Chronic fatigue

[Sandra1959]

Hi can anyone tell me when the tiredness gets any better I'm currently on 11mgs pred and still so tired

[piglette]

Tiredness is a symptom of PMR. Steroids do not help tiredness just the pain. It can get quite bad when you get close to 7.5mg of pred as that is around when your adrenal glands have to wake up. I have found the best thing is just to give into the fatigue and rest.

[Sandra1959 in reply to piglette]

Hi and thank you I was hoping reduced meds would make me less tired , I can't afford to remain on sick for much longer

Sandra

[piglette in reply to Sandra1959]

I carried on working but it is an office job, at some points I find I am too exhausted to even use a mouse or pick up the phone. Other days I feel not so bad. I have one of those office chairs that can tip back, it also has a head rest, so I must admit I do lie back for a rest every so often. At weekends I try and do very little, although I do go swimming.

[Sandra1959 in reply to piglette]

I working with learning disabilities so it can be heavy and also do sleepovers so very long shifts

[piglette in reply to Sandra1959]

Some people do carry on with their full time job while others change to part time or give up altigether. Your job does sound hard and you may need to cut down. I find I get like a wet rag in the evenings and have given up doing things then. It depends very much on what you need to do and how you can change things to ensure you can carry on while you have PMR.

[Annodomini]

I'm gradually getting less tired, though there are times when I simply drop off in my chair and other times when I settle down for what I expect to be forty winks and wake up two hours later. I'm down to 5mg now (again) and will probably stay on that to make sure I can cope. When you do feel tired, you should give in to it and sit down to rest. Fighting fatigue is counter-productive. It's a long haul until you can get back to normal whatever that may be. 4 years so far, for me.

[mega in reply to Annodomini]

Snap, Annodomini! Your experience exactly reflects my own - even as far as "down to 5mgs (again)" ! Sandra 1959 doesn't say whether her bugbear is PMR or GCA but mine is the latter and I am beginning to get the feeling that I'll NEVER get back to normal life again, in spite of the encouragement of some lovely posters on here.

Warm wishes to you both for better days before too long.

[Sandra1959]

Omg I thought it would get easier was going to ask go if she can prescribe anything

[piglette]

You have got an illness which is life changing, as annodomini says you do need to give into the tiredness and not fight it. I find PMR very intolerant and it does tend to have the upper hand, so you need to let it have its own way or it bites back.

[Sandra1959]

I think I'm beginning to realise that .

Thank you

[Runrig01]

I have carried on working full time as a nurse in a heavy demanding ward with the help of my colleagues and OH. I am now 4 yrs into this journey and found the first 2 yrs worse for fatigue so it does get better. But overdo it and others say it does bite back. My rheumy told me I will probably have it longer because I continue to work, and haven't got the opportunity to rest when I should, who knows. I still get days where fatigue sets in but it is usually following busy shifts, so I try to rest on my days off. My OH have been very supportive. I recently had 3.5 months sick and did a phased return using my annual leave.it does get easier, but I still get days when I've overdone it and know I will pay a price for it, we never learn

[Sandra1959 in reply to Runrig01]

Hi and thank you I have requested an oh referral , so I'll see what they can offer, I've been sick for 6 weeks and spent most of that in my pyjamas

[Runrig01 in reply to Sandra1959]

My OH were good. They made me excempt from doing nights due to the time sensitivity of my medications. They also recommended no more than 2 long days at a time followed by rest days. This works very well for me. They can also arrange for your work area to be adapted if need be. I also find working helps manage my weight gain. In my first 2 yr on Pred I put on 18 lbs, this year I have been of sick 3.5 month followed by a broken ankle and have gained another stone. Good luck x

[Sandra1959 in reply to Runrig01]

Thank you .

[Megams in reply to Sandra1959]

Hi Sandra

With you spending time in your PJ'S struck a cord for me - I don't like to tell you this, but I have spent most of this winter (in NZ) in my pyjamas and as Piglette says this is a life changing disease which my head knew but my heart needed to catch up some where along the line.

