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Weather & PMR / Arthritis

Am I the only one who finds this new format totally un-user friendly ????

Anyway, now that I have finally found my way in, I am just wondering does anyone else find that the weather affects the state of their joints ?

Two weeks ago , I managed to walk a full 18 holes of a golf course in Spain, much to my delight after 22 months.....but today I feel like a VERY old woman again. Everything is aching, my fingers look like extremely large sausages, hips feel like they've been kicked by a mule and shoulders and knees are just creaking !!

I have been gradually decreasing to 5mgs pred from 10 since early December and everything had been going along quite nicely....but I am at 6 now and the way I felt this morning I could quite happily have taken an extra 40 just to get mobile !!! Where are the emotions gone???? I really miss them and the old format....I'm sure they are probably here somewhere and I am too befuddled to find them !!

Hope everyone else is faring better.

Love,

Pauline.

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  • carolk

    you are not alone re format i just wish they would admit defeat and return it back to its old format i have not seen eileen post for ages and am not sure if she is lost in cyber world or just not around .re your comments about weather affecting condition i do think all joint /muscle pain is imprved in a warm atmosphere but sometimes when reducing the inflammatory markers can gently rise and then you start to get the symptoms getting worse this happened to me and eileen gave me some very timely advice so if you can navigate back to eileens reply to me you may see some simularities i do hope people start coming back to this site i miss the support carol k

    _ 0 votes F Report Share < reply to carolk

  • Lizzie Ellen

    Yey! Pauline. So pleased that you've managed to find the site. And be absolutely assured, no-one, and I mean NO-ONE likes this site now they've tampered with it! The only reason some of us are popping in now and again is to make sure we don't lose people like you!!! The PM facility has gone so I was worried that I couldn't get hold of you - and as you say, no emoticons! How can you go through life without an emoticon? :-( (That's the best I can do, a sad face). I'm afraid that all the action is happening on the other site. Have you thought about 'transferring' until they sort this one out? Not sure if I'm allowed to give you the link although I believe someone said it has been on here somewhere (I'll have a look for it). Its a brilliant site, places you can be serious and a section for general chat. Whatever takes your fancy. And you'll recognise most of the names on there!!

    I'm pleased you felt so much better while you were in Spain but sorry you feel so poorly again now you are back. There is a link between PMR and the weather I am sure. I have never felt ill in Spain (we're going tomorrow for two weeks by the way). I'm going to post the link to the other site and see if I get sent to the naughty step!! http://pmrandgca.forumup.co.uk - there will be lots of people there who I think will agree with the cold/damp weather link to feeling unwell. Must go Pauline, €s to buy, bikini to pack (ha ha, I see its pretty chilly over there just now). Take care, so so good to hear from you and hope that you can find your way 'to the other side' for a while!!

    Love from Lizzie Ellen xxxxx :-) :-) :-) (poor excuse for a smiley face!)

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  • Lizzie Ellen

    Hi Pauline,

    I've sent a long reply but its been sent off for investigation! so in the meantime sending this just to let you know that we're still around and hopefully you'll get my reply soon.

    Love from Lizzie xxx

    _ 0 votes F Report Share < reply to Lizzie Ellen

  • foss99

    Hi Pauline et al

    Sorry that it is taking a while to adjust to the new layout. It may help to know that we are planning to add in some of the features from the old forums, like a remember me button so you dont need to log in all of the time, and smilies.

    Also, if you just want to see PMR posts then I suggest you bookmark this link:

    http://www.patient.co.uk/forums/discuss/browse/polymyalgia-rheumatica-1708

    It is a link to just the PMR forums index, so it just shows PMR discussions from this forum. (For reference you can also get to this by using the right hand side menu Conditions P > Polymyalgia Rheumatica).

    Thanks

    Ben

    _ 0 votes F Report Share < reply to foss99

  • Nefret

    I'm still popping in from time to time, Pauline. Like Lizzie, don't want those who don't use the other forum to feel neglected.

    I agree the weather affects those of us with PMR - I'm not good in the cold weather and was really grateful that we had a mild autumn. Now it has turned cold, longing for the warmer days to return.

    Catie/Nefret

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  • MrsO

    Hello Pauline from another one who is trying to persevere with this new format - I don't know if I'm doing something wrong but I don't understand why when you want to reply to a post, that post disappears when the box comes up for your reply. I need to continue to be able to read what I'm replying to 'cos my little grey cells don't always remember everything!!!

