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karenmc
karenmc Member Posts: 6
edited 23. Mar 2014, 13:57 in Living with Arthritis archive
Hi anyone! I'm new to this so please bear with me.
I was diagnosed in October with Osteoarthritis, my doctor was quite flippant about my diagnosis and told me it's just about pain management, I have been back several times and have had several tests. My last appointment was with another doctor who thinks I might have fibromyalgia and prescribed tramadol!! I am currently waiting to see a specialist. All this to-ing and fro-ing is getting me down. I'm made to feel like a fraud every visit but my pain is very real. I'm finding it so frustrating being unable to do the things that I used to take for granted. I'm currently on ESA support group for another reason but am unsure how this will be affected (another worry!). I was told about PIP but was also told about the 20metre rule. So haven't taken my application further. I have today been for an assessment for a travel pass. I wonder if the same rules apply. Can anyone have any hints, advice, help on this. Or just a friendly reply would be nice. Thanks :)

Comments

  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Hi Karen, Welcome to Arthritis Care Forum, you have come to the right place. We support each other here. I also have Fibromyalgia as well as RA. But I'm afraid the 'to-ing and fro-ing' is something you will have to get used to! The back and forth from G.P's to Hospital Consultants will make you dizzy! LOL You have to find a way to do things you enjoy, it's surprising how you can adapt some of your favourite things to do. I can't help you on travel Passes, PIP or ESA support groups but some of the others members may be able to. Again welcome to AC forum. :D
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Hi Karen

    Welcome to the forum, I can only reiterate what bubba has said re appointments you will get used to them(I have a full week next week :wink:) as for esa it will depend how long they have given you before you have to be reassessed. I am afraid I can't help you about the travel pass I drive so don't know anything about them. We are all here to support one another and we know the pain you go through never feel like a fraud, it is lovely to meet you hope to see you around.............Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • toady
    toady Member Posts: 2,275
    edited 30. Nov -1, 00:00
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    Hi Karen, welcome but sorry you are suffering with OA and a possible uncertain diagnosis. The last thing you need on top of this is unhelpful doctors :x my first rheumy consultant was so unpleasant I couldn't deal with them at all, went into a tailspin, and didn't seek another referral for a year by which time (mercifully) I struck luckier at a different hospital & had an entirely different experience. Hopefully you will get more help & answers at your referral appointment, however if you are confirmed with an OA diagnosis I understand that it is your GP who will deal with you, in which case try & make sure you get a good 'un & change if you absolutely have to.

    You're certainly not a fraud and of course you feel frustrated, frustration is my middle name nowadays it goes with the territory. Hopefully you will be able to get better on top of your condition and be able to do more.

    I don't see that your current ESA position in support group should be affected by the addition of a further condition - only if your previous condition had improved or changed (as far as I know). Sorry I don't know much about PIP, I am aware of the 20metre rule, but not sure if they have to apply it in the same way as ESA, ie that you have to be able to reasonably walk 20m when necessary, and not just manage it once in a blue moon if pushed, or that you can do it but it would make you worse afterwards.

    When might your referral appointment come through? :) Keep us posted.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have psoriatic arthritis, which in turn has led to OA and fibro. To some extent your GP is correct, living with OA is to do with pain management, maybe an anti-inflammatory drug and gentle, low-impact exercise to keep one's muscles as strong as possible to better support the affected joints. There is no treatment as such for fibro (well, no drug treatment) and it's still not fully understood.

    In the seventeen years I have been Living with Arthritis I have learned that the pain will also be there no matter how strong the pain relief. I prefer to keep my pain relief to the minimum so I have an 'escape lane' when things worsen - the stronger the relief the more you are taken away from the pain, not vice versa. It's not easy though and no doubt this has come as a huge shock to you. I empathise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • karenmc
    karenmc Member Posts: 6
    edited 30. Nov -1, 00:00
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    Thankyou to everyone who replied to me.
    It's such a relief in it's self to know i'm not alone. In answer to a couple of questions. Not sure when referral appt. due, should chase docs up but just wanted a week off!! I'm in total agreement with DD re: pain relief, I now only take tramadol when the pain is too much, I've accepted that I will always feel some degree of pain and am adamant that I won't let it dictate to me. Hard though when the pain is so great I take them then i'm fit for nothing!!
    Hope all of you are ok today, i'm going to keep checking in, learning more and smiling.
    P.S. Can someone tell what 'in your pocket' means please, it sounds nice and good to know when your dealing with a situation you'd rather not.
    Take care, Karen xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    The notion of 'Pocket duties' or being 'in your pocket' was created by skezier (a former user of the forum who lived on her own) the idea being that others in a similar situation could attend appointments knowing that forum members would be thinking of them. It does help: I am in the very fortunate situation of having a spouse who attends the majority of my appointments but, every now and again, it's a boon to know that others are with you. We have the cyber habit of bringing food and drink along with us (I specialise in strawberries and champagne - I might risk adding balsamic vinegar to the former, definitely not the latter :wink: ) to ring the changes.

    You are not alone, karenmc, there are around eight million arthritics in the country, the majority of whom have OA. There is much misunderstanding about it and who it affects, you can be in you twenties and have OA. :( I felt very lonely because no-one in my social group had any form of arthritis (they still don't, dammit! :lol:) so finding AC was a very positive step for me. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hello & a warm welcome from me,

    Like DD I have Psoriatic Arthritis (PsA), Osteo Arthritis (OA), Fibromyalgia (FM) & I have severe chronic plaque Psoriasis (a skin condition which does little to explain how unbearable the pain & heat etc from it can be :lol:)

    My hubby is also disabled, since he was 34 & I was 32 so 14yrs this year :( He claims the ESA for us as he's the MAN. I've no idea why the man has to claim for the wife ... Perhaps I'm just too stupid, many on the forum can testify to that :wink::lol:
    Anyway ... I believe toady is correct. Any added illnesses are likely to strengthen ure case rather than negate it. Regarding PIP I'm afraid hubby has a lifetime award of highest rate DLA mobility & care so is unlikely to be assessed for PIP until 2017/8 & I was reassessed early last year & was awarded highest rate of both in DLA still for 5 years. I'd advise seeking help from CAB or similar to fill any forms in & always fill it in as if it's ure worst day with all of ure problems because, as we all know, they can & do happen!! I can't help with a travel pass at all, sorry, tho CAB may be of use!!

    Pocket Duties are a surprising comfort, I was pleasantly surprised to discover last year :D
    Definitely shout out if you need them :wink:

    (((Hugs)))

    Xx xX
    Healing Hugs
    Debbie.x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello .
    Karen and welcome to the forum
    You now have people to talk to that understand and it makes such a difference
    I'm sorry you are suffering like this GPs are such hard work when it come to arthritis, I think because it effects so many people
    Have you been referred to a pain clinci at all, but maybe that will come when you have seen the specialist..I hope the appointment goes well and please let us know how you get on
    Love
    Barbara
  • destiny0321
    destiny0321 Member Posts: 88
    edited 30. Nov -1, 00:00
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    hello karen.
    I have oa,psa plus ashma,diabetic,& numerous other illnesses,i find for me to take one day at a time was at podiatry for diabetes & found the big toe is as stiff as a board with arthritis on my right foot.
    at moment main problems beside constant pain my asthma is playing up bad which in turn seems to be giving my diabetes a good runaround as highs at moment instead of lows.thinking of you (((((((((((((((((hugs))))))))))))))))))
    love destiny