frustrated with tests !

dianne2110
dianne2110 Member Posts: 32
edited 11. Apr 2009, 20:18 in Living with Arthritis archive
:cry:
Has anyone else had the same problem all the tests i'm having are coming back as normal, I'm in constant pain can hardly use my hands, have great difficulty walking in fact every thing hurts.

all i want to know is what is wrong I don't know where to go from here

Di

xx

Comments

  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -0001, 00:00
    Hi, It is frustrating for you when you feel so awful and the tests are all OK, but that happens sometimes. People on here are in the same position and they will tell you about it. I myself have OA in lots of places, which is quite painful, but the blood test are normal. The OA shows up on the x-rays and scan. They sometimes call it 'wear and tear' which makes me cringe a bit, and feel that I should'nt make a fuss. :( Have you had any x-rays or scans? It maybe that something will show up on these. If you have'nt seen a Rheummotologist, perhaps your GP will refer you. Or maybe he'll send you for an x-ray.

    Hope you soon get sorted out. Remeber, the blood tests don't always show everything, and your pain is very real. :x :) love sue
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    woodbon wrote:
    Hi, It is frustrating for you when you feel so awful and the tests are all OK, but that happens sometimes. People on here are in the same position and they will tell you about it. I myself have OA in lots of places, which is quite painful, but the blood test are normal. The OA shows up on the x-rays and scan. They sometimes call it 'wear and tear' which makes me cringe a bit, and feel that I should'nt make a fuss. :( Have you had any x-rays or scans? It maybe that something will show up on these. If you have'nt seen a Rheummotologist, perhaps your GP will refer you. Or maybe he'll send you for an x-ray.

    Hope you soon get sorted out. Remeber, the blood tests don't always show everything, and your pain is very real. :x :) love sue

    hi Sue

    Thats the rpoblem i've had xrays, blood tests bone scans you name it

    The rheumatologist arranged the scan. Think I'm just gonna give up


    Di
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -0001, 00:00
    Hi,
    Maybe something like fibromyligia or something, thats hard to diagnose? Just a thought :!: :) I worked with a girl who had that and she had muscle pain as well as joint pain and tender places on her body? Who needs a doc when I'm around with the internet!!! :oops: Sue
  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -0001, 00:00
    woodbon wrote:
    Hi,
    Maybe something like fibromyligia or something, thats hard to diagnose? Just a thought :!: :) I worked with a girl who had that and she had muscle pain as well as joint pain and tender places on her body? Who needs a doc when I'm around with the internet!!! :oops: Sue

    Hi Diane
    It must be awful for you to be in so much pain yet nothing shows up on any tests. It's not that you want it to, its you just want an explanation for all that pain! Strangely enough though test results frequently don't correlate with pain felt, just ask some of the other users on the site!! On the other hand it is a good sign that your inflammatory markers etc are not showing high levels. How does your rheumy plan to manage things?
    Gillx
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    mistywillow wrote:
    woodbon wrote:
    Hi,
    Maybe something like fibromyligia or something, thats hard to diagnose? Just a thought :!: :) I worked with a girl who had that and she had muscle pain as well as joint pain and tender places on her body? Who needs a doc when I'm around with the internet!!! :oops: Sue

    Hi Diane
    It must be awful for you to be in so much pain yet nothing shows up on any tests. It's not that you want it to, its you just want an explanation for all that pain! Strangely enough though test results frequently don't correlate with pain felt, just ask some of the other users on the site!! On the other hand it is a good sign that your inflammatory markers etc are not showing high levels. How does your rheumy plan to manage things?
    Gillx

    Hi

    My rheumy didn't even tell me I had to chase by phoning then it was his secretary she just told me the results were normal, they had sent the results to my dr that was it.

    I asked her how in gods name everything was normal when I was in pain all the time ..... silence.
    I'm going to see my dr but he's away until 29th, I just feel i'm hitting brick walls all the time.
    My Rheumy when I went to see him this time had the attitude of what does it matter what the diagnosis is anyway, well actually it does matter..... to me !
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    woodbon wrote:
    Hi,
    Maybe something like fibromyligia or something, thats hard to diagnose? Just a thought :!: :) I worked with a girl who had that and she had muscle pain as well as joint pain and tender places on her body? Who needs a doc when I'm around with the internet!!! :oops: Sue

    Hi Sue

    I did ask my GP cos I read up about FM He just said in about 5 seconds of course you don't have that
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    If it is FM does it ever go ? Do you have it and thats it? A lot of GP s don't even think its real
  • milmandy
    milmandy Member Posts: 20
    edited 30. Nov -0001, 00:00
    Yes, just to back up what others have said..this is my experience too and jolly annoying it is !. You don't want to have anything wrong in one way but you do want to know why everything hurts and to be taken seriously.No positive results don't mean no pain!
    Hang on in there..there are more of us "non classic symptoms" peopel about than you think!
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    milmandy wrote:
    Yes, just to back up what others have said..this is my experience too and jolly annoying it is !. You don't want to have anything wrong in one way but you do want to know why everything hurts and to be taken seriously.No positive results don't mean no pain!
    Hang on in there..there are more of us "non classic symptoms" peopel about than you think!

