Tiredness and fatigue does anyone else have it bad.

[mickt]

Ive had symptoms of pmr and gca,am type 1 diabetic also addisons disease, on pills for diabetic neuropathy .Im a 50 yr old been off work for 5 months .I take myself for a walk everyday but its hard work I do 30 to 40 mins and im done in for rest of the day .Im on 20 mg pred at moment ,coming up to my 6th cyclo next week got to have another 3.Just wondering does it get better the weakness in legs and body been on pred since start of june ,hoping for light at the end of the tunnel,and to get my energy and strength back and enablr me to get back to work.Appreciate any comments .Cheers .

[polkadotcom]

It does get better, mickt, I promise, but it is never going to be an overnight happening. In your case, as you have so many other things going on - including the infusions - that I think you are going to have to grin and bear it for a little while longer. Most of us find that we get double or even treble whammies for fatigue - steroids can cause it, PMR can cause it and in my case, Fibromyalgia can cause it too plus the meds I take for that!

For you it is still very early days. I suggest, at least for the colder months due now, that you try to accept that for the moment 'this is as good as it gets'. Some 15 months or so ago I was where you are now and when I remember how I was then, I know that I have come a very, very long way.

It is so important that you keep up the walks, I can't stress that enough. I know too well how hard that is, particularly when the weather is bad, and looking on the bright side you can walk for much longer than I can, 5 minutes is my absolute limit before I need to rest.

Keep busy as much as you can and there are exercises you can do at home to strengthen your leg muscles, have a google - it's surprising what you can find.

[mickt]

Thanks for that polka dot ,you have given me a bit more of a positive outlook .The specialist nurse always says that the other things ive going on wont help ,ive tightened up my diabetis control for neuropathy and the pains have eased .My eyesight is ok touchwood for which im grateful of.I just worry ill not be able to manage my job ,company have been good, and it has a good occ hth practice.I had a positive meeting at home with them and up to now they have been supportive ,I do manual work which will not help matters.I will keep the walking up im a swimmer too but been advised not to while on chemo for infections.I hope you are recovering ok too.I will look on google as you suggest.Are you still on pred and an immunosuppressant.? eg azathioprine ,I ask because they are talking about putting me onto that steroid sparing drug .Cheers mick.

[Celtic PMRGCAuk volunteer]

Yes, mickt, as polkadot has said, it does definitely get better once you have got through these very early stages of treatment. At the moment your body is being bombard with not only the inflammation of PMR etc but also the medication and infusions you are having. Hopefully you will start to feel stronger once your cyclo infusionsin particular come to and end.

Although you are doing an excellent job in keeping up with some exercise to keep those muscles going, I do wonder whether you might be pushing yourself a little too far with 30-40 mins walking at a time. As you say you feel "done in for the rest of the day", it might be better to reduce the walk to 15 mins and if you don't feel as exhausted after that, then you could even try another 15 mins later in the day after having had a rest. When my PMR and GCA were at their worst, I could only manage a 5 minute walk - it took longer to don my shoes and coat than to actually walk! I gradually built up to a slightly longer walk but even then sometimes the pain would take hold to such an extent that I'd have to borrow someone's wall to recover in order to make it back home.

It's good to hear that your employers are being understanding - perhaps when you do feel much better there might be a non-manual job they can give you? Meanwhile, try not to worry about the job at this stage - difficult I know - but have lots of rest and take each day as it comes, knowing that there will very definitely be light at the end of the tunnel. Lots of good luck wishes.

[mickt]

Thnks celtic for your positive words and it cheers me to hear that light at end of tunnel. I will take your advice on walking I think, my wife tells me im trying too much and should rest more .cheers mick.

[or01ah]

Hi Mickt I was extremely tired for months so bad that after a mid-day shower I had to liie in bed for half an hour as t wiped me out. I was diagnosed in Feb and now feel I have got my energy back 90%. I went back to work in April though it was a bit soon on reflection. I work full time and exercise a fair bit and eat healthily so life is good. You will get there. Take good care. Anne

[mickt]

Thanks for reply Anne ,all good news which is good.