Please help me exercise again - with long covid
July 2, 2022 9:35 AM Subscribe
I've been struggling with long covid for two years; I've done little more than lie in bed. I'm desperate to be mobile again, but don't know where to begin. Have you, or someone you know, started exercising after being completely inactive, and struggling with extreme fatigue? I'm not working, so no personal trainers or gym memberships. I'm 56F, 5'3", 230 pounds. Thank you!
I'd see if you could get physical therapy to create a plan and get started, then maybe go again monthly for a bit. I'm a bit older than you, and got badly out of shape just from isolating and losing my dog, and walking my new pup is really helping. pup not required. I get outside and am reminded of how much I love it; getting started is the thing. You can read and cycle at a gentle pace. People give away equipment on craigslist when they move, etc., see if you can get an exercise bike or treadmill.
Music always helps me get moving.
I'm so sorry you got hit so hard; be gentle with yourself.
posted by theora55 at 9:45 AM on July 2, 2022 [2 favorites]
Music always helps me get moving.
I'm so sorry you got hit so hard; be gentle with yourself.
posted by theora55 at 9:45 AM on July 2, 2022 [2 favorites]
After that much de-conditioning, it’s going to be hard. I did something similar, but had the help of PT.
Take it slow, but start by just walking somewhere flat. If you need to, use a walker (but be sure to stand tall when you use it, no hunching!). You can find the ones with seats pretty regularly at goodwill for $20 or so; I like those because you can sit whenever you need a rest.
After you can walk a 1/4 mile without stopping, throw in a couple of stairs. Then repeat the stairs, as you walk. When you can walk 1/4 mile without stopping, add another 200 feet. Keep doing this, adding distance (and or some stairs) as you build endurance. That’s really your goal here, cardiovascular endurance, which will enable you to do some light weights, and brisker movement -in time.
It took me almost a year, but I went from needing to rest after walking 40’, to being able to walk a mile with only a short rest halfway. You can do this.
posted by dbmcd at 9:47 AM on July 2, 2022 [8 favorites]
Take it slow, but start by just walking somewhere flat. If you need to, use a walker (but be sure to stand tall when you use it, no hunching!). You can find the ones with seats pretty regularly at goodwill for $20 or so; I like those because you can sit whenever you need a rest.
After you can walk a 1/4 mile without stopping, throw in a couple of stairs. Then repeat the stairs, as you walk. When you can walk 1/4 mile without stopping, add another 200 feet. Keep doing this, adding distance (and or some stairs) as you build endurance. That’s really your goal here, cardiovascular endurance, which will enable you to do some light weights, and brisker movement -in time.
It took me almost a year, but I went from needing to rest after walking 40’, to being able to walk a mile with only a short rest halfway. You can do this.
posted by dbmcd at 9:47 AM on July 2, 2022 [8 favorites]
You mention not working, but are you insured? If you are, your insurance might cover some in home PT for a bit. If you've been truly inactive/bedbound for the past two years, in home PT will be beneficial. A PT can start w/ the most gentle of strengthening exercises, and design a program specifically tailored to help improve your ability to do activities of daily living inside your home and navigate your home environment. This could help you build a foundation of improved strength and stamina, and after home PT ends you might also have insurance benefits for outpatient PT, which would be more rigorous and would allow you to build on the strength you've achieved until you're ready to endure more deliberate "exercise." Most significantly, a PT can help assess whether you're trying to do too much, or whether you have specific areas of weakness that they can target to help you avoid injury and worsening fatigue. Good luck to you!
posted by little mouth at 10:25 AM on July 2, 2022 [2 favorites]
posted by little mouth at 10:25 AM on July 2, 2022 [2 favorites]
You need to be very careful, as many people with Long Covid report something called post-exertional malaise (PEM) which is basically feeling worse a day or two after exertion (which could be exercising, other physical activity or even cognitive activity in more extreme cases). If you're certain that you don't experience PEM, then ignore this.
Long Covid of the type that involves fatigue and PEM is not deconditioning — so trying to train your way out of it doesn't work. Unfortunately, this type of Long Covid, like ME/CFS and other post-infectious illnesses, requires careful pacing to make sure you don't exceed your energy envelope. Gradually increasing exercise has been tried in ME/CFS and shown not to work. Many people with Long Covid are learning the same lesson now. Some people improve over time and are naturally able to do more, but forcing this is not going to help and can make you worse.
