Can't find comfortable mattress, in agony when I lie down

[me147]

Bit of a long post so bear with me. Easier to do bulletpoints.

- Severe CFS since early 2010 (bedridden). Had to change mattress once in that time (April 2014), to a very soft 600 pocket sprung memory foam bed which basically collapsed under my weight. Never had a problem with pain when sleeping caused by mattress on either bed.

- CFS improved by September 2016 to the point where I could get about the house by crawling/sitting down and dragging myself along (including stairs) without post-exertional fatigue. Fair enough, I could only take a few steps before my legs became exhausted.

- Pocket sprung bed breaks down in September 2016. Since then, every other bed I've tried out in shops/home is agony. I feel exhausted after lying down, it feels like all my muscles are working and I get the post-exertional fatigue as I would if I'd done too much physical exercise. This pain would begin to set in within an hour of lying down.

- The only place where I feel vaguely comfortable is on my sofa, which is foam on top of pocket springs. It's a big two seater, and one of the cushions was softer than the other. I slept on this side from October to January without much issue until the foam failed and the springs started poking up through. When I slept on the firmer side I found that I was a lot more physically fatigued on the following day, albeit nowhere near the extent of a bed.

- When soft side of sofa broke, had to get it fixed. The guy completely replaced the foam and spring unit, making it hard as a rock and thus unsuitable to sleep on. He did put some foam in the middle, which made the "firmer" side more comfortable.

- Conversely, when I put a duvet in between me and the firmer side of the sofa, I found that it increased my pain and fatigue, seeming to act as another hard layer.

- Should add that I've looked at the likes of water beds, Tempur and specially designed mattress overlays for pressure care. Hate them and get the same pain as on regular mattresses. If I was to speculate, I'd suggest that the pressure relief makes weaker parts of my body have to work more.

- Without the sofa, I probably would be dead by now. I can't even spend an hour on any of the hundred plus mattresses I've seen without feeling like my body has taken a beating, so I don't see how I could have survived. Not a case of not giving the mattresses a fair go, as I tried a pillow top mattress for a month immediately after my old mattress broke down and every night was worse than the night before, with my physical capabilities taking a drastic downturn in that time.

I'm stuck for what to do next. Feel like smashing my head off the wall. Any advice/solutions welcome.

 

[Lynn]

Last year, I spent 8 months trying to find a comfortable mattress. We ordered all of them online. We probably tried eight different mattresses. We finally ended up buying the medium firmness one from http://sedonasleep.com/

I still had to add a memory foam topper to it to get the comfort level that I needed (The soft one from Sedona was to soft for me). But I am glad to have a comfortable mattress finally. If you do a search for mattresses online you will find many companies that offer free shipping and free returns. We did have to pay about $40 to SedonaSleep to return the too soft mattress.

Lynn

 

[Basilico]

If you can't tolerate a Tempurpedic or similar type of mattress, would you consider a hammock? Not the kind that is criss-crossed rope held flat by wooden sticks, but the kind that are made from parachute fabric that people typically use for camping. They are extraordinarily comfy because there are no pressure points if you are lying on them the right way (in a diagonal) - there are videos and articles that teach how to properly hang and lay on a hammock. You could get a free standing frame for it (that people typically use when they want to be in a hammock outside but don't have trees if you don't want to or can't attach it to a stud in a wall.

 

[KristenSF]

I bought one of these about a year and a half ago on Amazon and have been very pleased. https://www.tuftandneedle.com/

 

[Gingergrrl]

@KristenSF, I also have a Tuft & Needle mattress (that we bought from the actual website vs. Amazon) and it is the best mattress that I have ever had. It is incredibly comfortable and the perfect firmness level (and no strong smell for those with MCAS). We had to get a new one (due to mold exposure, no fault of the company) and the process was very easy and the customer service is great. I recommend them highly (and I have no connection or interest in the company in case it sounds like I do)!

 

[wastwater]

I like relyon and usually buy mattress only sometimes you can get returns and larger sizes cheaper,oddly I find the firm more relaxing than medium.

 

[Valentijn]

The only place where I feel vaguely comfortable is on my sofa, which is foam on top of pocket springs.

A similar arrangement might work for you with a mattress. Spring mattresses come in varying degrees of softness, and thick foam toppers can go on top.

I got the thickest, softest foam mattress from Ikea, and the thickest foam topper. We got the adjustable slats for underneath, so I can adjust the support and springiness a bit there as well. I killed one mattress when I was in worse shape for a year or so, and was stuck on the bed most of the time, due to sitting on it.

But basically, there are different types of foam. Some are softer but also break down easily. The soft foams that hold up well are denser and more expensive. So the most comfortable mattress might have a foam which isn't durable. This is why it can help to get a more dense foam in the mattress, then use cheaper toppers for the extra softness, and replace the toppers if they get too compressed. We also rotate my mattress and topper usually when changing the sheets, so the foam in the sections bearing most of my weight gets a chance to recover.