The sooner I came to terms with this psychologically speaking, the sooner I could be a little more patient with myself and accept that this is how it will be for some time yet.

I am 8 months down the track with diagnosed PMR but was battling on all fronts most of last year.

Sorry if this has added more fuel to the fire.

Sending you special thoughts as you adjust to this pesky complaint.

[Sandra1959 in reply to Megams]

Thank you so much , yes I do agree I am going to ask my doctor to sign me off for another month , and do as she says , see how I'm feeling in a month , don't plan on going back to work , then I'll see what occ health say x

[Sandra1959]

What I have realised ( myself included) is very few people have even heard of this so it makes it harder to understand it .

[piglette in reply to Sandra1959]

I agree, I had never heard of PMR before I got it. The other problem is everyone tells me how well I look. I tell them it's the drugs! I hope the OH helps you and you can sort out work.

[Sandra1959 in reply to piglette]

Thanks .

[PMRpro Ambassador in reply to Sandra1959]

More people have heard of it than you might think!

But it has been touched on by megams - the happiest PMR patients are the ones who have accepted that they have a chronic illness and while it is not life-shortening it is definitely going to have a major effect on your way of life. I've had it over 10 years although I have only been on pred for about 6 years. I am finally down to 4mg and feel very well - I'd say I was back to normal for someone approaching mid-60s. I've just done a 3-week trip to China with a 2 week high-intensity tour programme, came home for a week and then headed off to the UK to visit the daughters. I have driven 2,700 miles all round the UK - myself, my husband drove 90 miles on the second to last day because I was sleepy, not physically tired.

But I adjust things - I likened it somewhere else to the stairs or lift questions: normally the stairs is the better choice but when you have PMR it is the lift that is better because that will leave the energy needed for the stairs for you to do something else. Where I can I take the easy option.

Read the Spoon Theory by Christina Miseriando:

butyoudontlooksick.com/arti...

GCA is subject to disability legislation, I don't know how PMR fares there but it is now accepted to also be vasculitis although its effect tends to be on muscles rather than arteries. I could differentiate rather better than that but you'd be here half the day.

And get out of those PJs - sitting about and doing almost nothing is making the weakness and tiredness increase. If you don't use your muscles they waste away - literally. Just a couple of days of bed rest means you lose a considerable amount of muscle mass and function. Six weeks of doing not a lot will have affected your fitness a lot. It doesn't have to be a lot but short walks several times a day, stopping within your limits so you don't end up with very sore muscles, will keep the muscles in fairish trim. Dress properly and the weather doesn't matter - but a 10 min walk at a comfortable pace for you done 6 times a day is an hour's exercise. Start with 5min walks and build up slowly - it is the SLOWLY that is the key. You can't train like an athlete, not even as you did pre-PMR in the gym - but all things are relative! Don't go and attempt full flights of stairs at first - but going up 3 or 4 steps and back down may look daft but done repeatedly with rests between it achieves a lot. In the early days, even without pred, I could ski a short run 3 times when I couldn't manage a longer one without the rests on the lift. Nor could I ski on consecutive days. As the season progressed I could do more and more on a day - and by early spring could ski 2 or 3 days together. Your muscles are intolerant of acute exercise - but you can build up what you can do as long as it is slowly.

[mega in reply to PMRpro]

You are so severe PMR pro!

The number of days I've spent in my pjs (or nightdress, for me) can be counted on one hand but, with GCA, in my case, at times I had to literally crawl into my bedroom to get any semblance of sleep. Immediately I stood up I became dizzy and disoriented and several times blacked out completely. Other times I was "away with the fairies" when I had to answer the door bell for instance but if I sat down (had to!) the feeling passed. In the end I slept in my living-room chair for five months - it is helpful to sleep propped-up with GCA , rather than flat. Nearly five years on, I still sleep propped up on six pillows, but in my bed.

