Severe ME/CFS: preventing the physical consequences of prolonged immobility

[Hutan]

I'm interested to know what people with severe (and very severe) ME/CFS and their carers have found useful with respect to preventing negative physical consequences of prolonged immobility.

Some of the negative physical consequences I am thinking of, other than deconditioning/muscle wasting, are muscle contractures, bedsores and deep vein thrombosis. I'm also interested in any evidence that these problems are or are not significant issues in severe ME/CFS.

How and from whom did you get information on this topic? Has anyone found having someone come into your home to provide ongoing care for this useful?

 

[Trish]

@PhysiosforME might be able to help.

 

[hotblack]

I have not found any physio support helpful for the reasons you can imagine. But I remain hopeful physios can help those of us with limited mobility in the future.

Thankfully no issues with bed sores, but I am able to move around a bit except when at my worst. Lots of other issues which some good advice would be helpful with I think. Periods when I have been particularly bad have made things worse and it is a long and self taught road to minimise or undo issues when I’m up to it again.

I’ve found different stretches and static positions help undo some of the problems. But also have some joint/muscle/tendon problems I seem stuck with.

I’m fortunately not as bad as some though. Not sure if this is quite what you’re looking for but happy to answer any questions I can either here or drop me a message.

 

[Hutan]

Thank you hotblack, that is what I am looking for. I'm sorry that you have those persisting joint/muscle/tendon problems.

Lots of other issues which some good advice would be helpful with I think. Periods when I have been particularly bad have made things worse and it is a long and self taught road to minimise or undo issues when I’m up to it again.

Please tell us more that you think might help people to know if you feel inclined.



I found this resource:
https://cancercareparcel.com/how-to-help-someone-who-is-bedbound-bedridden/#
It mentions constipation as a possible consequence of immobility. Also osteoporosis. I think lack of exposure to sunlight might also cause problems.

It also notes that 'bedridden' is the right term to use when someone is confined to bed as a result of a disability, whereas 'bedbound' is a wider term that also includes the situation where there is an element of choice. I had thought the terms were complete synonyms and could be used interchangeably.

For instance, someone emotionally devastated after a breakup might stay in bed for days, making them temporarily bedbound. In contrast, “bedridden” is a more severe condition where a person physically cannot leave their bed due to illness, weakness, or disability.

other sources of word definitions say:
bedridden

Someone who's bedridden is so sick or elderly that they can't get out of bed. Your friend might have such a bad case of the flu that she's bedridden for several days and can't go to work or school. Most people who are bedridden are terribly ill and confined to their bed — or a hospital bed — until they recover.

confined to bed by sickness or old age.
"his illness left him practically bedridden"

bedbound
As far as I can see, it does seem that bedbound is a wider term just meaning 'confined to bed'. That includes the prescription of bed-rest, or where there is an element of choice or due to mental illness. That said, it seems to often be used as a synonym of bedridden.

Bedbound is medically defined as someone who is confined to bed, on bed rest, or bedridden.

Unable to leave one's bed for some reason

So, I think 'bedridden' is the most appropriate term to use in severe ME/CFS.


I also found this resource
https://www.carelink.org/wp-content/uploads/2024/02/Caring-for-Bed-Bound-Clients.pdf
although I think it covers the needs of frail elderly and terminal patients beyond just the direct consequences of being bedbound.
A lot of these resources talk about repositioning every two hours, changing sheets frequently, which I imagine would be very difficult for people with very severe ME/CFS. Patients unable to get to the toilet need prompt attention to prevent infections. It also notes the physical consequences of immobility on the carer e.g. back injury from repeated moving of the bedridden person.

 

[PhysiosforME]

hello -thanks for tagging us
We do have a page on our website for people with severe ME https://www.physiosforme.com/severe-me which covers some of the things that have already been mentioned. We do also have a whole chapter in our book on severe and very severe ME which goes into more details such as avoiding postural contractions through positional support, range of movement if tolerated (passive, assisted or active ), pain relief, equipment etc. Obviously it is all dependent on each individual which makes it hard to provide definitive guidance.

 

[bobbler]

I have not found any physio support helpful for the reasons you can imagine. But I remain hopeful physios can help those of us with limited mobility in the future.

Thankfully no issues with bed sores, but I am able to move around a bit except when at my worst. Lots of other issues which some good advice would be helpful with I think. Periods when I have been particularly bad have made things worse and it is a long and self taught road to minimise or undo issues when I’m up to it again.

I’ve found different stretches and static positions help undo some of the problems. But also have some joint/muscle/tendon problems I seem stuck with.

