Inflamatory Arthritis - my limits

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CarlyF
CarlyF Member Posts: 76
edited 3. Feb 2011, 15:33 in Living with Arthritis archive
Hi All,

First time here - so quick into. I'm Carly, 30 from Manchester. I was diagnosed with inflammatory arthritis Jan '09.

As everyone's symptoms vary, I get the flu like feeling, i get hot skin everywhere, hands/feet ache most days, other joints have their moments also, muscles pull very easily & tightening muscles cause me issues like hip buritis. Fatigue really effects me - sleep is so important, if i don't rest well one night, i suffer that day and beyond.

I'm trying to understand the limits of my condition, and get some advice really as to when I should really rest and when I should just plough on and have a life. I want to do what's best to control the symptoms which cause the long term damage, but I think some of my pain is just aches related but not as damaging - if that makes sense?

Today it hurt to walk, my knees were very sore (i never really show with swollen joints, but they are very hot and really sore to touch, use etc). And I didn't know what would be best for my arthritis - carrying on, going to work (which I did), or should I really rest on days like that? My employer is really wonderful with me and they are quite flexible about working from home, or starting work late on bad mornings, but i just really want to know what is best to do to help slow down this condition.

My rheumy Dr isn't really helping me with things like this so i just wanted some advice from those who deal with this daily.

Comments

  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    hi Carly, just wanted to welcome you to the forum... Hope that you are not suffering to much tonight....
    I'm more of an osteo sufferer, though I possibly have rheumy in my hands and wrists now, so can't advise too much, I would imagine it best to rest when you feel you need to, you will probably learn to listen to your body..
    Some folks more knowledgeable than me should be along at some point to give you more advice etc....

    Be well...
    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
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    Hi Carly..

    Welcome to the forum..
    I am 30 and your story sounds similar to mine..
    I do not have a diagnosis and have been off work since septemeber..
    I find that if i do to much on one day because i don;t feel too bad then i suffer alot worse after.. i would say from my experience so far is to rest when you feel you need too don't be afraid to, your body is telling you to rest for a reason.. when you do feel ok, pace yourself.. do a little bit not too much.. It's good that your employer is working with you and supporting you..
    They are a great bunch here.. I am sure someone with more experience will be able to offer you some more advice..
    I wish you well
    Let us know how you are getting on..
    Take care
    Tracy
    xxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
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    HI Carly

    welcome to the forum, but so sorry that you need us!

    I have RA, but for years I was told it was 'some sort of inflamatory arthritis' and I'm not honestly sure when the name changed exactly!! the thing is that they usually treat the two in the same manner, so I guess you'll be on some sort of disease modifying drug & maybe an anti-inflammatory?

    Your list of symptoms is very familiar to me, and I particularly have struggled a lot with the fatigue side of things. Honestly there isn't an easy way to work the answer out, as it varies from day to day and month to month what works and doesn't , I'm afraid.

    What I find works for me at the moment, is to do things in very small chunks, so that I am not doing one thing for more than 30 mins - so I do an active job (washing up, cleaning, gardening, tidying etc) for 30 mins and then change to a sedentary job that I can do sitting or lying down, to rest my joints. It isn't easy to do when you're working, but you might be able to adapt this strategy to your work.

    If you contact the Arthritis Care helplines people (Number at the top right of this page, or by emailing them or posting on the Helplines forum, they can send you some really good information about pacing yourself.

    Hope that's helped a bit, though I know how frustrating it is to be told that you need to keep trying out different things. Sorry!

    take care & keep posting!

    WOnky
  • sullivt56
    sullivt56 Member Posts: 33
    edited 30. Nov -1, 00:00
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    Hi Carly,
    I have psioratic Arthritis which can be very inflammatory.
    No matter how painful and disabling it can be at times I make sure that I continue my normal routine as possible. If get tired take a break but return to what I was doing. It can be hard and difficult but it means that I am in control not the condition.
    I explaained this to a friend who was diagnosed with Parkinsons and was on the verge of giving in to his condition. It changed his outlook and does the same.

    There are limits and no doubt you will find those as you go along.
    Its a difficult journey but I am determined to lead a normal life as such.

    Work is very challenging but I have been open with my employers and colleagues which does make a differance. I always point out that I dont want special treatment unless I ask. This removes the fear of being tarred with a brush of using the condition to an advantage. They understand that when I say its really bad and when I am in discomfort.

    Hope sharing my experiances helps...
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Only you can determine what you can manage, we cannot. Google the Spoon Theory, that explains things wonderfully well in terms of one's reserves etc. I know when to push it and when not, I know when I have to try and when I don't, but I cannot put those times into words, I cannot tell you the difference between the occasions, it's almost an instinct. Tiredness is a major component of this rubbish, most people equate arthritis with stiff limbs, they do not realise that it has other aspects too. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • CarlyF
    CarlyF Member Posts: 76
    edited 30. Nov -1, 00:00
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    All,

    Thanks for your responses. I feel warm and fuzzy here, very welcomed.

    I'm sure given time I'll figure out my own body and understand better what my limits are and when I need to rest etc. It's nice to know that i'm understood here and that arthritis isn't just about 'where do you ache? What joints are effected?' as ppl have said, its so much more then that and right now i'm trying to understand how to manage my fatigue!

    I'll have to charge my house phone over night and will give them a call tomorrow.. thanks for this Wonky.

    It'll be a long learning curve, but I'm happy i've found this place to help me on my way.. and after a while I'll get the confidence to help others out like you just did with me :)
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    Best of luck with things Carly... Look after yourself..
    You will soon be posting on here with advice/support etc for others.. It all helps.

    Be well
    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    hi from me as well have inflimation arther as well and since getting meds sorted things much better but you still have to plan ahead and space things out well rest when you can listen to your body if i do not walk enough hips hurt real bad but on others feet and knees so bad can not walk to end of street and trip easy just to add fun to the mix val
    val
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Carly
    This is just to say welcome to the forum.
    Sorry I cant help....I've got OA but I see you've been getting advice from others
    Love
    Hileena