Deathly Fatigue?

[Louisa1840]

In my last post I wrote that I was experiencing deathly fatigue along with hay fever/ stinging eyes. As some of you suggested, the hayfever was NOT it was dry eyes. Thanks to all for your suggestions.... all have helped.My question concerns the awful fatigue which descends like a grey blanket around 10 in the morning. It lifts a bit by late afternoon. As I am still on seven and a half mgs of pred which I understood to be around the physiological dose the body needs for its cortisone supplies, isn't this a bit early to be experiencing DF?

I am on holiday for a few days in the north of lovely Tasmania and we visited the amazing 🌷 fields at Table Cape today. I battled through the DF and was lifted by the beauty of the fields and larks singing. But DF necessitated a return back to our accommodation......

Any thoughts please.

[SheffieldJane]

7.5 mgs is not early, it’s about right for this wobble. What a stunning place to be ( Tasmania) As you have learned, the management strategy is about planning and pacing your activities, building in lots of rest, including complete rest days. There doesn’t appear to be anything on offer from the medical profession. I do find that I can do more when I am really enthused about it, like the Warner Brother’s Harry Potter Exhibit, I walked for miles with my grandchildren and didn’t think about fatigue. It took me 3 days to recover and it was worth it to see their happy shiny faces. Any scientist who manages to find a solution for chronic fatigue, a feature of so many diseases and disorders, would become extremely successful and rich. Have a morning Cortisol test at about 3 mgs to ensure that your Adrenals are showing capability of recovery. This bit just has to be endured I think, with a very slow taper and tiny decrements also heaps of rest.

[Louisa1840 in reply to SheffieldJane]

I do so agree Jane that when we are really enthused about something the DF can be overlooked and Grandchildren help. I adore mine.... I will carry on enduring and being patient!

[SnazzyD]

It’s about right for many to be getting the wobblies now. Around 7.5 to 5 or 6mg was the worst for me. My hunch was that it was still too high a dose for the adrenal axis to be fully triggered but too low for my body’s daily needs. I slowly kept on reducing to get out of the no-man’s -land dosing levels. An Endocrinologist whom I eventually saw after a Synacthen test at 4mg agreed with my theory. Sure enough I started to get some glimmers of normality though for me it took quite some time more. It was a deeply frustrating time and the fatigue can hit in minutes out of nowhere. One time I was having a gorgeous slow walk round a stately home and grounds and suddenly my legs wouldn’t hold me. My husband had to get a mobility scooter from reception to get me back. Also, having been a morning bird myself since birth, I stopped being able to spring out of bed.

[Louisa1840 in reply to SnazzyD]

Thank you Snazzy. Reading about your experiences and realising it's all normal, helps enormously!

[PMRpro Ambassador]

Some people start to experience it sooner, even above 10mg if they are really unlucky.

In Holland the tulip fields offer wheelchairs and mobility scooters to help people who struggle to walk for whatever reason. Someone on the forum some years ago was swithering about going, fearful of spoiling the trip for others, She booked for a mobility scooter - and had a whale of a time. She became very popular for carrying bags ...

[Louisa1840 in reply to PMRpro]

I could have done with a scooter today Pro! But it was all worth it.......

[DorsetLady PMRGCAuk volunteer]

No it’s not as others have said… maybe have a read through this if you haven’t already - and the only way is slow taper, small steps, rest -and patience.

Lovely photo 😊

healthunlocked.com/pmrgcauk...

[Louisa1840 in reply to DorsetLady]

Thank you DL. I have read it before but we need to re- read and apply to current experience don't we?

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Yes, it’s an ongoing experience - what was applicable yesterday, may not be today , nor tomorrow…. some patients, and many doctors don’t grasp that.

[Louisa1840 in reply to DorsetLady]

On that topic D.L what do you make of my current hypothesis? I got down to 3 mgs over a year ago, then my grandson suicided and my whole family was plunged into unbelievable grief. I had to go back up to 15 mgs to deal with PMR symptoms. This time on my taper back down I have experienced the dreaded DF but not last time. The only difference is that this time I have cut out all caffeine, alcohol and sugar (not doing so well on that one!). Do you think cutting out caffeine would contribute to the DF?

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Maybe -caffeine is an ” upper” used by many a student or workaholic to give extra energy. But it depends on the amount consumed according to this article I found -

hsph.harvard.edu/nutritions....

I’m sure there are plenty more agreeing and disagreeing… 😊

[PMRpro Ambassador in reply to Louisa1840]

I don't think the claims that cutting this, that or the other aids the return of adrenal function really have a lot of basis unless you were drowning in them as part of a less than healthy diet! Especially if it is a massive dietary change all arriving at once. It is all about what makes you feel better or worse.

[Louisa1840 in reply to PMRpro]

I've always had a super healthy diet Pro, which makes getting this condition seem very unfair but, life isn't is it? I am trying the ginger as suggested on another post recently. I grate it in when I brew my Rooibos tea and it's very nice! I am believing it is helping. Hmm, what was that Placerbol product we were discussing recently? The POWER of placebo!!!! I think though, what I've read about the good effects of ginger makes good, scientific sense. Watch this space.......

[Gimme]

I've enjoyed the DF throughout my pred journey, but as has been remarked many times, I decreased my dose rather fast due to unbearable side effects from the pred. I was down to 7.5 mg from 15 mg after only 3 weeks on pred and I have slowly got down to 5mg. Tweaks to my diet and the addition of vit D and vit B supplements might have helped a bit. I found just enough energy to start swimming again, which definitely does help me, so long as I don't overdo it and rest after. I'm just hoping that it doesn't reappear at my next taper.

I think you are doing the right thing in taking a break, especially for the sake of your mental wellbeing, even if you have to take plenty of rest breaks to get through it. In the long run, I feel sure you will feel the benefits. Hope you enjoy the rest of your holiday.

[Louisa1840 in reply to Gimme]

Thank you Gimme - we head home today in time for my husband to see the footy Grand Final!! You are right about looking after my mental health. It's a balancing act isn't it? I know that the Tulips and being in a new place has lifted me. I was getting rather down with the constant tiredness.

[Stills]

beautiful picture. I’m not even on pred but have DF attacks although I do have a chronic AI illness of rheumatic order and some other new thing going on , I suspect autoimmune thyroiditis or Hashimoto disease . Grandchildren are good for the soul, just baked brownies for mine as we’re travelling to visit them tomorrow. I shall sleep all the way home, 3 hours Kip. Wishing you better days.

[Louisa1840 in reply to Stills]

Thank you Stills. I don't know what I'd do witnout my grandchildren .