Well the euphoria has slipped a bit. I’m still so happy about new doctor but......I don’t know if it’s the Prednisone or PMR or what is happening today. I feel like I’m wearing weights and was hit hard with the fatigue. Headache is intense, indigestion, insomnia, sore tongue, nausea and the early morning Prednisone dose seemed very slow kicking in. I am prone to searching for causes but my fog is heavy and the causes are elusive. I recovered from my mini vacation disaster but maybe not. How often does the fatigue seem to take over your lives? How do you all cope? I’m normally an optimist but maybe the actual diagnosis and possible lengthy journey to remission just clicked in my foggy brain! I’ve noted how much humor you all inject into the conversations. Maybe that’s all I need. So does anyone know a good PMR joke?? Coping mechanisms much needed today. Thank you all in advance!
Turning to you once again! Fatigue plus - PMRGCAuk
Turning to you once again! Fatigue plus
Hello vnett. I had a bit of a melt down today - and felt better afterwards. Totally unexpected as I thought I was doing well, but it crept up on me. PMR is the joke - "pretty miserable reality". I was told to be kind to myself (a personal favourite phrase)! So you know what I'm going to say! Be kind to yourself my dear! Ps sore tongue could be thrush (I had this and got meds). You can talk to your Dr about insomnia (I did and have tablets). Have a super afternoon x
"Would whoever has my voodoo doll, PLEASE give it a rest!"
"So what you're saying is... I should take the pink pill for my pain, the beige to protect my stomach, the white pill to protect my bones, and the green gill for the other other side effects the white pill might cause... "
"Brain Fog: Unable to comprehend sentence... reading it again. Ok. Ummmm, unable to comprehend sentence... reading it again."
YEARS ago one of my students went to New Orleans for an interview. He brought me back a voodoo doll -- to use when students 'misbehaved'. It's gotten a bit ratty (not from use with a pin, but from being played with by youngsters coming in to my office, seeing and and wanting to hold it. Two of my co-workers went to New Orleans last month for a conference. They brought me back a new and improved doll. She's hand-crafted and she's got pink and purple feathers for hair. She's the "Voodoo Goddess of the Lotto", or so says the sign says. Funny thing is the day they bought her, I won $450.00 on a $1.00 lottery ticket. YAHOOO... You may say "coincidence". I'm saying bring on that $457 million dollar Powerball this Saturday. 
WOW! Totally cool!!!!!!!!
I wouldn't be surprised if my ex-husband has my doll likeness in his hand at this very moment... I'm feeling a bit queasy!!!!!
: o
Yikes!! Where is my current husband right now!
Ask for the red-coated Pred
I’m on my third read and I’m still confused but oh how I’m laughing too! I think I knew I could count on you for the “joke”! Thank you so!
Hahahahahahahahaha!
That's hysterical... You're a classic #3!!!!
I also need to ask my husband where he put the doll!!
Hahahahahahahaha! See now you got it... You have me in stitches!
Feel better?
Yes I do, thank you for the giggles!
And now I’m headed for your blog for a little more fun reading!
Thank you!
Love your blog! Exceptional writing filled with wisdom, humor and a very special slant on the complexities of life! So glad to have found you!
Ohhhhh Vnett, Thank you!!! What lovely words... thank you so much!
I am so glad you enjoyed it... thank you for your support!
Hello vnett, yes we have all been there too, like the hangover after the party. Well you might do well taking your Pred dose at 2 am or thereabouts with some yoghurt, then go back to sleep. When you wake up you ought to feel much better. This method deals with the inflammatory substance being released into your blood stream in the early hours of the morning.
10 mgs of Amitriptylin one hour before sleep has dealt with my insomnia. Perhaps that would be a way to get back off to sleep.
Presumably you don’t take any of the stomach protectors like Omeprazole? I actually found yoghurt to be more effective and the odd Rennies ( over the counter indigestion tablet) if a particular meal has set me off.
The sore tongue sounds miserable. I didn’t get that side effect but I always avoid Pred coming into contact with my mouth and drink lots of water or even milk with it. Maybe a salt water gargle would help, or even baby aspirin ( that has helped the dry sore throats I get).
Your headache is a concern because your diagnosis is PMR that could develop into GCA ( have I got that right?) Or is GCA already diagnosed?
Either way, severe headaches need to be reported to your doctor. They could indicate that your Pred dose is not mopping up the inflammation.
Sleep is your best friend. You are going to have to factor daily naps in, if you are to have any evening at all. Be strict, it’s a bore, but it pays off. Then walks in the fresh air. Try to do that every day, just round the block. Sometimes you can walk off the fatigue.