I'm not sure whether your strictures are entirely PMR directed or include GCA sufferers too. Happily I haven't had to contend with PMR. I have had two friends diagnosed with it though, one of whom was put on a very low dose of preds and was able to carry on with a more or less normal life and the other, whose adrenals failed to reactivate, has suffered innumerable setbacks for twenty years. The first is now considered PMR free, after 2.5 years, the second is in a wheelchair and I honestly doubt whether she would have been capable of your regime at any time.

I appreciate your advice is well-intended but please remember that one-size doesn't fit all. Be careful not to make those who simply can't live up to your standards, feel like failures.

[Sandra1959 in reply to mega]

Thank you I was upset by reply however I want to say I work 10 days and do 6 sleepin s at work then have my g children 3 days alongside with helping my mum so I think I've burned myself out a little at present .

Sandra

[PMRpro Ambassador in reply to Sandra1959]

I hope you have also seen my other post. I'm sorry if you were upset but it explains what I meant by the original post.

If that is your current timetable then it really isn't surprising you are so tired. PMR makes your muscles intolerant of acute exercise and what you say you are doing is going to make you very very tired. You MUST rest and pace yourself when you have PMR but that doesn't mean staying in bed or lying on the sofa. You can do far more when you do a little bit and then rest, rinse and repeat. I couldn't do what you are doing without making myself ill even now, even though I did the China and UK trips. You have a chronic autoimmune disorder that is making your muscles unable to work normally - you are quite unwell and you need to put YOU first for a while. If you don't you will feel ill for even longer.

One lady had had PMR for several years and kept having flares when she reduced her dose and also struggled to walk more than a short distance. She decided one day to become a "Precious Princess" and stopped doing all the things she found made her feel worse. That allowed her to reduce her pred dose and after about 18 months she was able to stop pred altogether. It might have been coincidence - but she is convinced it was the resting and just doing the sort of exercise I suggested earlier that did the trick.

It is hard - we don't LOOK ill but we are. And taking pred, although it is the answer for PMR pain and stiffness, is not like taking Smarties. It is a powerful drug and also has effects on our bodies, especially at the higher doses. That makes it harder still. But looking after yourself will mean you are likely to get through PMR a bit more easily.

[chockybuttons in reply to Sandra1959]

Hi Sandra, mega is right, everyone is different. Please try not let reply upset you. I am 49 and have GCA, diagnosed in January this year. currently on 10mg, never been on higher than 15mg. I work 4 mornings in office on computer (hours reduced due to work - good for GCA, bad for money, ha). I'm very lucky to just work these hours. I do not have very bad heads, but I do have good and bad days where just feel generally unwell, sometimes kip in afternoon if tired. Also have type 2 diabetes, on medication for this cos steroids raise blood sugars, which they are known to do. When I do feel yuk, it's sometimes hard to tell why. Go with the flow and take it easy <ee>

[Sandra1959 in reply to chockybuttons]

Yes it is such a debilitating disease and I sympathise with you its very hard , I am borderline type 2 so I think I'm expecting to get diabetes also my dad was diabetic take care x

[chockybuttons in reply to Sandra1959]

Thanks, and you, keep us informed x

[PMRpro Ambassador in reply to mega]

I don't think I was suggesting anyone should live up to anyone's standards - if you read my post you will see I said I am now back to normal after 10 years of PMR symptoms, most likely due to GCA in my thoracic arteries, and am still on pred. It was intended to show that a return to normal is possible, even if it takes a long time. In the meantime I spent 9 months on crutches and couldn't walk more than about a couple of hundred yards with or without them. I was seriously considering getting a mobility scooter - and it was an exercise programme of the sort I suggested that got me back to near normal. I walked for 5 mins at a time to start with - and increased the time slowly.