    Yes, the weather definitely has an effect on our inflammatory conditions and you have now proved that with your fantastic golfing experience in the warmth of Spain recently. It sounds like a recipe for us all - move to warmer climes during the winter! We're all feeling quite envious of Lizzie taking off to Spain tomorrow as it's especially cold here at the moment.

    Good to hear you have been getting down well on the steroids - do hope that continues in spite of the weather.

    MrsO(Shirley)xx

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  • Lizzie Ellen

    Phew Shirley,

    I thought I was the only one who couldn't see the post I was trying to reply to! I have to open two tabs one with the original post plus replies and one with my reply. Then I have to flick from tab to tab as, like you Shirley, I keep having to refer to the original post/replies or I finish up only answering or commenting on half the things I set out to do. Now, does any of that make any sense what-so-ever - this is when I really, really need the help of an emoticon or three :o) :o) (my kids tell me this symbol is a 'shocked' expression!!)

    Just off to bed for an early night.

    Bye all,

    Love from Lizzie Ellen xxx

    _ 0 votes F Report Share < reply to Lizzie Ellen

  • MrsO

    Well would you believe, Lizzie, I've just popped in following an e-mail into my inbox saying that you'd posted here, and right under your post is a box for me to reply. Now I'm really confused because it's never been there before. I wonder if it appears only when you've received an e-mail notification of a post? I'm stopping here because I shall just confuse myself even more. Sweet dreams and safe journey.

    Love & hugs,

    Shirley

    _ 0 votes F Report Share < reply to MrsO

  • rex carr

    For years I had fierce trouble with my joints whenever the weather was anyway damp.

    This was one of many things that cleared up soon after I quit eating any gluten.

    Now, if I make a mistake and eat even a very small amount of something with gluten in it ( e.g. a couple of non G/F multivit tabs ) I'll be hobbling around in agony for a few days.

    Shame the site has been ruined. 'suppose next move will be to take it down :-(

    _ 0 votes F Report Share < reply to rex carr

  • MrsO

    Hi Rex

    Well that does lead one to wonder how many of us with inflammatory conditions might have an unsuspected allergy to gluten, like you.

    Unfortunately though, there are sufferers of inflammatory conditions such as PMR who know they have an allergy to gluten and even though they avoid it, they still suffer.....whatever the weather.

    I do notice more discomfort in wet weather though and, strangely, when it suddenly becomes cold, I react for a few days but then it seems as though my body gets used to it because the discomfort eventually improves. I swear by oily fish so up my intake if discomfort creeps in.

    Good to hear you found an answer to your painful joints and long may that last.

    MrsO

    _ 0 votes F Report Share < reply to MrsO

  • foss99

    HI lizzie and mrs O

    Lizzie Ellen said

    "I thought I was the only one who couldn't see the post I was trying to reply to! I have to open two tabs one with the original post plus replies and one with my reply."

    If you sign in first then you will see the reply box at the bottom of the post.

    MrsO said:

    "Well would you believe, Lizzie, I've just popped in following an e-mail into my inbox saying that you'd posted here, and right under your post is a box for me to reply. Now I'm really confused because it's never been there before."

    This is because you have signed in already.

    I appreciate this isn't perfect, so we are improving it. We are building a "remember me" tickbox on sign in so that you only need to sign in once. Then you will see the post reply box all of the time. We will let you know when the changes have been made.

    Thanks

    Ben

    _ 0 votes F Report Share < reply to foss99

  • Henhouse Hilary

    Hi Pauline,

    Hi Pauline,

    What a co-incidence!

    I went to a talk on rheumatoid arthritis last night at a local hospital by a consultant rheumatologist and she was asked whether weather can affect joint pains, she said that it seems to be the air pressure - so when it falls you feel more joint pain. So there might be something in the saying "I can feel it in my joints" after all!

    Best wishes,

    Henhouse Hilary

    _ 0 votes F Report Share < reply to Henhouse Hilary...

  • Dublin, Ireland

    Hi all & thanks for your replies....I know my mother always complains of more aches and pains when the weather is cold too, but it is the combination of cold and wet that seems to be worst so Ireland isn't the best place to be !!!!!

    I had all my bloods checked yesterday, when the poor girl finally managed to extract some me sad ...so hopefully they won't show any increase in the CRP or ESR. The nurses in the clinic phone if there is any problems and haven't heard anything yet so fingers crossed it is just the cold and not a flare-up.