If PEM and fatigue describes your Long Covid, I can share some resources.
posted by ssg at 10:26 AM on July 2, 2022 [25 favorites]
Long Covid of the type that involves fatigue and PEM is not deconditioning — so trying to train your way out of it doesn't work. Unfortunately, this type of Long Covid, like ME/CFS and other post-infectious illnesses, requires careful pacing to make sure you don't exceed your energy envelope. Gradually increasing exercise has been tried in ME/CFS and shown not to work. Many people with Long Covid are learning the same lesson now. Some people improve over time and are naturally able to do more, but forcing this is not going to help and can make you worse.
If PEM and fatigue describes your Long Covid, I can share some resources.
posted by ssg at 10:26 AM on July 2, 2022 [25 favorites]
Yeah, please listen to ssg. You may not have PEM — and if you aren't sure, trying a little extra exertion now to see how it affects you won't do any long-term harm. But if you find that you do have it, do not try to power through it on the assumption that it will go away with work and persistence.
posted by nebulawindphone at 10:33 AM on July 2, 2022 [10 favorites]
posted by nebulawindphone at 10:33 AM on July 2, 2022 [10 favorites]
Just move. Go real slow, but just do things to start with that involve moving your limbs and torso. See if you can make it fun and joyful - make it a game, make it something you do on the phone with a friend, listen to silly (or anthemic! find some triumphant disco or 80s dance remixes or, uhh, newer music that you might be more familiar with than me) songs. It doesn't matter if all you do is awkwardly "I Can't Dance" dance back and forth, just move your arms and legs. Or to start, you might stand and hold on to a sturdy chair to move your legs, and then sit in the chair to move your arms.
If you have an insurance situation that might allow you a little time with a personal trainer, that would be awesome, but youtube personal trainers have a lot of coverage on low-impact, reduced-mobility, or other highly conditional situations. Bob and Brad have extensive playlists for Exercises for Seniors and Desk Workouts. Ask Dr Jo has a series on balance exercises (these are more like poses) that you might find helpful as support for your gentle movement program. Here's a video on seated stretching for relaxation - that's going to be a lot of movement for you at this stage, but you really do need the stretching and I'll bet the relaxation wouldn't hurt either.
It's important to reframe "exercise" to "movement" right now, because we think of "exercise" as the strenuous type of movement and you're not going to be there for a while. You're going to have muscle wasting, you're not going to have even baseline walking-around protection for your joints and you're not going to have much core strength. Walking as locomotion is unavoidable, but I'd advise against walking away from your home or walking on uneven or unpredictable surfaces. Blowing out a knee or shoulder or your back or neck would be a terrible setback.
This is not the right time for calisthenics or lifting anything heavier than a bag of flour. Start by working on your infrastructure, make sure any exertion you attempt is as fall-proof or fall-safe as possible, and just be so so careful with your joints. It won't take much at this point to get your heartrate up, and you need to be careful with that as well. Don't forget water and electrolytes.
posted by Lyn Never at 10:35 AM on July 2, 2022 [4 favorites]
If you have an insurance situation that might allow you a little time with a personal trainer, that would be awesome, but youtube personal trainers have a lot of coverage on low-impact, reduced-mobility, or other highly conditional situations. Bob and Brad have extensive playlists for Exercises for Seniors and Desk Workouts. Ask Dr Jo has a series on balance exercises (these are more like poses) that you might find helpful as support for your gentle movement program. Here's a video on seated stretching for relaxation - that's going to be a lot of movement for you at this stage, but you really do need the stretching and I'll bet the relaxation wouldn't hurt either.
It's important to reframe "exercise" to "movement" right now, because we think of "exercise" as the strenuous type of movement and you're not going to be there for a while. You're going to have muscle wasting, you're not going to have even baseline walking-around protection for your joints and you're not going to have much core strength. Walking as locomotion is unavoidable, but I'd advise against walking away from your home or walking on uneven or unpredictable surfaces. Blowing out a knee or shoulder or your back or neck would be a terrible setback.
