Sleep Position Dilemma

I was going to wait to post until things settled down with a certain poster, but decided that posting a new topic would help push the latest "goofiness" further down the page -- I want to do my part to help in that endeavor.

I'm facing a bit of a dilemma and hope that perhaps somebody here might have a suggestion for me.

Way back when I first noticed difficulty breathing at night, I found (without really realizing it outright) that laying on my left side was better. My sleep study seems to confirm that as they listed more issues when on my right side and back. In truth, I had little supine sleep during my studies and that's noted in my report. But it is very specific and obvious that I do better laying on my left side. After all these months, and the cpap, bipap and now vent, I still find that to be true -- I am more comfortable on my left side and find breathing much easier.

Here's the problem -- severe muscle pain in my left thigh, right where I'm laying on it. It wakes me up and I find I HAVE to turn to either my back (big no-no I know) or my right side.

I've had muscle pain for a while and take two medications for it every evening to alleviate most of it so I can sleep.

I think the possibility exists that I am sleeping so well on my left side that I stay there too long, thus aggravating my damaged muscles causing pain that wakes me up. But in truth, I sometimes find pain almost as soon as I lay on it. I try to endure it, but sometimes I just HAVE to flip on my back or right side because the pain is so severe.

Any opinions or suggestions on this one? It's coming down to choosing between easier breathing and pain. I know it's out of the norm for here, but there are so many knowledgeable and kind-hearted people that I thought I'd give it a shot.

Thanks in advance for any input that can be given.

Madalot. if your vent can support your breathing on your back, or on your right side, you can lie on either of them.
If the side effects of the vent's work while you're on your back or right side are too bothersome then you have to ask yourslef which is worse.

Don't assume your ventilator won't keep you breathing properly if you're on your back or side.

O.

ozij wrote:Madalot. if your vent can support your breathing on your back, or on your right side, you can lie on either of them.
If the side effects of the vent's work while you're on your back or right side are too bothersome then you have to ask yourslef which is worse.

Don't assume your ventilator won't keep you breathing properly if you're on your back or side.

Hi ozij -- thanks for chiming in and so quickly too! You bring up a valid point -- being on this ventilator SHOULD make this a non issue. But even on the vent, I can tell that my breathing is much easier on my left side, rather than my back or right side. I DO turn over on my right side because I have to, but my breathing isn't as comfortable that way, even on the vent.

I had a night a while back where I slept on my back a lot (I was listening to my ipod and fell asleep, but I was all hooked up) and I had my pulse ox monitor hooked up. I was a little surprised at the number and severity of the desats from being on my back so much. I was thinking the same thing -- shouldn't the vent be taking care of this?

Maybe this is the time to ask my doctor about more tweaking? The problem there is she kind of left that up to the RT and THAT RT has flown the coop. The new one isn't familiar at all with my condition OR patients like me on a vent. It's not an ideal situation for sure.

I see the problem now.

Perhaps you could contact the doc about a recommendation for a knowledgeable RT? Do you think she is aware there's no one about with professional knowlege to see what you need?

O.

ozij wrote:I see the problem now.

Perhaps you could contact the doc about a recommendation for a knowledgeable RT? Do you think she is aware there's no one about with professional knowlege to see what you need?

Yes, she's aware of it. This is where we have a really nasty situation. Changing DME's could be tricky right now and even though I CAN and probably SHOULD change because of the RT situation, I have made the decision (right or wrong) to stick with the current DME.

I think, based on what you've said here, and because I trust you, that my first step should be to contact my DME and let them know that I am having some issues and see if their DME can step up to the plate and try to help me.

Either way, I think I'll let my doctor know, too, to see if she has any ideas/suggestions for tweaking. If either the RT or my doctor tells me what to change, I can make the changes myself since I full access to the menus.

Ozij -- thanks for helping me. I really appreciate it.

In the meantime, would using a body pillow help you to be more comfortable on either your left or your right side?

Bons wrote:In the meantime, would using a body pillow help you to be more comfortable on either your left or your right side?

Hi -- can you tell me what you are suggesting in the way of positioning the pillow? I don't have a body pillow, but know what they are. I'm not sure how it would be used to solve the problem.

Right now, I sleep propped up on two pillows and whether I'm on my right or left side, I push myself as high on them as I can. I have a smaller pillow between my head and the headboard so I don't bang my head. Every time I turn over, I take a few seconds to turn the hose and re-prop myself up as high as possible as I tend to slide down during the night.

In truth, if not for the darned muscle pain in my left thigh, I wouldn't care about staying on my left side all night.

I'm wondering if I should try one of those pain patches on my thigh before bed. That might be a temporary solution.

I'm trying to picture you, lying on your left side, propped up on 2 pillows. When I tried that, I felt strain in my left waist, and tried it with my legs straight and then knees slightly bent. I found the weight of the top leg was relieved by having a firm pillow in front of, or between my knees, so my top knee could rest on it. Then I put a small pillow under my left waist, and that felt even better.

Similar to this:

viewtopic.php?f=1&t=47818&p=433694&hili ... ng#p433694

Or can you experiment with a mattress pad that will give you more cushion under your left hip and leg?

