This post has gone absolutely haywire and has nothing what-so-ever to do with PMR or GCA anymore.
This could only have happened over a weekend. What Fran will say when she gets back to work I don't know!!!
Thanks (in advance).
PLEASE DON'T ANSWER "It's all in the head" anymore. - PMRGCAuk
PLEASE DON'T ANSWER "It's all in the head" anymore.
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Constance13
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Constance sometimes it is necessary to lighten people's mood. So much is and has been going on over the past, nearly 3 years, that it is essential to lighten our hearts and minds.
I for one now will be listening to more of the Royal Philharmonic Orchestra.
Please don't worry. xxxxx
I agree jinasc - I for one needed a boost and I’d like to thank Constance for the thread x
I'm just embarrassed that the post has gone on so long. I've been told off several times for going off piste - I'll get chucked off the site if just a little "thought" carries so many answers.
Don’t be embarrassed Constance - your thought obviously tapped into something with which many of us identified. And as you say, it is a weekend….😊xx
PS I will stop answering the post, though, as you request x
Sometimes that 'little thought' allows people to just talk amongst others who understand what PMR & GCA is like and what we are going through or have been through. That is absolutely essential for our well being.
You brought a little sunshine into many peoples lives today 🌞.
We need more of that 🌞
Now quit worrying or else................😈
PS I have probably over the years gone 'off piste' more than you anyway. So stop trying to grab👑 my crown.
👏👏👏x
It was the rest of us who carried your post off the track. Obviously there is a pressing need for such an outlet. I just read through the thread and it was very enjoyable.
DorsetLadyPMRGCAuk volunteer
Don’t worry about it - sometimes it’s does everybody a great deal of good to get off the subject of their illnesses for a time.
If we were meeting F2F, I’m sure we would stray off piste - human nature!
You’ve brought back good memories for lots of people - and that can only be good.
Just ask Fran to stop replies I you want.
PMRproAmbassador
Don't worry - she won't complain. YOU didn't go off piste and the basic thought has obviously struck a chord with a lot of people (pun fully intended 
)
I so understand totally your original post. I know when I’m occupied I put the bad thoughts pain etc to the back of my mind they are still there but distraction is a good way to hide them and as you say when you move they hit with a vengeance. I can feel absolutely dreadful a pain or headaches and a friend will call and stop for a chat and I feel better for it but when they leave they return again maybe I put up a false front towards people and block it out. It’s certainly not all in your head I can relate to what you say.
Thank you Suffolklady. That is the sort of reply I thought I would get. I expected just a few answers!!!👵🏻
Still the post helped people to get through a dull, wet Sunday. At least it was here in Germany.
Here we were having a winter storm: high winds, rain, freezing rain, ice pellets, blowing snow, very cold. Today, sunny, windy, cold, Another storm predicted for tomorrow. Never thought I'd say this but I miss the treadmill (not so affectionately referred to as the dreadmill) I left in our old house when we moved. Hard to get enough exercise when the walking is treacherous and your face hurts from the cold. On the plus side feeling well. It was nice to see the sun, and I think this is one of the best things for cheering one up, speaking of what is in our heads.
And we had a lovely sunny day, not a cloud to be seen, hovering around freezing but warm enough to sit out in the sun for a drink or icecream 
I can't remember what a sunny day looks like.🤨
Come and see me
How I wish. 😎🥂🍸
Wow - and I think our weather is rough!!
It's been worse this year than the last couple. Last year didn't feel like a real winter at all. We actually need some longish stretches of properly cold weather to do cut down on the invasive insects which have moved north, like deer ticks which carry lyme disease. So although I don't personally like cold weather I think it is very healthy for our particular environment.
One of the things I love about here is that we have 4 seasons still - spring comes very early and summer is summer and high summer for me compared to the UK. Then autumn is quite long .
This winter has been good really - it snowed, not too much, and then went cold, so there is still snow lying on the fields even down here, Out of where the sun strikes it is still deep winter with thick snow on branches but all the south-facing slopes are clear of snow until you get up high. Love it to bits.
We have a heat pump. We used it a little bit when we first moved in, probably no more than a handful of times. Last winter we didn't need to turn it on at all, enough heat from sun coming through the windows and ambient heat surrounding us from other units. This winter it seems to be on nearly every day. Winters have become unpredictable. They were never really great along the Atlantic coast where we are, much more properly snowy and less rain on the other side of the province, but you do have to worry when the ground doesn't seem to freeze properly at all, when usually it is frozen for a couple of months. We've also had a lot of very dark days, which is why today's sun was even more welcome. And I never heard the term "atmospheric river" until this season, when they had the devastaating floods in British Columbia, and similar right here on our coast, among other things washing out the Cabot Trail in Cape Breton, cutting off communities. 😲
This weather doesn’t doing good for the body if it’s damp I’m a ball of pain if it’s bright cold and crisp I feel must better in myself and even attempt a VERY short walk with my dog in the woods. Good for the mind too but I do suffer afterwards get dreadful heads but at least I have pain for a reason so that’s some consolation.
