PMRGCAuk
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Some vacation, thank you PMR

I am awake while the rest of the family sleeps. I woke up with a sweat like I’ve been getting off and on with the prednisone. Then for the first time a had bad pain in my thigh, like a cramp but more like PMR pain. My hips and thighs been aching all day. I took a bus tour and the steps on the bus nearly killed me. Had to have help down my grandsons front steps this evening. Glad there were only four! About a week or two ago I felt so good I hardly knew PMR was there for about 6 or 7 days. Now on vacation it rests its ugly head. We have a tour of Graceland scheduled today. I’m going to do my best to go and enjoy it even if I have to come back to the hotel after and lay in bed and watch the tv. Damn PMR! I think I’ve been pushing to hard to be “normal” this trip. I forgot for awhile I have to live within my new normal. Thank you for giving me a place to vent while my family sleeps.

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I am so glad that you braved the trip after all. Why don’t you up your dose by 5 mgs just to cover the exertion and then pop straight down again when you get home. It will give you some protection against a flare and make you a bit more zippy. The pains you describe are very debilitating.

I would be rather excited to see Graceland in all its vulgar glory! Elvis was a one off 🕺🏻.

Vent away! Remember when you had to lift your grandsons down steps? Time flies. Definitely watch TV in bed this afternoon until you doze off.

Well done! You’re a star! 🌟

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Can I do that? Just raise my dose of prednisone for a couple of days?

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Oh yes, no problem with a short increase then just drop down as soon as you feel better. 😊

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A number of us have done that to no detriment. Unless you’ve had any specific warnings from your doctor, he/ she would probably agree. This is an unusual circumstance- to see the King!

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Aww sorry to see you are struggling. I had similar thing quite recently. Away on a 'jolly' with college friends from 45 years ago, I managed to keep up mostly but one day we got caught out in heavy rain and my lead legs just would not hurry up. Told them all to go on and I would catch them up, no point in us all getting soaked, but a couple of them stayed back to walk with me and I felt terrible about it. Also took me a while to recover when I got home but wouldn't have missed the reunion, it was worth the extra aches. Hope you feel that way too when you have nice memories to look back on. Rest when you can and enjoy what you can 🌺

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Hi Lanakay, vent away it’s good to have a good moan now and again especially when you are the only one awake. The great thing is that you are with your family. Grandchildren are the greatest at helping, they usually do it with some silly remarks that make me laugh. Holidays can knock the stuffing out of you just being in a different place often makes you tired plus af course the journey, hope you got airport assistance I’ve found that a tremendous help, though it does vary from place to place. Have a good rest even if sleep eludes you, and take every opportunity to have a rest during the day too. Enjoy your visit to Graceland, all good wishes. 💐

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Hi,

As Jane says give yourself a bit of a boost for today at least. You must be at your best to visit Gracelands, says hello from me - Elvis was my first “crush” - and to be honest still is!

Enjoy!

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Mine, too!

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Hi, Lanakay! It’s 4:45am our time and I’ve been awoken by a thunder, lightening and a scard cat. It looks like we’re about to get some rain. I echo everything Jane said! So glad that you went! I’m sure your family is thrilled that you are there. Bummer that PMR decided to remind you that it, too, came on the trip. Did you bring enough Pred that you could up your dose and kick that bad boy to the curb at least for a day or two? Remember though that Pred needs you to be a good partner to it by stopping to rest and realizing what activities you need to pass on. Also, keep hydrated! Sometimes on vacations I forget to drink as much water as I should. Fingers crossed for better days ahead.

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So sorry you are struggling. I spent part of my morning iPad time watching Ben Portsmouth who is an Elvis tribute (on at guildhall Portsmouth next sat - and I must say I'm rather tempted....). He is amazingly good! And I've seen some bad ones. The King lives on! Enjoy Graceland!