It sounds like pain in general is probably a problem for you, and getting that looked into and dealt with could help a lot with sleep as well. Avoiding inflammation helps me with that a lot, both by avoiding foods that make my body swell, and fish-oil (omega 3) might be helping as well. For deep muscle aches I inject a high dose of hydroxoB12 twice per week. At any rate, pain is something that any halfway-decent GP should be willing to at least try to treat.

 

[Hajnalka]

Hi me147,

Maybe this product review could be interesting for you, it's from a severely affected ME sufferer: http://superpooped.blogspot.de/2016/09/product-review-nrem-sleep-systems.html

It's about a special topper (or mattress? Read it a while back) with interchangeable parts, so you can individually arrange the harder and the softer parts. Apparently the company creates mattresses specifically for people who suffer from chronic pain.

Agree with Valentijn, that it sounds like maybe your pain could be treated (or treated better) as well.

Good luck!

 

[Dr.Patient]

@Lynn Hi, could anyone please share what companies have free return shipping as well. They usually want us to pay for the return shipping. Thanks.

 

[Lynn]

@Lynn Hi, could anyone please share what companies have free return shipping as well. They usually want us to pay for the return shipping. Thanks.

@Dr.Patient I think if you buy direct from companies like Casper, Helix, Tuft and Needle, and Leesa they will pick up the mattress at no charge. They try to donate it to a needy person. You need to verify what their policies are before buying. I can tell you that Tuft and Needle was too firm for me and the Leesa was too soft. But buying like this was much easier than going to stores and trying to figure out what works.

Good luck in your search.

 

[Rrrr]

trying again... i just wrote out an answer and it did not take. starting over!

i got an all natural latex mattress topper, but the place i bought it from also has full mattresses (all latex mattresses).

LATEX TOPPER: we got ours at www.foamsource.com
We got a "firm" 2" thick king sized topper that was about $550, I think. We got one that was too soft for us at first (it was a "medium" not a firm) but then we returned it and got a new one that was firm.

They have a 30 day exchange, not a return. I had to pay shipping. I think it was $60 or so for shipping? They ship thru fedex.

Covers protect the latex from drying out. We did not get one.

I called and emailed many times, talking to Matt each time. He was very kind and understood my main issue, which was chemical sensitivities. I did let the topper outgas for a few months, but I think it really did not need a few months. By the way, latex should not be in the sun for long periods of time, or it breaks down.

 

[Rrrr]

P.S. you can ask foamsource.com to send you a sample of the latex... maybe...?

 

[me147]

Hello guys, thanks for the advice.

A few points (sorry for the essay)...

- When I'm lying down on "new" mattresses, they feel nothing like my old one and completely alien to me. I'd assume that this means that different pressures are on different parts of the body as compared to my old one.

- I know different parts of my body are stronger/weaker than other bits, which would explain why I was able to drag myself up and down the stairs and all around my house on my hands and knees (probably covering a total distance of a few hundred metres daily), yet got post-exertional fatigue if I took more than a couple of steps a day.

- Obviously, over time your body gets used to mattress and adapts to it. When I first became ill, I had no problems lying on either my mattress or my old sofa for as long as I wanted, as I'd owned both for a significant amount of time before becoming ill.

- Old mattress was 600 pocket springs, with memory foam in a "quilted" design on top (as opposed to tufts). Picture of mattress enclosed in below link, of course they don't make this mattress any more because that would be too easy. Very soft mattress, if you sat on the edge it basically completely collapsed from under you.

https://www.gumtree.com/p/double-be...d-with-2-under-bed-storage-drawers/1202774825

- 600 pocket springs is the minimum amount of pocket springs you can get in a mattress, very rare to find anything below 1000. Very few options online, and as Dreams won't tell me the spring tension or density of memory foam layer etc. impossible to make like for like comparison. Interestingly, when we got the unit replaced on the sofa seat which broke, I asked to see the pocket spring unit and worked out proportionately how many springs it would have been if it was the same size as my mattress, and it was something like 650.

- This is the closest thing I've seen online to my old bed. Very soft open coil system from reviews, memory foam layer on top in similar pattern to old bed. Will probably order this mattress tomorrow, and if it doesn't suit I will add layers of foam or walk on the bed to find a level of comfort.

https://www.mattressman.co.uk/mattresses/snuggle-beds/46233-127180/memory-luxe-single-mattress.aspx

- Adding additional layers of foam seems to make the problem better, but putting a duvet/pillowtop between me and the mattress makes the pain worse.

- I haven't ruled out the alien feeling being a physical problem, to where maybe my body/muscles could be "tensing up" and thus expending more energy. Not sure if a muscle relaxant would help.

Thanks.

 

[Dr.Patient]

@Dr.Patient I think if you buy direct from companies like Casper, Helix, Tuft and Needle, and Leesa they will pick up the mattress at no charge. They try to donate it to a needy person. You need to verify what their policies are before buying. I can tell you that Tuft and Needle was too firm for me and the Leesa was too soft. But buying like this was much easier than going to stores and trying to figure out what works.

Good luck in your search.

Thank you!