starting line first post

[coldinghambaz59]

hi my name is barry like many of you this would be the last place i would want join but boy im glad i joined now ive been a member since june 2017 but think i have had pmr longer put it down to getting older 58 at the moment ,ive always been busy work and play used to cycle and run, away for holidays on the harley davidson which i hope to get back to (not the running two replacement half knees fitted) im still quite active my german shepherd harley takes care of that still like garden but cant kneel down anymore so raised beds been built ,started on 40mgs of prednisolone early june turned into superman in 2hrs wow but like you all know and have said it wont stay like that im now on 25mgs and see doc next week after blood tests ,i have had the problems with the preds which this site has got me through and i thank you for that wishing all other members well just reading other members posts help s understand as before this i could never find out the anwser WHATS PMR cheers

[markbenjamin57]

Greetings and welcome Barry

Thanks for your intro, good to hear your story and to know a bit about you. Your experience with PMR sounds quite typical, and you're in good company here - with some real experts to help us all along the way.

There aren't many of us Lads on this forum, so it's helpful to compare notes as we're similar in age (i.e. relatively young!). We also have some Fun in between the serious stuff (watch out for The Aunties especially)!

MB

[coldinghambaz59 in reply to markbenjamin57]

thanks mark for the welcome i feel i kinda know you already as i did join this site in june this year but ive always been reading all the posts from everyone else to try and understand what all this pmr is about hence ive read a few replys youve done to help other members ,so maybe you can tell me why do the ladies seem to get this more than the boys its also been said that we seem to get through it better ,i must admit i can now take dog for walk but soon as im back i sit in chair and out like a flash 1 hr gone zzzzz used to fight it not any more , give up on trying to lift heavy items anymore as my arms feel like lead wgt after but im still doing okay driving car etc now ive got pred ,i take it mark youve had pmr a while and are now hopefully at the end of the pred cheers barry

[SheffieldJane]

Hi Barry and welcome! Glad you joined us, not glad you got the dreaded! Getting older is nothing like this, trust me. One thing, that's a mighty high Pred dose for PMR. Did they suspect GCA?

You'll get your mojo back, I'm sure.

[coldinghambaz59 in reply to SheffieldJane]

thanks for the welcome everyone yes it seemed quite a high dose 40mg but i did not know till i came n here to this site, it started with the normal stiffness in arms and shoulders moving down to back of legs got through it by morning shower getting slowly moving again dog walk etc jobs through the day ,but by evening worn out and dreaded going to bed because i new i was going to wake up in big pain all over again ive even bought two new mattress because i blamed them ,i have had two knee replacements (both knees) in the last few years and was still on medication for last one but it did not help one bit with this new pain as we now know is pmr last straw was when my dear wife had to come help lift my arm up so i could try get out of bed then pull my legs around, off to the docs x rays came back okay but bloods showed up something i did ask but kinda forgot as i did not understand think the reading he said was 37 said it was high for someone my age then started me off on pred like i said previous superman in 2hrs and first time in a year no pains in my body, stopped taken pain killers for knees etc so as all you good people say prednisolone is there to help,im down to 25mgs at the moment going back to docs soon i would hate to get gca which again ive never heard of till i joined here but least i know signs to watch for . ps sorry for long sermon but it has been good for me to tell someone as ive not met anybody else thats had it here in the scottish borders coldingham

[PMRpro Ambassador in reply to coldinghambaz59]

The "37" was probably your ESR - the rate the red blood cells settle down when in a vertical tube. Like sand in a bucket... It is a sign of inflammation but it can be any inflammation - not just PMR.

You're sort of in the middle aren't you - there is a Scottish PMRGCA charity, based in Dundee, and an excellent northeast charity group in Gateshead (with blokes) - neither what you'd call nearby though! I don't know what groups the Scottish group have

pmrandgca.org.uk/

[coldinghambaz59 in reply to PMRpro]

many thanks for reply and prev help and knowledge ive gained by reading your posts to other members thank you, yes you are right im piggie in the middle gatehead 2hrs there 2 back dundee maybee longer but no worries now ive found help here

[PMRpro Ambassador in reply to coldinghambaz59]

There may be a group in Edinburgh or somewhere - worth asking the charity via their helpline maybe.

[jinasc in reply to coldinghambaz59]

There is a group which meets in Edinburgh, but you can join either the North East or Clan Scots

If you are in Scotland then the North East won't take you,,,,neither of us poach.

However if you join one or t'other you are then welcomed as a visitor at either.

Alternatively, you could join both

There is a mountaineer in one of those groups and he was only 53 when he was diagnosed with PMR and guess what he his climbing in the Himalayas in back end of Oct/Nov just when DorsetLady is going to NZ.

About 90% of men come through it quicker, providing they treat is sensibly and gain knowledge fast.