This is not the right time for calisthenics or lifting anything heavier than a bag of flour. Start by working on your infrastructure, make sure any exertion you attempt is as fall-proof or fall-safe as possible, and just be so so careful with your joints. It won't take much at this point to get your heartrate up, and you need to be careful with that as well. Don't forget water and electrolytes.
posted by Lyn Never at 10:35 AM on July 2, 2022 [4 favorites]
Please please listen to the CFS/ME community - exercise and pushing yourself can make you permanently worse. Exceeding your energy envelope with exertion will make your situation worse. There’s been so much research about this and people are still recommending graded exercise (see almost all comments above!) contrary to what the community very clearly knows. If you are still experiencing extreme fatigue, it is unlikely that the problem is deconditioning and not chronic fatigue. There are amazing cfs/me communities on both Instagram and Twitter. Additionally, there are several long covid groups. Please read and research before jumping into any kind of exercise. There are safe ways of finding out where your energy envelope is, but it’s very different from just slowly building up. Join a long haulers community, join me/cfs communities and don’t set yourself back by pushing through. Some people do spontaneously recover. Part of getting mobile again can be embracing mobility devices. It’s not a failure! It’s freedom.
posted by Bottlecap at 11:07 AM on July 2, 2022 [19 favorites]
posted by Bottlecap at 11:07 AM on July 2, 2022 [19 favorites]
This report recommends doing recumbent exercise like rowing, swimming, or cycling, and increasing duration over time (see section 6.2.7)
posted by Clustercuss at 11:14 AM on July 2, 2022 [1 favorite]
posted by Clustercuss at 11:14 AM on July 2, 2022 [1 favorite]
The American College of Cardiology report linked above is specifically for those who are recovering from myocarditis (inflammation of the heart) and similar issues due to Covid, which are relatively rare. It is not for Long Covid in general.
posted by ssg at 11:21 AM on July 2, 2022 [4 favorites]
posted by ssg at 11:21 AM on July 2, 2022 [4 favorites]
Seconding the Bob and Brad's exercises for seniors. I do wish their videos were a bit more curated - I'm looking for the video that gave me a way to do squats with my wonky knees and I can't find it just because they have so many videos about squats.
Definitely follow other people's advice specific to COVID - I just want to say that any movement is better than no movement. I know someone whose elderly mother improved a a lot just by walking around her dining room table ten times a day. Forget any ideas about what you think you "should" be able to do based on your previous health or what anyone else is doing and start very, very slowly.
posted by FencingGal at 11:22 AM on July 2, 2022 [5 favorites]
Definitely follow other people's advice specific to COVID - I just want to say that any movement is better than no movement. I know someone whose elderly mother improved a a lot just by walking around her dining room table ten times a day. Forget any ideas about what you think you "should" be able to do based on your previous health or what anyone else is doing and start very, very slowly.
posted by FencingGal at 11:22 AM on July 2, 2022 [5 favorites]
I would try to keep thing as simple as possible and follow what is now consensus advice of focusing on walking and basic body weight exercises (negative push-ups, using knees if need be, mild squats)
I find this guy's positive attitude to be a huge inspiration:
posted by Jon44 at 12:18 PM on July 2, 2022 [1 favorite]
I find this guy's positive attitude to be a huge inspiration:
posted by Jon44 at 12:18 PM on July 2, 2022 [1 favorite]
If you want someone to commiserate and/or chat (text/messages) preferably with, I'm dealing with much the same.
posted by stormyteal at 12:25 PM on July 2, 2022 [2 favorites]
posted by stormyteal at 12:25 PM on July 2, 2022 [2 favorites]
Response by poster: Thanks so much for all this information, I really appreciate it. As someone mentioned, I have definitely been comparing to pre-covid mobility - I was working out every day and loving it. Searching for articles and videos is exhausting, so thanks for the recs!
posted by racersix6 at 12:27 PM on July 2, 2022
posted by racersix6 at 12:27 PM on July 2, 2022
Response by poster: I forgot to add, I'm grateful to have insurance, but it has such a high deductible as to be prohibitive.
posted by racersix6 at 12:39 PM on July 2, 2022
posted by racersix6 at 12:39 PM on July 2, 2022
I got a set of exercise bands and have been working my core muscles by stretching my legs and arms while lying in bed. It's awesome. You can go from the easiest band as a beginning and choose more difficult bands and you build strength. I have seen a real improvement in my core muscles, quadriceps and calves without straining my knees or back. Easy to do a few sets, read, do a few more, et cetera according to your schedule. No fancy machines or clothes required. I have a GAIAM set I bought at the drugstore for twenty dollars. I use the strap included as a stirrup to stretch my legs. Highly recommended.
