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Handling fatigue

Oh what a beautiful morning.

Sorry if I’ve just triggered an ear worm there prompting memories of local am dram productions of Oklahoma. The one I saw started with “There’s a bright golden haze on the etc etc” without accompaniment. The poor chap had been given the wrong note to start on so when the orchestra came in there was an embarrassing tonal clash.

Now, about fatigue. I have two main thoughts about this.

  1. I will always yawn; even if I’m not too bad. In company this will prompt the usual jibes about being on the lash all night or comments relating to the so called “beauties” of retirement and staying up all night watching box sets. I will quitely explain that while I may have been in front of the telly all night, I was asleep on the chair. There are occasions when sleep is not forthcoming. That’s when I bake bread “so shut up and eat your lovely fresh toast”.

  2. If you want to fight, expect a battle. This relates well to the “pick your arguments” mantra. I wouldn’t fight my fatigue the day before a trip out. Who was that king who tried to order the waves back? He should have done it when the tide was going out.

Hope everyone is coping.

Best wishes, Steve

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Hi Steve

Thats triggered that song in my head now!

Fatigue…where do I start, people who don’t have MS or other debilitating illnesses just do not understand it, but why would they if they have been lucky not to experience it. My hubby can have a 10 minute cat nap and be totally revived…if only that would work for me.

Another a appointment with the Rheumy yesterday and given steroids again, so back to feeling hyper, irritable and no sleep! She is a lovely lady, but I have made the decision that this will be the last time I will take them…mind you I haven’t told her that yet.

Hey ho …onward and upwards (hopefully)

Pam x

Hi Steve and Pam

Re Fatigue - Admittedly, I was a bit worn out yesterday after two days doing everything all at once and not spacing it out. Then it didn’t help, rushing to get ready for hospital transport … usual wait for most of the two hours only to be told 'I’m afraid I can’t take you today buddy, as you’re in a wheelchair and I already have one onboard! Anyway, that evening, I went to chill down watching tv - after about half an hour the typical nerve pain started in my legs and feet, accompanied by some more than typically violent spasticity of both legs in an upward direction … from a sitting position. Then, and more worryingly, I had some episodes of what to me seemed like a form of narcolepsy. Watching the tv, not really feeling that tired, then suddenly … gone, and woke up a millisecond later with my face about two feet from the floor. I stupidly let this happen another five times or so before calling it a day for the night … so to speak! I Could I ask is this possible as part of extreme fatigue with MS i.e. has anyone else had this happen?

Re: Steroids - After reading many posts, I was starting to think that steroids were mainly prescribed these days, to RRMS patients … as they can be effective to boost after relapses. My mum had prednisolone - for a boost I think, not all the time - throughout her time with PPMS. I’m not sure I’d want to take them myself but can see the benefits of a boost occasionally! Does anyone still have them prescribed for this purpose, with PPMS that is?

I know of King Lear Steve, holding back the storm, and Moses I think, who parted the red sea!

Best wishes, Chris

Hi Chris,

I have Prednisolone 5mg which I sometimes take because of a painful dermatitis that I occasionally get on my fingers. After years of using creams and ointments it is the only thing that calms it down.

It may not be classic PPMS (which I have been diagnosed as having) but it still feels like an auto-immune condition.

Regards,

John

Thanks John

That must be awful too but glad the steroids help. I’ll be seeing the gp in the week and will be asking about sativex mainly, but also whether steroids might be worth trying to help with leg stability when standing … for a short time at least

Best wishes

Chris

Hi Chris

The steroids I have been given are for RA which I was dx with 3 months ago. I am not holding my breath but just wishful thinking that they may help with my ppms, but I have always been told they do nothing for ppms.

Time me will tell I suppose.

Pam x

Thanks Pam (can I change my answer to king canute Steve?!)

I’ve just been reading posts on another MS site - admittedly from 2009, but many ppms sufferers saying their neuros had prescribed steroids … as an ‘empirical’ dose … a new word to me but I believe translates as ‘It’s worked for many, so worth a try’ - to relieve the symptoms and boost the system - periodically

Hope they help with your RA and ppms Pam

Chris x

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When I was first diagnosed with Primary I got prescribed a fortnights worth of steroids and Viagra ‘WOW’ felt great constantly tidying the house washing dishes at every opportunity ‘Wife was impressed’, My fall rate was impressive too due to the energy of launching myself into things and forgetting that the body wasn’t working at the same speed as the mind. When the course of steroids stopped and it was like falling off a cliff into a pool of exhaustion. So it didn’t help me with the MS (When I saw the consultant 13 months later his first question was, ‘So how did you get on with the Viagra !!!..’ I changed consultant ‘&%~#+’)

So I don’t bother with the steroids when offered (I felt great, but it wasn’t real and NO to that ocean of fatigue). So now I choose my own battles (if it isn’t worth the effort, then it isn’t worth the time in my mind), little victories all mount up to a successful day.

I have seen what steroids do to you. My husband is a on a roll on roll off course to stay alive with this COPD (he still smokes though). He is a mess, his skin is non existent and just bleeds, he rarely sleeps, and is more exhausted now and is sleeping all the time in the day. When he is on the higher dose he is like a normal man again, will cook himself something, eat, and do things (doesnt sleep much), but when he is coming down off them, he is evil and horrible to live with.

I was offered them twice but declined. He is like a walking skeleton, they seem to be making him worse to be honest.

I personally compare Fatigue, to a car battery with problem wiring. The engine starts now & again. Yet has a tendency to overheat the engine, with it’s sporadic firing of voltages. Staying cool & collected is key. Avoid the traffic jam creators & those who don’t give a hoot about others problems. It creates chaos & tailbacks. So long as they’re okay.

Terry