1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

How's Your Back Holding Up After Years of Crucial Bed Rest ?

Discussion in 'General ME/CFS Discussion' started by rosie26, Jan 19, 2014.

  1. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    I have never been someone to lie down during the day - until I got ME.
    These last 12 years have been unbelievable, the hours upon hours in bed.
    So weak I even ate my meals in bed. Even today I still bring meals to my bed.

    I have noticed just this last year I have been getting sore in the back.
    I have never had a choice, but to lie down. If I don't lie down my body will collapse me down.

    How is your back and are you able to get by just sitting or do you need the lie down kind too. ?
    taniaaust1, leela, Tito and 1 other person like this.
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,475
    Likes:
    1,080
    Florida
    Good point. I don't stay in bed very long but I lie down frequently for 15-90 minutes at a time due to oi/pots.

    My back typically feels sore and achey if the surface I'm laying in isn't soft but supportive.

    I'm 58 now tho and recently noticed that I'm not as muscular as I was even 2 years ago.

    I'm sure mild back strengthening exercises could help but my energy level isn't enough to meet daily requirements much less exercersizing.

    Electric stem sounds like a good option tho. Getting thus with heat usually takes all the stress out of my back.

    tc .. x
    rosie26 likes this.
  3. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    I was having this problem as well until I bought a new mattress. Now it's better. I also bought a back magic stretcher which really helps get the kinks out and seems to bring about better blood flow The stretching feels good.
    rosie26 likes this.
  4. Raindrop

    Raindrop Senior Member

    Messages:
    122
    Likes:
    110
    USA
    Rosie,
    So sorry to hear you are getting very deconditioned. I want to caution you to everything in your power to
    do what you can do get some strength. I need to be talking to myself also about this. I think this is a topic
    far underestimated for severe ME pts.

    I used to have a friend in my community that was in bed quite a bit.
    Then she lifted a patio brick that was too heavy for her and she developed SEVERE severe back pain.
    Things spiraled out of control from there, making this story short. Ultimately she couldn't take but about
    2 steps from her bed and became a complete invalid. She chose to take her life. This was the second
    friend I had lost to ME in about 4 years. Her suffering terrified me and I vowed to
    try to keep my muscles in better shape. But you understand how hard it is to do even floor exercises when
    you are extremely ill and in pain. Anyway, i just tell you this so that anyone reading this remembers how
    FRAIL we really are and how much we need to S L O W LY do what LITTLE we can. Even that is better
    than nothing out of bed. Also there are some exercises that you *can do in bed*. A good Physical
    Therapist may be able to teach you/us some of these. Now for ME to do what I am saying here!!

    I have found that a type of chair that partially reclines at my desk helps me a LOT. A lot of the time I cannot
    be upright, and would rather be lying down. When the need to
    lie down isn't extreme, sometimes this chair helps. Otherwise I could not ever sit up
    for most of the day. It was
    expensive though ($800?) and got it at the Healthy Back Store.
    Don't know if that would help.

    Mij, what is a back magic stretcher?

    TAke good care!
    leela, rosie26 and brenda like this.
  5. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    I have recently joined the 50 year olds :D I wonder if they will find out how to stop the body aging before we get too old @xchocoholic

    I haven't heard of Electric Stem. I think your lying down in 15-90 minute breaks is probably a good thing to keep the back from seizing up too much. I should start to remind myself that. :)xx
    xchocoholic likes this.
  6. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    All of you are reminding me that I need to change quite a few things. Mattress is one of them too. :) Thanks Mij xx
    Mij likes this.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,475
    Likes:
    1,080
    Florida
    Lol. I'm all for that majic anti aging pill.

    I've had electric stimulus many times at the chiropractors or physical therapists.
    I really should see what home versions are available nowadays. I had a TENS unit about 15 years ago. It helped but not nearly as much as going in for treatments.

    Welcome to the 50's. : ) tc .. x
    rosie26 likes this.
  8. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    Raindrop, here is the youtube demonstration. I've been using this for several years, I started slowly at the beginner level and now I can lie on it for up to 10 minutes. I What I like most about this is that I feel an increase in blood flow which gives me energy, hard to explain. It totally loosens your shoulders too.