    Hope everyone is as well as possible.

    Love,

    Pauline.

    _ 0 votes F Report Share < reply to Dublin, Ireland...

  • InMadrid

    Hi Pauline and everyone else, I am new to the forum having been recently diagnosed with PMR after going from doctor to doctor for the last 9 months. Obviously I haven’t got as much experience and knowledge as a lot of you here, but what I do have experience of is suffering with PMR (not arthritis to best of my knowledge) in different climates seeing as I live and work in Madrid (very dry atmosphere with climate that swings from hot to cold), spend summers on the Costa Blanca (hot humid atmosphere) and spend a great deal of time in Dublin, where my partner is based, and hometown of York. Luckily I love all 4 places!

    My pains first started here in Madrid around May (difficulty standing up after being seated) so can’t really blame the damp for that (should also mention here that I have always walked a lot, or at least I used to!), got worse in York, just before the summer – very unsettled weather, (but also did a lot of walking), and then got rapidly worse (both hips frozen and painful) over the summer in the very hot and humid atmosphere of southern Alicante – so humidity could have played a role there (but also maybe walking, gardening etc.). I then got gradually worse to include shoulders during autumn in Madrid (pretty dry – but was also using my arms/shoulders to compensate for my legs at this stage). At the end of last month in Dublin (which included a trip to Leitrim where it was very rainy) it seemed to get worse, especially my shoulders, but that could also have something to do with the flight, all that hanging around, being shoehorned into a seat and trying to get stuff in and out of overhead lockers. So I’m afraid the only tentative conclusion I can draw is that maybe a combination of cold and dampness could make it feel worse, but I have also felt like it got worse in very different conditions.

    Perhaps just being more relaxed helped you to feel better, or that combined with a warmer climate? I have a feeling that stress is a big factor in PMR and just about any autoimmune disease (I also have hashimoto’s thyroiditis), just as I think the feel-good factor that sunny days and relaxation bring might also play a big role… My summer was very enjoyable but it was not exactly relaxing, so that’s why I say relaxation rather than holidays.

    Just my 5 cents – really hope you are feeling better soon!

    _ 0 votes F Report Share < reply to InMadrid

  • RickF

    foss99 wrote... "If you sign in first then you will see the reply box at the bottom of the post."

    Well, if we sign in first, then then we're taken back to the beginning and away from the PMR section. Have to click 'p' then type poly... etc. This software doesn't remember that we were already at the PMR section.

    Very frustrating!!

    _ 0 votes F Report Share < reply to RickF

  • foss99

    Hi RickF

    We appreciate this isn't perfect, and is very frustrating, so we are improving it. As a first priority, we are building a "remember me" tickbox on sign in so that you only need to sign in once. Then you will see the post reply box all of the time. As a second priority, we will also look into changing it so that if you do need to login, it takes you back to the original page with a post box at the bottom.

    We will let you know when the changes have been made.

    Thanks

    Ben

    _ 0 votes F Report Share < reply to foss99

  • foss99

    Hi Catie

    This is a new request to us. Even the old forums didn't work in this way, they displayed the posts in chronological order. Can I suggest that you raise the idea using the feedback link top right, and the community can vote on it. If it gets enough votes, we will consider it for implementation.

    Thanks

    Ben

    _ 0 votes F Report Share < reply to foss99

  • MrsO

    Now Ben thanks for your reply...BUT, having just read it I clicked on reply to post and then a new page popped up asking me for my details. I duly entered them, following which up popped another page "Reply to the discussion" with another box for my reply.....so I still can't read your post to which I'm trying to reply!

    If we're actually already logged in and reading the posts (and having already received an e-mail from you notifying me of the post with the reply facility) why can't we just reply on that page, at the same time being able to scroll back and fore through the posts so that we don't miss anything whilst replying?

    I'm sorry if this sounds confusing - and I do appreciate how difficult it is for you - but it is my main gripe and I'm anxious to see this site return to what it was previously - a simple to access and easy forum for people in need to be able to voice their fears and share their experiences with people who understand.

    MrsO

    _ 0 votes F Report Share < reply to MrsO

  • MrsO

    Hello InMadrid

    Well you seem to have been able to experience PMR in all weather conditions and what we can draw from that is.....PMR is what it is!!! I do wish you a smooth journey to recovery.

    MrsO

    _ 0 votes F Report Share < reply to MrsO

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