posted by effluvia at 12:41 PM on July 2, 2022 [4 favorites]
posted by effluvia at 12:41 PM on July 2, 2022 [4 favorites]
‘I Had Never Felt Worse’: Long Covid Sufferers Are Struggling With Exercise and experts have some theories as to why. (NYT article)
posted by oceano at 12:45 PM on July 2, 2022 [2 favorites]
posted by oceano at 12:45 PM on July 2, 2022 [2 favorites]
Obligatory IANAD. A number of dysautonomias (which much of long COVID seems to fall under) respond well to increase salt in the diet in combination with drinking more water. POTS is the typical one it’s used for but there’s evidence of it helping ME/CFS as well. In POTS, there’s evidence that it’s linked to disruption of the sodium-retention hormone aldosterone, meaning that you don’t retain enough sodium and become constantly dehydrated even if you’re drinking enough water. There is evidence of aldosterone disruption in COVID, and could be why increased exercise does not work and could even be harmful, as the body does not have enough sodium to handle this.
I haven’t seen any studies on this for long COVID and won’t presume to speculate whether this is what’s going on for you. But electrolyte drinks and salt pills are available without a prescription (I use Liquid IV and Vitassium) and experimenting with them for a week or two is unlikely to harm you and could provide you valuable information to bring to your healthcare team. And you’re supposed to increase your electrolytes when exercising anyway. In my experience the positive effects are immediately obvious—I’m feeling bad, so I take two Vitassium pills and 16oz of water and I feel better within the next 20 or so minutes. It did take a couple of days when I first started on them to see effects, but I definitely significantly improved within a week. I would not advise any long term changes to diet or use of supplements, but gathering some data and then making a plan with your doctor if it does help seems reasonable.
I tried graded exercise for ten years after getting the equivalent of long COVID from another disease. I was never able to do it (it always destroyed my functioning for days afterward) until I started taking salt pills and drinking more water—but drinking more water alone did nothing or sometimes made me feel worse. The salt was an important factor and is of course completely counterintuitive because of the bad rap it has gotten in healthcare. But it is the only thing that has let me even approach exercise.
posted by brook horse at 1:20 PM on July 2, 2022 [11 favorites]
I haven’t seen any studies on this for long COVID and won’t presume to speculate whether this is what’s going on for you. But electrolyte drinks and salt pills are available without a prescription (I use Liquid IV and Vitassium) and experimenting with them for a week or two is unlikely to harm you and could provide you valuable information to bring to your healthcare team. And you’re supposed to increase your electrolytes when exercising anyway. In my experience the positive effects are immediately obvious—I’m feeling bad, so I take two Vitassium pills and 16oz of water and I feel better within the next 20 or so minutes. It did take a couple of days when I first started on them to see effects, but I definitely significantly improved within a week. I would not advise any long term changes to diet or use of supplements, but gathering some data and then making a plan with your doctor if it does help seems reasonable.
I tried graded exercise for ten years after getting the equivalent of long COVID from another disease. I was never able to do it (it always destroyed my functioning for days afterward) until I started taking salt pills and drinking more water—but drinking more water alone did nothing or sometimes made me feel worse. The salt was an important factor and is of course completely counterintuitive because of the bad rap it has gotten in healthcare. But it is the only thing that has let me even approach exercise.
posted by brook horse at 1:20 PM on July 2, 2022 [11 favorites]
Johns Hopkins has some resources that might be useful to you. They were when they were first developed I think aimed more at COVID patients who were on ventilators, but they definitely may be helpful in their approach, which begins with Phase I: Beginning (exercise lying down), then works up to Phase 2: Building (seated exercise), before getting you to Phase 3: Being (more traditional standing exercise). The PDF is called "Bouncing Back from COVID-19: Your Guide to Restoring Movement" and is linked from their patient resources page in several languages here
Best wishes to you. I hope you are able to discover a new normal that feels better.
posted by hydropsyche at 2:42 PM on July 2, 2022 [5 favorites]
Best wishes to you. I hope you are able to discover a new normal that feels better.