KatieW wrote:I'm trying to picture you, lying on your left side, propped up on 2 pillows. When I tried that, I felt strain in my left waist, and tried it with my legs straight and then knees slightly bent. I found the weight of the top leg was relieved by having a firm pillow in front of, or between my knees, so my top knee could rest on it. Then I put a small pillow under my left waist, and that felt even better.

Similar to this:

viewtopic.php?f=1&t=47818&p=433694&hili ... ng#p433694

Or can you experiment with a mattress pad that will give you more cushion under your left hip and leg?

That's for sharing this Katie! I really appreciate the input.

Perhaps trying a pillow under or between my legs might be an option. I'm not sure the larger pillows on either side would be a good option. Having a neuromuscular disease makes moving in bed difficult at best. I have a very hard time turning over and I fear pillows on either side would make it more difficult. Although -- sitting here thinking about it -- it's possible they would make moving EASIER. Hard to say.

I think I like the idea of a pillow either under my leg thigh or between my legs. I HAVE found that shifting slightly to get my right leg off my left (basically laying in a way that both legs are on the bed instead of on top of each other) does relieve some of the pain, but not all of it. And it's just my thigh muscle that hurts so bad. In truth, it's hurting right now sitting up.

Madalot, Having degenerative disk disease of the lumbar spine, AND Multiple Sclerosis, I think you might benefit from my experience. I went for a pain consult with a pain specialist after suffering from pain in the outside of BOTH thighs for years. It made it more and more difficult to sleep because I was turning over a lot, and the pain was waking me up in spite of taking pain meds. I would wake up in such pain to find I was literally groaning loud enough to wake myself up!

I found out that the pain was caused by muscle imbalances causing inflammation due to both my disk disease, and MS. The root cause was the disk disease, but MS magnified the pain. I had to treat both to have optimal success. After a couple of different options were tried, a solution was found. I have now gone from taking maximum doses of anti-inflammatory prescription drugs which gave me GERD which even prescription drugs wouldn't touch, to taking only the occasional tylenol at bedtime. Because everyone is different, I can't state that what helped me would work for you, so I won't go into detail, but you might find a consultation with a pain specialist to be helpful. I was skeptical about the entire process until the day I woke up and realized I didn't hurt!

Thanks for the input, DreamLady. I appreciate your taking the time to share your experience with me. I'm really glad you found a way to overcome the pain! That's great.

If I can find a way to handle this without involving another doctor, that would be my preference. That's not to say I wouldn't go to a pain specialist, but I already see so many specialists that adding another doctor to the mix isn't very appealing to me.

But I'll definitely keep that in mind if it persists and/or gets any worse, or the suggestions I get here don't solve it.

Thanks again. I appreciate the help!!

Electrolyte and mineral imbalance in the body can often result in muscle cramps. You may want to review your diet to make sure you are balanced in this area. Magnesium rich foods, or supplements, often make the cramps go away.

Another thought is to look at this from a physical therapy perspective. You may be able to come up with some exercises that strengthen your leg muscles that will relieve the cramping.

HoseCrusher wrote:Electrolyte and mineral imbalance in the body can often result in muscle cramps. You may want to review your diet to make sure you are balanced in this area. Magnesium rich foods, or supplements, often make the cramps go away.

Another thought is to look at this from a physical therapy perspective. You may be able to come up with some exercises that strengthen your leg muscles that will relieve the cramping.

Interesting thoughts here, HoseCrusher. I've spoken with my neurologists about this and they both agree that these pains are the result of my muscle disease, but it wouldn't hurt to look at it from other viewpoints.

I really believe, however, that sleeping on my left side is what's causing the pain the way it is at this point. My right thigh isn't really bothering me -- just the left one.

Thanks for the input!! Appreciated very much.

I want to thank everyone that has taken the time to chime in on this question I have. I am so overwhelmed that people are trying to help me, especially given that my question is out of the norm here.

You all are great.

Madalot -

I generally just read and don't have much to add but this has been a "sore" subject for me since I started on my APAP.

My hips got much worse as my sleep got better. Doctor diagnosed bursitis in both hips. I've done some accupuncture for it but I've also used the following book:

http://www.amazon.com/Trigger-Point-The ... 644&sr=1-1

The book is easy to read ... find the chapter that talks about where your pain is and you can find the trigger points associated with the pain. I bought the book to help my husbands back, but it's one of my all time favorites for self care.

I've been working the glutes (max and min), IT bands, the trigger points along the spine and a host of others with this:

http://store.tptherapy.com/ProductDetai ... =TPT%2DTPB (these folks have a number of products that I've found valuable ... I started using them when I was walking marathons).

I basically stand up against the wall and work the ball into the sore points. You can use a tennis ball, but it tends to collapse. This ball holds up and allows you to put pressure where you need it.

I've gone from waking up numerous times a night in pain unable to find a comfortable position to sleep in even with two advil to sleeping soundly until about 4 or 5 am (almost getting up time). The days I don't do the therapy, I still have difficulty, but it's not NEARLY as bad.

So..just another thing to check out ...

Sortasleepy (I probably need to get another name ...doing well on the sleep angle)