Can you run ? Move quickly ?

[MeSci]

yes @
Pacing in general is a really good thing I just notice like you will and most that its like its claimed to be a cure alongside CBT and GET. which truly GETS up my goat.lol.
i don't usually have a wee :aghhh: about it but i felt the niggle.:rofl:

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?!

 

[MeSci]

Pacing in general is a really good thing I just notice like you will and most that its like its claimed to be a cure alongside CBT and GET. which truly GETS up my goat.lol.

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?!

 

[aimossy]

yeah @MeSci EXACTLY thankyou.it grates me for some reason! it's convoluted and messy for me.

 

[alex3619]

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?!

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.

 

[aimossy]

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.

Its very annoying and causes sooo many issues not having clarity of the issues makes a mess for people trying to change things.

 

[Ambrosia_angel]

I haven't ran since a few days before I got ill which was over a year ago. I miss it a lot.

 

[xchocoholic]

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

 

[svetoslav80]

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.

 

[Little Bluestem]

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]

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

 

[MeSci]

Inflammation indicates infection tho, right ?

tc .. x

Not necessarily. Lots of things can cause inflammation.

 

[xchocoholic]

Not necessarily. Lots of things can cause inflammation.

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

 

[belize44]

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.

 

[MeSci]

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

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]

@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.

 

[MeSci]

@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.

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.

 

[xchocoholic]

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.

 

[Cheshire]

I'm also very very slow, if I try to move more quickly, I crash just after and have to rest.
I found a study about fibromyalgia and bradykinesia
http://www.centaure-metrix.com/PDF/articles PDF/AuvinetB.JointBSpine2006-EN.pdf

 

[xchocoholic]

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

 

[taniaaust1]

Great responses everyone ! Sadly I can relate to most, if not all, of what you all said.

So we definitely notice an energy shortage / specific muscle weakness in whichever muscles we're using including the brain
but I'm not sure if it's mitochondrial or neurological or both.

This thread reminded me that when I had ataxia, if I didn't us a motorized cart when grocery shopping by the time I got to the second aisle my body began giving me neurological symptoms like right foot drag, heavy legs and arms, and ocular ataxia. I stopped getting these quickly after my ataxia resolved in September 2006. One year post gfcfsf toxin free diet.

The correlation between heavy uncordinated or heavy limbs and ataxia is over my head.

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).