posted by hydropsyche at 2:42 PM on July 2, 2022 [5 favorites]
I have previously recommended this gentle, non-judgemental programme aimed at getting people mobile: Just Augustin. You can start with a program that is literally movement sitting in a chair or on your sofa. It is also good for people stuggling with illness or chronic conditions.
posted by DarlingBri at 2:54 PM on July 2, 2022 [2 favorites]
posted by DarlingBri at 2:54 PM on July 2, 2022 [2 favorites]
Please please please please, ignore anyone who is just giving you general advice. Generic "how to get back in shape after being inactive" advice can be actively harmful to you. You need COVID specific advice. As an example: I've been specifically told by my specialist Dr. not to exercise beyond a gradually lengthening walk ( I started at 10 minutes, but I was starting from a better place than you). With an explicate instruction not to get my heart rate above 120bpm.
I have been told the reason you shouldn't treat the return to activity from COVID like you maybe would other illnesses is that CVOID can blow up your Mitochondria, which are the bits of your cells that take oxygen and use it to power your body. These take a long time to rebuild and if you do too much, well then you've just damaged them again and now get to make up lost ground. The reason you need to go slow rebuilding is because it's not like the usual "overdoing it" where you can feel when you're getting to your limit. You might not know until the next day. To draw a very broad analogy, you wouldn't start working on getting back into running while your broken leg hasn't fully healed, and you shouldn't start taxing the energy reserves in your cells while their batteries are still damaged.
Additionally, in some Long COVID sufferers, there is damage to the nervous system as well, and our brains are energy hungry at the best of times, and even more so while they're healing. So, any exercise is going to be competing with that healing.
Since going to a specialist Dr. is not something you're able to do, I'd specifically like to recommend the Body Politics slack as a resource to for getting that advice outside of a health care situation. Link. If nothing else, I found it unbelievably comforting to know I wasn't alone in what I was going through. One bit of caution though: since different aspects of Long COVID seems to be caused by different mechanisms. It's important to remember that even within the group of us that are going through this together, what works for another person might not work for you.
Please take care, and remember to be patient with yourself. Achingly slow improvement is still improvement.
posted by Gygesringtone at 2:58 PM on July 2, 2022 [15 favorites]
I have been told the reason you shouldn't treat the return to activity from COVID like you maybe would other illnesses is that CVOID can blow up your Mitochondria, which are the bits of your cells that take oxygen and use it to power your body. These take a long time to rebuild and if you do too much, well then you've just damaged them again and now get to make up lost ground. The reason you need to go slow rebuilding is because it's not like the usual "overdoing it" where you can feel when you're getting to your limit. You might not know until the next day. To draw a very broad analogy, you wouldn't start working on getting back into running while your broken leg hasn't fully healed, and you shouldn't start taxing the energy reserves in your cells while their batteries are still damaged.
Additionally, in some Long COVID sufferers, there is damage to the nervous system as well, and our brains are energy hungry at the best of times, and even more so while they're healing. So, any exercise is going to be competing with that healing.
Since going to a specialist Dr. is not something you're able to do, I'd specifically like to recommend the Body Politics slack as a resource to for getting that advice outside of a health care situation. Link. If nothing else, I found it unbelievably comforting to know I wasn't alone in what I was going through. One bit of caution though: since different aspects of Long COVID seems to be caused by different mechanisms. It's important to remember that even within the group of us that are going through this together, what works for another person might not work for you.
Please take care, and remember to be patient with yourself. Achingly slow improvement is still improvement.
posted by Gygesringtone at 2:58 PM on July 2, 2022 [15 favorites]
Bruce Campbell covers a lot of ground on "Recovery from Chronic Fatigue." I think I found the link here on AskMe years and years ago. I don't have long covid, but I deal with a similar post-viral syndrome on top of autoimmune pain and fatigue. His advice has been really helpful. He was an athlete before he got sick and was able to very slowly build his activity up to previous levels.
posted by lloquat at 3:12 PM on July 2, 2022 [2 favorites]
posted by lloquat at 3:12 PM on July 2, 2022 [2 favorites]
IANAD/YMMV. I'm speaking as someone who is dealing with POTS/dysautonomia, and have spent the past 2.5 years trying to get back to being more active/more mobile after a clusterfuck of health problems leveled me (though not COVID).
