Blood results

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I have had joint pain and morning stiffness for 3 years. I can't turn over in bed because of pain. I recently saw a rheumatologist who did an anti CCP blood test. This was raised at 37 . He told me that the results were jot relevant and to disregard them! He has discharged me with a diagnosis if fibromyalgia. I am finding it hard to disregard my blood results, as I am i so much pain and cannot understand why he would not think it relevant?

He has not suggested any pain relief or how I should manage my condition. I feel that I have just been left alone to deal with it. Does anyone have any idea why he would disregard my blood results?

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14 Replies

  • Posted

    I would suggest getting another rheumatologist. In my city, there are several to pick from. I would not necessarily go into what you experienced from this particular rheumatologist. I would explain your symptoms and let them do the complete blood panels. In my case, my hands started hurting (also have osteoarthritis) and went to a rheumatologist and basiclly only one marker came back positive, however, she did xrays and an a mri of my right hand and it showed joint errosion. This was 2years ago, i have not started rheumatoid meds yet because of some other issues I had experienced (major surgery) and I am sensitive and usually get every side effect possible for any drugs I take. I have however, gotten steroid shots and pills to lower the inflammation because of the pain it builds up to like barely being able to move. I hope in the new year I will be able to start a specifc regiment to help with my pain. Good luck and let us know how it goes.

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  • Posted

    I wonder why he chose fibromyalgia rather than - say - polymyagia rheumatica? When someone tells me they have pain and can;' turn over in bed that is my first thought! That is an absolutely typical complaint. Have you had sed rate and CRP checked (not that they are conclusive)?

    You need a doctor who will include you in their thought process. Personally I am of the opinion that fibromyalgia is a diagnosis used by doctors who don't know and can't be bothered to find out what is wrong. There is little they can do - so can just leave the patient hanging.

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    • Posted

      I agree totally . He made me feel like nuisance and I feel he just wanted rid of me. He did MRI my pelvis because i have lots if pain in lower back and pelvic area . He said this showed a lesion on my hip so sent me for a second scan but has discharged me so I can't receive results! waste of time and money and I am left worrying about this lesion!

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    • Posted

      Just noticed your post mentioning steroids - that is a typical response for patients with undiagnosed polymyalgia rheumatica when put on steroids for something else. It adds fuel to what I said in my post above. Why say it is fibro when another disorder may look almost exactly the same - and responds to steroids?????

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    • Posted

      So yes, even if he has discharged you the result should be sent to the GP.

      Where-ish in the UK? You need a better rheumy for a second opinion. Especially with the pred evidence.

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  • Posted

    if you feel uncomfortable about the doctors decision I would definitely get a second opinion other blood results combined also help the doctors make a decision it took them 5 years to diagnose me with seronegitive ra and fibromyalgia my ccp is normal but I have high amount of inflammation in my body and I am at a high desease level for joint deterioration according to my Vectra score good luck to you I hope you can find your answers it's not fun feeling like there's something wrong with you and they can't figure it out.

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  • Posted

    hello, I feel for you and went...going through the same, go straight back to your doctor and ask to go on steroids for a few weeks whilst he decides what treatment you need. I was in some real dark places felt like no one was listening im on my 4th and finally think theyv found something that agrees with me . please go back and insist, you know your body! X

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    • Posted

      HI thanks for replying. I have recently had steroids for an allergic reaction. I felt like a different woman! My Gp is going to refer me for a second opinion but in the meantime i am on naproxen Good to hear you are finally getting sorted x

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  • Posted

    Hi Lynne,

    I also had an Anti CCP done my result was 200 and the normal apparently is 5, I didn't get any treatment either, they said if your other bloods are normal we don't take any notice of the CCP when I asked RA nurse why all I got was a shrugg of the shoulders, I am not on any meds either just a diagnosis of Fibromyalgia which I have had for many years anyway and possible Palindromic RA,

    Linda.

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    • Posted

      HI Linda

      I have been back to my GP and he is happy to send me for a second opinion when the MRI results come back. This week had been terrible I am waking up with a stiff ribcage and it hurts to breathe .This lasts for around half an hour. My GP could not understand why the blood results were ignored. Like you know yourself it is very frustrating!

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