Remember, this too shall pass. 🌻
Insomnia. I have been a lifelong intermittent insomniac. Oddly enough I have less bother with that now than ever. I take one of my calcium tablets (with a small snack) a little while before bedtime. Others have noticed a similar effect from a magnesium dose.
I think the key thing is not to worry about it. You may find yourself nodding off during the day, but that's okay. I wouldn't take sleeping pills, except maybe for a couple of nights to break the pattern. Sleeping pills will not give you the same quality of sleep as natural sleep does and in the long run they can't be good for anyone.
In my insomniac days I used to get out of bed, and sit in a comfy chair in my livingroom and read, or do a crossword or something. I might fall asleep again, or I might not. But I've always trusted my body to give me the sleep it needs, one way or another. It is really only in modern times that we've all decided we need to sleep eight hours in one block.. Throughout human history we would sleep in a couple of stages. I think in Elizabethan times it was common to take your sleep in two sessions, with a middle of the night wakeful time.
In a book by Doris Lessing there's a wonderful description of waking up in the night and hearing a little murmur outside (somewhere in the Middle East I think, room overlooking a courtyard) and in the courtyard were all the local women socializing in the middle of the night, free of children, menfolk and responsibilities.
There’s a wonderful calmness to your reply! And I may be searching for the book you’ve mentioned. What a lovely description stating something so true. I have always turned to a good book when distressed or tired. Book, trust and snack(very nice!). Thank you HeronNS.
I once did a lovely meditation course with a Brahmis Kamaris nun, one on one for 6 weeks. She told me the God was really listening at 4 am and that was the time to communicate your hopes and fears. A lot of her lessons have stayed with me. I find it quite easy to slip into a meditative state still and have no fear when sleep won’t come.
I do a short meditation first thing every morning now, a simple one. It does help. Although I would love to be sleeping better I do so enjoy the very different quiet of the early morning hours. Since I’m now taking my Prednisone earlier I may try to meditate at that time and listen and be heard🙏🏻
Thank you SheffieldJane for the good advice. I did try taking my dose in the wee hours of the morning and it did help so I will be setting my clock tonight or I will still be wide awake anyway. Yogurt is my friend these days but I am also on Pantaprazole for reflux. It’s failing me miserably and doctor said we could make adjustments on that. I will ask about the sleep aid. Is Melatonin ever helpful for anyone? I’ve started taking the naps but the moment I settle in I’m wide awake! I’m drinking water faithfully in part to also help with the constant dry mouth. I like the salt gargle idea and it has helped in the past. I am not GCA but doctor said she’d watch closely. I see my eye doctor next month. Both mother and father had glaucoma and very thick cataracts so I’m monitored closely. My rheumatologist told me to inform her of the PMR diagnosis. As for the headaches, I do have a long history of migraines and sinus issues as well. I will message my doctor about them persisting. I love to walk and my husband and I have always taken long ones in all the Chicago weather. I hope to get out today. We live on the 35th floor and at the moment it seems a challenge. How about my balcony for some fresh air right now! Maybe a nap then a walk? You’ve offered wonderful advise. My favorite part at the moment is “this too shall pass”.
I had a bit of a paradoxical reaction to Pred early on and slept better after starting it. Now, my sleep wake cycle is crazy, at 6 mg, I find myself up late and waking too early. I started taking some melatonin, 3mg at first and now 1.5 or just .75. Need to get myself to sleep earlier, especially now with daylight savings and early morning light waking me too early.
But you might want to ask your Rheumy re this. I've been told by my pharmacist and my GP that it's OK to take it, but I've read maybe not.
PS I was slightly nauseous the first few months on Pred. It helped with putting myself on a low carb diet and weight loss.
I use the 3 mg of Melatonin and it works but may take a few months before you notice. Also magnesium tablet and calcium with D3 at night though the calcium can be earlier in the day. Good sleep helps with a lot.
If you are going to try melantonin then do discuss it with your doctor first. And if they say OK - be wary. PennState Hershey Medical Centre says
"Steroids and immunosuppressant medications -- People should not take melatonin with corticosteroids or other medications used to suppress the immune system because the supplement may cause them to be ineffective."
pennstatehershey.adam.com/c...
So if you feel you are developing a flare that may be why. There are other contraindications for melantonin too.
You have gotten excellent advice. I read some of your recent posts and see that your Rheumy encouraged you to get in touch with her should you have any unusual side effects. As this is Friday, it might make sense, if your symptoms haven't receded by early afternoon, to shoot her a message.
If you are concerned, it may put your mind at ease. Mental stress in the early days when my body felt alien to me didn't do any good for my condition.
