Christmas!!!

Still no diagnosis feel like the world is ill aware of the pain l am coping with. Well coping feels like lm on a knifes edge at the moment.who knew that being so exhausted could be so depressing.. My fingers are swollen and don't move very well. I struggle to get out of bed due to the pain in my swollen ankles, knees, elbows and fingers. Excruciating pain in my lower back and can only be described as walking on glass. The thought of leaving the house for Xmas shopping fills me with dread and l have been known since this illness started to have a number of panic attacks. Not sure how much more of this l can take its as if lm so Alone and no one understands.

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  • We understand! Are you spending Christmas with family? I always think Christmas puts people under so much pressure to look and feel happy even when you feel like crap. At the end of the day, Christmas is just another day. Friends and family will understand, just be honest with them about how you're feeling. Don't put yourself under pressure to go Christmas shopping. Shopping is hard enough at the best of times, let alone in the couple of days before Christmas! Sounds as though you are putting everyone's needs before your own. Give yourself permission to look after yourself.

    Why don't you buy everyone gift vouchers? I absolutely love getting a gift voucher eg for a beauty treatment, or to buy something nice for the house, as I feel that I can treat myself to something that I wouldn't feel justified to spend money on myself. My kids also love getting a gift voucher so they can go out and choose something themselves.

    Sod it if it's a few days late, and buy them all online, or you can pick them up in supermarkets or even smaller shops sell them now. Post office vouchers are great as you can spend them in loads of big shops.

    Hopefully this time next year, theyll have you on the right meds and you'll look back at this time as a dim and distant (nightmarish) memory. Take care. x

  • Thank you this is my third Xmas l hope so xxx

  • Third??!! That's awful. Hope you get some relief soon.

  • Sorry to hear you feel so awful. I know what it's like to feel that nobody cares, or knows how much pain your in. It took well over a year before anyone (medical) would listen.

    Don't give up hope. Just take things easy. Christmas isn't about the gifts anyway. For the past two years I pretty much ignored the festive season. This year I just made everyone ginger bread!

    Most people cannot understand the pain and exhaustion we feel, but it's not through malice. I think unless you've been though it, it's impossible to understand. Just be around those who love you, and do what you can.

    I hope you find out what the problem is soon.

    Blessings to you.

  • Often when people have swollen fingers or toes and are struggling to get a diagnosis I wonder whether they have Psoriatic Arthritis because a) it can cause swollen digits and b) it is still a disease that some rheumys just do not 'see' even with a lot of evidence in front of them. So apologies if this is a possibility that has in fact been adequately explored already, but if it hasn't could you tell us more about your symptoms?

    I am not a nervous type, nor depressive. But nearly 5 years ago I entered a bit of a nightmare scenario whereupon PsA just wiped the floor with me. I was shocked to find that a simple shopping trip became either impossible or a source of real anxiety. I couldn't understand why I had no energy whatsoever. Eventually I entered a sort of twilight world where I just didn't care about anything really. I was lucky 'cos my other half held me up literally and metaphorically. But even without him things would have come good in the end because getting a diagnosis and then responding to treatment made me 'me' again.

    I don't know how much solace we really get from online understanding, it's a lot better than nothing I guess. But certainly the way you're feeling will be familiar to many, it's very familiar to me. Plenty of us will have had similar experiences but come through them. I don't know what your circumstances are but do reach out for support wherever you can find it, the NRAS helpline, the Samaritans, a local church or friends .... you deserve a little help and the chances are this is not how you will be forever, it's all about getting through in one piece.

    You take good care, have the best Christmas possible. I hope 2017 sees a real change in your fortunes.

  • Actually poster makes good sense. I have psoriatic arthritis. This wasn't picked up for ages. GPs kept telling me I was RA negative, but paid no head to the fact that all my toenails fell off, and I could hardly move! My Achilles' tendons were massively swollen too. It was agony!

    Looking back I feel pretty mad at being dismissed for so long, and left to suffer agonising pain. It wasn't until my inflammatory markers shot up, and I got sausage toes that people finally sat up and listened.

    Have you been checked out for this type of arthritis? Do you hVe any skin issues? You can still have it and not have skin problems.

  • Sorry Postle!

  • Same thought crossed my mind re PsA. My cousin has it without any psoriasis and it took years for the rheumy to diagnose it. She even took comfort in the bottle briefly. She is now on Methotrexate and something else to quite good effect.

    It also took five years for my diagnosis of seronegative RA to be overturned in favour of primary Sjogrens - meanwhile the excruciatingly painful neuropathy in my arms and legs and face was shrugged off for a few years once off the antirheumatic drugs and it has killed off quite a few of my tiny nerve fibres irreparably now. So I have cursed a few doctors in my time.

    Being misdiagnosed isn't a lot better than being undiagnosed - but at least I got onto the right treatment for a while, even if it was for the wrong disease.

    You will get there in the end I am sure - and meanwhile we do understand so you aren't as alone as you have been feeling.

    Hugs, Twitchy

  • So often the diagnostic delay with PsA is due to it having no equivalent of rheumatoid factor and as well as the lack of PsA-specific blood markers, some people with PsA do not even show raised ESR or CRP. Looking back I was 'lucky' in that I did have high inflammatory markers. But even then there was a long delay, partly due to the fact that my swollen joints were not symmetrical .... GP and indeed the orthopaedic surgeon were looking out for RA and the symmetrical pattern it allegedly has, though I'm sure many RA-ers don't have that either.

  • I remember my first xmas with RA seven years ago. In constant pain, unable to hold knife or fork, fatigued and not a happy bunny. I just told my family and friends that i have no energy to muck in (I always did all the cooking) and they'll just have to get together and get on with it. I told them RA was not my fault and I much rather not have it. They were a bit shocked to start with, but it all turned out just fine. I'm in my third year of remission. There is light at the end of the tunnel and it's not an oncoming train. All the very best and enjoy it as much as you can. Do only what you can and don't feel guilty, that's the best advice I can give you.

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