muscle fatigueability

any link for the video?

I would be interested in seeing this video too.  Could you possibly message the link to me too please?  I don't think we are allowed to post other web addresses on this site.

I struggle a bit with inflexibility which has gradually worsened as time goes on.  As if it isn't limiting enough having this illness!

Hi Katsmaui....I shall try and find out more on the net...thankyou

Hi Shredde...Yeah flexibility is s major issue. ..any attempt to do stretches seems to cause large amounts of generalised neuropathic pain...fir myself this is more of a problem in my legs..slightly less so on my arms and fingers but there all the same...taking a low dose of Tramadol each morning this week as an experiment. ........everybody keep communicating when poss...helps with isolation and other emotions. ....Best wishes to everybody..Guy...

Hi Tina....thanks for your input....are you able to get out and about to any degree? I think if we can find people with similar symptoms in this beastly condition we might be able to share ideas and offload emotions if necessary. ..good to have friends that understand all the restrictions and knock on effects that result from this illness. ...message me anytime you wish..Guy

Hi Guy,

Yes I am, but it is very restricted.  I find extreme weather conditions make my condition worse.  Also, before my relapse in 2013 (diagnosed 2008), I was able to work be it part time 25-30 hrs per week, and only used a walking stick on really bad days.  Now I go nowhere without using stick (short distances), and crutch if my destination is more than short distance.  In 2013 we were looking around Universities for my daughter, and we were at Reading.  It was an absolutely horrible day weather wise, pouring down with rain.  I was using my stick, and resting as much as possible.  Long story short, I became paralysed (frozen), call it what you may, yes in the pouring rain, looking like a drowned rat.  My poor husband and daughter rushed around to see if anyone could find a wheelchair on campus, and no there wasn't one to be found.  In the end the student's mini-bus had to be brought out to get me back to our car, which was miles away.  Needless to say, my G.P. then refferred me to an O.T. my house has been adapted with rails etc, commode, I now have a wheelchair which comes with us if I am well enough to try and go out for day. I can drive short distances myself, a couple of miles to my sister's hous.   Yep, it can get you down, but we are all in the same boat to some degree, and the key thing is "DO NOT LET CFS/ME WIN"

Best wishes

Tinax

Hi Tins...thankyou gor taking the energetic sapping time to send me a post ....I am very sorry to hear of your lonh list of difficulties....I am pleased that on occassion you might be able to make a limited, at best, excursion into the outside world. ..that is my first big goal.....what painkilling cocktail are you finding might help a tad?...Sunny day today as I look out of the bedroom window...nice to see the light...:-)..x

Tina......sorry about my spelling...have to text with my index fingernail...

Hi Guy,

No worries, you have made me smile, i quite like being called "Tins",not bad for typing with index finger nail, pretty impresive.   I do hope you reach that goal.  I have been bedridden for 3 full days max, but have been housebound longer, so appreciate how you feel.  I have a good feeling you will reach the outside world.  Hang in there and keep looking out of that bedroom window.  Don't give into M.E. small steps can lead to bigger things.  My cocktail at present is Pregablin, but I have tried lots more.  I still take at times over the counter painkillers when things really get to me.  When I am in bed, during the night I don't sleep too good, but I do keep my feet moving, and legs and arms, as often as I can without overdoing it.  The same during the day.  Every 20 mins or so, if I am not active enough to undertake light household duties, then I will get off sofa and hobble around the living room for awhile.  There are times when this is just not possible because of pain, shoulder to toes.  Here is one for you to imagine the scene.  "It's just before Xmas and I decided to go out on my own in the car to local supermarket.  I was feeling not too bad.  Big Mistake!  I know when I go out to supermarket my limit is two aisles only walking with a crutch then whoever I am with has to finish shop for me, as I can't push the trolley myself. I have food shopping home delivery.    Anyway, I decided to get my daughter some stocking fillers for Xmas whilst she at Uni.  I knew exactly what I wanted and planned the whole operation with prestige, mentally that is.  However, I bumped into someone who I used to work with and they kept me chatting over the trolley, then I had to get through the cash register and pack my 4 items.  I started not to feel too good but thought I was just panicking myself.  I went back to the car sat for awhile then proceeded to drive home, which is just over a mile from supermarket.  All was well until I reached our communal car park.  I turned off the engine, opened the door but could not move from waist down.  I tried lifting my right leg with my hands but failed.  I thought key thing not to panic.  So I sat for awhile yet again, and tried to contact my sister on mobile phone.  I managed this but she could not hear me, reception was poor  So there I am in the middle of a communal parking area, no one about and stuck in the car.  Luckily I had the telephone number of a retired couple who live in another property which backs on to mine.  I telephoned them, and they came and rescued me.  It was pretty bad trying to get me to my front door I can tell you.  I live around a green and it is a little walk from my house.  Embarrassed or what?  Mind you it would have been much more entertaining if the fire brigade came and rescued me!!  (Ha ha).  Would have beaten rescuing cat up tree story me thinks.

I hope I have brought a smile to your face, admist this chronic illness one always has to try and see the lighter side of things, hard as it is.  I too get very lonely sat at home.  I have worked all my life until last year when my employers decided to make me redundant, (but CFS/ME) was behind it and time off sick.  Up until then I had worked from 17 and never been unemployed. 

Wishing you more sunshine days Guy, when the feet hit the ground.

Take care

Tinsx

 

Hi Jelelly...thsnkyou for your suggestions. ....keep in the enrrgy envelope. ..I can just sbout text a few times through thr day...and go to the loo once...just that activity causes payback...