fatigue and nausea

[Meggs01]

I tapered from 6 1/2 to 6mg just over 2 weeks ago. For the last 3 days I have had extreme fatigue and nausea that comes and goes. I also have an upset stomach even though I am on omeprazol. Is all this likely to be my adrenals and something I just have to put up with?

[DorsetLady PMRGCAuk volunteer]

Very likely adrenals…. But does the nausea come at any part time of - say a set time after food, or is it just random…

…you did say in last post you thought you were having problems with the Omeprazole - so maybe follow that up with GP… there are different PPIs.

Link on adrenals… which may help on the fatigue- but it’s usually just time, slow taper, small steps, patience and resting when necessary-

healthunlocked.com/pmrgcauk...

[Meggs01 in reply to DorsetLady]

Thank you for such a quick response. The nausea is fairly random, not too bad yesterday but had it in the night and this morning. The query I had before over the omeprazole was resolved as it was my arthritic neck causing my head problems and I am treating that as something different to my PMR

[DorsetLady PMRGCAuk volunteer in reply to Meggs01]

Okay... would then go back to adrenals...

[PMRpro Ambassador]

Have you done more the last few days? I feel fine most of the time at 5mg but feel noticeably worse if coping with anything official that needs to be right or do more physically, especially at present with the sky high temps we have, 34C yesterday and the same again today.

[Meggs01 in reply to PMRpro]

nothing I can think of, in fact I am forever going and lying on top of the bed for 30 mins!

[PMRpro Ambassador in reply to Meggs01]

I find even a phone call can do it for me - especially to the bank!!!!!!

[Meggs01 in reply to PMRpro]

🤣

[Smithie49 in reply to PMRpro]

Oh boy. Do you echo my aggravation (or worse) with banks. I have power of attorney for a friend, recently sold his house as he's moved into a care home. Trying to get that money into savings accounts has been an absolute nightmare.

[PMRpro Ambassador in reply to Smithie49]

They both have keypad led menus - which don't work when you phone from abroad, even if it is the number for phoning from abroad. So I go round in circles until they answer and it is ALWAYS the wrong department ...

[Smithie49 in reply to PMRpro]

Oh joy. It's bad enough here. Good luck with your next encounter 😀

[piglette]

Looks like your adrenals are in a bad temper at having been woken up.

[Meggs01 in reply to piglette]

I think you are right, I have never known fatigue like it. I have also noticed I have lost my hamster cheeks since this reduction so the Lowe pred is obviously having an effect on my body

[piglette in reply to Meggs01]

I became totally comatose. It was an effort to scratch my nose even!

[Meggs01 in reply to piglette]

How long did this last

[piglette in reply to Meggs01]

It was several months in my case. It may be better for you though.

[Wizards in reply to Meggs01]

I was like piglets. Extreme exhaustion, could Bardo anything and mine too lasted a very long time.My comatose stage was from 2 to zero. Exhaustion was from 5 to 2mg. Unfortunately a long haul for me years and frankly it's been 8mos off and my energy is still very low but slowly getting better.

Slow slow slowly.

[SheffieldJane]

I am getting this symptom at 5 mgs, it is a deathly feeling that I didn’t experience the first time around. Lately, I have been going to bed with a bucket beside the bed. I thought I would be ok on 5 mgs, but perhaps I need to fight my way through to an Endocrinologist again. It is a horrible feeling. The only trigger is slight stress as far as I can make out.

[Meggs01 in reply to SheffieldJane]

That sounds horrible 😥

[Viv54 in reply to SheffieldJane]

OH that sounds nasty, hope it passes soon .🌷

[Pixix]

Yep. Nausea night when go to bed, & on waking in the morning. Have tablets ready in case it goes into vomiting mode! Plus fatigue.

[Meggs01 in reply to Pixix]

Poor you 😥

[Pixix in reply to Meggs01]

You, too! I’m used to it now, it’s part of daily existence!

[Raewynne]

Yes I'm struggling at 4.5 but I'm just taking it easy and resting when need be.I keep a packet of peppermints on hand in the morning. Tiredness can be overwhelming. Tendinitis has been flaring up.Headachey and very blurred vision.I hope it settles down soon.I don't want to have to increase again .

[Meggs01 in reply to Raewynne]

I know people who just sail through the treatment. It’s just a lottery!

[Viv54 in reply to Meggs01]

I dont suppose there are many though.