[coldinghambaz59 in reply to jinasc]

hi jinasc thank you kindly for that info im closer to edinburgh about 38mls away my son lives in mussleburgh so im up there a few times, im no longer working after i had my two knee repacements workplace was very kind to me after 40 yrs service and put me phi plan , so ive plenty time to spare as long as the dogs had his walk and care ,have you got a address for clan scots please cheers barry

[jinasc in reply to coldinghambaz59]

Forget to add it, it is easier to go here and on the home page, click on the Map of Bonnie Scotland.

pmr-gca-northeast.org.uk

whilst you are there, have a browse...........let us know if anything was useful to you, apart from the link.

[DorsetLady PMRGCAuk volunteer]

Hi Barry, and welcome from one of the Aunties.

It's all very daunting at the beginning, and extremely isolating for many, but hopefully now you've joined in things will get better for you.

As PMRpro has suggested if you can get to a support group I'm sure it will help, just to chat to others in the same situation does wonders!

[coldinghambaz59 in reply to DorsetLady]

thanks Dorsetlady feel i know every one as ive been reading on this site since june ive learnt alot from everyones posts and problems but youve hit it on the head with what you said, just to chat to others in the same situation does wonders!

hope you are keeping well as i know youve had your fair share bless you ,barry

[DorsetLady PMRGCAuk volunteer in reply to coldinghambaz59]

Hi Barry,

Yep, thanks

GCA consigned to a box in the attic!

Now just need to get arthritic knee sorted, but that will have to wait until next year - have got a trip to visit daughter and family in NZ in November onwards.....

..even if I have to hop!

[coldinghambaz59 in reply to DorsetLady]

hi Dorsetlady i do know all about arthritic knee dept i can only say if you do get the chance of the replacement take it takes a wee bit to settle down but great when you get there but that can wait, enjoy your family trip to NZ not long to go November ENJOY

[Suzanne457 in reply to coldinghambaz59]

Hello Barry and welcome to this wonderful Forum ...it is quite like an extended family here !

When you mentioned that you dreaded going to bed at night for you knew what the NEXT day was going to be like...painful ! I could certainly relate with that as many others can I'm sure. Keep checking in here with your thoughts and guestions etc. as we need to hear more from the "boys" that are on this journey as well as the ladies. Wishing you good health, Suzanne

[coldinghambaz59 in reply to Suzanne457]

thanks for the kind welcome suzanne it feels like ive joined a extended family as you say but here everyone know s what you are going on about so your not boring them, its good to talk about it then the more you kinda understand whats going on, your right about the dreaded going to bed (time to wake up in pain feeling} glad thats gone if i had not went to docs and found out it would have been yet another new mattress 3 in the past 3yrs because that what was getting the blame anyway feeling good at the moment just back from harleys 3 ml walk (german shepherd 15 month) helps me keep the puffer fish face off with them steroids working on the diet now

[Suzanne457 in reply to coldinghambaz59]

Good for you Barry , just keep up the walking with your canine best friend Harley . He will keep you healthier and happier during your journey. ....Good ol Harley . I have 2 wonderful horses and they keep my spirits high. Nothing can beat having an animal friend or two in ones life !

Suzanne

[Pym1]

Hi Barry

Your story sounds a bit like mine, except swop the Harley for skis!

After bumping up my dose to 40 after a week at 20 I'm feeling great but a bit anxious about getting the road bike out (I know what I'm like!)

Doc (who is BRILLIANT) will ring me tomorrow for progress and start talking about gentle reduction

He is also an athlete and (a cycling mate) keen that I should keep on exercising and stretching, but being sensible

I'm 73 this month and but dead keen to get back on skis this season. I realise this will not happen if I rush it too fast

Like you, I have found this site must helpful - and comforting to know there are others out there with the same issues

Pym

[coldinghambaz59 in reply to Pym1]

hi pym i read your latest posts and see you have just started on the starting line with pmr and also see youve been a very fit active person and will carry on doing so but i am no expert whatsoever im 58 now and see youve had more birthday candles than me {no disrespect} but i think by reading your posts we have the same get up and go do it now attitude ive ran cycled all scottish weathers even followed the snow plough on my racing bike to get work 11mls there and 11mls back every day after 12hr shift so i think i know what your saying, but since pmr i have taken a wee step back and listened to these new aunties and there right, still do it just slow down if your tried have a nap ive tryed fighting it and you just feel worse better after the nap recharged batterys a older person at work you to say to me when we had a heavy job on task REMEMBER SON ITS A MARATHON NO A SPRINT so thats what im on now you can still do it pym but be carefull we will reach the finish line together .barry

[Hirwaen]

Welcome to our world!!! Glad you have found us. Nothing more to add but listen to the 'Aunties' they know what they are talking about!.