Hi every one, hope you are as well as can be expected.
I have been on 5mgs of preds now for two weeks and seem to be coping okay....except for the dreaded fatigue. feel so drained and lethargic, even taking the dog for a 20 min. walk I come home breathless and weak. I know I need to keep my muscles working but this is ridiculous..spending a lot of time in bed {out of the way} Not sur if I have depression as well..taking mild dose of amytryptiline
Has any-one found the elixir of live yet!!!
Thanks for letting me moan
Stay well
Written by
camerashy
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I certainly haven't found the elixir of life yet. I feel very similar to you and am in the process of reducing to 6 mgs of Prednisalone. The Rheumatology registrar ( who is lovely) has urged me to press on through this and the twinges of PMR pain and the headaches. She has also urged me to continue with my Fitbit increasing my steps from my current goal of 6750 a day and to consider adding in Pilates or some such. Like you my inclination is to go to bed drifting in and out of uneasy, unrefreshing sleep. I stupidly thought that wellness would be awaiting me at the end of my PMR journey but it seems that there has been some collateral damage to my body. Could the solution lie at the end of doing a lot of activities that we don't feel like doing to build up strength? Like tapering in reverse?
No wonder you feel depressed, I do too, just like the undiagnosed days of PMR. Except I now know that it's not me it's the disease, so I can bat off the thoughts better.
I don't know how far you are into your journey or whether 5 mgs is simply not enough for the stage you are at. For me, I think I've got to bite the bullet unless a flare of symptoms is unmistakable. Blerg! At least you have a dear little dog to shift yourself for. I've got a new Fitbit that I cannot understand how to make operational . The one from the research study I've been involved in has to go back. The research study is into fatigue ( bitter laugh).
My problem was the set up. I didn't want all the flim flam that came with it. I didn't want it to sync with my iPad. I simply wanted the very motivating ability to count my daily steps. I use a note book, yes a note book and a pen to record my steps. But no I had to open an app and answer lots of intrusive questions ( I lied) and agree to my details being shared with the whole of America for commercial reasons. Call me old fashioned but I didn't want to join a club and give access to my every move. I JUST WANTED TO COUNT MY STEPS. I realise now that what I have bought is far more sophisticated than I need or want. Spookily it now knows the correct time and everything has gone to naught. I am still not sure if it will just let me do daily step counting.
Sorry for venting, but there are aspects of modern life that I really do not like. Thank you for your kind offer of help and sorry this poured out.🤔
It will automatically start a recount at midnight. I always cough cough my way through questions. Nosey corporations.
It is interesting looking at sleep patterns, heart rates etc. But just look at it pre bed and make a note of steps - otherwise you can just look at iPad. I am a bit of a gadget person I am afraid. I used to teach ICT for several years so acknowledge some are technophobes. My sister's text moniker for me is gadget girl. If there's a gadget for it I want it..just can't afford these days.
Well it is a gift in this day and age gadget girl! At the risk of sounding like one of your worst pupils ever, where on the iPad would I find the readings of my activities? Do you go into the app. ?
Yes. it will be in the applestore/iTunes icon. click on that and search with word fitbit. Then click fitbit icon the ..the picture looks like a dotted diamond usually. ...and click install
Well you are nearly there. The version of it I use usnt very user friendly so if iPad the same it will make you feel like a fool but it's the app. Just click on each goal area and just see what it says. it'll keep chucking you out of the app if you try and go back. But you only have to do one goal a day if you want. Or non if you just want to count steps. You can't break anything...unless you chuck it out the window.
I presume you have learned to Skype for when your babies go to Australia?
Well I have read stories to Sam and Ruby( Aussie grandkids) on Skype but I find it a self conscious process. Disconcerting seeing ones ravaged face at the side. I guess I'll have to. Someone I know just leaves it on so they can glance at each other pottering about.
I think you live in the same area as I do..nr. Rotherham is me.
