In my best efforts to comply with the recent, New and Improved Guidelines from the Forum Administrators around the relevance and appropriateness (+/-?) of Posts here: I will, for once (Ha - what, me?) try to stay On Topic and ask for your valued advice.
This is my recent experience - and my current conundrum:
My PMR background: Dx PMR 2015, started on 30 mgpd Preds with miraculous relief from the worst of the symptoms. Then, a Roller Coaster, 3 year Pred tapering Journey with many Ups, Downs and sticking points along the way. (I can provide a detailed and highly analytical Spreadsheet analysis of my daily Symptoms vs.Tapering Gradient for anyone here who is interested?).
More recently: currently at 2mgpd Pred and after a month of persistent and dreaded DF (Deathly Fatigue) during a cold, wet and windy January I've (paradoxically?) enjoyed and survived a busy, exciting and full-on week of travelling, being very active physically - and felt better for it regardless. Yay!!
So, my Important and Very Serious Question is this:
Ohh, sorry, I've Iost the Plot again. Maybe due to Brain Fog? Or is it Pred Head? Answers on a Postcard please?
Either way: and whatever your needs, attitudes, opinions and preferences around when, if or how you engage with me or others here, please try to be tolerant of others in the Communication Process. Sometimes, some of Us PMR GCA Lot just need to let-off some emotional 'steam' and seek reassurance and social support. Sometimes, we need the other side of the coin and some hard-and-fast clinical advice.
Only to say: try to keep smiling on the PMR / GCA journey - even if nothing makes sense medically or psychologically. A healthy SOH can help when the going gets tough and / or we can't make sense of what's going on with our types of illnesses.
That's my take on coping with both the medical and emotional sides of PMR and GCA for better or worse..
Best wishes
'Uncle' MB
Written by
markbenjamin57
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Funny you should mention feeling better for being active rather than saving spoons and going at a measured pace. I started to have an inkling of the same thing as I was tapering slooooowly from 5 to 4. I think my adrenals had started kicking in but the whole HPA was wonky, and it felt almost as though the adrenals needed a rather steady dose of physical activity to keep them attentive to their task. I'm almost at 2 now, 26 months into treatment, and I still find that if I spend a sedentary afternoon, getting going again in the transition to early evening can be sluggish to say the least.
Lately, on days when I can control my own schedule, so not on work days, I've started preparing dinner at 4pm. Moving around the kitchen helps. It has been entirely too wet, dark and cold for me the last month to thinks about going out and about, or doing outdoors exercise at that time of day.
That's probably a good sign? I've known both scenarios: i.e. do a bit and feel even more wiped out / do a bit and feel better. I'm guessing it's to do with the HPA Axis / Adrenal function slowly sorting itself out? Either way it's such a perverse illness at times!
Er, what, ME????? Spreadsheets????? Wash your mouth out with soap and water - vile things IMHO. They're OH's thing, and I do believe there is someone on the forum who DOES like them. But it ain't me...
As an alternative: how about plotting the PMR / Pred tapering gradient using music and Mime..? Or with children's crayons, empty washing-up liquid cartons and lots of sticky-backed plastic, Blue Peter style?
Well with all that activity you’ve obviously released your endorphins from their winter hibernation! Surprising how good they make you feel - even manage to combat DF sometimes.
I agree Mark. Is that Buckingham Palace? Have you received a gong for services to diplomacy for the unwell? Congratulations!
The psychological lift from being busy benefits me too. Even if I pay for it, it is time out from dragging about thinking defeatist thoughts. Bring back the jokes, I say!
Just seeing if your still awake, and it's that predictive text thingy causing the trouble. Also i'm in the back row, how do you expect me to keep up
More importantly after 4 years I'm still on 3mg per day. An advise Conversation via a Rheumatologist, advised me that if I am having trouble reducing but things are well controlled on 3mg to sit tight.
He concludes that this is not an infrequent issue with PMR. He advised trying to slowly reduce when I feel ready again. However there are some patients who require longer term low dose treatment to control their disease. He went on to say "We could try a steroid sparing agent but realistically the risk benefits ratio would favour the steroid".
Well I think most of us, certainly those of us with long term issues have read many things from certain members along those lines. I don't have to mention them here. So I call that a result.
Glad to see you back here Pete. Sounds like your Rheumy has the right idea, i.e. not dogmatic and trusting you to decide for yourself. Also, yep: for some (I stress, Some), the alternatives to the Preds bring more problems than benefits. This was my Rheumy's verdict too, in my case at least.
