dreadful morning fatigue

[Avadip12]

sorry , I am still banging on about my terrible morning fatigue. I have posted many times , and just can’t give up searching for an answer to help me feel better . As said before my mornings are like fighting out of an anaesthetic with leg weakness. I was filing my latest letter from the rheumatologist , and I reread my AM cortisol result which was 180 nmols . I have since read that below 170 is classed as insufficient. Therefore I am thinking as I have reduced again perhaps I am just too low to be able to get out and walk the dog . Takes me till 1 pm ish to start to feel better.

your thoughts please , on wether I should ask for a repeat .

[DorsetLady PMRGCAuk volunteer]

Not sure what Pred dose you are down to …but sounds as if you shouldn’t reduce anymore for time being - and give your adrenals a chance to ‘catch up’. Probably wouldn’t do any harm to request another cortisol test and then maybe request a referral to an endocrinologist if it’s still low. But as you’ve been on Pred for so long they may never fully recover so you need medical advice .

As we’ve said many times [if not to you, to others] the only thing to get adrenals going, is very slow taper, tiny steps, time and patience.

Sure you’ve read this, but if not a look might be useful -

healthunlocked.com/pmrgcauk...

[piglette]

Personally when I got the ‘deathly fatigue’ I stayed at the same dose of steroids for several months, I even went up 1mg at one point as I had become so zombie-ish. I did not consider reducing.

[Charlie1boy in reply to piglette]

Yes, I did likewise. Patience, patience, patience!!!

[Avadip12 in reply to piglette]

Yes I have done this, stayed at 5 mgs but the rheumatologist was disappointed that I had not reduced . I explained that I did attempt but it made me feel so fatigued that I went back up.

[piglette in reply to Avadip12]

Your rheumatologist has obviously never suffered from the ‘deathly fatigue’!

[Merryfield]

I seem to have every symptom that comes down the pike, including morning drowsiness after I eat. If you can, give in to it, and take a nap after the dogs are walked. Am on second cup if coffee and can barely keep my eyes open. Will get dressed tho and clean the patio that won’t stay clean due to one of the dogs sneaking off to her hidey hole, then tracking wet mud everywhere. Plus she sheds😳

[Avadip12 in reply to Merryfield]

Oh yes merryfield , many a morning spent in my PJs feeling frozen to my armchair with a numb mind staring at the jobs to be done .

[Merryfield in reply to Avadip12]

That also sounds like a tad of depression.

[Avadip12 in reply to Merryfield]

If only , because I could get treated for that and feel so much better

[PMRpro Ambassador in reply to Avadip12]

Mmmm - but perhaps it is, and some treatment may help you.

[Merryfield in reply to Avadip12]

It could not hurt.

[Avadip12 in reply to Merryfield]

Yes I have explored that avenue , because my friends have thought it , but as I explained that most mornings my level of fatigue is that extreme I am unable to engage in anything . I know that I sound withdrawn on the phone , that’s because even my cognitive processes are affected , and quite often I will turn down the offer of a shopping trip or walk as I am to keep myself away from exertion to be able to cope with reducing and protect myself from yo yo treatment. I feel that my overwhelming thoughts about myself are frustration. I want to do things I want to join in , but when I become more alert I see that I failed to be more responsive to other people’s needs , not that I don’t want to , but because fatigue makes me fail . Oh my goodness I so want to live on a higher dose and lead my normal life again . Anyway thank you for allowing me to write this down . I do realise that most of you on here suffer from all the different aspects of PMR and are fighting your own battles. I am using this forum as a way to let my feelings out and off load my frustrations out .

PS took my steroids after midnight and feel a bit more alert this morning , as you can tell by the above ramblings . So off now to phone a friend and have a responsive chat.

[Mfaepink1973 in reply to Avadip12]

Glad it’s not just me. I sit here thinking about all the jobs that need doing but as they say “my get up and go has got up and gone” so I’m still sitting!

[PMRpro Ambassador]

What dose are you on? Have you ever tried taking pred immediately before bed and if so, does that help mornings? It isn't advised to take pred before midnight - but if you can arrange to take it very close to midnight or soon after that shouldn't affect the low level at midnight which is the trigger for cortisol to be produced by the adrenal glands.

[Avadip12 in reply to PMRpro]

Thanks for that , I am going to give that a try . Off to sharm on Sunday and don’t wont to be knackered all morning as it gets at 4 pm .lol

[Avadip12 in reply to PMRpro]

Was just thinking , I get up for a wee sometime after midnight , could try taking it then . Will give that ago

[Avadip12 in reply to PMRpro]

Sorry I am 4.5 mgs

[PMRpro Ambassador in reply to Avadip12]

No wonder you are fatigued - that is real adrenal insufficiency territory.

[Pixix]

A lot of days…but less now than a year ago! I don’t make any appointments until 10, sometimes 11, if there’s travel involved. When I struggle out of bed, it feels like I’ve had to get up at 2am, not 10am, some days ! I am better by lunchtime, & best in afternoon, then sometimes hit a wall if fatigue about 4pm. But my Dr has just doubled the pain patches & I think it will be a while before the side effects of those wear off. I taje my steroids between 2 and 3am, that helped me see a change. But sometimes I feel I’ve used all my energy before I get downstairs!

[Avadip12 in reply to Pixix]

Pixi , I understand that feeling . Hope we find better days soon

[Pixix in reply to Avadip12]

Hope springs eternal! S x

[AtopicGuy]

Morning muscle stiffness/fatigue/pain is one of the most distinctive symptoms of PMR. It sounds like your current dose of steroids is enough to suppress parts of it, but not enough to maintain your current level of activity.

[Avadip12 in reply to AtopicGuy]

Yes so true , but my rheumatologist does not want me up past 5 again after being stuck on it for yrs . And I am sick of fighting for energy . What am I to do , that has been my discussion. Thank you for replying

[Stills in reply to Avadip12]

Keep fighting, tomorrow will be a new day, start again don’t give up, find the strength it’s there within.

[Avadip12 in reply to Stills]

yes certainly, I am a frustrated fighter . Thank you

[Stills in reply to Avadip12]

Get your boxing gloves polished up

[Avadip12 in reply to AtopicGuy]

Sorry Atopic Guy , not expecting for anyone to answer that statement . It just a quote on how I am feeling

[AtopicGuy in reply to Avadip12]

Tragically, many, many sufferers find themselves in exactly the same bind. If an extra mg or two made things better, I'd settle for that, assuming I was not pushing myself harder than was absolutely necessary to maintain an acceptable lifestyle.

[Merryfield]

Sounds like more pred is needed and you sound pretty down, especially the staring out the window part. So sorry.