I saw the Ruemy last month and she said because I wasn't having a flare up ...to continue on the tapering a 5mg. I was diagnosed in May and she was keen to get me tapering as soon as possible. I do feel a bit of a fraud sometime though. Thank you for your comments
camerashy, I have just read your old posts and I want to apologise to you. You were diagnosed with GCA in October of last year and were only on 40 mgs for a few days then put on to 10mgs - is that right? You are also experiencing advanced glaucoma and fear that your sight will be lost eventually. I am the fraud, not you, golly!
In my past life working for the Government in HR I had a number of visually impaired colleagues working in senior positions in the organisation. Computer technology was an absolute life line to them. It was utterly amazing to discover what is out there especially with speaking technology. Like PMRPro advised, research it now. It will make all the difference. Keep us posted on how you are.
I hope you can achieve the fitbit goal. I remember the feeling of disappointment when I first got it and got nowhere near the 10,000 steps target. And I mean nowhere near. I took it down to 3,000 So it cheered me on if I got there, but got to admit it has been too far for months. I have it at 5,500 at the moment and adjusted the stride lenght from the ambitious one the fitbit comes with to my shuffle, but don't hit target that much. Yet I still like having it. If I stay in bed I have 2 floors to go up and down for drinks etc. so I include the stairs in my total in my head. With the couple of pain based illnesses and the nerve damage to my left leg I class any steps as an achievement some days.
Are you wanting it on mobile? If so you use either Google play store for Android phones or (presume) iTunes or apple store for iPhones. Just search on fitbit and download relevant one.
I have bought a Fitbit zip that attaches to my waistband because that is what the research project lent to me and it has been great. It is around £50.00( ouch )and you then download a free app to activate it. I had no idea that I was using only about 10% of its potential.
Poopadoop is obviously much more savvy than I am. But I love my Fitbit Alta HR - it really does make me walk and last 3 weeks have started counting calories so now I'm careful not to exceed my intake. Cutting out white carbs mainly and some other carbs. Keep checking to see what is right for me and what's not PMR wise etc. Since beg May have lost 12lbs, now 9st 10lbs - slowly does it. I hope to reach 9st 4lb which according to NHS is my correct weight. Most of it was Pred induced, and I can't say it's because I'm on a lower dose as I've only reduced half a gm since May.
I'm not easily motivated but this has worked - when I get more energy will start excercising!
Good luck with yours and you will increase your steps.
I love my charge hr. People used to say that I couldnt be surviving on no sleep for 3 nights but this little thing has reassured me I not bonkers. I like the calorie counter etc. I am glad I am not alone in my use of technology as a health helper!!
But strangely I keep all my blood sugar meter scores in a notebook despite meter saving them. and I write insulin doses and other drugs in and my general daily health or in health.
I'm a little late with this reply (lethary - I can't even be bothered to open a laptop /tablet most of the time). I too have written about the fatigue that comes with this and had some wise counsel. I also have the added stress of trying to find a decent nursing home for my 90 year old father who lives, and is in hospital, 2 hours away. As I now can't rely on myself to drive that distance without falling asleep I have the added guilt of getting someone to take me. It all adds up to a weariness and low mood beyond description.
So in my (very short) experience, what helps?
Tackling just one thing per day when I feel at my most energetic.
Letting the housework go hang - who cares about a bit of dust?
Saying no.
Rest, rest, rest.
If you work it can be difficult - I judge each day as it comes. Happily I am self employed so some days I work and other days I don't. Not sure how people cope if they work for someone else.
Elixir of life? No, but you will find your own way.
Good luck with finding a good nursing home for your dad. I eventually decided on one round the corner from my home for my mum who had advanced dementia. It wasn't the poshest but me going there daily and making a relationship with the staff and residents helped everything. It was such a stressful time my heart goes out to you. Your advice for fatigue and low mood is really sound!
My suspicion is that you probably need a bit more pred - but there is only one way to find out. At present your fatigue is almost certainly poor adrenal function - if you stay at 5mg and your adrenal glands are able to work they will catch up and the fatigue will go. But that is a balance you have to achieve.
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