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Thank you again. I’m going to take your advice and do this. Our tour is at 9:00am. I’m going to do what I have to to enjoy this. I can rest this afternoon. I may have planned too ambitious a trip. It was a twelve hour drive Thursday, 8:00 am bus trip to Tupelo yesterday but back at 4:09, and the Graceland tour today.

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OMG 😱 that was a bit ambitious not surprised PMR decided to bite but all is not lost just up the pred for a day or maybe two and get more REST. All good wishes for the rest of your visit, glass of something you enjoy and feet up! 🎸

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Wonder if they have mobility scooters at Graceland? Don't be too proud to ask - it is less embarrassig than getting stuck because your legs refuse to go any further. And steps are murder with PMR - they were what got me on the Japan trip in the temples. Little ones are fine, even English house stairs almost finish me even now! The tread depth makes a big difference.

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I’ve been taking My prednisone 5mg in the morning and 2mg evening. I just took 7mg right now. Should that help?

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It may - but it won't help the muscles being overworked. Pred manages the inflammation which relieves the symptoms due to the swelling caused by the inflammation - the underlying autoimmune disorder is still chugging away in the background, attacking the muscles and making them intolerant of acute exercise so you feel as if you have flu and get excessive muscle pain when you have overdone things. The only way to deal with that is pacing and resting and it is why we bang on about it so much.

Hope it does help and you enjoy Graceland - but do ask about a bit of assistance if there is the option.

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Please always bang on about it. Someone new needs to hear it each time.

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Will do!

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And even those of us not new at times need reminding.

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PMRpro, you say 'Pred relieves symptoms due to the swelling it causes'. Is it the swelling of the tissues round the muscles then that stops the pain? I have dreadfully swollen ankles. Swelling increases round calves and feet during the day, especialy when I sit at my computer. I would like to know if this is due to the prednisolone, so i can hope it will go as I decrease the Pred. I am currently at 10mg just reducing tomorrow to 9mg. Doctor prescribed compression socks, but i can't get them on and have given up trying.

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Swelling the inflammation causes - not the pred.

I used to have swollen ankles - and manual lymph drainage made a massive difference in a few days! Pred does lead to fluid retention - especially when you eat a lot of carbohydrate or salty foods or use salt in cooking/at the table. I also found that sitting at the computer wearing realtively tight trousers made it worse - were they obstructing venous return I wonder?

If your doctor prescribed compression socks but you can't get them on - what about trying flight socks which aren't quite as tight? They help me a lot when flying, otherwise my feet swell and I can't get my shoes back on! But there are aids to help put compression socks on. My husband has a frame which makes even the ones he gets here in Italy possible!

mediuk.co.uk/products/acces...

and I'm sure someone has just invented a sliding sock thing - but I can't remember the details or find it online.

Not sure if it is this one:

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Thanks so much for your speedy and helpful response PMRpro. Actually the NHS did issue me an applicator for their compression stockings, and I even had a session with a nurse to show me how to use it. I still couldn't make it work though. I also did get some flight socks instead. Ordered them ƒrom Amazon. I can get those on but it's still a struggle. I may try a different applicator as you suggest.

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I suspect it does take a bit of practice! But if my husband can manage - any one can!!!!!

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Lanakay, it takes tremendous courage to embark on such tours with PMR. I can remember that just travelling on a tour coach one day wrecked a trip around Canterbury Cathedral when we arrived. I just could not walk for the pain so I sat whilst the others did the tour, and hubby and I spent the rest of the afternoon just sitting in a restaurant! I do hope you manage Graceland and don’t have too much further payback tomorrow.

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I’ll be resting for sure after this. This is the first time I done this since the PMR came. I’m learning fast about traveling with it.

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Enjoy every minute - it will be a boost for your morale in spite of the pain. Am excited for you - there will never be another Elvis!

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Do hope the visit to Graceland was great - now all you need to do is pace! Do think you have been very brave and when this holiday is over I'm sure it will really boost your morale

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It’s 90 degrees. Found a bench and air conditioning. Yikes!