    I think it does help to know there are other people out there. my thoughts and prayers go out to you all
    xx
  • lindalegs
    lindalegs Member Posts: 5,399
    edited 30. Nov -0001, 00:00
    Hi Dianne,

    How do you sleep? From what I understand a classic symptom of Fibromyalga (spelling!) is that sleep is full of dreams and is only light - classed as REM sleep. Because the body doesn't get deep sleep it brings on muscle pain. I'm sorry to say it is a lifetime condition but there are spells where it is better than others. Folk with Fibro may contradict me on the above but I'm just trying to help and let's hope you don't have it anyway.

    Sorry you're feeling so rough :( we often feel better when we've had a label put on our pain/illness as it helps to know exactly what we're up against.

    I hope you get sorted very soon.

    Luv Legs :D

    PS I think it's ludicrous that you can't get to see your GP till the 29th - don't you have locums in your area?
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    lindalegs wrote:
    Hi Dianne,

    How do you sleep? From what I understand a classic symptom of Fibromyalga (spelling!) is that sleep is full of dreams and is only light - classed as REM sleep. Because the body doesn't get deep sleep it brings on muscle pain. I'm sorry to say it is a lifetime condition but there are spells where it is better than others. Folk with Fibro may contradict me on the above but I'm just trying to help and let's hope you don't have it anyway.

    Sorry you're feeling so rough :( we often feel better when we've had a label put on our pain/illness as it helps to know exactly what we're up against.

    I hope you get sorted very soon.

    Hi

    I am going to try seeing another dr at our practise on wed after easter, No I don't sleep up and down all night very bad nights full of dreams and pain, mainly pain.

    just had a letter from my rhuemy he's sent the dr some results which again are normal and he can't see me till july.


    Di

    x



    Luv Legs :D

    PS I think it's ludicrous that you can't get to see your GP till the 29th - don't you have locums in your area?
  • denpen
    denpen Member Posts: 389
    edited 30. Nov -0001, 00:00
    Hi Di
    I do feel so sorry for you, I know what its like to bang your head against the brick wall. 15 years ago I had "back pain" it took them all the tests they could do and 2 years to give me the diagnosis that I had "worn discs" in my lower back. Moving on to now - I went to my Locum GP in Feb 08 with hip pain he told me I had fibromyalgia, and I believed him (thats what you do) I saw a physio at the hospital for a different reason, he told me I didnt have fibro. so off I went to see another Locum GP who sent me for blood tests - all clear for arthur he said, I had X rays and as the GP put it "only wear and tear in both hips" But in the consultants words I have OA in both hips and need a replacement - shock horror!! In other words GPs are just that "General Practioners" you need to find out what the problem is and push to get it sorted. The best of luck to you and keep pushing them after all its you that is in pain and suffering and not the GP.
    Denise.
  • dianne2110
    dianne2110 Member Posts: 32
    edited 30. Nov -0001, 00:00
    denpen wrote:
    Hi Di
    I do feel so sorry for you, I know what its like to bang your head against the brick wall. 15 years ago I had "back pain" it took them all the tests they could do and 2 years to give me the diagnosis that I had "worn discs" in my lower back. Moving on to now - I went to my Locum GP in Feb 08 with hip pain he told me I had fibromyalgia, and I believed him (thats what you do) I saw a physio at the hospital for a different reason, he told me I didnt have fibro. so off I went to see another Locum GP who sent me for blood tests - all clear for arthur he said, I had X rays and as the GP put it "only wear and tear in both hips" But in the consultants words I have OA in both hips and need a replacement - shock horror!! In other words GPs are just that "General Practioners" you need to find out what the problem is and push to get it sorted. The best of luck to you and keep pushing them after all its you that is in pain and suffering and not the GP.
    Denise.

    Hi Denise,

    I will give it a try but my consultant is very non commital. I'll get there.

    Its true though every time you see a GP they tell you something different and they all talk like they really believe what they're saying


    Di

    x
    Di
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -0001, 00:00
    Hello Di

    Found the following for you:
    In fact 15-25 percent of all patients with rheumatoid arthritis do not have rheumatoid factor in their serum. There is no conclusive laboratory test which confirms the diagnosis of rheumatoid arthritis.
    Keep a symptom diary. A symptom diary can help you keep track of pertinent facts about your condition and also help you track changes that may occur. With the diary, you are more inclined to give your doctor a good overall picture of the symptoms you are experiencing.
    http://arthritis.about.com/od/arthqa/f/rheumfactor.htm

    You shouldn't need to suffer, just keep on at them until they give you a diagnosis. If you give up, then they think your alright.

    Joseph 8)
    Josephm0310.gif

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