Looking for cure for extreme fatigue

[Ozark]

Lately I've experiencing extreme fatigue. When I first came down with PMR I had pain but after starting pred the fatigue was minimal. Now it is the reverse, I have only mild pain and stiffness but my daytime fatigue (not sleepiness) is sometimes extreme. I have been taking 7.5mg of pred and I'm wondering if that is really enough for me to tamp down the inflammation which I think is causing the fatigue symptoms. I'm going to try 8mg to see what that does. The pred at 7.5mg is considered a cortisol replacement dose and perhaps my body needs a bit more than that to be a full replacement. So I guess my question is have any of you raised your pred dose in order to relieve PMR fatigue symptoms and how did it work for you if at all? Thank you in advance for your reply.

[markbenjamin57]

Greetings Ozark

Well, I think you've asked another of the many 64,000 Dollar questions about PMR symptoms and how best to control (if not cure) them! I'm not a medic so this is only my (amateur) opinion. Here goes:

Aside from the typical PMR pain and stiffness, the crushing 'DF' (Deathly Fatigue - mental AND physical) also seems to be a very common symptom of our types of Auto Immune illnesses. Although the standard issue (in most cases) Preds are usually relatively effective in managing PMR pain and stiffness for many of Us Lot, the issue of DF often comes up here despite this. I know it well, and would rate the DF symptoms as arguably the worst of the diabolical PMR trio.

Of course, severe (or even mild?) PMR pain and stiffness can be quite debilitating. But in my experience at least, the DF symptoms seem to operate independently of the others. Yes, it's a paradox: you can feel relatively pain / stiffness-free, but wiped-out with fatigue all the same. I've known this experience for weeks-on-end on my PMR journey. On the other hand: some, or relatively more pain and stiffness but NO DF. Confusing or what..?!

As for a cure for the DF in particular? All I can say from experience is that I'm not convinced that upping the Preds will necessarily fix things. It's more a matter of rolling with it (however frustrating), pacing activity levels, eating sensibly and being patient. The DF might be an indicator of sluggish Adrenal function after a long lay-off: and even if the Adrenals are intact, they are still playing 'catch-up' with the increased physiological demands on them as we reduce the Preds. But it can be a slow old game to restore the body's natural Adrenal / HPA Axis physiological / mental and physical energy balance after a chronic illness like ours. I think there's also some wisdom here around reductions in Preds bringing-on DF and other associated withdrawal symptoms..

There is also the fact that the PMR inflammatory disease course is known to be Heterogeneous. That is, it can wax and wane of its own accord, despite best efforts to manage all of the variables - including its timescale.

So...(!) if you chuck these many and often un-manageable variables into the PMR symptoms equation including any or all of cold / damp winter weather, increased stress (in context), co-morbidities, viruses, infections, the Flu, etc, finding a Solution to the dreaded DF can seem even more elusive (sorry...!).

But that's only my take on things. I'm sure the Aunties and others will be along soon with their thoughts too. Main thing is: try not to let the bouts of DF get you down. Like it or not, they are all part and parcel of AI illnesses like ours, and you are not alone in your experience.

On the Positive Side: bouts of the dreaded / dreadful DF can, and often do get better (i.e. less intense and / or frequent) as you gradually come out of the PMR tunnel.

Again, I speak from experience on the often perplexing PMR Journey..

Best wishes

'Uncle' MB

[Daisychain12 in reply to markbenjamin57]

Dear Uncle. Perfect answer. You astound me. Basically though we are stuffed either way. ( like Tedski) xxxxxx

[Ozark in reply to markbenjamin57]

First I want to thank you for for your very well considered and extensive reply. However, it would seem that some of the other respondents are assuming that my fatigue is related to an attempt to reduce my pred dosage. This is not the case as I have been at the 7mg to 7.5mg dosage level since the onset of my disease 11 months ago. In the beginning I had more pain and less fatigue and now it is the reverse. My doctor has not seen fit to reduce my dose because she still associates stiffness and fatigue with the disease process that is ongoing. It is my belief that my 7.5mg dose of pred is insufficient to compensate for the degree of adrenal suppression and cortisol loss resulting from that dose and consequently I'm experiencing this chronic fatigue. Within a relatively narrow range everyone has different physiological requirements, so mine maybe just a little bit greater. And with that said, I'm now starting my second day at an 8mg dose and hoping for the best. Thank you again "uncle" for your wise counsel.

[markbenjamin57 in reply to Ozark]

No worry, all part of the service

Yes, I know many of Us Lot attribute bouts of DF to a reaction to Pred reduction, and I'm sure this is often the case. The usual wisdom is to take things easy while the Adrenals hopefully get used to functioning on less Pred than previously: and, if not successful, go back to a slightly higher dose to keep the symptoms under control, And, of course, too great / sudden a reduction can bring far more serious symptoms than the DF. That makes sense.

At the same time (and from experience) many other factors can conspire to contribute to the DF, as mentioned before. And, paradoxically, even when maintaining a level dosage or nudging slightly higher, the DF can still haunt us. As you and your GP suggest, it could be as much to do with the Heterogeneity of PMR as anything else? But the Jury's out on that one!

