Rest and muscle pain

[Singout]

Hi, everyone,

Thanks for your helpful answers to my previous questions. I'm now in week 9 of my first bad crash after having mild symptoms and being quite active for several years (working, bike riding, light running, lifting heavy boxes, etc.) I'm in bed (awake) about 14 hrs/day now, mostly housebound, and really dependent on others.

What do people think about resting lying down vs. sitting up? I feel better lying down--more rested and less lightheaded (I'm getting tested for OI in a few weeks, hopefully). But I wonder if it's bad for my body in general or my OI to be lying down this much.

Also, I'm beginning to develop pain in my upper body muscles from doing the simplest "everyday" activities that would never have caused pain before, and maybe also my sleep positions. My ME books say you shouldn't do strength work until you're doing walking exercises, and shouldn't do walking till you've got enough energy to easily do housework. I was there a few weeks ago, but have gotten a bit worse from moving house. Any ideas on whether it's OK to get up and do gentle exercises when in bed most of the time? Or whether it makes a difference that I was quite active 9 weeks ago?

Thanks!

 

[Seven7]

1) if you suspect OI, u can help yourself with the usual stuff. Electrolyte drink + 1 gal of water a day, compression socks, salt (As you monitor your BP) I do 4g to 6 g a day (I buy salt tablets on pharmacy).

When you first wake up take your HR and BP. If your HR is high u might be dehydrated (Do electrolytes as needed). If BP to low, load more salt.

I am not doctor this is just some tips I wish I knew when I was in bed. It all depends what is wrong with you.

 

[minkeygirl]

I think it is individual. I cannot sit up. I never do except to eat and if I could eat laying down I would.

As for your book, I don't know what book you speak of but to make blanket statements about what to do and what order seems kind of nutty to me. You do what you can do when you can do it at 50% of what you think you can do.

This disease is individual. No one can tell you what to do to recover faster. You have to just go with how you feel.

@Inester7. I don't have OI but I still have to stay laying down. Sitting up is just too exhausting for me.

 

[AndyPandy]

Hi Singout. When I was in the bedridden stage, I googled and found some exercises and stretches for people who are bedridden. I did only tiny amounts of the ones I could manage. It wasn't much but seemed to help me. I wasn't able to get up out of bed and exercise at that stage.

Best wishes and encouragement to you.

 

[*GG*]

Here is another CFS website with gentle Yoga videos, and DVD "for Sale" with a donation. FYI

Main page:

http://cfsknowledgecenter.ning.com/?xg_source=msg_mes_network

Videos:

http://cfsknowledgecenter.ning.com/group/yogaonthepath

GG

 

[SickOfSickness]

You may be having PEM from moving. Are you slowly improving from moving, but need weeks more? Take it easier until you are over the move.

It depends like someone said above. In my opinion it's best to stay in bed more than you think you need. But do enough sitting, standing, and walking so that it doesn't become harder and feel foreign to get out of bed. (As long as you don't get worse.)

 

[Valentijn]

@Singout - If you feel better resting and lying down, then that's what you should be doing. Trying to push yourself will just make things worse.

I had to spend 3 weeks lying down due to orthostatic intolerance, and I was stronger when I was able to get up again, not weaker. Don't worry about deconditioning.

 

[Singout]

Thanks everyone, that's really helpful. I'll check out the yoga info.

@Inester7 I've been drinking 4 litres of water per day with 1/2 t. of salt and potassium chloride each in each one, and will get a friend to to the sitting/standing OI test in a few weeks to take to my doctor. I think the drink is helping, as I'm not grabbing the walls any more. I don't have a BP monitor yet as I don't have the energy to navigate all the options.

And yes, I'm recovering from moving--we sent the stuff to my new place last week where it's being unpacked by my wonderful housemate, friends, and parents. I'm at my parents' for at least another week to rest before going to the new place. It's still stressful so I need lots of rest. I'll do what SickofSickness said and make sure getting out of bed doesn't get hard. I'm also worried about living on the 2nd floor in the new place...

@AndyPandy You write as if you're no longer bedbound--if that's the case, what helped you get past that? I can't access a specialist, so need all the advice I can get!

 

[maryb]

I think if you can't get out of bed then you need to change position as much as you are able without exerting yourself. This gives some muscles a rest and then uses others, it really is about what others have said, only do what you feel able to. Getting out of bed is always hard when you've been crashed - I get very wobbly and dizzy - if you can get up to sit - just do it slowly and for a few minutes at a time. Just re-orientating yourself to being upright is difficult.
But the most important thing is - listen to you're body - you can't put a time on stuff.
hope this phase doesn't last too long.