The advice of getting moving is essential for managing PMR successfully. Sandra said "I've been sick for 6 weeks and spent most of that in my pyjamas" and said earlier she is on 11mg - so she has PMR not GCA unless she has been misdiagnosed. I didn't suggest she do what I have done in the last 6 weeks - I suggested that she needs to do a little exercise, 5 or 10 mins at a time isn't unreasonable. Once you get moving a bit with PMR it improves the blood supply to the muscles and the effect builds up, the muscles are less stiff and you are able to move better, you can do a bit more and so it goes on. Sitting for more than short time leads to something called myogelosis, a symptom of PMR, where the muscles stiffen up and it is difficult to get moving again.

Many patients find that using an electric blanket before getting out of bed enables them to get out more easily and then into a warm shower - and the warmth of the shower allows them to do some gentle stretches. Once they have done that they are able to get moving to do other activities. I'm not suggesting anyone do what I did for 5 years with PMR and no pred at all (not from choice believe me) - I got up and staggered to the car to get to the gym and did an aqua aerobics class almost every morning. I could barely get into my swimsuit and jogging bottoms - but after the class in a warm pool I was able to move almost normally and the pain was also less.

Not keeping moving gently makes PMR worse - and that was the aim of my post. I'm sorry if Sandra felt upset. maybe I would have put an emoticon on the other 2 forums but this one doesn't offer that to take the sharpness off a written comment.

If you don't use muscles you lose them - and that was what I explained.

[chockybuttons in reply to mega]

Yes, agree :-))

[Peter55]

Hi

I was on pred 20mg for 18 years due to UC, but that cleared up in 2001 due to azathioprine, but by then my adrenals had packed their bag and buggered off to Florida. Luckily enough although being on 20 mg pred for 18 years, I have completely avoided osteoporosis. I took a lot of supplements. Alendronic acid calcichew ( mmmm lovely. A chalk tablet for breakfast lol), multi vitamins WITH minerals. Extra vitamin d, glucosamine and food liver oil. The latter two were for help with the arthritis in my hands. But most of all exercise!! Has to be weight bearing so swimming no good. I used to go to the gym, do an hour's cardio and an hour free weights and presses. 4 times a week. I used to cycle or walk whenever I could. However to get to the point in your question. They took me off pred last year and put me on hydrocortisone. It was lovely. No anxiety, no hot sweats, no agitation and no more aggression. But after 5 weeks I woke up one morning and couldn't move. Pain from head to foot especially in hands and feet. Thought it was flu. 9-10 days later it was sill bad and getting worse. So I did what I always did with a flare up of UC. take a big dose of HC (120mg) followed by my normal amount 30 mg daily. By the afternoon the pain had gone. Hydrocortisone only has 1/4 of the anti inflammatory properties of pred so effectively I was only on the equivalent of 7.5 mg pred. So I went back to the endocrinologist and he said that I should go down to 20 mg as what I was suffering from was probably Cushing's syndrome. So I cut to 20. Straight into flare within 2 days. So I called my doctor and asked to go back on pred. So back on 20 mg pred and it still happened so obviously the effect that pred was having had gone. Several visits to a rheumatologist and they think I've got an underlying inflammatory disorder. I'm obviously prone to auto immune diseases as I'd already had UC and have arthritis in my hands bad. They decided to put me onto methotrexate but I had a severe toxic reaction which was awful. Never felt so ill in my life. Was immediately taken off of those and am waiting to start azathioprine again which I think was responsible for completely clearing up my UC which doesn't normally happen. But I've just had a flare. This time only lasted 3 days so perhaps since I've been on HC my adrenals have started working again. I've been getting plain in the kidney region. Just wondering if that's a sign that they're starting to work again. Previously if I had a flare I'd be on morphine 60mgMR twice daily for the pain. But could have slept all day. But night time awake all night. Mine used to last about 2 weeks and I just used to have morphine for pain management

So 2 weeks was my average flare.

Good luck

Pete

[Sandra1959]

Omg you have really been through the mill , I do hope things are getting better when they put you back on original meds.

I feel like I'm just whinging but as I live on my own I have financial commitments and just want to be able to go to work .

Sandra