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Back at hotel now. The rest of the family went for dinner but I chose to stay in tonite and rest. Hope to feel better in the morning and go for Mother’s Day brunch with the family. I learned my lesson about planning too much. I hate this but this is what I have to do right now. The last 3 days really kicked me in the back side. A lesson I didn’t want to learn. 😩

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Good girl and Happy Mother’s Day! Hopefully, resting last night put gas in your tank for today and you can join your family feeling bright eyed and bushy tailed!

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Slept well last night but still tired this morning. They went to church and will come pick me up after for brunch at my grAndson’s. I think the rest was good for me but I still feel tired and achey. Is this what a flare is like? I wonder.

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I find it can take days for the achiness of having overdone things to fade. It doesn't have to be a flare - just reaction.

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When I had a flare, symptons were like when I was first diagnosed: pain at the temples and head, felt really unwell, erc. I think PMRpro hit the nail on the head in that you just overdid it. It’s your first trip since diagnosis. I think each and everyone of us fell into that same trap of not knowing how truly different traveling is now. Once you get home, do all you can to get as much rest as you can. While there, let your family do things for you! Safe travels home!

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So very sorry you are having such difficulties. I remember them well. In bed resting while everyone else having a hilarious good time. Hobbling when they were frolicking. PMR is no easy row to hoe. May your perseverence and determination prevail. Peace and Blessings, PMRJ

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Today so far I feel pretty good. This trip has been a learning experience for sure. Today I feel the best I’ve felt since we left home. I have learned a lot! Thanks for putting up with my whining. This is my first travel with PMR. I’m sure to get better at it. Thanks to all of you!

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Hi Lanakay, Missed this when you posted originally, sorry. I am also sorry to hear you are struggling. I had hoped that the vacation would be fabulous for you, so sorry you're feeling poorly. I'm proud of you for trying though and for persevering! Good on you.

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I know its a long time ago now but I just had to respond. A massive life time fan of the King and went through Graceland 38 years ago not so long after it opened. I hope you enjoyed it and I hope you are progressing well in your health journey. x

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I really did enjoy Graceland and even more so since my grandchildren enjoyed it with me. I am back down to 7 1/2mg and have been doing pretty well or I’m just getting used to living with PMR. Either way I’m feeling better. How are you doing with your health journey?

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Hi Lanakay,

I am so pleased you liked Graceland and with your grandchildren too.

i was in the EP Fan club and he died the year I left school. I was saving up to go and see him in America and I remember thinking 'oh no, my life is over if I cant see him....@ typical 16 yr old. He was an amazing performer though wasnt he and an intriguing man. I always felt sorry for the way he ended up so lonely. He was the first original mega star....

Re GCA I am being positive and it has been a major wake up call for me and I like the different me. I am hoping as time goes on and I have to do more work that I can maintain the new structures that I need to put in place. I over did id yesterday and suffered for it... :( The insomnia too is is tricky - 3 am time .... I am on 40 mg at the moment and get very sore head if I over do it. I am so used to working through head aches before this happened that now I have to re-tune myself. I am wondering if on Pred you shouldnt feel headaches at all? I have yet to be head ache free but it is no where near as bad as horrendous as when first diagnosed. yoga and meditation is helping a great deal but I wish I had stayed longer on holiday (on a Greek island doing very gentle yoga). its all a journey isn't it. The ups and downs and I am evolving into a very different me which I like.

Heres to having a great day today. Lets be kind and loving to ourself. :)

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I don’t know much about GCA. I was diagnosed with PMR in September 2017 but think I had it about a year before that. I started out with 20mg prednisone and am now down to 7 1/2 mg. After starting the Pred one I was so much better. As I started to taper I did have problems with anxiety and sleeping. It got bad enough that I saw a geriatric psychiatrist and got some help with it. I’m doing ok now. I have learned I had to slow down. I am no longer who I was and am trying to accept that.

My sister and I had seats in the ninth row center stage at the concert he did in Omaha, Nebraska in June. He died that August. We were so fortunate to get to go to that concert.

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