For me, I followed the CHOP/Levine protocol for POTS, though I had to do some building up before I could even start it. The basic idea is to start with recumbent exercises - swimming, rowing machine, recumbent bike. I did the recumbent bike. How upright you are can really vary for different recumbent bikes. As a starting place, you might want to get one of those under desk cycling things, which depending on the height of it, you might be able to use while laying down on a yoga mat or something like that to start. There's more to the program than that - you can find it by googling around.
There's a lot of good info in both the POTS and CFS/ME subreddits, depending on which of these best describes your situation.
You will absolutely want some kind of fitness watch or other heart rate tracker. I would probably be trying to keep my heart rate as low as possible to start out with, in your position.
But also, jumping into aerobic exercise may not be the best place to start if you've been bedbound. Consider just doing gentle core exercises like abdominal bracing, maybe some glute squeezes. Then maybe try to build up to slightly more challenging core and lower body exercises.
Start slow. No, even slower than that. Better to start off what feels absurdly slow than to go too quickly and make your condition worse (ask me how I know). Watch out for the post exertional malaise. Listen to the people in this thread above who discussed this. Watch to see if your heart rate sky rockets anytime you're upright (one sign of potential POTS/orthostatic intolerance). I would probably start every other day or every two days, not every day, in case PEM hits. Build up slowly.
If there's any way to get into a doctor or a physical therapist, you should really do that. But I know that may just not be economically feasible. And to be honest, I had the privilege to see a boatload of specialists and yet most of them had no useful advice, and I mostly had to sort through things myself.
But take everything in this thread with a grain of salt, including my answer. Because I can only speak from my personal experience - and the staggering amount of research I've done over the 2.5 years that I've been dealing with this.
Listen to your body. And even that can be hard. Because on some level, any exercise after being bedbound for so long is going to suck and make you feel worse. But you need to try to differentiate between the expected "I feel like crap because re-conditioning is hard when you're ill" vs the deterioration seen in CFS/ME when you do too much.
The info on pacing in the subreddit for CFS/ME is worth reading. I really would recommend checking out both the CFS subreddit and the POTS subreddit. If you search those subreddits for "Long COVID" I know you will find a treasure trove of posts.
Good luck. Has someone who has recently been in a similar position and who is only recently starting to see a bit of light at the end of the tunnel, I really feel for you. It is horrible to go from being an active person to someone who can't get out of bed. Good luck.
posted by litera scripta manet at 4:14 PM on July 2, 2022 [3 favorites]
For me, I followed the CHOP/Levine protocol for POTS, though I had to do some building up before I could even start it. The basic idea is to start with recumbent exercises - swimming, rowing machine, recumbent bike. I did the recumbent bike. How upright you are can really vary for different recumbent bikes. As a starting place, you might want to get one of those under desk cycling things, which depending on the height of it, you might be able to use while laying down on a yoga mat or something like that to start. There's more to the program than that - you can find it by googling around.
There's a lot of good info in both the POTS and CFS/ME subreddits, depending on which of these best describes your situation.
You will absolutely want some kind of fitness watch or other heart rate tracker. I would probably be trying to keep my heart rate as low as possible to start out with, in your position.
But also, jumping into aerobic exercise may not be the best place to start if you've been bedbound. Consider just doing gentle core exercises like abdominal bracing, maybe some glute squeezes. Then maybe try to build up to slightly more challenging core and lower body exercises.
Start slow. No, even slower than that. Better to start off what feels absurdly slow than to go too quickly and make your condition worse (ask me how I know). Watch out for the post exertional malaise. Listen to the people in this thread above who discussed this. Watch to see if your heart rate sky rockets anytime you're upright (one sign of potential POTS/orthostatic intolerance). I would probably start every other day or every two days, not every day, in case PEM hits. Build up slowly.
If there's any way to get into a doctor or a physical therapist, you should really do that. But I know that may just not be economically feasible. And to be honest, I had the privilege to see a boatload of specialists and yet most of them had no useful advice, and I mostly had to sort through things myself.
But take everything in this thread with a grain of salt, including my answer. Because I can only speak from my personal experience - and the staggering amount of research I've done over the 2.5 years that I've been dealing with this.
