Fatigue and muscle weakness

[Miserere]

Just a quick question about the above. Over the last three or four days I have become more and more fatigued with a feeling of muscle weakness. I put this down to the hot weather, drank more water and eletrolytes and kept out of the sun. However, it is cooler now and if anything, I feel more fatigued than ever. Sleep isn't great but then it never is. I have PMR and am now on 8mg of Pred - I was doing fine until this week but now am waking unrefreshed in the mornings. Any clues? Or is it just the weather, I wonder. It has been far too hot for me or maybe I am reacting to heat differently. Many thanks for taking the time to read.

[Miserere]

Forgot to say, it feels as though I am walking around in a fog, as well - so not really here if you understand me.

[Pink_and_Black in reply to Miserere]

I’m suffering exactly the same Miserere; fatigue, weak aching legs - going upstairs is particularly hard, and the brain fog is horrible. I’m on 5mg now and hoping my adrenals spring into action soon.

Will read with interest the replies from the experts on here. Hope you start to feel better soon.

[DorsetLady PMRGCAuk volunteer in reply to Pink_and_Black]

Read my link here -

healthunlocked.com/pmrgcauk...

[Pink_and_Black in reply to DorsetLady]

Thank you. x

[DorsetLady PMRGCAuk volunteer]

I would hazard a guess it may be due to adrenals -all sounds suspiciously like they are struggling -and probably not helped by weather.

Have a look at this -

healthunlocked.com/pmrgcauk...

Not a lot to help but keep on slow taper, small steps down, rest and patience …,

[Miserere in reply to DorsetLady]

Many thanks, DL - it's probably the stress of the heat and the osteo in the knee - you're right. Rain due, I believe, and hopefully slightly lower temperatures. Thanks for reading.

[Hidden in reply to DorsetLady]

sorry to interrupt. I have GCA + Polymyalgia… I was born with only one kidney..presumably that would mean I only have one adrenal gland. I wonder if this will impact on my ‘journey’. Currently 7.5 pred + Methotrexate. Some days I feel just like Miserere.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Never be sorry to add a comment - but in answer to your question, to be honest I’m not sure [not medically trained] - but found this quote [however it does refer to one adrenal being removed] -

Your body can easily adapt to having only one adrenal gland secreting the hormones necessary for your daily living.

Which, as you don’t say you have had issues I guess is true in your case….but you are monitored regularly presumably regarding your kidney.

Another quote from a US forum -

Does being born with only one kidney mean you only have one adrenal gland?

1 doctor answer • Dr.. Quang Nguyen answered - Specializes in Endocrinology

No: Good question. They are two separate organs so you should still have 2 adrenals.

Pity he didn’t elaborate a bit more …

Whether it will impact when they needs start thinking about working again, the reply above indicates not - let’s hope so 🌸

[Hidden in reply to DorsetLady]

Thank you so much for your detailed reply. I do have CKD and have an annual check, plus have had a couple of scans over the years. Your posts are brilliant and very informative..thank you again. Kind regards to you X

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

🌸

[SnazzyD]

Sounds like my experience of adrenals not being able to make up for what Pred was no longer giving me. Hot weather was a killer.

[Miserere]

Thanks, Snazzy - it could well be that. Can't wait for it to rain and cloud over ...

[piglette]

As the others say it could be due to your adrenal glands although they are just on the very edge of waking up. They can be a real pain.

[Miserere]

Thanks, Piglette - it's only been this week while the temperatures have been so high. Never thought I would be wishing for cloud and rain ...

[PMRpro Ambassador]

The combo of low-ish pred, so poor adrenal replacement, and the heat is very stressful. I'm really not surprised. Remember the UK isn't used to heat - I am living in northern Italy and I can't do a lot out in 24+C and sun, And our houses are very well insulated.

[SnazzyD in reply to PMRpro]

It’s the humidity that has got to me.

[PMRpro Ambassador in reply to SnazzyD]

That's what gets me - summer or winter, Hot dry, cold dry, no problem and we are talking 30C and -15C for days on end although I don't go out and do much in 30C and above except sit in the shade since in the sun it is nearer 40C felt! -15C is fine - just wear more!

[Missus835 in reply to PMRpro]

30C and I'm wiped out. 20C is my number. LOL. Thank goodness Nova Scotia weather is fairly mid-range with heat/humidity. Also, I'm near the Halifax Harbour which may moderate the temps.

[Miserere]

Thanks, Pro. Hopefully some rain and cloud today. I bet it's lovely in northern Italy, though. I also wonder if I am a bit dehydrated although I drink more water than anyone else I know.

[Bcol in reply to Miserere]

Definitely more pleasant this morning, thunderstorms and heavy rain very early morning, light rain later with low humidity and lower temperatures. Actually had to walk the bowwow in the rain, can't remember when I last did that.