I had a similarly positive conversation last week with my GP surgery's Pharmacist in a Medication Review. He was relaxed, cool, 'got it' re. managing PMR / the Preds and said: "that's ok, we are all different, carry on as you are". Good man..!
Keep well and let's all look forward to a (hopefully) warm, mild and invigorating Spring / Summer. That can help a lot in the PMR / GCA symptoms equation..
MB
p.s. I always enjoyed being in the naughty back row at skool. More fun than being Teecher's Pet?
Not sure if you would ziggy, I did it with wax crayons on my living room wall after a few glasses of the red stuff. It looks like a piece of abstract art...
So pleased you are feeling less fatigued. I do believe that keeping ourselves both mentally and physically active is good. Speaking for myself I am lucky I suppose as I have not felt fatigue during my journey as I always have something going on. For instance I am just about to sand some doors of the work shed opposite my back door. I already at the weekend painted all the woodwork with coloured preservative and is looking good. Method in madness of course as my Son fixed the new bird box he bought me for Christmas which has a camera inbuilt and I can't wait to see the birds nesting. As for a suggestion for others possibly not of course you Mark unless you want to. Creativity of any kind helps when your spirits are down and feeling low and I can thoroughly recommend Adult colouring books which I found great when house bound after hip surgery. With some coloured pencils you can laze away a few hours colouring the flowers, leaves trees etc and then enjoy the finished result. Just one suggestion! Have fun. D
You're lucky to have escaped the DF Dot, it's a vary common symptom of AI disease. I agree, some creative distraction can be quite therapeutic during the tough bits...
P.s. To my previous post. I ought to have said, no smutty comments Mark. I am talking about Adult colouring books for adults NOT with ADULT FORMS to colour ha ha.
That’s better. Nice balance of condition specific combined with the humour.
I have moved off the fence having read about PMRPROs workload, we really don’t want to loose our life saving site so perhaps if we can be a bit more disciplined.in what we post it can be achieved
It is so heartening to see and hear you are so well
That's the main thing! I've learned to roll with the DF so often during my 4 year PMR journey. The Heterogeneity (variability) of PMR disease course, and DF seem to be factors that are often outside of our control - despite the Preds managing the pain and stiffness. That's my take on things for better or worse..
That's the hardest part I think, when you wake up (like I did 3weeks ago) to the DF....nothing treats it....just a miserable waiting game.....but should I put my boots on and go for a run?.....perhaps not......t ying the laces...too much energy!!.......but I tell myself it has lifted before, so it must go sometime.....
OH, gone to have a couple of pints...walks quite a bit between pubs....hasn't been to doctor for 40 years......something in that methinks!
I'm convinced that the continuous cold, damp winter weather contributes to the DF. Body's energy battery depleted, no natural Vit D via sunshine, system struggling to keep up with demand? Only my guess. And as you say, no easy remedy other than rolling with it. Yep, it can and does pass. Your OH seems to have the right idea...
Tried to pop in to say hello to HRH but they said she was out playing Bingo. Oh well..
Yes, I,m sure you're right, things will seem better when spring arrives, just sitting in garden or summerhouse gives me a lift....haven"t felt this bad for a few years.....but it's got to improve!
I wonder if herself in Buck House has ever had DF??.....😉
I noticed the same last year. We get Christmas / New year out of the way but Jan and Feb can still be pretty bleak months before Spring arrives. Just a matter of being patient, I think.
I'll ask herself when I pop in next for a cup of tea. Although I doubt it from the number of public engagements she still does every year. Amazing!
I'm down to 1 mg pred and I think the DF has finally lifted! I actually did some snow shovelling yesterday. Muscles sore today but feeling proud of myself.
Hi Mark,just look at all the posts you have encouraged on here ,proves just how popular you are ! I love your pink tie ,you look a picture of good health .The trouble is we can look OK but still be suffering from this illness. The winter certainly does not help ,the cold ,damp gloomy weather lowers our resistance .l am pleased you are feeling more energetic .lt is surprising how much better it makes us feel to wake uptoa bright and sunny morning.All the best Mark ,hope you continue to feel much better.
Thanks Patricia, I try my best for Us Lot here - and to keep our collective spirits up.
Ok, confession time: the photo was taken a few years ago in London (outside Buckingham Palace) and wearing my best pink tie for the special occasion.
I haven't changed much in between. Just a few more wrinkles: and of course, some PMR aches and pains. But Hey ho, we are all getting older after all!
I agree: after a long, cold and damp Winter, the dawning Spring and Summer should help Us Lot to feel better and more optimistic in coping with all things PMR GCA.
Best wishes to you too, and try to keep smiling in the meantime
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