Fatigue big time !

[Jigsawlass]

I had Covid 2nd week of September and returned to work (I'm a music teacher) a week later . I managed a week back and am now signed off until beginning of November. I have reduced from 8 to 7mg with no apparent issues but my fatigue is shocking , the worst it has ever been and I'm resting pretty much all day every day .Any thoughts on why the fatigue is worse ? Is it my body now catching up as I am off work, recovering from Covid or the reduction in steroids ? Any advice welcome

[PMRpro Ambassador]

Can I put you in touch with my daughter? (Joking of course) She had Covid in April (caught it from her husband) and got it again 3+ weeks ago from a patient in the ED. She was off for 10 days, went back to work last Monday and was sent straight home after an asthma attack. Had pred for a few days - her peak flow is rubbish again and a short walk yesterday and a shower this morning each wiped her out. We suspect it is the Covid ... Post viral fatigue ...

[Bobbury in reply to PMRpro]

I had covid in June and I still haven't got my stamina or energy back. It's really hard work to do anything. And to top it off I had a arthroscopy in August and I'm really struggling now !

I hate being like this, sometimes I dont want to out get of bed just don't have the enthusiasm or energy to do anything . I suppose I will get through eventually but it's horrible

[PMRpro Ambassador in reply to Bobbury]

Know where you are coming from! Staying in bed is very appealing! Would save on heating too ...

[DorsetLady PMRGCAuk volunteer]

Bit of both, but probably more covid….. this variant seems to leave people, of all ages, with no underlying illnesses to cope with, wiped out…..

Know a few ‘youngsters’ really struggling….

…no more reducing, and plenty of resting (well as much as you can in your circumstances!)….

[piglette]

Sounds to me like the ‘deathly fatigue’ caused by your adrenals. I could not believe the fatigue, I found it hard work raising my eye lids! Of course it could be due to Covid of course.

[Jigsawlass in reply to piglette]

I wondered about that ...does it improve over time ?

[PMRpro Ambassador in reply to Jigsawlass]

It should improve - but it may be slow!

[piglette in reply to Jigsawlass]

Yes, as PMRPro says it can take time. It is a good idea not to reduce until it improves. It is also a good idea not to increase either unless it gets too much. I must admit I did go up 1mg as I was zombie like

[sandydame in reply to Jigsawlass]

I agree with PIglette because I went from GP and then had a very poor Rheumy and I suffered quite a lot with terrible fatique and refusals to do an adrenal test or increase the prednisone. Nothing mattered but that I stayed at 5m. I no longer have that doctor and I regret that I was not familar enough with PMR to know I was being poorly treated. Considered going elsewhere the fatique can be deadening. May you fiid the help you need.

[Kendrew in reply to piglette]

On a personal level.....I was quite pleased to hear your comment about adrenals. I'm fatigued every day but recently I've been experiencing extreme fatigue some days. I have nights when I'm literally awake all night. Have episodes where I suddenly feel nauseous....usually when I awake about 2.30am-ish early hours and I've developed a few very subtle balance issues when I turn, twist, move, bend etc, too quickly. I don't go dizzy and it's barely 'there' but I'm aware it's not quite right. Could it be vertigo??

I maybe need to consult rheumatology as my GP dismissed adrenals! I'm on 4½mg pred.

Haha!... at least my poo sample came back clear.... BNP blood test on tues to check for heart failure because of breathlessness when walking up an incline. Fingers crossed 🤞

There just always seems to be something to worry about!!

[PMRpro Ambassador in reply to Kendrew]

Vertigo is the name for the symptoms - so yes, you have vertigo. Doesn't tell you what is causing it though.

Unless you have a better rheumy than GP you might get dismissed again. But yes, at this level, could well be adrenals ...

[Kendrew in reply to PMRpro]

Fortunately, I do have a good rheumy now. Prof. D has retired from seeing NHS patients but the new rheumy allocated to me is really on the ball. Thanks for that Pro. Appreciate your response.👍

[PMRpro Ambassador in reply to Kendrew]

That's good - good enough to add to the little list?

[Kendrew in reply to PMRpro]

Yes.

Dr. Fiona Coath. Rheumatology Registrar. She's based at Southend Hospital

She's one of a few people qualified to deliver & translate the specialist 'scans' that may indicate LVV, GCA. You'll have to forgive me.....I can't remember the correct name for those specialist scans.

She didn't talk 'at me'....she talked 'with me' and listened to what I had to say. She also trusted me to know my own body and was therefore happy to formulate a plan of action for the next 6mths, together! She seemed to understand completely about the 'slow & steady' approach and I felt in good hands.

[PMRpro Ambassador in reply to Kendrew]

Oh excellent! There seem to be one or two from that "stable" who appear to have developed a much more approachable style. WIll point her out to jinasc for her records

Do you mean PET-CT or ultrasound?

[Kendrew in reply to PMRpro]

I'm not too sure Pro. All I know, is that there are few rheumatologists here who are trained and capable of reliably reading/interpreting these particular scans. The only reason I know Dr. Coath is one is because our specialist nurse told us this at one of our support group meetings. Sorry I can't be more informative.

[PMRpro Ambassador in reply to Kendrew]

Probably the ultrasound - Southend will have been heavily involved in the TABUL study and PET-CT is more likely to be done and read by radiographers.

[Kendrew in reply to PMRpro]

👍👍👍

[piglette in reply to Kendrew]

That sounds very like me. I would fall asleep watching TV then stay awake until the birds were waking up. I also found my balance was bad, particularly rwusting round. I did start fainting as well.

[Kendrew in reply to piglette]

That's interesting to hear. Yes, turning round quickly can disorientate me slightly.

