely real, your pain does not have the capacity to make you do anything. But, it's very important to acknowledge your pain, not repress it, and of course, what you want to do, not let it run the show.
I'm not sure if this is helpful or totally off the mark; if so, I'm sorry. Just a trick that helps invasive repetitive scary thoughts that perhaps you could try (in conjunction with anything else that may help you). Good luck.
posted by erattacorrige at 9:14 PM on April 22, 2020 [2 favorites]
I'm not sure if this is helpful or totally off the mark; if so, I'm sorry. Just a trick that helps invasive repetitive scary thoughts that perhaps you could try (in conjunction with anything else that may help you). Good luck.
posted by erattacorrige at 9:14 PM on April 22, 2020 [2 favorites]
I have successfully treated patients with chronic fatigue syndrome, fibromyalgia and ptsd/suicidal ideation with John Barnes Myofascial Release therapy. I am a bodyworker, so in the case of these patients I was one of a group of providers treating them usually including an MD or pain management place, counselor, rheumatologist or orthopedist, etc. Your problems sound like our ideal patient.
In addition to providing bodywork, we also teach our patients how to self-treat using the same principles of myofascial release, in gentle, slow ways that will not spike the nervous system into fight or flight mode & create a surge of pain the way other forms of exercise can. This is often something athletic folks are resistant to at first, because it's so gentle and slow and feels very alien to them, but it can really help a lot if they stick with it and go slowly enough (doing one technique for 5-7 minutes).
A lot of providers in my community who practice this form of myofascial release have created extensive self-treatment videos during the pandemic shutdown for their patients to use at home. If you are interested in trying something like that, DM me and I will be happy to share some free stuff you can start with.
Some patients have expressed a similar sentiment as Bananacabana above: "I had spent so long NOT listening to my neck and shoulders, blocking out their messages so I could go about my day, that it was a delightful surprise to realize if I DID pay attention, I could soothe and ease the pain"
That's *exactly* the basic idea behind self treatment :) You can help yourself, you really can, even if right now you feel powerless or hopeless about everything. I promise you that other people have been in similar situations, and have benefited and healed by listening to their body and being willing to really feel what comes up, instead of gritting their teeth and trying to ignore it like they are doing most of the time.
posted by zdravo at 9:25 PM on April 22, 2020 [6 favorites]
In addition to providing bodywork, we also teach our patients how to self-treat using the same principles of myofascial release, in gentle, slow ways that will not spike the nervous system into fight or flight mode & create a surge of pain the way other forms of exercise can. This is often something athletic folks are resistant to at first, because it's so gentle and slow and feels very alien to them, but it can really help a lot if they stick with it and go slowly enough (doing one technique for 5-7 minutes).
A lot of providers in my community who practice this form of myofascial release have created extensive self-treatment videos during the pandemic shutdown for their patients to use at home. If you are interested in trying something like that, DM me and I will be happy to share some free stuff you can start with.
Some patients have expressed a similar sentiment as Bananacabana above: "I had spent so long NOT listening to my neck and shoulders, blocking out their messages so I could go about my day, that it was a delightful surprise to realize if I DID pay attention, I could soothe and ease the pain"
That's *exactly* the basic idea behind self treatment :) You can help yourself, you really can, even if right now you feel powerless or hopeless about everything. I promise you that other people have been in similar situations, and have benefited and healed by listening to their body and being willing to really feel what comes up, instead of gritting their teeth and trying to ignore it like they are doing most of the time.
posted by zdravo at 9:25 PM on April 22, 2020 [6 favorites]
You might be surprised at the positive effect of even slightly — but regularly over time— decreasing your intake of the following:
- caffeine
- sugar
- alcohol
- dairy
I’m not suggesting any of those is completely at fault, or even a large factor, in what you’re experiencing ; but if a small change might lead to a slight improvement, that might provide the wiggle room you need to accommodate the other approaches (such as those offered by others here).