Listen to your body. And even that can be hard. Because on some level, any exercise after being bedbound for so long is going to suck and make you feel worse. But you need to try to differentiate between the expected "I feel like crap because re-conditioning is hard when you're ill" vs the deterioration seen in CFS/ME when you do too much.
The info on pacing in the subreddit for CFS/ME is worth reading. I really would recommend checking out both the CFS subreddit and the POTS subreddit. If you search those subreddits for "Long COVID" I know you will find a treasure trove of posts.
Good luck. Has someone who has recently been in a similar position and who is only recently starting to see a bit of light at the end of the tunnel, I really feel for you. It is horrible to go from being an active person to someone who can't get out of bed. Good luck.
posted by litera scripta manet at 4:14 PM on July 2, 2022 [3 favorites]
I had a mild case of Covid in January and was in bed for months, I got moving again by going to physical therapy and that’s what I’d recommend - covid messes you up in some weird ways and it can get worse if you overdo it. A physical therapist will help you start out slowly.
posted by bile and syntax at 4:53 PM on July 2, 2022 [1 favorite]
posted by bile and syntax at 4:53 PM on July 2, 2022 [1 favorite]
yeah i was mostly bedridden for a few years and when i was recovering i found that back pain was my biggest problem with getting mobile and active again
i bought a back brace off Amazon and wore that for a few months while sitting/standing/walking and then gradually didn't need it anymore
posted by Jacqueline at 10:15 PM on July 2, 2022 [1 favorite]
i bought a back brace off Amazon and wore that for a few months while sitting/standing/walking and then gradually didn't need it anymore
posted by Jacqueline at 10:15 PM on July 2, 2022 [1 favorite]
oh and i found that having a "quest" was more motivational than going walking just to walk, so i got a litter picker grabber thing and picked up litter in my neighborhood
posted by Jacqueline at 10:16 PM on July 2, 2022 [1 favorite]
posted by Jacqueline at 10:16 PM on July 2, 2022 [1 favorite]
I agree that it’s super important to avoid PEM (and second the shoutout to salt).
Also, check out Spoonie Yoga on YouTube. She is herself chronically ill and has lots of very gentle bed yoga and other routines for sick people. Like here’s one that’s all supine positions for bed bound people: here
posted by hungrytiger at 11:54 PM on July 2, 2022 [3 favorites]
Also, check out Spoonie Yoga on YouTube. She is herself chronically ill and has lots of very gentle bed yoga and other routines for sick people. Like here’s one that’s all supine positions for bed bound people: here
posted by hungrytiger at 11:54 PM on July 2, 2022 [3 favorites]
I swim at my local YMCA. Some of my fellow swimmers have obvious handicapping conditions. If there is a local Y with a pool, and if you and your doctor and/or physical therapist decide swimming might be an option for you, ask for a scholarship. They have them and you deserve one.
posted by mareli at 7:21 AM on July 3, 2022 [2 favorites]
posted by mareli at 7:21 AM on July 3, 2022 [2 favorites]
Response by poster: The support here has been so helpful, and has made me feel so much better. My doctors don't have any answers and I've felt quite isolated. I'm sorry others are going through this, but it's nice to know this is a real thing. Some doctors are quite dismissive. I appreciate you all!
posted by racersix6 at 8:53 AM on July 3, 2022 [2 favorites]
posted by racersix6 at 8:53 AM on July 3, 2022 [2 favorites]
Oh, yes, the YMCA pool is a great idea! I'm a member of my local Y, and it's super handicap accessible. My Y pool has lots of aqua exercise equipment - aqua jogging/walking belts, pool noodles, barbells - and a designated lane for "adult recreation swim" which is basically anyone who isn't doing straight up laps. So that means you can just hang out at the shallow end and do gentle stretches.
I didn't get into this in my previous comment, but very early on in my recovery, I was in a ton of pain b/c my joints were totally screwed up, in addition to the POTS/barely being able to walk/etc. And getting in the pool and just moving around a bit, doing some gentle exercises - it was my first experience of moving without being in severe pain.
Just be careful and really set a time limit for yourself. One thing about being in the water is you can underestimate just how draining it is.
I also like my local Y pool better than other pools I've been to b/c they keep the water on the warmer side, which is good if you aren't doing the kind of intensive swimming that would warm you up.