[jayemmemm]

I'm also tapering from 6.5 to 6 Pred and have the deathly fatigue but no stomach issues. I stopped Omeprazole two years ago after getting a bit nervous about that drug and PPIs in general. I take Greek yoghurt before the Pred which suits me well. Best of luck with the tapering. We'll get there!

[Meggs01 in reply to jayemmemm]

thank you. I do love Greek yoghurt so perhaps I should eat more of it. I have the 5% fat yoghurt as I struggle to keep weight on

[Zebedee44]

This post says exactly what I was thinking of posting and I feel for you and every one of us struggling with this adrenal issue, the last thing any of us need after a long hard journey with PMR and pred.

It’s the waking at night feeling nauseous that I find horrible, although I also have nights when I cannot get to sleep at all and days when I cannot manage anything and even my brain is fatigued! The fact that there is no way through this rough ride is making me depressed and I am now more than ever grieving for the life and the person I was before PMR.

[PMRpro Ambassador in reply to Zebedee44]

Has the nights wide awake feature just started since low pred? I have nights where I lie down and immediately know I can forget sleep before about 3am!!!

[Zebedee44 in reply to PMRpro]

Yes, exactly so. Since reaching 5mg there are nights when I have to get out of bed and eat something to give my brain and my body something to settle me. The worst night recently it was daybreak, 5am, before I returned to bed to sleep. Thank goodness I have Prime TV to binge watch TV, although that probably doesn’t help with getting to sleep. And the crawly skin feeling keeps me awake too, subject of another post this week.

[PMRpro Ambassador in reply to Zebedee44]

Interesting! Must note if it coincides with stressful days ... I haven't watched TV but I have given in a few times and read but I use a Kindle or the phone which would be disapproved of! However, other nights that has never made any difference!!!

[Zebedee44 in reply to PMRpro]

Mine usually preceed days that I expect to be stressful and when I really need the sleep. Like last Wednesday before taking my wheelchair bound 96year old mother to a dentist. Next day she was positive for Covid but so far I haven't shown symptoms.

[PMRpro Ambassador in reply to Zebedee44]

Oh great! How is she doing with it?

[Zebedee44 in reply to PMRpro]

This is her third time, and others in the care home have tested positive. I'm keeping away.

[PMRpro Ambassador in reply to Zebedee44]

Good idea!!!!

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

Listening to an audiobook or podcast would be better than looking at a screen.. notorious for keeping you awake…

[Gossiplady in reply to Zebedee44]

Hi Zebedee44! I give you sincere sympathy. Do you keep a PMR diary? On a down day I would look back and read how I felt and the dosage a year ago, then I realise how far I have improved. I am not the same person I was before PMR and Covid. I have aged at least 25 years in looks and activity. I no longer see the friends I had, nor attend classes, it’s a learning curve of life. But I have new interests , and look at life from a totally new angle. It’s great to be alive and this forum is invaluable!

[Zebedee44 in reply to Gossiplady]

I kept a diary for the first year and a half but the past five years have been manageable on 8mg. Tapering to 5mg has changed everything but I need to be able to care for my fabulous pony every day. That has recently become much much harder and I am struggling to come to terms with letting him go, but having him has supported me through this journey. And this forum of course.

[Gossiplady in reply to Zebedee44]

I understand how you feel about your pony. I have small dogs which I adore and they have kept me sane throughout this rough ride. When I was really struggling to even get out of bed I knew I had to get up for them. Keep your pony ! Life will improve!

[Ridge in reply to Zebedee44]

Oh hang on in there. I hope it will get better for you. Is there anyone who would share the care of him with you? In return for the occasional outing with him? I am sure if you advertised someone would come forward. Some young Mum who used to drive but is now taken up with children?

[humlies]

I think almost all of us must be feeling for you with this extreme fatigue and nausea. I did find that when I got down to 1. 5 mg. pred I began to feel much better, and I am sure there is light at the end of the tunnel - even if the tunnel is a very long one! ( I have now been recommended to up the dose to 20mg, so I am at the beginning of the tunnel again, but I think the light is still there!)

[DorsetLady PMRGCAuk volunteer in reply to humlies]

but I think the light is still there!

It is -but as you’ve found out it’s sometimes another train! Hope that passes quickly and you do find the true light 😊

[humlies in reply to DorsetLady]

Thank you! In a way I have found the true light.... and I think it is so important never to lose hope.

[Gossiplady in reply to humlies]

Well done Humlies! Keeping strong is the best.

[jls93]

I have had the same experience many times with omeprozol 20 mg.For me ot was metabolic issue ,"adrenal fatigue."