I’m fortunately not as bad as some though. Not sure if this is quite what you’re looking for but happy to answer any questions I can either here or drop me a message.

I'm similar in the being able to move just enough (in bed, and then some time out of bed although this varies wildly based on committments inducing PEM) I'm not sure I'd count as 'immobile'.

I cope by having a large bed, heat pads etc and a lot of pillows - and except when I am at my most ill (which is regular at the peak of any PEM) then I'm changing positions a lot due to aches and pains, hence the pillows for going between my knees or raising my foot due to another injury or stuffing into my back, and during PEM I get aches in eg wrists and ankles so find myself chasing 'cool sheet' and can also stretch out my legs now I have the much larger bed again.

I've no idea on DVT and daren't tempt fate on mentioning it, I guess I'm more superstitious than I thought but read into it what you will without me saying it.

I've done a lot of physio over the years, and was quite trusting of 'good' (but not physiosforME good, just not the bad ones for us and ones that are 'better' for healthy people as they aren't just giving out homework and on the computer) physios keeping it small and focused (and way smaller than you think even for actual injuries otherwise the injury itself seemed to backfire too), but as I had other injuries as I got more severe I've learned what a different beast my body was - particularly when it was that more severe and on a downward curve (I sometimes use the term illness is 'live'), even I was shocked by the cumulative (and then sudden) payback from 'pushing it' just by doing seemingly small stuff but regularly over the 'limit', even where I was being manipulated and not 'doing it' myself (but it obviously moves other parts of your body).

 

[bobbler]

I'm similar in the being able to move just enough (in bed, and then some time out of bed although this varies wildly based on committments inducing PEM) I'm not sure I'd count as 'immobile'.

I cope by having a large bed, heat pads etc and a lot of pillows - and except when I am at my most ill (which is regular at the peak of any PEM) then I'm changing positions a lot due to aches and pains, hence the pillows for going between my knees or raising my foot due to another injury or stuffing into my back, and during PEM I get aches in eg wrists and ankles so find myself chasing 'cool sheet' and can also stretch out my legs now I have the much larger bed again.

I've no idea on DVT and daren't tempt fate on mentioning it, I guess I'm more superstitious than I thought but read into it what you will without me saying it.

I've done a lot of physio over the years, and was quite trusting of 'good' (but not physiosforME good, just not the bad ones for us and ones that are 'better' for healthy people as they aren't just giving out homework and on the computer) physios keeping it small and focused (and way smaller than you think even for actual injuries otherwise the injury itself seemed to backfire too), but as I had other injuries as I got more severe I've learned what a different beast my body was - particularly when it was that more severe and on a downward curve (I sometimes use the term illness is 'live'), even I was shocked by the cumulative (and then sudden) payback from 'pushing it' just by doing seemingly small stuff but regularly over the 'limit', even where I was being manipulated and not 'doing it' myself (but it obviously moves other parts of your body).

PS as a sidenote I spend a lot more than normal people do therefore on pillows and toppers. I try and make sure my pillows have cotton outers (as well as pillow cases obviously, this and finding pillows soft enough that aren't feather has sometimes been no small feat), similar with any toppers that are 'on top' (I sometimes have several layered on each other) and regularly add new pillows to the massive load I have for head and rest of body and then chuck out the oldest and most battered so none that is next to my head or body would be so for more than 6months. I also used to dettol spray and air them at least every couple of months (I'm allergic to dust/dust mites, and OK with that spray though I don't douse anything in it).

I don't do memory foam because it locks me in one place, and my body doesn't agree with that (I have to change position often every 15mins, when I was moderate I stayed at a friend's home who had memory foam pillows and still remember the cricked neck and inability to sleep), I also easily sweat if certain types of artificial fibres are near me.

I'm incredibly fussy about how soft the duvet cover, sheets, pillow cases must be and have always got visible, red, rub marks on my legs and elbows from those that weren't 'soft enough' even when 'just' moderate. I've found ones that also can be washed on high temps if I need, say to wash on 60, and tumble dry everything for softness (used to have to have a cleaner iron them before I got soft enough sheets I was that sensitive). PS maybe I'm unusual because I have incredibly sensitive skin and can't even easily have baths (even without soap) because just the hot water means when I get out my legs itch to the point I draw blood all over from uncontrollable scratching.

I think if someone is properly immobile then it used to be that the system could/would look into special mattresses that blow air through re: bedsores etc. But I'd guess these requisitely (with the immobile) come in single bed size.

