Hi Everyone

KnittingDragon
KnittingDragon Posts: 12 Member
I am Hilary, 59 and a sufferer of CRPS (Complex/Chronic Regional Pain Syndrome), CFS, Hypothyroidism and in April I broke my left femur just above the knee and had to have it operated on (three weeks in hospital and still having to use a walking frame!)

I hope to chat with others who find themselves laid up through no fault of their own.

Replies

  • SerenityVS
    SerenityVS Posts: 8 Member
    Hi Hilary
    I have FMS/CFS and had ankle surgery in '21. Was not a fun time, but in some ways, I think I coped with the pain better than most would have because I was sort of used to it.

    We had to buy our own wheelchair because the hospital didn't provide one. They just told me to stay in bed for 8 weeks. I was pretty sure I would have lost my mind.

    Thing was that wheelchair broke on one of our outings.

    My giant of a boyfriend gets a bit too overenthusiastic with the getting from A-Z and decided to take the wheelchair off onto the road without using a dropped kerb. *Crunch* One wheel folded beneath me. Luckily we got picked up by two gym deities walking by who put me and the chair in their car and took us home.

    A friend loaned me a new chair about 100X better for the next few months. I couldn't thank her enough. There's only so much Netflix and Disney+ I could watch before I was pleading to be taken outside again.

    Anyway, I'm on a walking stick now. The Fibro has been fibroing hard. Still spending most days laid up. Just need to find that balance of doing some activities without wiping myself out for a day afterwards. Not sure how to do that yet. Working on it.
  • Corina1143
    Corina1143 Posts: 3,603 Member
    @serinityvs I've had fibro and cfs for about 20 years. It's much better now, but it's still hard to know how much I can do today without ruining tomorrow.

    @KnittingDragon hope you're doing well! Are you able to get a little chair exercise in? Or is that painful too?
  • SerenityVS
    SerenityVS Posts: 8 Member
    @Corina1143 How did you get much better? My mother has Fibro and ME and has just gotten worse over the years. This scares me so much. I keep getting told to regularly exercise but then I am wiped out for days and can't do basic things.
  • KnittingDragon
    KnittingDragon Posts: 12 Member
    SerenityVS wrote: »
    Hi Hilary
    I have FMS/CFS and had ankle surgery in '21. Was not a fun time, but in some ways, I think I coped with the pain better than most would have because I was sort of used to it.

    We had to buy our own wheelchair because the hospital didn't provide one. They just told me to stay in bed for 8 weeks. I was pretty sure I would have lost my mind.

    Oh Gods, 8 weeks in bed, yep I would go insane as well! At least I am downstairs (although my seat is also currently my bed - got to love a riser/recliner chair!)

    Being used to pain does make things a little easier, but it is still annoying not to be able to do things.

  • Corina1143
    Corina1143 Posts: 3,603 Member
    @serenityvs
    Ever heard of Jacob Teitelbaum? He is a Doctor who had fibro himself. He specializes in it. Maybe retired now. He wrote several books, mostly each one pretty much repeats. You don't need to buy one of his books if you can get it at the library. Quick read. Just a few hints, but all very good!
    Get a cheap pedometer--mine was $10 at Walmart. Wear it to count Your steps for a week. Average that.
    Take that many steps each day. It will be very hard some days to walk that far, and you will want to do much more some days. I started with 300 steps a day. It took me a month or so to get used to exactly 300 a day. Then add a few steps--maybe 305 a day for a week, 310 for a week. When it gets too hard, quit adding until you can do the same number easily. Don't do more! It ruins tomorrow.
    Absolutely 0 sugar substitutes with the exception of pure stevia. Little sugar.
    Teitelbaum has hints for improving energy.
    I've talked to lots of people his hints have helped. Strongly recommend him.