hello

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nanny2507
nanny2507 Member Posts: 27
edited 19. Nov 2018, 03:03 in Say Hello Archive
hi
My name is Sarah and i have both PsA and osto. Things are getting bad but i am trying to remain positive (apart from issues with work) Please introduce yourselves to me x

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello and welcome to Versus Arthritis forum nanny2507

    You will find many of our forum users have PsA and Osteoarthritis who will be in a position to offer some good advice and support to you. Perhaps you could expand a little more about your personal issues. Please contact Versus Arthritis Helplines if you require further support and advice, the contact number is at the head of the page.

    Good luck and enjoy the forum.

    John
  • stickywicket
    stickywicket Member Posts: 27,714
    edited 30. Nov -1, 00:00
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    Hello Sarah and welcome. I have RA and OA and have had for many years but i don't have the worry of holding down a job as I'm retired now.

    Please join in anywhere. Living With Arthritis is the most popular forum.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
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    I am having issues with work as they are very anti part time work. I am currently part time in their shop but i need to move into the offices due to the fact that i can barely walk and with the arthritis in my hands too i cant write, get in deliveries, cant stand behind the till (OA in feet PsA in hands) so i am all round useless. However they point blank refuse. they say that the jobs they have have to be full time only. Now on a personal level i am very tired all the time in constant pain and incredibly emotional. my current team are very good to me but i feel useless. At home i cant prepare food or take food out of the oven, open tins and cans, sometimes i cant open packets. But i am like a warhorse i keep going lol. ( cant take time off work as i dont get sick pay)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I have PsA, osteoporosis and fibromyalgia. I began the first back in 1997, the second was diagnosed in 2011 and the third sometime in 2012. I worked for seventeen years but was fortunate in that I was deliberately childless and self-employed so the demands on my time were minimal and could be minimised as required. Like Sticky I am now retired and it's lovely. Meds-wise I take humira and injected methotrexate for the PsA and co-codamol for the OA. I hope you find the forum to be of interest and I look forward to reading your posts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
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    Hi x how are you finding humea? I think they are going to put me on that in November I'm on methotrexate injections already x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    When I began it I noticed an improvement in my mobility for around ten days or so of the fortnight between injections and it quickky reduced my ESR and CRP levels from the 160s to too small to measure. As time moved on the effect on my mobility dwindled to now where it makes no difference at all. I know it is being effective, however, in that disease activity is mostly under control and my bloods are lovely.

    A friend of mine who has had RA for years but no OA has recently started humira and it's really helped her mobility - she was a nurse in rheumatology and was very popular with the patients because she knew what life was like, she understood the reality rather than dealing with theory like the consultants. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
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    sorry for late reply. Im glad you are doing ok on humera I have hospital on Wednesday so lets see what they say. I am having a nightmare with my foot. Its swelling like crazy if i use it. double what it should and i dont know why. some days the swelling is like an egg on top of my foot some days like a rolled up towel thats used as a draught excluder ( Best way to describe it)
  • stickywicket
    stickywicket Member Posts: 27,714
    edited 30. Nov -1, 00:00
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    Clearly the meth isn't holding your arthritis at bay (What do your blood results show?) so I guess you'll be put on something else either with it or instead of it. Please let us know how you get on and good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
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    i agree that the meth isnt keeping it at bay. I had another positive appointment with this new guy (i changed hospitals recently) They are changing the meds but ive forgotten what to. It was also discovered at the appointment that i have really high BP at one point it was 212/121. I was kept at A&E for 7 hours!. They managed to bring it down to 185/120 and i was allowed home. But i am now on medication. But ive been given no information on how to "take things easy" I find it very difficult to relax. Today ive done an hour and 15 dog walk, all my housework and 90 mins ironing...am i meant to just sit all day??
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    No, of course not, but sit with purpose. Join an art class, take up knitting or crochet, do crosswords or logic puzzles, anything that keeps the mind occupied while the body rests. We can help ourselves by learning to adapt our behaviour to suit our circumstances, for example walk the dog for two shorter walks, you will both have the same amount of exercise but with less stress on your joints. Today I am mostly resting because we are going out for lunch tomorrow which means uncomfortable seating for far too many hours but the company will make the probable payback worthwhile.

    I have raised BP thanks to the humira (and probably the stress of pain) but that is controlled by medication. I suspect your BP was that high due to stress (many find hospital appointments stressful, I remember my rheumatologist telling me she ignored most clinic BP readings for that reason) but that was abnormally high, I hope it is improving now. Is the new med another DMARD or an anti TNF? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
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    if im honest im a bit frightened of doing anything but i cant live like that. Ive been back to GP and its still mega high. I think the new med is anti TNF. i,m going on another dog walk tomorrow and i do take it slow because of my feet. and im hoping it will be as gorgeous as today (i was at work today only got glimpses) and then boring housework again lol
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Pain is frightening but I've gotten used to it: if someone offered me a pain-free day I would refuse, it's taken me years to adjust and although I don't like this reality it's the only one I have.

    As I suspected today is payback day and in some style,. The people we visited have a very beautiful but supremely uncomfortable house, with hard, narrow, modern dining chairs and low, firm seating in the sitting room. Ghastly. Their lavatories are low too, surprising as they are both 6' tall but their bodies work.

    It is a question of adjusting what we do and how we do it. You are obviously feeling the stress of this new situation so that will raise your BP, you are used to being active and are finding that compromised is bound to be hard. You're not be first and certainly won't be the last to face this but who cares about others going through the same thing? This is you and that makes it different. Having been compromised one way or another from early childhood for me it's no big deal, I've never been able to live as others do, but I hope I can understand how hard it must be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben