Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Can you run ? Move quickly ?

Discussion in 'Neurological/Neuro-sensory' started by xchocoholic, Nov 29, 2013.

  1. Hanna

    Hanna Senior Member

    Jerusalem, Israel
    No doubt I have also this weird thing, not able to move quickly. It acts as if the muscle was suddenly stucked. Only doing slow movement is the rule for me. I may increase the duration of the movement/effort (...and then will face PENE), but in no way can I do the same with speed. I noticed it is not even related to increase of cardiac rythm. It feels like speed drives some disorientation to the brain, and muscles will be like "shocked" and petrified.
    of course this is no science, just the way I feel my body.
    xchocoholic likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Cornwall, UK
    From what you say I would say yes - get a cane/walking stick. They don't cost much, come in a wide range of styles and types, and make a huge difference. I've been using one for years. I also use mine to hook things off shelves, to pull things towards me instead of getting out of a chair when I'm tired, and sometimes hook it over something to pull myself up (obviously one needs to make sure that it is something strong/stable enough!).

    I call mine my multi-purpose tools!
  3. peggy-sue


    Michael's Mum was a "walking stick multitasking expert".:D

    She'd stand in the middle of her kitchen and open cupboards with it, shove the laundry along the line, load the machine, put the lights on and off, lock the door, poke her pots of cabbage, boiling away for 6 hours with it...

    She was a little miracle with her pokey stick.:love:
    xchocoholic and MeSci like this.
  4. jann1033

    jann1033 Senior Member

    Yeah, I think I'm being kind of dumb about it. Since I look fine (if/when people see me Lol) I have this thing about people thinking I am "faking the need" ( most of my family and friends don't get it at all, partially cause I've given up explaining it) . that plus its something that means to me this has progressed and I have a hard time admitting that. so now I use walls, husband, whatever is handy but husband starts talking and wanders away then I really feel like I could fall so that probably would be worse. Blah, one more thing.
    xchocoholic and Valentijn like this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Cornwall, UK
    I think that a lot of us have a very independent character and like to try to do things ourselves rather than ask for, or accept, help, even when we need it. So I get quite cross when I go to hook something off a shelf in a shop and the assistant rushes over to get the item down him/herself. Maybe they don't realise how deftly I can do it (and how good it feels to overcome a challenge)! I hate appearing helpless.

    That said, I WISH people would understand my need to go slowly and not rush me, as a few seconds of excessive acceleration leave me exhausted and very hot, barely able to even stand.

    But then, very few people can really understand what it feels like to have ME unless they have it.

    At least you don't have to explain to inanimate objects like walking sticks why you need help and what kind of help, and you don't have to feel helpless and humiliated with them! They are tools to increase our independence, just as pacemakers are to heart patients and prosthetic limbs are to amputees.
  6. xchocoholic

    xchocoholic Senior Member

    I finally got a peek at this study. Thanks. This study just documented the problem and recommended more research.

    I started having more problems with this about 2 weeks ago. I've been walking about 20-30 minutes every day or at least every 3 days, pem permitting, for about 10 months now and all of the sudden my legs don't want to respond properly.

    I can walk but it feels like my upper thigh muscles aren't strong enough to carry me. Which is impossible because I've been walking regularly for 10 months. Weird !

    There's a good possibility that I'm getting too much gluten in my diet and my ataxia is flaring. Eating out has always been my biggest source of gluten cross contamination. So regrettably I'll start there. Rats. I was enjoying an easier diet plan.

    Anyone else notice slowed movements ?

    Btw. A cane won't work for me because my arms are too weak and ataxia can't be managed by a single support item. The swaying will take place unless all possible swaying routes are blocked. So it would be like trying to balance a ball on top of a stick. Lol.
    Last edited: Dec 7, 2014

See more popular forum discussions.

Share This Page