[readingbooks in reply to Kendrew]

I share yours and Piglette's symptoms ( all of them ! )and concerns and my thought was adrenals playing up. Eventually I had a morning cortisol blood test which read 369 nmol/L ( 100-540 ) is the range quoted by the lab and was told this is considered normal. But the problem persists and I have been referred back to the A fib clinic where my atrial flutter was treated 3 years ago. What next, I wonder. Oh, yes, I have been on 3mg Prednisone for the last 3 months or so. I'm baffled.

[Kendrew in reply to readingbooks]

I don't think we can ever sit easy in the knowledge we've 'nailed' everything! I've yet to experience one single day since diagnosis when I haven't had some symptom or side effect of concern. It seems one thing gets resolved for something else to pop up! Baffled??..... most definitely. 😆

[readingbooks in reply to Kendrew]

Indeed, Kendrew. I even spent a night in the ER recently where, although they didn't doubt what I was experiencing, they could only say that, as ER doctors having done their due diligence, they couldn't find anything that rated as an emergency.

[Kendrew in reply to readingbooks]

I think that's often worrying. About 6mths into Covid I had to call paramedics but all 'vitals' were 'normal', so apparently I was fine. I felt far from fine and still don't know what was wrong, but I definitely know I felt incredibly unwell.

[PMRpro Ambassador in reply to readingbooks]

The trouble is, paramedics' job is to keep you alive to get to hospital and the ER is to stabilise you enough to live long enough to be seen by the rest of the place! Not to diagnose you ...

[readingbooks in reply to PMRpro]

I really appreciated their point at the time and, in a way ,it is reassuring. So on to the next step !!

[PMRpro Ambassador in reply to readingbooks]

I have a lot of time for paramedics and ER staff - but I am biased! My daughter does both - was a paramedic and keeps her hand in with the odd shift when the ER hasn't wiped her out.

[readingbooks in reply to PMRpro]

I can understand that at any time, but especially the last few years, and wish her well ! In view of your comment below re my cortisol level I can only surmise that, under less stressful circumstances, it may well have been lower . Even as a former SRN/RN this is all new to me.

[Kendrew in reply to PMRpro]

Heck.....that's a bit scary to know!

[PMRpro Ambassador in reply to readingbooks]

According to the work I've read - it is still low. Above 450 is taken as the indicator that adrenal function is normal - below 100 is definitely insufficiency. But between is equivocal and you may not be responding to the hour to hour demands. Your adrenals glands are producing cortisol - but whether it is fully functional is questionable.

[readingbooks in reply to PMRpro]

Thank you so much, PMRpro.for those words of caution. The test was done at a time when I had just got over Covid and my daughter had a diagnosis of cancer and a friend of many years had died. I will see how things go.

[PMRpro Ambassador in reply to readingbooks]

Hmm - I might be wrong, but normally I would expect your cortisol to be high when you were under THAT sort of stress!

That was some month - hugs xxx

[Longtimer in reply to Kendrew]

Like you I lose my balance and have to grab the wall, I must look like a drunk!

Also, like last night....hardly any sleep.....

I think it`s so unfair...it takes a long time to be able to lower steroids and then this huge adrenal battle....and mine are supposed to be rising ok....can`t work that one out...you are not alone!

[Kendrew in reply to Longtimer]

Thanks for that Longtimer.

I just think I'm getting a handle on everything and then I get thrown another curved ball.

You're right...it does seem unfair when we've worked so hard to reduce the steroids successfully and then the adrenal 'situation' kicks in. Hey ho!!

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Think it's called Sod's/Murphy's Law 🙄

[Kendrew in reply to DorsetLady]

It's definitely called that....and a few other things too!! Haha! 😆

[PMRpro Ambassador in reply to Longtimer]

It CAN rise - with a major kick. But it doesn't mean your body is producing the other stuff to poke the adrenals to produce it. It is a really really complicated engine!

[Longtimer in reply to PMRpro]

Interesting, where do I get that major kick from though??...have looked up about Hypothalamus ect, but unlike you I`m non the wiser......if only there were things we could do to help the process....

I do wonder that when I eventually get my HC if it will help or hinder....

[PMRpro Ambassador in reply to Longtimer]

It is all the system - like a car may have a full battery and full tank it won't run properly if the car electrics are a bit dodgy or a fuel pipe is blocked. Everything needs to be in sync

[Longtimer in reply to PMRpro]

I definitely know the battery is flat, the steering needs attention!...as for the electrics, I think a fuse must have blown!..... perhaps an MOT is due soon..it`s sure to fail.......just seems like no day is any different....fingers crossed....

[DorsetLady PMRGCAuk volunteer]

It does, but not overnight… have a look at this -plus replies for others experiences /

healthunlocked.com/pmrgcauk...

[Flivoless]

Luckily and touch wood, I've not had covid but I have just dropped Pred from 7mg to 6.5 and have noticed quite a reduction in what I can now do before being absolutely bushed.

[singingloud]

When you are ready to reduce, go down by .5mg on your slow reduction schedule. For the time I would have stayed at 8mg. till you recover. Take care.

[Alebeau]

I am in that same boat and as people on this forum have said (and I believe it is true) it is due to the adrenal system starting to recover.

I am at 6 mg (for the last 2 months) and very slowly reducing by .5 mg only when my ESR comes back down a bit.

I give in to the fatigue and nap if needed. It may be improving slowly as lately I am starting to feel a bit more energetic.

The hope of course is that once my edrenal glands are back functioning that this phase will pass. 🤞

[Anonnomus]

I had Covid in June. My biggest issue from it was the fatigue impact on top of pmr fatigue. It was a double whammy. It lasted about three weeks, then subsided.

[Hildalew]

I have heard several people talk of post-Covid fatigue.