How do you beat FATIGUE from PMR 070421

[STRAPCOL]

How do you beat FATIGUE from PMR 070421: Thats my biggest problem with PMR: Any ideas would be very helpful. I was on prednisolone for 22 months and now I am off it about 22 months. The fatigue was far worse when I was on predniscolone. I started on 20mg tapered down to about 1 mg then back up to 3 or 4 and went steady on 5 mg for a while eventually slowly weaning off completely. I found predniscolone great at the start but after a short while fatigue set in so much so that I could sleep on the street. The side effects from Predniscolone are not so nice, fatigue and vision blurring etc. I am more or less pain free and I am grateful for that. I have resent my full story a few minutes ago so that anyone can read it. There is a lot of experience at this forum and I would be very grateful for any tips. I will say I am inspired by the caring members of this forum and that in itself has its own healing power.

I wish all of you relief from, if not a cure from this debilitating condition.

[SnazzyD]

Have you ever had any check of your adrenal function?

[STRAPCOL in reply to SnazzyD]

No, I haven’t, thanks for your reply.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk......

The fatigue is partly the autoimmune disorder and partly, for some people at least, the pred. Some think they have wings, some are just flattened by it.

Being on pred is not a cure, it manages the inflammation and so the symptoms that causes. The autoimmune disorder chugs on in the background, almost like a permanent flu and makes the muscles intolerant of acute exercise. If you try to do too much, the result is overwhelming fatigue, possibly accompanied by DOMS, delayed onset muscle soreness, due to the sort of injury to the muscles that is the componenet of "training" but the muscles are not able to recover as they would normally.

Once you get below about 8-10mg pred, depending on the person, you are into the return of adrenal function territory and that in itself bring fatigue with it. Most people would say it takes a good year after getting off pred before they felt back to anywhere near normal but were very aware that they were older than pre-PMR and of course for most people that also means a loss of fitness.

[STRAPCOL in reply to PMRpro]

Thanks PMRpro, your comments fairly well align with my experience.

[Hopingsail in reply to PMRpro]

Thanks for this - very helpful rationale. So much to learn and take on board as a newbie...

[softekcom in reply to PMRpro]

This description - "almost like a permanent flu" with muscles intolerant of acute exercise - is perfect. The fatigue, the chills/sweats, the pain all over...

[Daffodilia]

May be programme in a nap in the day and pace your exercise?

[STRAPCOL in reply to Daffodilia]

Thanks Daffodilia, I probably need to lighten up at times on the exercise. I have tried the napping a few times in the past but it made me more drained, however there is no reason that I shouldn’t try it again.

[HeronNS in reply to STRAPCOL]

Secret to a successful nap: don't let it last too long or you go into a deeper sleep phase and that can be disorienting. I also think taking a caffeine beverage of choice just before the nap is a good strategy. It's recommended for staying alert during long drives. Have the coffee before the nap, then when you wake up you are alert.

[STRAPCOL in reply to HeronNS]

Thanks a million HeronNS, that’s new to me and sounds like a great idea, I will try it.

[HeronNS in reply to STRAPCOL]

I haven't tried it myself, but it was on a tv program talking about driving safety. Hope it helps you! P.S. let us know! I have found sleeping too long during the day is very disorienting but I usually only nap inadvertently, not intentionally, as when I nod off over a book or something.

[STRAPCOL in reply to HeronNS]

Me too.

[_charcoal_ in reply to HeronNS]

Never heard of that - - must try it. With hindsight, I've "napped" only when quite tired and then just gone to sleep as you describe.

[Daffodilia]

I like Pilates and walking or nordic walking and swimming when the pools are open. I cut what I did in half when I got PMR. Lavender oil (dab it on a hanky) might help with naps or I actually prefer Lemon. Good Luck.

[STRAPCOL in reply to Daffodilia]

Thanks again Daffodilia, I'm off now for a brisk short walk, 1st of 2 today. and I am looking forward to my veg soup mix which I have brewing, plus a tin of salmon with gluten free wafers. If the cistertian monks had to go on a diet like I am on, they would down tools. Take care.

[Hidden]

I am not on pred, no painkillers and not on other medication. But use LDN sine 4 1/2 weeks. It is besides a imuun modulator also a mood enhancer. Feel full of energy and can handle the world again with ease, dispite the fact that I still have pain in my shoulders and upperarms although the pain reduction is at least 50 % and no hip pain anymore. And it has no serious side effects and is safer then asperine, ibufrofen,.....can stop it any moment.Takes about 2 to 3 mònths to be fully active. On facebook is a userrgroup for LDN for many immuun disorders. Has about 36 K members. Many got prescriptions from there functional doktors or even reumies. See also LDN research trust. Is off label so do your own research first. It is also very cheap and affordable as most insurrances won't pay.

[Hidden in reply to Hidden]

I see on your next post strapcol that you also practice Wim Hof breathing. I did this before my start on LDN combined with a Ice bath. Has similar effects as LDN but only last for max. 2 hours for me. On LDN it last for me full time so skipped Wim Hof for the moment. However I think it should benefit me from a general health benefit. Stick to cold showers and hot magnesium baths for the moment in addition to LDN.

[STRAPCOL in reply to Hidden]

Thanks a million GertG, I will check out LDN. The benefits from cold showers as you experienced lasts for a short time.