You will get used to what is a normal reaction for you and what is not, and normal changes with tapering and the status of your PMR.
Take care.
Alien body is exactly how it all feels. But as you’ve said the advice here is so helpful. I’m already feeling better. And yes I’m at ease with messaging my doctor. Wonderful support all around. Thank you Hindags!
BTW, reading your interchange with SheffieldJane, I discovered that early morning dosing made a big big difference for me, but taking it in the "middle of the night" (4am) was awful for me on two accounts: I interrupted my sleep, and it made my reflux worse. My Rheumy put me on Rayos, a delayed release formulation that I take with a snack at ten PM. I has a coating that slowly dissolves and then the pred inside becomes active before the early morning inflammatory particles are released. It has made a world of difference for me. (I moved my omeprazole from bedtime to before dinner so it would have a time to do its thing before the Rayos. I also take omeprazole before breakfast).
It is an expensive drug, but my insurance, Medicare/Kaiser covers all but my $5.00 copay.
Just an FYI
I will take note of the reflux as I experiment. I did look I to the Rayos. Unfortunately here in th US it is just horribly expensive and not covered by my insurance. Until recently I took very few meds and took basic prescription coverage. I may be reevaluating my insurance soon. Thanks for info.
I live in California, so I know how expensive it is. I am lucky that Kaiser/Medicare cover it.
Sorry don’t know ny PMR jokes. 🙁 Have just returned from OH idea of a weeks holiday, has taken me over a week to recover from the Deathly Fatigue, have actually put a load of laundry in the machine. Rest is the only way. Just remember that sitting watching the garden grow, or if no garden a pot plant, is a valid hobby. All good wishes. 💐
Rest and ignore that laundry. My daughter told me buy extra pjs and ignore the laundry for a few days! I absolutely do believe that doing nothing is actually doing something! I need to buy a potted plant for my balcony!
Thank you CT-5012. You continue your recovery from your holiday!
Doing nothing is tops! Unfortunately in this modern world we’ve nearly forgotten how to do nothing!
If PMR does nothing else it will retrain you to stop and stare, and just let your mind wander.
Plus as you say, you weren’t actually doing nothing ALL the time...you decided you need to buy a plant for balcony......that’s enough hard work for anyone! 😏
I am so well prepared to let let my foggy mind wander today!! Enjoy your day as well!
I have thank you ..I went o Pilates class this morning, so I feel smug....and a bit more mobile than some days...and then let someone else do my weekly shopping and deliver it....I just had to put it away. (Well I had to order it, but that was yesterday’s task!)
Pilates.....how do you accomplish that? I’m only up to gentle stretching!
Hi,
You have to remember I’m a lot further along than you!
In fact GCA been in remission almost 2 years! Although I did start when I was still on low doses of Pred because my legs muscles needed building up - partly due to Pred and also arthritic knee needed some help. Plus most of it’s done lying on a bench, but that’s not to say you don’t notice it if you’ve not done it for a few weeks 😳 as I found out first week back after NZ trip.
Good for you on remission and determination! I do hope to try a bit of seated yoga soon. I have another planned family trip on Thursday that once again involves driving and flying and suitcase dragging with assistance this time! I want to get past that, recover from it(should be easier armed with proper Pred dose this time) and then start one more phase of assisting the Prednisone with light exercise and better dietary choices. At least this trip involves sitting by the ocean, eating seafood and pure relaxation with loved ones. Have a wonderful day!
Did you sufffer from pain in your legs? Since yesterday I have had sore legs from my knees to my ankles
No, no pains in legs, I had GCA only so all pain from shoulders up!
It’s just that I knew my leg muscles were weakened by the Pred, so I started Pilates as a way to improve muscle tone.
About 7-8 mg pred, I recall being crushed by fatigue. I discovered the solution for me was to stop, and take a little rest. It could be as short as 15 minutes,( maybe 45 minutes, maybe 2 hours) but giving myself permission to lie down, and rest.
After resting, I felt like I had gotten my ‘second wind’, and could start another brief activity. At the very least, my “naps” allowed me to have a little energy to enjoy the evening.
Fatigue was extreme when my adrenal gland was resuming activity..as I tapered through 7-6 mg prednisone.
It seemed to come in cycles of a week or so..., then gradually eased away.
If you check the archived posts, at the Right side of your screen under heading of Topics, you will find a treasure trove of information, written as others made their ways through the PMR maze.
