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carolaniveycarolanivey Member Posts: 64
edited 11. May 2010, 12:18 in Young people's community
Hi there,

I'm not all that "young" anymore, but I've had RA since age 5 so I've been through virtually every stage of life while dealing with it.

Just wanted to drop in to say if anyone has questions, ask away. I'll do my best to answer.

Carolan

Comments

  • polly1985polly1985 Member Posts: 70
    edited 30. Nov -1, 00:00
    thank u carolan, its great 2 get advice from people who have ben there. i am stil waiin on seein a rheumatologist so i dont actually no if i have RA or not. i was told i have arthritis on the spine by letter from my neuro cons after being told 4 years there was nothing wrong wi me and i should see someone as it must b in my head. im 25 this year, and symptoms started 5 years ago with back, but over past 3 years i have had terrible knee and foot pain,my hands r very stiff esp in a cold morning, elbow pain - but thats only happened twice in 2years and aching shoulders (if im brushing and tieing my hair up or arms r above me for any reason). i jus feel like so many parts of me feel "weak", and no strength. when i was 9/10 gp thot ihad arthritis in hips but it was never taken further. actually looking at this i can c why they mite o thot i was makin it up.
    anyway, i changed gp practice as i moved 2 another area, 1 gp told me 2 buy a book and it would help my pain (????) needless 2 say it didnt i went 2 a chiropractor and she told me there was most defo somehin wrong and wrote a referal 2 gp 2 say i needed 2 c a consultant. i then managed 2 hit it lucky and get the only worth while gp there and he told me that he would get to the bottom o it as i had suffered far too long an was too young 2 cope wi the pain i was in. sent me for xrays as i had never had any taken, and told me he thot it was RA. unfortunatly as he is the best doc i cant ever manage 2 get another appoint wi him, but he handed the case 2 other gp who has followed his instruction. so i got bloods taken, so far my kidney func is fine and my white cells and platelets r raised. other bloods not back yet,waitin (un)patiently 4 rheummy apt. painkiller not really doin much 2 kill pain,i work as a nurse in a care home and love it, luckily my boss is bein good 2 me an i only do wat i feel i am able to (she even gave me a lift home yest!!) but i jus dont no if i am coming or goin so much i still dont no about arthritis, my head is spinnin, i also feel that i cant b sure of this diagnosis as every other time ive been tested for things they were neg (ok so they were a bit extreme - blood clot,MS cancer etc) im jus scared i will b told it is my head again. what will the rheummy do in my 1st apt? will i b put on meds right away?? im just at a loss 4 everythin so anythin u could tell me would b fantastic. sorry for rantin on an on but but it feels good 2 get it off my chest :oops:
  • carolaniveycarolanivey Member Posts: 64
    edited 30. Nov -1, 00:00
    Hi Polly,

    Are you on any medications at all right now? Even if you are taking only over-the-counter meds, make sure you take them as recommended, don't skip doses. You have to keep a steady level in your bloodstream for it to work properly.

    I'm in the US, but I have several friends in the UK so I know things work differently there. Several years ago and visited Scotland and met a young woman who desperately needed a knee replacement but the health system insisted she was too young. I hope things have changed since then!

    I hope your new rheumatologist starts trying new medications immediately - you shouldn't have to keep suffering like this. He or she will probably get a new set of x-rays and more blood work. Unfortunately, that's part of the territory. Keep in mind it will take time to find the right combination of meds for you. It can be frustrating, but once you find it, you'll know it! I believe there is a version of the Arthritis Foundation in the UK, I'd urge you to look for what kinds of information and services they offer.

    There's few things worse than being told it's all in your head - it IS NOT, please believe that! Because you have spinal involvement, some doctors may take that as a signal that it's not RA - don't accept that. I've had spinal and neck involvement from day 1. There's a general profile for diagnosing RA, but trust me when I say not everyone "fits" that profile.

    Keep me updated on how you're doing! Hang in there!

    polly1985 wrote:
    thank u carolan, its great 2 get advice from people who have ben there. i am stil waiin on seein a rheumatologist so i dont actually no if i have RA or not. i was told i have arthritis on the spine by letter from my neuro cons after being told 4 years there was nothing wrong wi me and i should see someone as it must b in my head. im 25 this year, and symptoms started 5 years ago with back, but over past 3 years i have had terrible knee and foot pain,my hands r very stiff esp in a cold morning, elbow pain - but thats only happened twice in 2years and aching shoulders (if im brushing and tieing my hair up or arms r above me for any reason). i jus feel like so many parts of me feel "weak", and no strength. when i was 9/10 gp thot ihad arthritis in hips but it was never taken further. actually looking at this i can c why they mite o thot i was makin it up.
    anyway, i changed gp practice as i moved 2 another area, 1 gp told me 2 buy a book and it would help my pain (????) needless 2 say it didnt i went 2 a chiropractor and she told me there was most defo somehin wrong and wrote a referal 2 gp 2 say i needed 2 c a consultant. i then managed 2 hit it lucky and get the only worth while gp there and he told me that he would get to the bottom o it as i had suffered far too long an was too young 2 cope wi the pain i was in. sent me for xrays as i had never had any taken, and told me he thot it was RA. unfortunatly as he is the best doc i cant ever manage 2 get another appoint wi him, but he handed the case 2 other gp who has followed his instruction. so i got bloods taken, so far my kidney func is fine and my white cells and platelets r raised. other bloods not back yet,waitin (un)patiently 4 rheummy apt. painkiller not really doin much 2 kill pain,i work as a nurse in a care home and love it, luckily my boss is bein good 2 me an i only do wat i feel i am able to (she even gave me a lift home yest!!) but i jus dont no if i am coming or goin so much i still dont no about arthritis, my head is spinnin, i also feel that i cant b sure of this diagnosis as every other time ive been tested for things they were neg (ok so they were a bit extreme - blood clot,MS cancer etc) im jus scared i will b told it is my head again. what will the rheummy do in my 1st apt? will i b put on meds right away?? im just at a loss 4 everythin so anythin u could tell me would b fantastic. sorry for rantin on an on but but it feels good 2 get it off my chest :oops:
  • carolaniveycarolanivey Member Posts: 64
    edited 30. Nov -1, 00:00
    And you can rant to me ANY time. I've been where you are and even 45 years on, I still feel the need to rant now and then! :)
  • polly1985polly1985 Member Posts: 70
    edited 30. Nov -1, 00:00
    thanks so much. i got my appointment thru so its on the 27th

    . i have has a very bad few days. it was really hectic at the weekend at work and it really has taken its toll. i can hardly bear to walk my feet r sooooo sore. my hands r sore and stiff and didnt think i would get the medication out at work because of it. my back is aching and legs feel so heavy. im having trouble finding relief.

    i currently take tramadol 400mg slow release, diclofenac 3xday, paracetamol 4xday and amitriptyline 25mg 1 at 6pm and 2 at 10pm.

    my bloods show high white cells and platelets. ive heard this is a sign of arthritis??? how will the consultant no that i have RA or not, ive heard it doesnt always initially show on bloods and xrays??

    is the meds different in the US? i think it is so good that people fro anywhere can b on this site and share different experiences and different treatments.
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