I think this is a really important subject for both severe and very severe because of the length of time we are often so ill, but acknowledge that once immobile and/or very severe then I imagine it is a totally different ball game (hard to imagine how much of this is dealt with given everything causes PEM from sensory and then there is movement etc). I agree there absolutely needs to be more guidelines and help on this because being stuck in uncomfortable positions and not getting the right support and/or equipment would be such a huge issue. And I'm not sure whether it is the same in all things as for other illnesses/fragilities.

 

[horton6]

I've been fully bedbound for almost 3 years now.

This year, I tried a little bit of physiotherapy at home with a visiting therapist who identified reduced mobility in my ankles, hips, and hamstrings, and we initiated a passive stretching program so that if my illness ever improved, contractures would not prevent me walking. However at my severity (I can roll and reach and eat food, but not sit up) assisted stretches do not feel "passive" and so after a month I had to abandon the program due to deterioration in my illness.

Even having my legs lightly propped in any position exerts muscle force, and so I can't do it at the moment. But before I got worse, I used to rest in slightly different positions that would use a bigger range of motion than normal, but not apply the level of pressure that would lead to the sensation of a stretch. Like sticking one arm up over my head while keeping it supported by my pillow and bed - this keeps my shoulder a little bit more capable of movement.

I also can't tolerate daily injections, so I don't take clot-prevention medications like clexane. I used to wear compression garments but now I have PTSD associated with them and can't bear it.

What is working for me:
- an alternating air mattress which prevents pressure sores
- changing the folded bed sheet that lays under my hips daily to prevent moisture building up (which would otherwise make my skin disintegrate)
- if you're a constant earplug wearer, be careful not to scratch the canal with a fingernail - I have now developed a big partially obstructive skin tag inside there from the friction of my foam earplug against a small cut (this feels like a very niche downstream effect of being bedbound, but there it is.)
- UTIs are frequent, and I'm not sure why. It could be that in a bedpan, there is lot of sitting in your own waste because it has nowhere to go, and at home you can only do so much to sanitise your bedpan. It could be the reluctance to be a bother and ask someone to give you a bedpan when you need it. It could be all the wet wipes. I'm looking into any kind of urinal device for female anatomy that can be used lying down, and the pickings are very, very slim.

Mostly, I've had to figure out strategies by myself but there were a few principles that I learned while in hospital.

 

[horton6]

A couple more things:

- My vitamin D didn't get low, even after a year with minimal sunlight followed by a full year of darkness with all shades drawn. It's a bit higher now that I can tolerate the window being open all day, but my GP was surprised at how normal it has remained.
- Osteoporosis: my GP's main recommendation was keeping an eye on my diet. The test for it (bone density scan) is not very accessible to younger people, although I did have one at 26 as part of a research study that found I had osteopenia even then. I'm mildly worried about this, but since I'm in no state to get to a testing facility and the flowchart for intervention has me doing the test before any other steps are taken, there's nothing I can do.
- Constipation: it's really, really hard to learn to defecate while laying down (i.e. bedpan. A lot of bedpan guides also tell you to raise the head of your bed to a sitting position, which isn't possible for a lot of us). I needed laxatives (stimulant and softener) at first to get any of it out, and was hesitant to be on them long time, but it's just a necessity at this point. I'm on the lowest dose and it usually works well, but a bout of constipation last year did something to the involved muscles, I think, and since then I haven't been able to bear down and push it out. My biggest tip to anyone with a vagina is splinting - I don a glove, put my thumb in my vagina, and push on the back wall to apply pressure to the rectum and push the stool out. It uses a bit of muscle strength, but so much less than straining.

Something I wish I could do:
Because the trolley or table with my stuff (water, medicine, tissues etc.) is always on one side of my bed, I have very different ranges of motion on each side of my body, because I'm always twisting to reach one side only. It's not easy to alternate sides because it would mean rearranging a lot of other furniture, but that might be a point to consider for people bedbound for a long time.

 

[Hutan]

That's really helpful information @horton6. I'm sorry that you are having to face such a big challenge.

 

[horton6]

Thanks, @Hutan. I wish there were more resources online from the perspective of a disabled person, rather than for nurses. Now I know to look in patient groups and forums, rather than to major organisations for guides, but at the beginning, we couldn't find anything on how to place a bedpan, so I muddled through standing up for a commode for 2 months after it stopped being feasible for me.