Worth a read:
https://bodytechnician.com/caffeine.html
posted by armoir from antproof case at 11:40 PM on April 22, 2020
- caffeine
- sugar
- alcohol
- dairy
I’m not suggesting any of those is completely at fault, or even a large factor, in what you’re experiencing ; but if a small change might lead to a slight improvement, that might provide the wiggle room you need to accommodate the other approaches (such as those offered by others here).
Worth a read:
https://bodytechnician.com/caffeine.html
posted by armoir from antproof case at 11:40 PM on April 22, 2020
How do you handle hot showers and hot tubs? If those are comfortable or comforting you could try to stretches in the shower, or the deepest bathtub set up that you've got. You can use dumbbells in the shower, but they would not be as much help under water.
If you've got nothing but a tiny shower stall this isn't going to work, but another idea would be to do some dumbbell work just outside the shower and as soon as the pain appears to be ramping up get into it and see if that helps reduce it.
And then there is the possibility of ramping up with weights so slowly as to be laughable - a two pound weight, one rep with each arm five times a day, after two weeks becoming three reps eight times a day, and after two months becoming a three pound weight. This is not absurd. This is what I have had to do with a combination of arthritis and lymphoedema.
Similarly with exercised induced asthma, three unrestricted rotations of the peddles on an exercise bike turned into ten, turned into half a mile, turned into twenty five minutes to do six K with the restriction set to an eight on a scale of 0 to 10. Ramping up this much took me a good fifteen years with the odd year where I did no biking, but given enough time and patience it has worked for me. The think I had to do was entirely ignore what was considered reasonable goals and stages. Your average personal trainer has a competitive sports background and cannot bend their mind around the idea of someone who can lift a fifty pound child without much trouble using two pound weights for only five reps and not ramping up the program to something a gazillion times more intensive, but those minuscule increments worked exceedingly well for me.
The basic method is to stop before there is any bad sensation beyond the normal you get from moving around, and then go back and keep doing it multiple times so it is part of your normal movement before you ramp up by the smallest possible increment.
Also try if weighted blankets make some difference in recovery. Deep pressure works for some people in very strange ways.
posted by Jane the Brown at 4:55 AM on April 23, 2020 [3 favorites]
If you've got nothing but a tiny shower stall this isn't going to work, but another idea would be to do some dumbbell work just outside the shower and as soon as the pain appears to be ramping up get into it and see if that helps reduce it.
And then there is the possibility of ramping up with weights so slowly as to be laughable - a two pound weight, one rep with each arm five times a day, after two weeks becoming three reps eight times a day, and after two months becoming a three pound weight. This is not absurd. This is what I have had to do with a combination of arthritis and lymphoedema.
Similarly with exercised induced asthma, three unrestricted rotations of the peddles on an exercise bike turned into ten, turned into half a mile, turned into twenty five minutes to do six K with the restriction set to an eight on a scale of 0 to 10. Ramping up this much took me a good fifteen years with the odd year where I did no biking, but given enough time and patience it has worked for me. The think I had to do was entirely ignore what was considered reasonable goals and stages. Your average personal trainer has a competitive sports background and cannot bend their mind around the idea of someone who can lift a fifty pound child without much trouble using two pound weights for only five reps and not ramping up the program to something a gazillion times more intensive, but those minuscule increments worked exceedingly well for me.
The basic method is to stop before there is any bad sensation beyond the normal you get from moving around, and then go back and keep doing it multiple times so it is part of your normal movement before you ramp up by the smallest possible increment.
