Tiredness

[martino]

Do you ever feel so tired that you don’t want to do anything? What with the Neuropathy and the RLS plus the meds I do. Then the other day my wife badly broke her leg and there is only me to help. I have found reserves of energy I didn’t know I had. So next time you are absolutely knackered think what may be round the corner. My pain etc has had to take a back seat.

[Hidden]

Every day, i feel like that. either from sleep deprivation or the meds. Have to push myself to get anything done. No one here but me, so i either live in a dump or get on with it. Altho there are days, when its impossible to do anything, and i give in to it. Cant say i am superwoman yet.

[jan_ET in reply to Hidden]

im the same i feel tired all the time its like having to push around a heavy load all i have the energy and motivation to do is rest butcant sleep - I undrrstand completely - good on you for being there for your wife but it is very tough!! this weekend a fried asked me for help I gotherto hospital and she has diabetic cat that i had to give insulin to and today went go work and had to go for medical appointment in the city - just got home and am feeling like azombie - so can fully relate - the meds arecrippling - bravo to you - rest when you can - take care 😇 Jan

[LotteM]

Oh Elisse, I started to write something quite similar. But then deleted it - didn’t want to feel sorry for myself when I learned here so many have more problems than I do. And I am not alone at home, with husband and adolescent daughter. And I am still at work, although half days and mostly from home.

Yes, everday is a fight; I feel like Baron von Munchhausen, pulling hself AND his horse out of the swamp. Not just once, almost every day, almost all day.

[Hidden in reply to LotteM]

Lotte, everyone's RLS takes different paths, some feel theirs is worse than some one else's. Please dont feel you cant say what yours is. The fact you work, even tho part time and at home, that is something i could never do and so glad i got to retirement before mine hit me big time. So, hats off to you or anyone who has to struggle to get to work.

[jan_ET in reply to LotteM]

lottem that is an excellant analogy”pulling the horse out of the swamp - exactly!!!

[Hidden]

Yep, all the time. The biggest thing I have discovered about myself ever since this syndrome started is that I am an incredibly strong person who can do anything she puts her mind to, and I would hate to be the person who tries to tell me otherwise! If I had a penny for every time I did something that I didn’t have the energy for, I’d be rich!

[LotteM]

Thanks, Elisse, for the kind and encouraging words.

And Jessica: LOL! Indeed....

[Phogan]

Dear Martino

Yes I do fully understand how it feels to be too tired to do anything. Unfortunately, I had to give up my job that I loved so much because I could no longer be a team player. I never knew from one day to the next if I was going to be available to perform my duties to the capacity and level that was expected.

Everyday I would go to work either too weak, too nauseous, or just too tired to be able to perform at my peak, which of course, (and rightly so), was expected. I was riddled with guilt and shame as I seriously felt that I was letting my teammates down by not being capable of carrying my load successfully. So I gave my job away, albeit quiet reluctantly.

I would give anything in fact everything, to once again be a contributing factor in the workforce.

However I am one of the lucky ones ... as I have a new job, (albeit as a voluntary position), but I am certain that it will restore my self-worth. And as it is a volunteer job, my hours will be somewhat flexible and there will be no one to let down if it just so happens that one day I am unable to attend to my duties.

I WON'T ALLOW RLS TO TAKE EVERYTHING THAT I LOVE FROM MY LIFE .... I SIMPLY REFUSE TO ALLOW IT TO HAPPEN.

[Hidden in reply to Phogan]

Well written, Phogan!

What do you do for volunteer work?

[Phogan in reply to Hidden]

Patient Liason Advocate in hospitals, nursing homes, dementia clinics etc

[jan_ET in reply to Phogan]

phogan that is awesome - I so needed tohear that! beautiful attitude 😋😋😋

[julz68]

Good luck and good on ya buddy

[Hidden]

Yes, I feel completely exhausted. I just want to sleep during the day. I am cross with myself but often just flop. But then as you all say if something comes along which you must do, or you don't want to say how exhausted you are, or lose touch with friends ( which is becoming a big issue ) then you can rise to the occasion and often seem 'normal' - but you can't keep it up non stop. It depends on the day too.

[martino in reply to Hidden]

I am learning more about tiredness. I was so tired last night that I forgot to take my nighttime dose of Gabapentin which controls my pain. At 2.00 this morning I lay wondering why my legs were so painful. When I checked my pill box I realised why. I am now trying to prioritise my tasks!

[LotteM]

4 years ago, Vincent FW wrote this in reply to a similar post:

"The sad thing is, that most people you meet have no conception of what this level of tiredness is like. Indeed I get frustrated that I can't do what I used to physically and to overcome the exhaustion to exercise is a major battle in self control. I try to exercise daily and find if I can overcome the barriers of exhaustion it does help. As one lady above has said.."I want my life back". This level of exhaustion also inhibits enjoyment, anything that requires effort, takes real determination to do."

If you ask me, he hit the nail on the head!

[Pippins2]

Martino have you had a sleep study to see if you have sleep apnea? Just a thought x

[Hidden in reply to Pippins2]

Good idea Pippin. If nothing else it may help him in dealing with healthcare givers who don't 'get it' re rls. About 2 weeks ago I went to my sleep doctor for my routine sleep apnea checkup. I asked for a copy of my c-pap machine computer chip record and it plainly showed my pattern of sleep interruption and length of time I had to be awake each night. The rls overrode the machine. Unfortunately that was the doctor who 'blew me off' and now am in the process of finding a new rls doc. I'm hoping this documentation will be of value. Most people, I find, when you say you're exhausted and not sleeping have no idea what this means for rls patients. So I just don't mention it. I live in senior living where almost every resident has medical issues. I find myself answering "I'm fine." when asked. And if I'm being honest I really don't want to listen to their complaints either. Some people here will go on about minor problems 24/7 and it's draining. Those of us who are retired nurses let residents know if there is a real emergency please come get us and we'll help. Otherwise trying to be helpful all the time becomes overwhelming in this environment. I also have a-fib and living with it is, for me, a day at the beach compared to rls. I think I've met my match. Thanks, everyone for listening. irina1975

[martino in reply to Pippins2]

Hi Pippins

Yes and yes. The sleep study was to check for PLMD in view of its association with RLS. The neurologist was unhappy about the RLS diagnosis in view of the amount of pain I had. In the event a nerve conduction test has indicated neuropathy

[gypsy49]

yep all the time but oddly enough i go hyperactive which some say is like running on adrenaline or auto pilot have crashed a few times awful if your trying to do something and your main aim is to finish it and keep getting interrupted and still your aim is to finish the job no matter what you become a robot .

[cathief51]

I suffer from chronic fatigue, and with the les and not sleeping some days it's just too much hard work to even speak. Luckily I am now retired so I can be grumpy as I need to.

[TEAH35]

Only all the God damn time. I find now that instead of improving, (which I had thought all of these meds were supposed to do, I find that they seem to be making my continual tiredness much worse. And now of course to make sure that I am feeling tiredness even more, I have begun this quite intense physio routine.

So why are you not in bed sleeping right now, I hear you ask, (after all, it is 3:39am). It is called mania. And unfortunately can keep me awake

And of course, there is always my good old battle with obsessiveness. The mongrel is having another win tonight