1. Patients launch $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!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Can you run ? Move quickly ?

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

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,825
    Likes:
    4,586
    Cornwall, UK
    I'm guessing that you're referring to 'Adaptive Pacing Therapy' (APT) as referred to by the Wessely school, e.g. in the misleadingly-named PACE study.

    How dare they steal our word for our management tool and misrepresent it?!
     
    xchocoholic and aimossy like this.
  2. aimossy

    aimossy Senior Member

    Messages:
    2,867
    Likes:
    3,867
    NZ
    yeah @MeSci EXACTLY thankyou.it grates me for some reason! it's convoluted and messy for me.:D
     
    xchocoholic likes this.
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,669
    Likes:
    12,439
    Logan, Queensland, Australia
    That's what they do. They take a term, word or definition, redefine it, then use it in such a way that people can misinterpret what they are saying, and draw the wrong conclusions in their favour. Its a hybrid between spin and obfuscation.
     
    taniaaust1, Radio, aimossy and 2 others like this.
  4. aimossy

    aimossy Senior Member

    Messages:
    2,867
    Likes:
    3,867
    NZ
    Its very annoying and causes sooo many issues :bang-head: not having clarity of the issues makes a mess for people trying to change things.
     
    MeSci likes this.
  5. Ambrosia_angel

    Ambrosia_angel Senior Member

    Messages:
    440
    Likes:
    234
    England
    I haven't ran since a few days before I got ill which was over a year ago. I miss it a lot.
     
    xchocoholic likes this.
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Me too.

    I don't know if I said this already in this thread but I have a left bundle branch block that might explain why I can't run. I can't do the treadmill heart function test because my ekg goes bananas. This started with me/cfs and was initially dx as mitral valve prolapse at the Mayo Clinic.

    I was doing aerobics 3 times a week prior.

    Bummer ... x
     
  7. svetoslav80

    svetoslav80 Senior Member

    Messages:
    492
    Likes:
    154
    Bulgaria
    I can't run/jump/lift heavy objects anymore because of my hypersensitive oesophagus. If I do, I'm half alive half dead for at least 2 weeks.
     
    golden and xchocoholic like this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    While I've known better than to try it for years, I think I could still run a short distance. There would just be all PENE to pay later. Unfortunately, this thread has got me wondering how far and how fast I could run. I WILL resist the temptation to find out.

    I helped my Dad carry a heavy object a few years ago and I did fine until my arm muscles just suddenly collapsed. I had to set it down where we stood.
     
    xchocoholic likes this.
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Hi,

    Does anyone know if this symptom has a name or names ?

    This seems like an important symptom that should be included in the me/cfs definition. Maybe it's in the ccc but I don't know the medical term.

    I'm not sure what other illnesses include this symptom. Does everyone with dysautonomia have this ? Everyone with ataxia ? MS ? ????

    Does everyone with this symptom get pain in the base of their skulls ? Initially, 1990's, I took Diamox for this but stopped. I can't remember why. Probably side effects. Ice packs help too.

    Inflammation indicates infection tho, right ?

    tc .. x
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,825
    Likes:
    4,586
    Cornwall, UK
    Not necessarily. Lots of things can cause inflammation.
     
    xchocoholic and Radio like this.
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Hi @MeSci,

    I shoulda said "inflammation in the base of the skull not brought on by injury".

    Come to think of it tho I've had multiple injuries, thrown on head + car accidents/whiplashes to that area. But that's been 10 years now.

    Sometimes I wonder how I'm still alive. ;)

    tx ... x
     
  12. belize44

    belize44 Senior Member

    Messages:
    195
    Likes:
    183
    Florida
    I can most certainly relate to what I have read here! The other day I impulsively decided to take a walk. I usually just walk out to my mailbox, which is about half a city block away. Just doing this sometimes gives me shortness of breath and chest pain (muscular) When I decided to take this walk I was feeling just so-so, not great but I did it. Three days later, I crashed big time. Heart palpitations, chills, mouth sores, unable to get out of bed, weepy...it was awful.
     
    xchocoholic likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,825
    Likes:
    4,586
    Cornwall, UK
    Head/neck injuries can cause permanent damage, for example to the HPA axis. I think the threads relating to this refer to the pituitary, so you could try searching for that. It's interesting stuff.
     
    xchocoholic likes this.
  14. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    @MeSci,

    Hi again. Do you know what medical terms are used for these symptoms ?

    I'm asking now because I saw an elderly person recently who can't pick up his feet when walking. He was unsteady too.


    I was hoping knowing what part f the brain is associated with this may explain it.
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,825
    Likes:
    4,586
    Cornwall, UK
    Which symptoms? I'm afraid I'm not an authority on walking/gait problems (or a lot of other things!). But I know that problems can arise from the gut, and from the legs themselves, as well as the brain.
     
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Bradykinesia is slow movement. So far I've seen it's from low dopamine and found in parkinsons.

    I have problems with fine motor skills too.
    I found that and i think its dyspraxia.

    Ataxia describes gate and balance problems and I had this. Mine included falling into things like walls or people etc unknowingly until I made impact.
    Heavy legs, heavy arms and ocular ataxia.
    My legs felt like they weighed 100lbs each. Arms had ti be lowered multiple times when washing my hair. And anything I tried to focus on in the near distance bounced.

    fun fun.

    Knowing I had ataxia and related symptoms may help me pin down bradykinesia.
     
  17. Cheshire

    Cheshire Senior Member

    Messages:
    173
    Likes:
    464
    France
    xchocoholic likes this.
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    I think I'm getting a type of seizure if I push too long too.

    It goes away on it's own anywhere from 15-90 minutes. Eating helps me feel better but doesn't stop it.

    I'm still experimenting to see if Klonopin helps but I can't remember to take it. Only 1/2 of a .125 to start tho and more if needed.

    I couldn't see the pdf on my phone but hopefully can find it somewhere else. Thanks.

    tc .. x
     
  19. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    Your post made me think of my past when I had ataxia. I too was foot drag (for me it was left foot.. something which would end up making me trip up a lot) along with at times feeling like buckets of cement were on my feet.

    Thou I dont get that symptom complex any more thou I still lost my ability to coordinate my legs to walk if I really over do.

    Im wanting to look into mitochrondial disorder more due to my past ataxia with the ME (along with a lot of other symptoms which point to mito disorder).
     
    xchocoholic likes this.
  20. jann1033

    jann1033 Senior Member

    Messages:
    141
    Likes:
    131
    No, once early on I tried to play an active game with my kids and did myself in after about about 2 mins. I miss hiking and being active even 26 yrs later.

    I can walk, albeit slowly , although not far. I am wondering if I should get a cane since I have to presently hold on to something due to lack of balance.

    My legs stop listening to me if I get really bad(ie I can stand up , want to walk across a room but my legs won't move), left foot drag, weird feet slapping the ground feeling, don't know where my feet are, stumbling etc so running is kind if out if the question lol
     
    Last edited: May 5, 2014

See more popular forum discussions.

Share This Page