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Those With Joint Hypermobile Eds Type Iii & Spine Issues


Maxine
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HI ------- :(

I can't believe it, but my EDS seems to be progressing so quickly. After the geneticist confirmed the diagnosis I asked him several questions, and one of them being: why does this seem to be progressng so quickly in the last couple of years?

He said I had it all my life--it's genetic, and that I'm getting older and I'll have more pain and tolerate gravity less then I did when I was younger. He said the surgery on my spine secured the middle part of my neck--c-5,6, and 7 with a titanium plate, so the areas above it and below it are worked harder, and because of the EDS will become more unstable. My spine is affected a lot from the EDS, along with my shoulders. My whole body is affected, but this is the most noticable area affected when I try to sleep.

NOW THE QUESTION--------------------how and the heck do you sleep? I can't sleep on either side-- :unsure:

everything is too loose, and I end up in so much pain. A friend of mine from NY who has EDS said she has a Tempur-Pedic Bed. But--------------------they cost a whopping $1800.00 for a queen which is the same size we have. I need to sleep on something that absorbs my body better. I can't sleep with my husband---I keep him awake...............If it's not from tossing an turning from the EDS/spine issues, it's the sleep apnea, although he rarely hears me snore, I just wake up when I stop breathing---then more tossing and turning.

Now I know why my hair looks like someone came in the middle of the night and messed up my hair.

Maxine :0)

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For less $$, you can get a 3 inch memory foam mattress toppper. We had one for a few years until it wore out, and it was awesome sleeping on it. We can't afford the tempurpedic either...at least not now. It's on our wish list. For now, I just have a tempurpedic pillow.

Nina

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Thanks Nina and Lois-- :)

We talked about a mattress topper----------and this is something affordable--- :) However, I'm not so sure about our bed---it sags. It's only abut 3 years old, and we are really disappointed with it. It's a pillow topper, but we were not told that the mattress could not be turned------dumb consumer on our part. We just didn't think. We usually know better. I'm one of those who is so careful usually---------- :unsure:

Well is good the hear you thought the mattress topper was awesome. It makes me feel more confident about buying one-------------------It's probably our only option right now----money is tight :(

Lois, I had to sleep on a firm mattress during my sleep study----it was terrible. I'm glad your mattress has worked out for you.-- :)

Maxine :0)

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My trainer just got a tempurpedic mattress and he LOVES it. He was severely injured in the first Iraq war, and said that the aches and pains are much improved on his new mattress--he's had it two weeks.

I loved our topper. We bought it online...but for the life of me, I can't remember where. I did lots of research and you should understand that the foam comes in different densities. Some are too squishy for long term use, and others are too firm. I looked up what I have left in my bookmarks-and I do still have a link or too. PM me if you want them.

Nina

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maxine..

yea i was going to suggest a mattress topper as well.. also.. if your mattress is sagging.. can you put like a um board between the boxspring and mattress to firm it up a bit? and also the matress topper...you can go to walmart they have memory foam pillows that supports your neck for about 20-40 dollars apiece.. depending on the type that you get... they are great..

I also got a reall cool pillow for christmas that is great for support as well.. ill find the website and you can check it out.. ill email it to tto you..

ohter thought if you need more cusion and cant get a new mattress right away.. but waht about a down matres topper ALONG with the memory foam topper? just for a bit more cushion.. just a thought..

hope that you find a soultion.. and GIRL!! get a cpap machine for that sleep apnea! it may make a difference in your quality of sleep! good sleep==== some pain relief dear...

hugz

dizz

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I don't like the tempurpedic. I have lumbar issues, and my lower back just sank in too much, waking me up with sciatica. I returned my tempurpedic and I sleep on a sealy inner spring-- it's "firm" with a topper so I don't get pressure points. This way my back is better supported. It's low-tech, but works for me.

I sleep on my back with two pillows under my knees, and one under my feet. I have u-shaped neck pillow which supports my neck just so. just plain fiber-fill, but I took out some of the stuffing till it was the perfect height. I also sleep with a soft cervical collar, to stop my head from lolling to the side (it's really helped with neck and head pain.) Fortunately I barely move when I sleep, so I usually stay in this position. I sometimes have to move the pillows around a bit to support different parts of me.

I also can't sleep on my side, without hips, shoulders, neck and back slipping.

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Thanks again for all the information--------------panther.gif

Dizz, I went for the c-pap study and I couldn't tolerate any of the masks. However, If I can get the gel mask that goes over the nose it should work out. I almost tolerated the nose mask during the study but it was on so tight it bruised the area around my nose from the pressure. I was sore for a few days. Dizz----your so nice---thanks for the info............

During the study I had just started to doze, and apparently I started to have a respiratory episode and they adjusted the air flow too quickly and it exploded out my mouth and woke me up. Then the mask got so painful I couldn't complete the study. The other two masks--the one over the mouth and nose, and the one that has two little plugs that go into the nose were not tolerable at all.

I still need to go and complete the study to get the c-pap machine. I need to be fitted.

I'll probably go with a mattress topper, or if we have enough money I'll get the other mattress from the link you sent me Nina--- :( Nice of you to look that up for me-- :)

Thanks to you too Mkoven :) -------------I have a soft cervical collar, but I need a new one. It just stinks that we have so much slipping................... :unsure:

Thanks again,

Maxine :0)

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