Do you get the "dreadful head" from cold weather or from bright sun?
Yes, I do. I usually worry that it will go to GCA. If I use decongestants and baclofen, it usually doesn't. If it does, I start w 5mgs of pred. Then in another hour, I take another 5 mg. Next day- sMe. Next day I taper.have been lucky -- this usually is enough - to not go into a full flare . Winters in New York city have been getting really cold periods -- minus 10 degrees, etc. Unusual compared to ten years ago. I worry about this Gca, as we all do.So glad to be back on -- had problems with my computer and the net for awhile. Ok now. Hope all are surviving Gca, Pmr and cv19 as well. All my best, Lynn Bowne Weed --- Whittlesey
Sounds like you have a good system to control any alarming symptoms. I agree about the weather. It has just started snowing again, thankfully got in my walk earlier, but it's likely to all melt in a couple of days, and then we have another deep freeze. Really makes it impossible to enjoy winter at all. I remember when our kids used to be able to make tunnels in the snow or build snowmen and they lasted for a few days, not a few hours. But that's thirty years ago and more, a lot has changed.
Neither really it’s from walking and head movement that causes the pain. Heat is better cold and damp isn’t. If it’s sunny and really sharp weather I have a big thick scarf and maybe a hate. I have a vulnerable head so lots of things aggravate it. Basically my heads to heavy for my shoulders and neck so sitting in my recliner with head support gives me the most relief and that’s why I empathise with Constance with distraction and comfort you tend to forget how poorly your body is then ‘wham’ you move and it hits you.
This reminds me of a time just a few months ago when for some reason I was sitting in my comfy chair to sleep, not lying down. It must have been when my shoulder was so bad and somehow the position when seated was better, Anyway I managed to arrange some pillows and one of them was the sort that kind of engulfs you, not hard, and when I leaned back my head was suddenly instantly supported by this soft pillow rising up on both sides of my neck, and the relief was amazing. I felt like I'd been holding my neck in tension forever and suddenly I didn't have to any more. Since then I've worked out a way to comfortably use a travel pillow to provide similar support when I lie down, also requiring a unique arangements of pillows so it doesn't apply pressure to the back of the head or neck. Yesterday evening as I'm constructing my sleeping nest hubby, for the first time in all these months, asked if I could use some help. Haha. Funny he should suddenly notice, but I have it down to a fine art now.
I can not get my head in a comfy position especially in bed. I don’t know how many pillows I have bought in the past. I need a cloud to lie on. If I lie for hours asleep on my left side I wake in terrible pain. If I lie the other way my hip hurts I can’t win. I think it’s to do with the occipital nerves had a greater Occ block but it’s just sent the pain to another path. Headaches and head and neck pain tend to get to me much more than other pain it’s very hard to concentrate and therefore distract away from pain. Glad you have got some kind of relief strategy with your pillows, everything’s a challenge. Take care
I'm the same (or nearly)! I have arthritis in both shoulders and my sleeping pattern is 'on the side'. However, I do find that small very soft feather cushions help (40cm x 40cm). I can place them anywhere and move them often.
Yes it’s wear and tear on my neck, due to scoliosis. Having the PMR initially made the neck shoulders and upper arms more painful. Reducing the prednisone to 4.5 after starting at 15mg has bought back the old and new pains that were hiding with the drugs pain relief. I don’t do much now and feel inclined not to. No longer can sit and do a jigsaw that was an absorbing pastime, but do Lego with hubby as I can do it without leaning over but only small bouts at a time. It’s no longer pass me the salt as it resides across the dining room table but rather pass me the 1x4 brick lol. But it give me sanity and I forget just for a while how I’m feeling.
Does 5mg work better? I have always said I will use the pred to maintain a relatively pain-free QOL. Without access to the pain clinic and physio during Covid, I had to use more pred to be able to function. Under the circumstances, no contest.
I missed it ???😀
What an enjoyable and helpful string it was! Thank you! I smiled and nodded my head through all the comments and musical suggestions and learned about Mr. Motivator. Can’t wait to try his videos!
By the time I read all the posts it was already lengthy, but it really lifted my day and brought back so many memories , so thank you!
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