My local Y also has a nice padded physical therapy table. I'm sure this may vary from place to place, but it was so much easier for me to do my exercises on that table, b/c getting on and off the floor was too hard, but my bed was too cushy when I started doing slightly more challenging PT exercises.
I would definitely vote for walking around in the water before trying to walk around outside.
posted by litera scripta manet at 9:47 AM on July 3, 2022
I didn't get into this in my previous comment, but very early on in my recovery, I was in a ton of pain b/c my joints were totally screwed up, in addition to the POTS/barely being able to walk/etc. And getting in the pool and just moving around a bit, doing some gentle exercises - it was my first experience of moving without being in severe pain.
Just be careful and really set a time limit for yourself. One thing about being in the water is you can underestimate just how draining it is.
I also like my local Y pool better than other pools I've been to b/c they keep the water on the warmer side, which is good if you aren't doing the kind of intensive swimming that would warm you up.
My local Y also has a nice padded physical therapy table. I'm sure this may vary from place to place, but it was so much easier for me to do my exercises on that table, b/c getting on and off the floor was too hard, but my bed was too cushy when I started doing slightly more challenging PT exercises.
I would definitely vote for walking around in the water before trying to walk around outside.
posted by litera scripta manet at 9:47 AM on July 3, 2022
Oh, last thing, if you do think you have any orthostatic intolerance - if you feel faint/lightheaded/dizzy when standing, if your heart rate spikes or your blood pressure drops, if being upright is super draining/hard - consider trying medical compression tights in addition to the drinking lots of water/salt rec from above.
They are a bit pricy, but they made a huge difference for me. Pro tip is to put them on first thing in the morning before you even get out of bed. I get mine from bright life direct. I like the full length tights (but the one with a cut out for the toes). Compression socks did nothing for me, but the tights are great. A bit difficult to get on at first. I got the Juzo Soft 2000 or something like that. But they are a bit pricier, I think you can find cheaper options. I started out with 20-30mmHg then eventually moved my way up to 30-40mmHg.
Also, I know you aren't supposed to wear them while sleeping. Not sure if you are supposed to use them when lying in bed, but i did it all the time.
posted by litera scripta manet at 9:51 AM on July 3, 2022
They are a bit pricy, but they made a huge difference for me. Pro tip is to put them on first thing in the morning before you even get out of bed. I get mine from bright life direct. I like the full length tights (but the one with a cut out for the toes). Compression socks did nothing for me, but the tights are great. A bit difficult to get on at first. I got the Juzo Soft 2000 or something like that. But they are a bit pricier, I think you can find cheaper options. I started out with 20-30mmHg then eventually moved my way up to 30-40mmHg.
Also, I know you aren't supposed to wear them while sleeping. Not sure if you are supposed to use them when lying in bed, but i did it all the time.
posted by litera scripta manet at 9:51 AM on July 3, 2022
I have no advice, only an NYT link that just came up on running/working out afterwards.
posted by jenfullmoon at 11:25 AM on July 3, 2022 [1 favorite]
posted by jenfullmoon at 11:25 AM on July 3, 2022 [1 favorite]
I have fibromyalgia and possibly ME, which are similar to long COVID in many ways. My doctor suggested starting with literally one minute of exercising a day (I dance in my living room) and adding a minute each week, until you’re up up 30 minutes a day.
posted by lunasol at 8:34 AM on July 4, 2022 [1 favorite]
posted by lunasol at 8:34 AM on July 4, 2022 [1 favorite]
Just echoing everything everyone has said about post-exertional malaise (PEM) - if you have that and exercise, you can make yourself permanently worse, even bedbound. One of the major risk factors for Severe ME is overexertion in the first year of illness. Just rest as much as you can and don't worry about getting back to it. ME Action's pacing guide helped me the most: https://www.meaction.net/wp-content/uploads/2020/10/Pacing-and-Management-Guide-for-ME_CFS-8.pdf
The Body Politic support group is really good too.
posted by todolos at 3:40 PM on July 4, 2022 [3 favorites]
The Body Politic support group is really good too.
posted by todolos at 3:40 PM on July 4, 2022 [3 favorites]
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posted by Brent Parker at 9:40 AM on July 2, 2022 [5 favorites]