frustrated with tests !

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

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woodbon

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

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

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

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

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

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

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

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

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

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

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?

dianne2110

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

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

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

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

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)