NEW HERE . CAN YOU HELP ?

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jacsson
jacsson Member Posts: 5
edited 30. Mar 2010, 09:03 in Chat to our Helpline Team archive
Hi all, have posted a msg on the "say hello" forum and have no idea how to move it here so gonna outline problems briefly. First, though, have to say this whole site is a Godsend and very informative. Right, had a fall nearly 4 yrs ago so had problems all that time but recently have got worse. Sacroilliac joints are very painful after an hour or so's activity. neck & shoulders stiff, creaky & painful. arms, elbows, wrists, hands, fingers (with knobbly bits) left arm worse than right. Extreme tiredness, can sleep for couple days. very little energy , left knee feels bit loose. Boxing day was start of either costochondritis or pleurisy(Drs couldnt agree) anti-biotics definately made a difference though. Last week was start of extreme flu-like symptoms, came on quickly, shivering, burning,aching pains in all joints plus knees, big toes & arch of foot. 5 nights in a row. felt like i was dying and felt better by morning. could see the lumpy things on fingers, looked like they were growing. waiting to see rheumatologist but could be 3 months. Dr thought it was in my mind last year. Do you think I could be mad ? lol

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  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Hi jacsson and welcome to the forum :D

    the answer is NO you are not mad.....you have arther and are in a lot of pain that's obvious...and need to get the right pain relief and treatments.

    I am so sorry that your doc has made you feel that it's 'all in your head' what a ridiculous thing to suggest!
    you do not have to justify your condition and from how you have described it I can't understand why you have not had the help you need before now?

    It seems like a long way off..this rheummy appointment...three months is too long to be waiting when you are suffering :roll: :roll:

    What about going back to the doc (or better still another doc in the practice) and tell them how bad it is for you and ask them to phone rheummy to bring the appointment forward :?: or
    you could phone rheumy outpatients explain how things are for you and to ask to be seen sooner....nothing lost by asking is there?

    I do hope you get to see someone soon who will listen and start you on proper meds.....

    take care....Iris x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Jacsson,

    You are not mad! I get so cheesed that doctors can make us feel we are....... Don't ever think it ok?!

    Right I'm sorry I should have started with :

    A welcome from me as well they are a good lot here and the help line folk are very good.

    It sounds like I get when something is in a flare...... They tell me to rest up, stay warm and then either up or change my tablet dose. Its horrible and well i am sure the gp could help you more before you see the Rumo. Maybe you could ask for some anti-inflammatories? It might be possible to get to see the rumo quicker if you gp's push for you.........

    Is it possible to see a different doctor in the practise there? You definitely could get better help I think but some doctors have no understanding, or bed side manner! Its a sad thing some gp's are better at understanding than others.

    Its a good idea to document whats happening to you cus some Rumo's diagnose from your history as yo aren't always having a flare when you see them (I have to say my flares are very consistent though and hopefully will soon be under control or better still gone!) Can you take pictures of the lumps etc in case they go before the appointment comes?

    You hang in there, rest up if you can but keep moving a bit just don't push it and I really hope you will get some help and feel better soon. Nice to meet you :D Cris x
  • fayrose
    fayrose Member Posts: 241
    edited 30. Nov -1, 00:00
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    As the others have said, no you are most certainly not mad.

    You describe symptoms very much like mine and it took more than another year before my diagnosis was confirmed, though luckily at that time I had a gp who did try to help me. The arthritis for some reason did not show up in the blood tests taken at the time.

    Years later, talking to the rheumatologist about those early events, he said it often comes on like that. He explained it like a semi dormant volcano that bubbles and every now and then blows a bit, then bang crash wallop, the full explosion.

    Do go back to your gp, and ask for help with pain relief at least.

    I can imagine how devastated you feel, very best wishes.

    Fay
  • helpline_team
    helpline_team Posts: 3,505
    edited 30. Nov -1, 00:00
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    Dear Jacsson,

    Welcome to us here at a very busy chat to Helplines today!
    It might be quicker if you were able to ring us at Helplines and we could give you some ideas to explore, but in brief. You can chose where your first rheumatology referral goes to and you can do it online if the GP gives you the code - that should give you
    a)choice over the different waiting times for different hospitals
    b)control over where you are going to need to travel for your rheumatology appointment.

    The GP can speed things up by doing the basic blood tests that the clinic would need to see results for - examples include
    ESR, CRP, full blood count, RF (often the docs will want to add to that list!)
    It's often helpful to have the worst joint x-rayed to check for the degeneration of osteoarthritis.
    In the mean time if you can see a physiotherapist they may be able to offer invaluable help on managing in the meantime.
    And download our booklets if you would like a read.
    Hope that is helpful
    Guy
  • jacsson
    jacsson Member Posts: 5
    edited 30. Nov -1, 00:00
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    Hi All, Thank you for all replies.., really does make a difference to have someone actually listen and understand .. reason for very late rheumy appt., a consultant has just left and not being replaced so its added 11 weeks to list....have finally got Drs appt tomo so can at least update him. unfortunately cannot stomach anti-inflammatories which isn't good when you've got inflammation.lol. have had various x-rays, blood tests , but I wasn't feeling the same then so things don't always show up. Have been extra tired and lethargic for some time but the inflammation only seems to have got to this stage since boxing day when the pleurisy/costochondritis began....its all making alot of sense to me now., like a jigsaw puzzle ...The most annoying thing is that TODAY I feel pretty much ok in comparision to last week...still, such is life. My Doctor is actually quite good and the 4th one..you try to stick with the same one but they keep leaving..!!! I think because I have Depression too and last year was extremely bad is the reason they thought it could be in my mind....but I've learned so so much this past year and that gives you strength to perservere ??



















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  • helpline_team
    helpline_team Posts: 3,505
    edited 30. Nov -1, 00:00
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    Just a bit more occurred to me...
    if your condition is fluctuating and not easy to diagnose you might want to quizz a good physiotherapist to see if they think you seem to have more a mechanical/osteoarthritis problem or an immune system/imflammatory arthrtis.

    hope that helps
    Guy
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