Hungover dizzy tiredness!

[Uglow]

The hardest thing for me to deal with has been the feeling hungover dizzy head feeling and tiredness. If I could control this I’d cope better. Hate that I don’t know how to help it. Anyone else deal with this day after day.

[Longtimer]

Yes, definately......it's horrendous...........dizzy, balance bad, and feel so weak, and feel like I could sleep for a week...Mine is adrenals...but it has gone on so long....will pay private to see Endocrinologist after Christmas, Rheumatologist has tried for me...no....

[piglette]

It was the hot sweats, sensitive teeth and fluid retention that got me!

[winfong]

Amen, sister. That's my main complaint as well. Wish I had a solution for you. For me, it's mostly staying at the right dose of pred, not overdoing it, and not fighting it when it happens.

[PMRpro Ambassador in reply to winfong]

Think that is a fair summary!!!

[Uglow]

Thank you everyone helps to feel understood and not alone x

[powerwalk in reply to Uglow]

Totally not alone!! Its shocking, i had ME and fibromyalgia for years but this PMR and pred combo is just awful. I worked before all this but the fatigue of this finally got me, i couldnt keep it going!! I wish there was an answer to it!

[Sharitone]

You're really not alone. I agree it's the hardest thing to deal with. What I find really hard it that it is possible to push on through some little activity, like going to the postbox, think you've got away with it, then pay for it all the rest of the day, and the next. I wish we could have some sort of meter fitted that showed how many energicules we have left before going into negative. Or have a reserve tank fitted.But apparently it doesn't go on forever!🙂

[Uglow in reply to Sharitone]

I hope so it’s debilitating x

[Hidden]

Yes, I have this, together with achey pressure around my head and neck and ears. I find that it makes me feel very tired, and I'm not so clear thinking as I used to be, but I've sort of got used to it and try to get my mind off it. Sorry that you are dealing with something like this, I'm hoping that lessening the amount of steroids will eventually bring relief for you and myself. I am, however, avoiding the bodily muscle pain that I had at the start, though anything to do with the head is a nuisance. Try to enjoy your Christmas nevertheless and spoil yourself as much as possible 😀

[Viv54]

Hi, it has to be one of the worst feelings just dragging yourself around from day to day ! Talking with my DR / Rhumy was not getting me anywhere so i upped my dose from 5/6 to 10. It did the trick for me ,as in able to function and feel like a human ! I know i have to face a slow taper after Christmas, but atm , im just going to feel part of the human race. This is just my opinion and it worked for me. Best wishes Viv🌷

[PMRpro Ambassador in reply to Viv54]

When did you go up? If you are at 10mg for under 2 weeks , you can drop back to the old dose without a slow taper.

[Uglow in reply to PMRpro]

Do you think I should try I’m on 14.5 upTo 16.5 for a week

[PMRpro Ambassador in reply to Uglow]

It all depends why you went up - i.e. have you adjusted your dose because it was too low or have you been dealing with an overshoot - you should go back to the previous dose, but the one above in that case

[Viv54 in reply to PMRpro]

I hate to say this , but over 2 months ago , and have not been able to face coming down .I know I must but one more week for me until Christmas is over ! Btw, I hope you can make the most of your Christmas.The first one of anything is always the hardest.🌹

[PMRpro Ambassador in reply to Viv54]

It will be little different from last year - I was effectively on my own then as he was pretty unwell. But this year I can work to my timetable ...

[PMRpro Ambassador in reply to Viv54]

Forgot to say - I know exactly what you mean! I had to put mine up while OH was so ill and needing me to do so much. But I was much higher so have been able to drop back very quickly so far as I'm not in adrenal territory yet. That will start in the NY if I can get further - but at present I do feel not bad at all.

[Frewen1]

You are absolutely not alone. Such a good description. I actually stagger sometimes, it’s very disconcerting. While not wishing these sensations on other people , it’s comforting to remember one isn’t alone!

[Uglow in reply to Frewen1]

Do you think it’s coz pred to low or just side effects

[Frewen1 in reply to Uglow]

I still consider myself new to this lark ( 16months ) but I’d say it’s the Pred, only because I’ve had it all along, more so since having to add in Methotrexate. I have yet to understand how the whole adrenal thing works, I have to concentrate harder

[Uglow]

Thank you

[bonio]

Yes, I am getting this. Tapering to 10mg so not such a low dose and hope that things will normalise soon. Am awful in the morning but get better through the day though v v tired.

[Uglow in reply to bonio]

I’m on 14 mg

[Stellamavis in reply to Uglow]

I had the woozy feeling when started on 40mg Pred as I’m being treated for GCA (since 2nd vaccine at end April 21.) I was staggering if I tried to walk at normal pace so did baby steps if out walking which took forever to get from A to B…I’m now taking 16.5 mg till end of Dec and am not so woozy so hopefully as we taper down it gets better…my eyeballs occasionally feel heavy and head also.. although all is ok with eyes as had in depth eye test just recently and nothing to show…In the earlier years (July 2015 ) I was diagnosed with PMR and started on 10mg Pred and had no side effects at all with any of the meds taken at that time and only a couple of flares as I bumbled along tapering when I thought I should as had no help given from GP…he didn’t know any more than me about PMR only what he would read from internet.. I also get sensitive teeth now and again but use a sensitive toothpaste which helps but the palpitations I get usually at night are the scariest I’ve experienced..they seem to go on and on and they still continue even now although I’ve recently had to wear an ECG trace for 24 hrs and the over phone appt with GP said all was ok although there was some activity during the night..she didn’t elaborate any further as not enough time as she had other patients to speak to..(her words)..so all info on this site is what helps me cope with this disease and thank goodness for that in this trying time of Covid…

[bonio in reply to Uglow]

Hi, well I didn't get better today and my 3rd day on 10mg as part of 5 week taper. Have been doing this since end Oct and so this afternoon took an extra 1.2 mg. No result yet but maybe that will be enough to get me down to something under 11mg. Trial and error. Yes my GP just tells me to reduce 1mg every 4 weeks they really just don't know this disease but ive been told if referred to Rheumy on NHS would have to wait 6 months at least.

[Nextoneplease in reply to bonio]

Me too bonio 😖 Feel dreadful every morning, literally drag myself around (I have a little pain, but nothing much - it’s mainly fatigue and exhaustion), then gradually improve through the afternoon, have a nap at about 5pm, then struggle to make/eat dinner, before staring aimlessly at my iPad or similar for most of the evening….!

Do you know, reading this back, I wonder whether there’s an element of depression in there? 🤔 And if there were, I don’t think anyone could blame me - or anyone else coping with long term conditions like these. We need a continual supply of optimism to stay positive!!

Thanks everyone for helping to keep me on a even keel 😊xx

[Noosat]

Can sympsthize, but give no solution. After lunch I have to lie down for a couple of hours, hve tried to fight it but that does not work. I have adjusted myself to a new lifestyle, going from very active life to being quite sedentary

[LCfan]

I was on pred from summer 2019 when pmr was diagnosed. I managed to come down from 15mg daily and came off around December 2020. Had a flare and went back to 5mg I think and came down again very slowly. Have now had a few months without it but still feel tired all the time. It's such an effort to get out of bed as I have never slept very well, and sometimes it gets worse. My energy level is almost non existant so I struggle to get through the days and just manage to make meals and do minimal bits of housework. I do have other health issues as well, but expected to have more "get up and go" by now. I completely understand the relentless fatigue so many of you have.