As earlier posts said..this too shall pass💐
Kind regards, Jerri
I have started jotting down some of what is taking place so as to maybe find my “cycle”. I am reading the topics and posts looking for the answers while trying to pay close attention to my own body! I sometimes lack patience and want to get right to the solution but know that this will take time and eventually pass! Thank you 1Purplecrow!
I do this too 1Purplecrow. It is so counterintuitive to me to stop in the middle of a job and lie down, but it does work and it is short as you say 15 minutes helps my batteries re-charge. I am taking GREAT hope from “ it gradually eased away”. I cannot wait to come through this part. I keep thinking I should be reducing from 7 mgs. Did you push on through and reduce anyway?
Hi SJ, i have been working thru PMR for 4.5 years. There were many levels of tapering where I stopped and lingered for months.. as many as 4 or 5 months , before starting the next drop.
My experience of fatigue usually indicated I was struggling with the most recent drop.... I would alternate my .5 drop with the old dose for 10 days or so...before I slipped down to the lower dose, or occasionally returned to the higher dose.
Its kinda like playing a violin...finesse and delicacy yields the melody...
This is not a fast process...but once below 7 mg...there is no hurry to to the end.
After all...PMR is the uninvited guest to this party...and is as unwilling to leave as Uninvited...
So much for my early morning wisdom😜 , caffeine calls😁
Kind regards, Jerri
That’s really helpful thank you. I upset things by trying 6mgs rather than 6.5 and my body won’t settle.
Often stopping an hour before you would expect to crash and having a proper rest/nap makes a major difference. In the end you get more out of the day.
I’m still being a bit stubborn and resistant to the seemingly sudden shift in my life. I will come around and hopefully find my way and accept the need to make the changes necessary for my well being. We have such an active lifestyle and this has interrupted it greatly. I read about how all you adapt and know it can and will be done. Thank you PMRpro!
I am glad I am not alone - I feel that U am no longer in control of my life and am struggling with this
Hi vnett,
You might like to read this poem - it’s telling us to do nothing!
William Henry Davies -
What is this life if, full of care,
We have no time to stand and stare.
No time to stand beneath the boughs
And stare as long as sheep or cows.
No time to see, when woods we pass,
Where squirrels hide their nuts in grass.
No time to see, in broad daylight,
Streams full of stars, like skies at night.
No time to turn at Beauty's glance,
And watch her feet, how they can dance.
No time to wait till her mouth can
Enrich that smile her eyes began.
A poor life this if, full of care,
We have no time to stand and stare.
Oh thank you DorsetLady for that gift! How lovely! That was better than a PMR joke! I should commit it to memory and make it my daily mantra!
I think we all could do with remembering the words - but life takes over!
What a coincidence. I immediately thought of this poem, called Leisure, when you spoke of taking time to stare in last post. Lovely poem, my son read it out at Dad’s funeral a couple of years ago as it was one of his favourites. Thank you for reminding me of it. Sue
🌹
I felt I was doing so well, tapering down to 3mg pred. Went to Paris 7th to 10th March by train to London and then Eurostar to see newest grandchild........first child for this son. Had a wonderful time. Since returning I have felt dreadful. I feel so exhausted, I feel as if someone is sitting on me. My head is foggy I cannot think.....nothing new......my husband would say. My gastritis is bad, I have a sore mouth AND feel very sorry for myself. i have gone back up to 5mg but this has not helped at all. I know I should follow up on my adrenal glands but GP wants me to take AA for Osteoporosis and I have not decided yet and am not in the mood for an argument.
Never mind he is a little beauty my grandson. if I knew how to insert a photo I would. May
Hi May,
Would say your current feelings are mainly due to your recent trip to France. Not only physically draining but emotionally too (in a nice way of course).
Why don’t you try a couple of days at a higher dose to see if that helps..if it’s only for a short while you can come straight back down to 5mg easily. Think you probably need to stick at 5mg for longer anyway, as we say won’t do any harm, and may be a lot of good! Plus it gives your adrenals more time to get going again, if that’s what you think is causing a problem. Sometimes it’s just that, time! I know!
As for photo, unfortunately it seems you can only insert one when you write a post, not in a response.
You start a new post and press attach a photo, then go to your own photo album and select one. Then he’ll be there for us all to coo over.
It’s a wrench leaving them, especially when you can see so much you could be doing to help, even as a pair of arms. Journeys are a killer too especially when you don’t want to leave. I would take DorsetLady’s advice and then start planning your next visit.
Hi vnett that's exactly what happens to me nauseous is something I've only just started to get usually after I've eaten? But it's a long road so as you say humour is like a happy gift to receive on that road with our friends helping on this site! We are all in similar boats hoping remissions comes along sooner rather than later.
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