Nausea and fatigue: Hi I am new here. So great to... - PMRGCAuk

PMRGCAuk

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Nausea and fatigue

Lyon70 profile image
15 Replies

Hi I am new here. So great to have found this site. Diagnosed 6 weeks ago with PMR, have gone from 15 to 25mg, to 22.5mg. I feel so unwell, pain has been relieved, but nausea and shaking and fatigue is so debilitating. I feel much better late afternoon. I was a fit 70 year old grandmother, now I feel 90.

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Lyon70 profile image
Lyon70
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15 Replies
Ronswife profile image
Ronswife

Hi, I was a fit 67 and now 68. It's hard I know. Great to be out of pain but the nausea, shaking and fatigue will go too eventually. I hope you are able to talk with your doctor. Are you eating a lot of food with the Prednisone? Unfortunately, you must just allow yourself the time to heal. My nausea left first, shakiness took a long time. Fatigue comes and goes. We are all a little different. Take hope in the fact it may never interrupt your life again after this time.

Lyon70 profile image
Lyon70

Thank you Ronswife, so comforting to know that others have the same symptoms, hope they go soon. Yes i am eating, thinking it might help the nausea.

SnazzyD profile image
SnazzyD

Hello,

Yes, it's very distressing to be struck down. No matter how disappointing it is to feel 90, do look after yourself and try not to over do it. This may mean having to say no to people a lot, but is essential. Think about your goal of going back from 90 to 68.

Anyway, nobody can say for sure about your nausea and shakes, but it could easily be your body getting used to the Pred on top of the widespread inflammation. When you're above 20 it is a different thing to being below it symptoms wise, but we are all different. Make sure your stomach is lined with food when you take your Pred if you are not taking the coated sort. I had to take the coated one in the end because my stomach could not cope at all, even with stomach medication. I also found that the Pred made me shakey and weak for hours so I ended up taking them in the evening so I slept through the bad bit.

Another thing that can add to nausea and shakes is low blood sugar. I don't know what you are eating but I got mine under control by not eating sugary things, bread, pasta, rice, crackers etc. This stopped the peaks in blood sugar that are followed by a drop because the body overreacts due to wanting to lower it; it all evens out and it feels better. If you are diabetic though, it's a bit different.

So, top of the rule book of the I'm-not-ready-to-feel-90 Club is be very gentle with yourself.

Lyon70 profile image
Lyon70 in reply to SnazzyD

Thank you for your lovely reply,

Knowing other suffers feel the same makes this disease easier to cope with

Sandy1947 profile image
Sandy1947 in reply to SnazzyD

Four months into PMR and I went from feeling 90 to 80! There’s hope when you commiserate with forum friends!

HeronNS profile image
HeronNS in reply to Sandy1947

Pred has not made me feel younger. I probably felt about fifty pre pred, aches and pains and all, but now, over two years later, I feel my actual age, seventy. Age is more a psychological thing and I, who was never going to get sick, who was never going to feel old, have been traumatized by PMR/pred.😞

Sandy1947 profile image
Sandy1947 in reply to HeronNS

Traumatized is definitely the operative word! I am slowly coming to terms with a new normal.

HeronNS profile image
HeronNS in reply to Sandy1947

Yes, it was only as I was writing those words that I realized I really meant them! This may help to explain why my attitudes towards activities are so different now; it's not just fatigue or laziness, but something else I don't really understand.

Sandy1947 profile image
Sandy1947 in reply to HeronNS

I looked at pics of me from 2-3 yrs ago. Asked my sister what happened, she said PMR! I think this illness is debilitating because of the constant need to plan rest periods, early bed time because I get up at 4:30 am for Pred at 5. Can’t go back to sleep. Not great for dating. Not that interested either. It was my favorite sport!

Lack of energy is not the way I was. Adapting to change requires effort. I thought I would miss work because it gave me a good deal of my identity but I don’t. Still answering client calls until sale of my business is finalized. That takes too much out of me.

Let me know when you understand your attitude towards activities. I think we get clarity as we become more conscious.

HeronNS profile image
HeronNS in reply to Sandy1947

Sandy, I don't know. There are other factors which come into play. For example, I live on one side of a harbour whereas many activities which appeal to me are on the other side and for two years they've been closing the connecting bridge every night to basically rebuild it, and that's clipped my wings. And the other evening there were several things going on within walking distance of my house but I'd had a busy day and, because I'd have gone alone, I just decided I was too tired, so I stayed home. Not so long ago I'd have made the effort. I'm completely aware how bad social isolation is but after a couple of years post retirement I've just run out of the energy needed to get myself out and about. It seems everyone I know is busy with grandchildren or traveling or getting their new book published. No one to trek over to Halifax with to attend a lecture or concert or whatnot, and I'm tired of going alone, or being the person who organizes getting together. Had a great coffee klatsch about five months ago with a group of also retired former coworkers and it only happened because I made it happen. When someone suggested we should do it again I decided to wait for the email to come.... long wait. 😞

Sorry, usually when I write a long whiney post like this I delete it but.....

Sandy1947 profile image
Sandy1947 in reply to HeronNS

Glad you didn’t delete the post. Social isolation is not good for mental health. You should be proud of your organization skills of making things happen. Many times I simply fly solo! I enjoy the theatre, walking in NYC and simply going to the park with my dog. Sometimes we hang at the dog park and I socialize for a while then I’m happy to be alone.

I think it’s time for both of us to find new groups! Wish you were in my “hood!” I attend lectures alone. If I don’t like it I leave. Do you have Meet Ups? I think I’ll try that again. Only problem is by the time I exercise and rest the day is mostly gone. I go to bed early and soon it will be dark earlier and with PMR I’ll be having dinner in my PJ’s! I actually have a few dates a week...try for breakfast or lunch. Monday someone wants to meet me at 7. With this illness, I seem to be less sociable...it’s hard to be on when your not at the top of your game.

Let me know what fun things you plan for the week!

SheffieldJane profile image
SheffieldJane

As others have said, this too will pass. Keep us posted on your progress. I tend to remember my lack of mobility, the pain and the depression when I get bad days on the medication. I hope it settles soon. Did you experience the profound relief of the afore mentioned? It's what keeps me keeping on.

Rugger profile image
Rugger

Welcome,

Have a look at this research paper and you'll realise you're not alone!

healthunlocked.com/pmrgcauk...

As the others all say, it does get better as the pred begins to deal with the inflammation and then as the pred dose is reduced.

Stay with us on the forum and you'll learn a lot and get support when you need it - then give support when you've been here a while!

I'm 70 next year and have got over that 90-year-old feeling!

Take care.

PMRpro profile image
PMRproAmbassador

Are you overdoing things? You must learn to pace and rest appropriately?

The others have given good tips - but if it ia any consolation (I know it won't be really) I felt about 90 and I was a mere 51 when my PMR first surfaced!! Thirteen years later and I feel much younger now - on pred!

Sandy1947 profile image
Sandy1947 in reply to PMRpro

Thirteen years is a long time to feel younger! I feel 80 and I have always been told I looked way younger than my actual age, partly because I am very petite. Since PMR I am dating men who are older than pre diagnosis. I’m a bit more self conscious about looking older since I feel older. Not sure my perception is accurate. I think I need Botox but decided against it. Veins from Pred make me wear 3/4 or long sleeves most of the time.

I am happier because I believe PMR is a gift and slowing down is an important part of the aging process! I like not having time restrictions, traveling more and experimenting with various classes. When Pred Head gets better perhaps my attention span will improve so I can read more books. Right now audio books are fine.

Glad I have a place to rant. Family and friends have had enough PMR talk!

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