Talking of Paradoxes.. your question reminds me of about a year ago when I felt truly rotten (dizzy, nauseous, spaced out) having nudged to a HIGHER Pred dose (around 7.5 from 6) after some returning pain and stiffness. These new symptoms were subjectively worse than those of the PMR, and my gut feeling was that the Preds were to blame. So I ambitiously reduced from 7.5 to 5 (n.b. do not try this at home) and, Hey Presto, suddenly felt marvellous / entirely symptom free for several weeks. It created some lively discussion here as to why.

Either way, my take on the entire PMR disease process and management of it is that, although we have some of the best possible advice and support here, getting to the often elusive Optimum Symptoms-control / Pred dosage balance can be very much a case of Trial and Error at any stage on the Journey - and, as you say, in an individual's personal context.

It sounds sensible to try 'upping' the Preds a little, trust your judgement and see how it goes? Even the best of Plans can be changed (no implied reference to Brexit..)

Fingers crossed for you - please keep us all posted..

Best wishes

MB

[Ozark in reply to markbenjamin57]

I will keep you posted. Only on day two of the 8mg experiment. I intend to continue for about a week or so. I'll let you, and presumably anyone else following, know the result. Thank you again for your support. As there is no one else around me who has this disease or understands its ramifications I am extremely grateful for this support group as only people have this disease can understand its full dimensions.

[SnazzyD]

Hello. I felt dreadful once I dropped below 8mg. The worst was 7mg. No GCA symptoms, just no go juice, achey, shakey legs and emotional. It felt like I didn’t have enough Pred to cope with the day’s demands but my adrenals were still sleeping unaware that their time had come. The Endocrinologist agreed this was probably the case and since then as I got towards 5mg and beyond that effect wore off. I still have to nap in the afternoons as always but that total emptiness has gone.

[Daisychain12 in reply to SnazzyD]

Omg hang the flags out xxx

[Sho-Sho]

I am experiencing exactly the same symptoms as you at 7.5 level- it really began when I got to 8mg (started at 60mg two and a half years ago), instead of the DF improving it got dramatically worse. My Rheumatologist sent me for the adrenal test which showed no activity at all, so she and the endocrinologist think it's a mixture of the autoimmune condition and not enough adrenalin. So seriously having to pace myself, resting a lot and no stress!! They are thinking of giving a low dose of cortisone to see if that helps.

Snazzy' reply gives one hope as she has obviously been there and come through.

Hope for us yet!

[Hidden]

Hi Ozark

I too am on 7.5mg & just had a day & half in bed following having friends visit overnight!.......

Darling Husband did most of the preparations & cooking, l only had to be ‘Me’ but being ‘Me’ always seems to come at a price! DF as Mark calls it!

Something else l cannot cope with is a TV being on/sound & people talking at the same time, we visited our baby granddaughter yesterday & Mum had TV on (as per usual) but l had to ask to have it turned down! Was l popular!....

My plan with the fatigue is to try & ride it out this time 🙏🏼 fingers crossed & try to keep stress to an absolute minimum.

So going back to your original question, yes l have because it became intolerable & then the PMR started reminding me of its influence so this is me reaching 7.5mg again & hoping to get through it! I don’t intend to try & drop further until after Christmas as it’s just asking for trouble!

Good Luck 🍀

MrsN

[kathleen18]

I am at about the same level as you, trying to get down to 7mg from 7.5mg, was doing well and nearly there, when suddenly experienced the dreaded fatigue for absolutely no reason - so depressing! Went back to 7.5mg yesterday and fingers crossed took only 7mg today. We'll see what happens. I really don't want to go back to 7.5mg or higher after all this time. I have had to cut out so many activities, and rest every afternoon, so boring and frustrating! Good luck!

[PMRpro Ambassador]

You may be at the borderline for you of adrenal function needing to start up again, it happens for some people any time after about 10mg daily dose. But raising the dose isn't going to be an answer in the long term - because if you raise the dose then the adrenals will just go to sleep again. You are just postponing things.

This is a good read about fatigue - from all sorts of a/i disease:

healthunlocked.com/pmrgcauk......

There is also the point that you are getting closer to "your dose" - and yes, you are right that maybe the higher doses of pred where you were well above that dose it might have provided the pred boost that balanced out the fatigue. I think it is the activity of the disease that generates the fatigue - and the inflammation. Not that the inflammation per se causes the fatigue. And pred does nothing for the disease activity.

[Hidden]

I find that fatigue is a big part of the PMR journey. As I start to feel better the fatigue comes along and I'm reminded to rest, read, take time, and pace myself.

[Purplecrow]

I know the fatigue you are discussing. My solution has been to quit fighting it, and take brief breaks. I sit or lie down for 20 minutes, more or less, then start my day again.

Also, the episodes of fatigue will come and go, as you move through the stages of your recovery. Learning to be patient is a huge challenge, and we all come to that lesson in our own time.

I suggest you browse the archives for posts about fatigue...you will likely find your story has been told before, and you may find some good suggestions for living with PMR.

BTW, archives can be found at the upper right corner under

" search healthunlocked".

Kind regards, Jerri

[Ozark in reply to Purplecrow]

Thank you for your kind reply.