[Miserere in reply to Bcol]

Storms due here - just a few drops of rain so far

[Rachmaninov2 in reply to Bcol]

We had some quite heavy rain in the night, it feels fresh outside and the honeysuckle smells lovely having been drenched with rain.

[Expert4essences]

I have had the same marked increase in muscle weakness and tiredness in the last few months. I noticed particularly that it was an effort to go up the stairs, and ordinary household tasks like carrying the washing basket were more difficult. A blood test showed high levels of ferritin (not iron!) which apparently is triggered by inflammation (pmr) and in my case, hyperthyroid.

High ferritin levels cause muscle weakness and fatigue. According to my GP there is nothing one can do. As it is not a case of high iron levels, phlebotomy (blood letting) does not help, on the contrary.

Wikihow does give some helpful advice re diet which can possibly reduce the ferritin levels.

[PMRpro Ambassador in reply to Expert4essences]

Very much depends WHY the ferritin levels are high and diet is unlikely to reduce it in it being raised in response to autoimmune disease and it is probably accompanied by the anaemia of chronic disease where iron levels are low and you don't need to stop absorbing iron.

[Body_bonkers]

Feel exactly the same Miserere and would dance outside naked to end this hot weather - so debilitating

[Miserere in reply to Body_bonkers]

Rain at last - still warm, though. Hope we aren't all drowned out over the next 24 hours.

[Seablue22]

It's the same for me Miserere, last week I started to feel incredibly fatigued and very weak. I have atypical PMR and I'm currently on 8mg of Pred. I did wonder if it was the heat or if I'd been doing too much, or a combination of both!

[Miserere in reply to Seablue22]

I hope things are improving for you Sealue22. I think the heat is certainly causing part of the problem but I seem to have a little more energy now than I had and am keeping fingers crossed that this continues. Can't wait for it to cool down a little - I think we will all feel better.

[Miserere]

Whenever I take 7.5mg instead of 8mg I seem to be hit by this dreaded fatigue. I am using DL's slow taper. Mind you, I did have a couple of days before I started reducing when I felt as though I had been hit by a train. I'm taking 8mg again now but still feel as though I am in slow motion. I am exercising more as I need to build strength in my leg muscles re osteo-arthritis. Not sure how to deal with this. Then I can have a couple of days with quite a bit of energy, then no energy. Anyone else had the same?

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Think it’s par for the course when adrenals need to start thinking about working again…. Only answer really is slow taper (as you are doing -but you can make it slower by repeating each week if you need to) - small steps down, resting as required, time and patience..,,

But on the days you do have more energy don’t overdo it - easy to say I know -but if you do then you feel rubbish the following day.

Your illness may not be as active as it was, but pacing still applies, albeit for different reason.

[Miserere in reply to DorsetLady]

Thanks, DL - so frustrating - and I have a difficult work problem to deal with as well. Oh, well - just hate feeling so wiped out. Hasn't been as bad as this before and I managed to get down to 5.5.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

It is frustrating, and working obviously makes it more difficult, but unfortunately it is what it is… as we say on many occasions -you WILL get there, but we can’t promise you when…

[Bluey-1 in reply to Miserere]

Yes! You describe exactly what I’ve experienced. Currently on 7mg for this last month after a slowish taper from 8mg. CRP remains low and no symptoms except intermittent fatigue. I don’t reduce though if I feel ‘hit by a train’. I rest and build in walks to keep muscles going. Frustrating as you don’t know why it hits. Last week was wonderful but I’ve a couple of sluggish days so far this week, ironically it’s a year today since I was first treated for GCA.

[Miserere in reply to Bluey-1]

Thanks Bluey-1 - I am experiencing good days and bad - some are like wading through treacle and I can feel anxious and tearful; others are great and I have energy. I certainly feel that I can't deal with stress at the moment so I think the work problem may have to do without me for the time being - I shall stay silent otherwise I shall start shouting or burst into tears - not worth the trouble. I shall stay at 8mg for the rest of this week and see where I get to. I am eating a good low-carb diet but often feel hungry at the moment as well - probably due to the lack of energy.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

All typically adrenals..so yes give work problem a wide berth...

[Bluey-1 in reply to Miserere]

I too have a low carb diet and feel better on it. I can’t deal with stress at all, emotional, physical, any of it. I am fortunately retired so I’ve put my efforts into pacing, good diet, exercise, rest and sleep (better now than it was). I can’t imagine coping with GCA and work. It has completely floored me although things are much better now. Try a healthy smoothie for breakfast - spinach, Greek yoghurt, mint, avocado, cucumber. I feel full for hours after that. Good luck.

[Miserere in reply to Bluey-1]

I agree, pacing is the important thing as well as good diet and appropriate exercise. I have slept better for the past couple of nights so maybe it will pick up again. The smoothie does sound filling - thanks.