Now I know how:

1. have someone roll me onto my side
2. place the bedpan behind me against my skin in the position it would be relative to my body if I were laying on it
3. push it down a few centimetres into the bed, crucially. Do not push it towards me, do not just hold it firmly where it is, or I either will not end up squarely on top of it when I roll back onto my back, or I won't be able to roll back at all. Because your hips are heavy, they sink into the bed much more than a bedpan on its side does, therefore if you don't push it down into the bed, it'll be way off to the side when you roll back. Rolling back also pushes it to the side a bit (if you think of the way a line of books fall sideways on a shelf, it's the same thing - the books don't end up directly on top of one another) so this is important to counteract that
4. allow me to roll onto my back, and let the direction of your pressure on the bedpan follow me in a diagonal - so you change from pushing directly down to pushing down and away from your body, until I'm on top of the bedpan
5. After I'm done, hook one hand under my knee and hold the lip of the bedpan firmly so it doesn't tip when I roll off
6. Using your other hand, push my shoulder to roll me onto my side and off the bedpan
7. Have a wipe ready to immediately catch any drips of urine that otherwise run down the back of the thigh and onto the bed
8. Don't put wipes in the bedpan! Because they shouldn't be flushed down the toilet. A small lidless rubbish bin is handy to have for this, and the bag can be tied and thrown out immediately after
9. Moisture from wet wipes and sweat disrupts skin integrity and increases chance of infection and pressure injury, so a small towel to dry off is helpful (this should also be changed as frequently as possible)
10. If you're caring for someone and they tell you that you missed a spot wiping or they don't feel clean, please, please, please do not argue. It's worth it to just clean them again for the psychological peace of mind they have in feeling clean. Also, you need to wipe probably a lot harder than you imagine, and any speck of waste left on the skin folds can turn into massive irritation that the person can't do anything to fix themselves, and is simply a form of torture. Wipe every surface, including the inner sides of the cleft of the buttocks; wipe in a circular motion when you think you're close to finished.

I hope this is useful to somebody. Toileting has been one of the biggest sources of suffering for me, especially in the two years I was in hospital or aged care (now that I am home and receiving 1:1 care, there are no time pressures that would cause someone to do an insufficient job of it, and I don't receive any nasty comments from nurses about how difficult I'm making their lives).

 

[Maddiexxx]

Thanks, @Hutan. I wish there were more resources online from the perspective of a disabled person, rather than for nurses. Now I know to look in patient groups and forums, rather than to major organisations for guides, but at the beginning, we couldn't find anything on how to place a bedpan, so I muddled through standing up for a commode for 2 months after it stopped being feasible for me.

Now I know how:

1. have someone roll me onto my side
2. place the bedpan behind me against my skin in the position it would be relative to my body if I were laying on it
3. push it down a few centimetres into the bed, crucially. Do not push it towards me, do not just hold it firmly where it is, or I either will not end up squarely on top of it when I roll back onto my back, or I won't be able to roll back at all. Because your hips are heavy, they sink into the bed much more than a bedpan on its side does, therefore if you don't push it down into the bed, it'll be way off to the side when you roll back. Rolling back also pushes it to the side a bit (if you think of the way a line of books fall sideways on a shelf, it's the same thing - the books don't end up directly on top of one another) so this is important to counteract that
4. allow me to roll onto my back, and let the direction of your pressure on the bedpan follow me in a diagonal - so you change from pushing directly down to pushing down and away from your body, until I'm on top of the bedpan
5. After I'm done, hook one hand under my knee and hold the lip of the bedpan firmly so it doesn't tip when I roll off
6. Using your other hand, push my shoulder to roll me onto my side and off the bedpan
7. Have a wipe ready to immediately catch any drips of urine that otherwise run down the back of the thigh and onto the bed
8. Don't put wipes in the bedpan! Because they shouldn't be flushed down the toilet. A small lidless rubbish bin is handy to have for this, and the bag can be tied and thrown out immediately after
9. Moisture from wet wipes and sweat disrupts skin integrity and increases chance of infection and pressure injury, so a small towel to dry off is helpful (this should also be changed as frequently as possible)
10. If you're caring for someone and they tell you that you missed a spot wiping or they don't feel clean, please, please, please do not argue. It's worth it to just clean them again for the psychological peace of mind they have in feeling clean. Also, you need to wipe probably a lot harder than you imagine, and any speck of waste left on the skin folds can turn into massive irritation that the person can't do anything to fix themselves, and is simply a form of torture. Wipe every surface, including the inner sides of the cleft of the buttocks; wipe in a circular motion when you think you're close to finished.

I hope this is useful to somebody. Toileting has been one of the biggest sources of suffering for me, especially in the two years I was in hospital or aged care (now that I am home and receiving 1:1 care, there are no time pressures that would cause someone to do an insufficient job of it, and I don't receive any nasty comments from nurses about how difficult I'm making their lives).

Very helpful, tysm for the time and energy. Much appreciated.