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Living with PA

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serge79137
serge79137

I cannot find any details of a book or info of how people deal with PA on a day to day basis.  Lefluomide has helped me a lot but I still get pain.  The types of pain can be in my hands when gripping something, aches in the shoulders when I go to bed for which I take painkillers.  A lot of the time I don't take painkillers as the pains can be transient and depend on what I am doing.  Its just difficult that each day can be so different.

There seems to be a lot of emphasis on mechanical versus inflammatory 'pain' and I feel that if you don't fit into what the specialist wants to hear you are poo pooed. Surely every patients' symptoms are different. 

The usual questions that you must give the right answer to are how long does stiffness last in the morning or have you seen any swelling in your joints. 

When I was first diagnosed when I showed the specialist my hands I told him there were swollen and he asked 'Where?'  Subsequently the specialist has said 'Yes your hands do appear less swollen'. 

If I move to a different hospital and specialist will they disagree with the previous specialist and stop or change medication. Something I would dread. What are other peoples' experiences?

0 likes, 3 replies

3 Replies

  • sharon53237
    sharon53237 serge79137

    Posted

    Hi serge79137, sounds like you're having a bad time of it. I've been diagnosed with PA for about 3 years now, I'm lucky enough to have a great specialist in hampshire, U.K.

    My rheum consultant has put me on sulfasalazine 3000mg a day, colchicine 500mcg x2 a day as I have gout deposits in my toes and because I'm in pain everyday and stiff for a good 3-4hrs after getting up in the morning I'm on pregabalin 300mg a day. This is for neurological pain and is primarily used to treat MS but has had good reviews in arthritis sufferers. It helps, but I still have pain.

    Might be worth researching medications online, if your in the uk then head to arthritis society website, they can put you in touch with local services and advice lines etc. You can get leaflets sent to you as well. Hope this is a little helpful

  • lucynewas
    lucynewas serge79137

    Posted

    this website has some excellent links to information.  but I found the arthritis care website the best - the helpline staff are really well informed and helpful and will send you information.  I can't put the actual links or the post has to go for moderation.
  • lucynewas
    lucynewas serge79137

    Posted

    The NHS website information gives lots of information and encourages people to become experts in their own condition - inform and educate yourself.  You can go on the expert patient programme if you feel there is too much or contradictory information - you can have control over your condition - and it's very important to have control for your mental wellbeing!

    Good luck

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