Quite distressing until my friends here demystified it

[Meggs01 in reply to jls93]

how did they demystify it?

[jls93 in reply to Meggs01]

Context, and many of my (our) issues have common elements. Until I met this group, I found my many symptoms, issues and comorbidities were not rare which helped me understand /tease out PMR management, metabolic symptoms with tapering prednisone, orthopedic and more. "Demystification" (for me at least) affirmed I wasn't "going mad" or being a hypochondriac which allowed me to pause and gain perspective, differentiate different pieces of what used to be a confusing puzzle of my health. I too: journal many sx, using audiobooks, reading , pacing my days, picking up new hobbies, visiting library etc.. Personally I ascribe to the Spirit, Mind and Body concept and doing something for each every day. You seem to have differentiated your PMR and neck issues, and laying on top of your bed which is excellent! My path in life has included, PMR, multiple joint replacements, etc. My "fatigue", nausea, lethargy, absence of energy etc with with tapering is uniquely different from what I have experienced with post op anemia, post op joint infection and antibiotic course of care x 6month , mononucleosis etc. Sorry if this is to too wordy and I am not preaching, " demystifying" was an acknowledgment and appreciation of the previous posts, context and support this experienced and caring group was providing and how much it has helped me understand and move through issues, and I sincerely hope it helps you too. :-). Take care and by all means pursue your health.

Yes, I am still taking omeprazole 20 mg x 22 yrs. tried a few times to reduce and wean over the years, and all attempts were unsuccessful. However, that is only my experience. Best to you

[Meggs01 in reply to jls93]

Thank you for your very informative reply. I think we are all after the same goal - that of learning to live with PMR and to pray for a future without it

[Meggs01 in reply to jls93]

Are you still taking omeprazole

[PUMC]

I had exactly the same thing at the same age and about the same dose. It lasted 13 days and I lost 10 pounds. I was nauseous all day and couldn’t face food. The good news was one day I just felt better. It was a tough way to lose weight, but that was good for me too. I can feel that my adrenal function is slowly coming back, as I am able to stay awake later at night. I’m at 4 mg prednisone right now, and am going to stay there for a couple months through a shoulder replacement surgery.

[Meggs01 in reply to PUMC]

Reassuring that you did come out of it

[PMRCanada]

I am starting to have similar symptoms having recently dropped from 6.5 down to 6. Throughout my PMR journey I have never had fatigue during the whole 5+ PMR journey, but the past two weeks have been outright different.

It started with sore ankles and particularly the back of my heels (Achilles tendon area) that prevented me from my walks. Nausea and diarrhea (which I first thought was a diverticulitis flare from eating too many treats while on holiday). 3 days ago I was so weary I had to lay down for a nap in the late afternoon. I’ve never done that before (unless I was ill). I also felt agitated and annoyed with those around me. I would experience these symptoms in waves. Yesterday I woke up feeling not so great but an hour after taking pred felt like my usual self. All pain in heel gone away literally within an hour, and I was hungry and happy.

So looks like adrenals are trying to kick in. I explained to hubby and daughter I may be entering a new stage and told them I may just go lay down to rest when needed (and also spend time alone if I’m feeling agitated and moody as to avoid unnecessary conflict). Avoiding stress is important but not always achievable (sigh). One of my biggest challenges will be making plans during this sketchy time….I’ve already had to cancel going to our local fair with my grandsons. Ironically my 2-week holiday recently went off without a hitch (3 flights, touring, walking, driving, visiting, officiating a wedding in front of 100 guests, dancing, etc.). Up until now I’ve felt a bit like a (PMR) imposter.

I’m now wondering when I should start my next taper down to 5.5mg. I usually stay at my new dose for 4 weeks before tapering again. I’m on week 4 of the stabilized new dose now. I’m also mindful that my son is getting married Sept 30th and we have houseguests for a week prior.

I do hope you get some respite from the horrible symptoms. Sounds like the only way out of them is to hang tight and be patient with our bodies!

[PMRpro Ambassador in reply to PMRCanada]

I wouldn't do anything before the wedding is done and dusted! They tend not to happen too regularly ...

[DorsetLady PMRGCAuk volunteer in reply to PMRCanada]

Agree with PMRpro, no further reducing until after wedding - and guests have departed…

[Meggs01 in reply to PMRCanada]

Thank you

[sferios]

This post and all the comments have been so helpful for me, as I am starting to experience these symptoms too now that I am at 6.5 mg.

And I can really tell that, for me, it comes and goes with stress. Even moment to moment.

This post is two months old. I hope you are feeling better now.