 

[AndyPandy]

Thanks everyone, that's really helpful. I'll check out the yoga info.

@Inester7 I've been drinking 4 litres of water per day with 1/2 t. of salt and potassium chloride each in each one, and will get a friend to to the sitting/standing OI test in a few weeks to take to my doctor. I think the drink is helping, as I'm not grabbing the walls any more. I don't have a BP monitor yet as I don't have the energy to navigate all the options.

And yes, I'm recovering from moving--we sent the stuff to my new place last week where it's being unpacked by my wonderful housemate, friends, and parents. I'm at my parents' for at least another week to rest before going to the new place. It's still stressful so I need lots of rest. I'll do what SickofSickness said and make sure getting out of bed doesn't get hard. I'm also worried about living on the 2nd floor in the new place...

@AndyPandy You write as if you're no longer bedbound--if that's the case, what helped you get past that? I can't access a specialist, so need all the advice I can get!

Hi Singout.

My improvement came with time over many months. Initially I was too sick to do anything much, even in bed. I felt deeply ill and looked and felt like I was dying. I took mainstream multivitamin supplements, garlic tablets, vitamin C, COQ10, fish oil and olive leaf extract. I still take these along with a mainstream vitamin B. I chose a conservative approach as I am very sensitive to medications and chemicals and felt that I would not be able to cope with some of the other options and protocols canvassed on PR.

If I had to pick one thing that has helped me consistently since becoming ill, it has been starting with tiny amounts of stretching and bed based exercise, moving up to gentle yoga when I could get out of bed and onto the floor. I still do yoga every day. I also do breathing exercises and meditation.

I think rest, pacing and avoiding stress as much as possible are vital. Before I ended up bedridden, I tried to do too much and went back to work and ending up paying for it big time. Please take care of yourself at this stage. I understand how desperate one can feel to move past the bedridden stage, but I think it is a mistake to push yourself. I have become much better at listening to my body. My goal is to increase my strength and activity level slowly. I am now the tortoise and not the hare I used to be!

I have definitely improved since the bedbound stage, but have also had many setbacks due to viruses, dental treatment etc which have meant time back in bed. I am now starting to come out of another setback 6 weeks after catching a virus. I am now mostly housebound, but can get out occasionally if I am pushed in a wheelchair. On better days I can walk a few steps outside and I sometimes use a walking frame which serves as a portable seat for rests. For me, this is improvement and I am grateful for it.

Wishing you all the best.

 

[AndyPandy]

I forgot to mention that I when I was bedridden I also started probiotics for IBS symptoms. I still take these.

 

[ahimsa]

@Singout, I think the general advice that others gave is sound. Everyone is different but the general idea -- rest and go slowly -- makes sense to me.

Listen to your body. Most folks who get ME/CFS push too hard, not too little.

The only thing I would add is that you might try sitting in a recliner, or on a couch with your feet up, something like that, when you try to transition from the bed to sitting up. It helps reduce OI symptoms to sit with your feet elevated (not feet on the floor) and leaning back slightly (not straight upright). Siting in a regular chair with feet on the ground doesn't count as "resting" to me because it still aggravates the OI symptoms to some extent.

In fact, I'm sitting in a recliner right now and using a laptop. My feet are elevated and my head is supported.

Then when I have to do anything around the house I do it sitting down. So I sit in the shower, while brushing my teeth, during any task in the kitchen, and so on. I have chairs all over the house and a barstool I can push up to the kitchen counter.

The worst thing for me is standing still. So I avoid it at all costs. The other really bad thing is heat. I do so much better when it's cool and even the cold doesn't bother me.

I do find that a little bit of movement is helpful for me. Some folks like to do floor exercises or even minor stretches in bed. I'm doing a bit better now, and more functional than a lot of folks here, so I can do a little bit of walking. As long as the ground is flat, and it's cool or cold, is okay for me. It's also a boost to my mood to do something. It's a tricky balancing act between resting, which makes my body feel better, and doing some errands/tasks or meeting some friends for a quick lunch or coffee, which makes me feel happier (sense of accomplishment after completing a task or joy in visiting with friends).

As I said at the beginning, everyone is different. Do what makes sense for you. Sending hugs....

 

[xchocoholic]

I'm finding that if I don't get some exercise my whole body gets sore.

Even a short walk helps me.

I'm 58 now tho so maybe my joints stiffen quicker.

 

[Singout]

Thanks, everyone--an abundance of wisdom and good advice! Much appreciated!