Also try if weighted blankets make some difference in recovery. Deep pressure works for some people in very strange ways.
posted by Jane the Brown at 4:55 AM on April 23, 2020 [3 favorites]
I once had a pilates teacher who had fibromyalgia, and she also taught Gyrokinesis because she felt it had helped her so much in managing her pain, and being able to exercise when in pain. It's a programme of very gentle stretching and joint rotation, mostly performed seated on a stool. Unfortunately it's one of those forms of exercise that seems to be a registered trademark, with the teaching of it somewhat under the control of one organisation, but it does look as if there are YouTube videos with Gyrokinesis workouts that you could check out. This is the official website, if you want to read more about it. You'll also see stuff about Gyrotonic, which I think works on the same principles, but uses big fancy equipment, so tends to be taught in studios.
posted by penguin pie at 6:51 AM on April 23, 2020
posted by penguin pie at 6:51 AM on April 23, 2020
The yoga suggestions above reminded me that there is a yoga for veterans series on PBS.
posted by EllaEm at 8:04 AM on April 23, 2020
posted by EllaEm at 8:04 AM on April 23, 2020
Your post reminded me of an episode of the podcast Invisibilia, about a teenager with a syndrome called AMPS. The treatment regimen that she went through sounded really tough, but it did help her a lot in the end.
Maybe there are specialists that offer a similar program for adults? It seems like AMPS is more common or at least better-studied in kids, but the article at my second link seems legit and says that it can also affect adults. It also says, "Some doctors feel that fibromyalgia, which can affect adults and children, is also a form of AMPS."
I'm sorry you're going through this, it sounds awful :(
posted by slenderloris at 8:32 AM on April 23, 2020 [2 favorites]
Maybe there are specialists that offer a similar program for adults? It seems like AMPS is more common or at least better-studied in kids, but the article at my second link seems legit and says that it can also affect adults. It also says, "Some doctors feel that fibromyalgia, which can affect adults and children, is also a form of AMPS."
I'm sorry you're going through this, it sounds awful :(
posted by slenderloris at 8:32 AM on April 23, 2020 [2 favorites]
I didn't see gabapentin (Neurontin) listed as something you've tried, so I am mentioning it.
Thanks for asking this question. All the suggestions are helping me get back on track with some of the additional things that I am supposed to be doing for my chronic pain. Best wishes.
posted by CathyG at 9:01 PM on April 23, 2020 [2 favorites]
Thanks for asking this question. All the suggestions are helping me get back on track with some of the additional things that I am supposed to be doing for my chronic pain. Best wishes.
posted by CathyG at 9:01 PM on April 23, 2020 [2 favorites]
I used to have horrific fibromyalgia pain, to the point where even gentle yoga was completely out of the question because it would cause a flare that would keep me in bed for days if not weeks. The thing that helped me the most was physical therapy - they basically had to teach my body how to move again, in ways that were less painful than others, so that I could eventually transition to slightly more movement. I went three times a week for at least six months before I saw progress, but eventually I did see progress, and it continued to build to the point where I could move to gentle yoga, etc.
If traditional PT would be accessible to you (cost, insurance, etc.), and if you have the capability to do video calls, it may be worth trying a single session of telemedicine PT, being upfront about your needs before the session starts. If that isn’t an option, or you’d prefer something with a lower barrier to entry, find one or two PT exercises that target an area Of the body you feel comfortable starting with, and do them gently, slowly, at low repetition, trying not to “complete” the movement but do as much of it as you comfortably can. The hardest part can be having the patience to stick with it, especially when it’s a movement that you think other people can do without thinking. Be kind to yourself and your body as best as you can.
posted by okayokayigive at 8:59 AM on April 24, 2020
If traditional PT would be accessible to you (cost, insurance, etc.), and if you have the capability to do video calls, it may be worth trying a single session of telemedicine PT, being upfront about your needs before the session starts. If that isn’t an option, or you’d prefer something with a lower barrier to entry, find one or two PT exercises that target an area Of the body you feel comfortable starting with, and do them gently, slowly, at low repetition, trying not to “complete” the movement but do as much of it as you comfortably can. The hardest part can be having the patience to stick with it, especially when it’s a movement that you think other people can do without thinking. Be kind to yourself and your body as best as you can.
posted by okayokayigive at 8:59 AM on April 24, 2020
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posted by late afternoon dreaming hotel at 8:50 PM on April 22, 2020