managing cortisol levels

[Hindags]

PMR 12/2016, DR Pred at 22:00, tapering 6-5 on 38 day taper.

I am currently dealing with a late afternoon slump issue. It has changed in character over time, since last November when I was at 9-8mg. At first they were very pronounced weak wobblies felt mostly in my thighs. Then they smoothed out a bit and got better but definitely a trough in energy. Lately at 6-5 the weakness seems to come with some melancholia. During all this time, I've felt better after dinner, independent of what I've had for dinner. Snacks in the afternoon aren't as effective.

I've been trying to understand the cortisol cycle better. I am pretty sure that my adrenals are trying to come back to life but have not regulated yet. I find waiting and hoping fairly frustrating. I want a list of Dos and Don'ts. lol

I read this article which has been posted here:

cssassociation.org/patient-...

I found this last week: womenshealthnetwork.com/adr...

Just found this article: experiencelife.com/article/... .

All seem to point in the same direction. What we eat affects our cortisol levels.

Has anyone found a workable formula?

And yes, I know sleep, patience, and not overdoing always have to be part of the PMR regimen.

[SnazzyD]

Same pattern with me since 7.5mg. I’m just on 6mg which I think I’ll stick to for a while. I take my coated Pred at 5:30pm which starts going in about 10-11pm.

[SheffieldJane]

Thank you so much for the useful links. I was diagnosed in March 2016 and am currently beginning a slow cautious taper to 6.5 from 7 mgs. I take Pred in one dose at about 8.30 am with Greek Yoghurt and a little local honey. My energy dip is quite profound at around 3 pm. I seem to need a deep sleep of about 90 minutes. I wake up unrefreshed but I can have an evening. If I resist a nap, I just fall asleep later. I feel quite lively at about 4 am which is inconvenient. I am aware of a black crow on my shoulder during the day ( gloom) sometimes. I am also aware of short periods of feeling clear headed and completely well, which I analyse until it goes. I’ve got an awful feeling that there is no magic formula, it is what it is and just has to be got through. Regular eating does help. I crave sugar like an addict. Never have in my life before. I have headaches and the odd sharp shoulder pain apart from that fairly painfree.

[morrison in reply to SheffieldJane]

I know my dear about this terrible fatigue. Hope you feel better. Take care xx

[JulianJ in reply to SheffieldJane]

I get home from work and have to sleep, may only be a 20 min nap, but I have to have it. Saturdays are different, I get up breakfast and then I can sleep for hours! If I don't I'm lost, can't concentrate as the fatigue is digging at me.

As for the black crow, for me, work keeps it away, always something going on. I could imagine me being a different person if I wasn't in work.

Eating, don't put a packet of biscuits next to me, I'll eat the lot.

If I feel anything new or good, I make a mental note of it and only react it it's not a good feeling. My shoulders often feel painful and if I'm not careful I tense them and make it worse. Concentration on not doing that is about the biggest thing I do.

[Hidden in reply to SheffieldJane]

I know it's a pain. Once 3pm rolls round I feel my eyes closing and jaw dropping open. My sister says I was walking round with my jaw on the floor looking daft 😂😂

[BonnyQuine in reply to Hidden]

Oh I know that feeling so well, Poopadoop. I call it 'hitting the buffers'.

[BonnyQuine in reply to SheffieldJane]

Sounds familiar, SJ. I'm also, again, trying a cautious taper from 7 to 6.5mgs. Have you noticed the black crow more as the weather improves? Mine seemed to stay away in the winter, but has started putting in an occasional appearance now. Most annoying new symptom = a sort of low grade vertigo. Comes and goes - just to add to the joyful mix! Agree most likely 'it is what it is and just has to be got through'.

[PMRpro Ambassador in reply to BonnyQuine]

Interesting - wonder if I could use that to describe the waves of something that wash over me...

[SheffieldJane]

Hello Janette, We were wondering about you today, and here you are. I hope mamici notices you too.. x

[Rimmy]

Thanks Hindags - all articles make interesting reading although I am cautious - I think that no 'one size' or response necessarily suits all. The whole subject of 'adrenal fatigue' is seemingly contentious as there has been so much discussion on this subject - some of it obviously far from 'scientific' - and some doctors have come to regard the area as 'corrupted' with a bit much 'mumbo-jumbo'. Although I can see their point - I think this is kind of unfortunate for those of us taking corticosteroids for various reasons and who have to manage the individual complexities of tapering in response to various illnesses. While clearly what we eat and when is very relevant - there are so many 'mechanisms' (if that is the word) involved it seems a case of having to figure much of this stuff out as we go in terms of our individual experience(s). This is just my impression in this world of increasingly complex (self) health management.

Rimmy

[Hindags in reply to Rimmy]

I agree with you 100%. It is probably very individual, as is the effect of the low carb no added sugar on weight loss. Most people here who have tried it, including me, seem to have been able to avoid Pred weight gain, and have even lost some weight. But not all!.

Sometimes I get irked about the lack or research. Pred has been around for a long time and people with rheumatic disorders have taken it for extended periods of time exposing themselves to adrenal down regulation. Yet I have not read of anyone here who has been given any guidance aside from patience and rest etc on how to support the return of healthy adrenal functioning.

Have I missed something?

[DorsetLady PMRGCAuk volunteer in reply to Hindags]

No you haven’t missed anything, well except for my post seven months ago. There is very little information “out there” which is why I posted it. And that is written by patients. same as your css link, but you mat like to read replies.

healthunlocked.com/pmrgcauk...

As Rimmy says, one size doesn’t fit all, so it’s trial and error mainly. Plus majority of patients on long term steroids are in our “age” group - not a lot of interest from scientists to spend time/money on research!

[SheffieldJane in reply to DorsetLady]

Thank you for reposting this very useful information DorsetLady! Do you have the version that allows a little cake and chocolate? No I thought not, must have dreamt it. 😋🍩

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

As we’re always saying “ a little of what you fancy” 😉

[SusanEleven in reply to DorsetLady]

My rheum doc says the research money goes to rheumatoid arthritis and sadly no one seems all that interested in PMR.

[DorsetLady PMRGCAuk volunteer in reply to SusanEleven]

Yes well RA does affect younger and more people, do I guess that’s not unreasonable.

That’s why we must support PMRGCA charity as much as possible.

[PMRpro Ambassador in reply to SusanEleven]

Much the same as breast cancer gets a lot of support - other cancers rather less.

[xdbx]

Very useful links! Thank you 😊

[BonnyQuine]

Thanks for info, Hindags. Will mull it over. Agree that I do tend to feel better after meals - hadn't really noticed before. Guess I can't use it as an excuse to have more meals? No, thought not.

[Hindags]

Today I ate differently. I had my usual one egg and extra eggwhite a bit of cracker bread and chevre and decaf coffee. At lunch I had cold sliced lamb and a small amount of lentils cooked with greens. More heavy in protein than usual. My afternoon was a bit better than usual. Will try again tomw. to see how it goes.