    Hanna, Raindrop and rosie26 like this.
  9. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    Oh yes absolutely. I also got rid of my dust mite infested duvet with feathers and bought a silk duvet. I no longer wake up stiff and stuffed up with red eyes. My goodness, I didn't realize how little changes can make a such a big difference I guess I was allergic to feathers but didn't know it until I got rid of it.
    leela and rosie26 like this.
  10. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    I recently bought a lovely silk like duvet too Mij. It is Heaven. I can't believe I was sleeping for years with too short a duvet cover and constantly feeling cold at top and bottom. ! ( It was a childhood duvet cover that I still had for over 40 years and kept recovering ) I finally let it go and now am in utopia.:D ( I hope that also meant heaven).
    Mij likes this.
  11. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    I love the way it keeps the body cool but warm enough to sleep with my windows open when it's freezing out. It is heaven.
    rosie26 likes this.
  12. Raindrop

    Raindrop Senior Member

    Messages:
    122
    Likes:
    110
    USA
    What kind of duvet are you all talking about?
    I have a down one that I keep cleaning and have had for centuries. Is the
    dry cleaning (organic cleaner) enough to stop any issues? Not sure what you mean
    by a "silk duvet"?? I know what the duvet COVER is , but not sure about
    the inside duvet, unless it is feather....??? Can you explain? Thanks!
    rosie26 likes this.
  13. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    The duvets have silk in them, the best ones are filled with Mulberry long strand silk. They're recommended for people with allergies, they do not harbor dust mites. I found it when I turned 50 and started experiencing hot flashes, it's great for regulating body temperature.
    Raindrop and rosie26 like this.
  14. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    Raindrop

    You have got me doing exercise today:D

    I used to do the 5 minute exercises and it really use to make a difference, even that short amount of time.
    I had a horrible relapse 2 years ago which knocked my confidence a lot.

    I think I have probably been over conserving, and time to start the exercises again. I have always had a tremendous fear of returning back to the severe years and I think I have been doing more resting perhaps than I have needed and making myself more weaker perhaps. I do go out in the mornings all going well - so not bed-bound all day.
    I think I really have just have lost the plot a bit the last 2 years and need to get back to what I used to do.

    Appreciate what you said Raindrop, it's woken me up. :) xx
    Raindrop likes this.
  15. Raindrop

    Raindrop Senior Member

    Messages:
    122
    Likes:
    110
    USA
    Rosie,
    Glad if anything I said helped to wake up! Now if only I can listen to what I said to you MYSELF!!
    Mij (and Rosie)
    I quickly looked up silk duvet. Wow.......Do you put a cover over it? I like to layer each thing
    separately, because I get hot/cold all night. Can you put a cotton duvet *cover* on TOP of the
    silk duvet without it slipping off? Which - if any - on-line company do you suggest? They look
    hugely expensive!! Maybe you have some suggestions. I live in a warmer climate (even in winter)
    so maybe I would get the medium weight or ?? One company I saw had a lighter one and ALSO
    a "winter " one and they could be attached. But would cost a fortune!!
    This is SO new to me --Silk Duvets!! Ahh....they may be just what would ease my body?
    rosie26 likes this.
  16. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    They recommend that you use a lower thread count cotton duvet cover so that it can breathe properly.

    I purchased mine at Silky Bay in Montreal for a decent price. I bought the heavier weight one because I live in Canada. . Yes, they usually come in light and heavier weight. My sister lives in Saudi and bought the lighter weight one and just loooves it.
    rosie26 likes this.
  17. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    I said mine was silk like but I don't think it is the real deal. It just feels silky. I should have a look. I can't find the labels. The duvet inner is sewn into the duvet cover of mine.
    It cost me over $100NZ but wasn't over $200. It was a luxury buy, for me, but I had some extra money at the time.

    Mij might be able to tell you more Raindrop.:)
  18. leela

    leela Slow But Hopeful

    Messages:
    2,367
    Likes:
    2,689
    Couchland, USA
    Until I developed latex allergy I used to keep these stretching bands next to the bed and randomly do a few repetitions of whatever felt nice.
    They come in different tensile strengths, so you can start very light. Plus they don't take up any room at all, weigh nothing, and can always be nearby.
    http://www.amazon.com/Thera-Band-Li...ise-and-fitness&ie=UTF8&qid=1390189908&sr=1-5

    I'm glad you started this thread; I've always meant to search for non-latex ones and you've just reminded me.

    ETA oh and @Raindrop i bought my silk duvet at the vermont country store--i waited til they had a sale. if you get on their email list, they'll alert you of sales. i bought it there because theirs don't stink of chemicals like some do.

    Oh! Another ETA: latex-free ones here! yay!
    http://www.thera-band.com/store/products.php?ProductID=28
    rosie26 likes this.
  19. Mij

    Mij Senior Member

    Messages:
    595
    Likes:
    608
    I researched online first to educate myself about the differences because they have different price ranges. Some run up to $700! I think the store I purchased mine from have a direct supplier in China because their prices are good for Mulberry silk.
    Raindrop and rosie26 like this.
  20. rosie26

    rosie26 moderate ME

    Messages:
    915
    Likes:
    1,043
    NZ
    @leela I tied together a wide band of elastic that you use in clothing and use it for arm and leg strengthening, but it has been sitting in my cane basket of nic nac's for the last 2 years, but used it today.
    I feel good about starting this exercise again. I just needed some encouragement I think :)
    leela likes this.

See more popular forum discussions.

Share This Page