New blogger - not yet diagnosed

New blogger - not yet diagnosed

I am a new member to this site so excuse the errors (I already started this message and lost it once). I have been having problems for 13 years now and was diagnosed in 2002 with fibromyalgia. I have always thought that there was something else going on though as some of my symptoms didn't fit with fibro. For one I have problems with my hands, wrists and my feet. I also have problems in the morning with stiffness that lasts longer than 30mins. If I squeeze my knuckles the pain is awful (I had noticed that if someone shook my hand a bit hard I wanted to scream). i get this feeling that i am getting flu which just ends with aches all over and not flu. I am tired all the time sometimes it's hard to put one foot in front of the other. For the past couple of years I have been having trouble with dry eyes they are quite often swollen. I am constantly dropping things and have problems picking up things like tablets. Just recently I am getting a problem with breathlessness and find I can't keep my arms up whilst doing my hair. My father and older sister have seronegative RA, their esr started off in the lower teens for the first 8 to 10 years of their illness. My esr when measured recently was 14, it went up to 24 at one time. I am on tramadol for the fibro and 2400mg of brufren retard for osteo arthritis Would the ibuprofen I am taking effect the esr? I have seen a rheumatologist but he said my symptoms are fibro related and discharged me back to the doctor. I was looking through my test results and found one for the anti-CCP antibody level which was .50 positive, RF negative in 2008 and I am feeling much worse since then. I have a lump on my wrist which is very painful, the doctor sent me for an X-ray and the report came back as looking as though it was some kind of inflammatory arthritis and that I should be referred to a rheumatologist, so here we go again. I am sorry this is long winded but I wanted to tell it like it is and see if there is any advise out there that could help me. I need to be prepared next time I see the rheumatologist. I know there will be others with similar stories to mine. Picture of my gorgeous dog

11 Replies

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  • Hi Franbie

    Welcome to this fab site though unfortunately not in good circumstances.

    Im sorry i am of no help whatsover with your symptoms as im still wading my way through it all a year after being diagnosed but still not on meds that help and still not pain free in the slightest.

    There will be people on soon who are very helpful, i know as they have helped me enormously.

    Take care for now. Can i just say your spaniel is soooo adorable.

    Jo

    Xxxx

  • Welcome franbie, you have come to the right place. It certainly sounds like ra as well as fibro. When your dr refers you back to the rheumy ask to see another dr as you didn't get any satisfaction with the last one.

    The nras team are always there if you want information and they will be willing to help and so will a lot of us as well. If you want to have a moan please feel free,and if you have something funny or good news you can share that as well. Sometimes we have silly blogs as it helps keeping us cheerful.

    So finally welcome and we look forward to hearing more from you. sylvia.xx

  • Hi Franbie,I am pretty new here too and I have R.A and Fibro.I was first diagnosed with fibro,same symptoms as you almost 17 years ago,then my GP did a blood test and I was diagnosed with R.A too.It really sounds like you have R.A..Sometimes I find it hard to tell which is playing me up.I hope when you see the Rheumatologist that he /she can give you a definate diagnosis and get you started on some sort of treatment.Your dog is gorgeous by the way.xx

  • Rita56

    Can i ask (sorry im not following the blog) but can you pm me about your sypmtoms of fibro, i have had a question from rheumy team about having fibro but im not sure.

    Thanks

    Jo

    Xxxx

  • I really shudder now when there's yet another story of a horrible journey to diagnosis, as it seems so unfair that you have had to put up with this for so long. I thought mine was long and it only took a year or so, but 13 years really takes the biscuit. When I'm at my most cynical I think that there's a secret test for RA which is to send the patient away undiagnosed and see if they come back again. And it's only if you're really, really persistent that they pay proper attention to your symptoms. At my most positive I merely think that it's a hard thing to diagnose as so many variations, and rheumatologists are swamped with patients. But with a positive anti-CCP, even if only weakly positive, they should have paid more attention as that's a more revealing test than the RF factor as so many of us are RF sero-negative. And even more so with your family history.

    But yes I think NSAIDs such as ibuprofen can affect your ESR as that tests for inflammation, and the NSAIDS do damp down inflammation. Also ESR is quite personal, some have naturally higher readings than others and some low. I'm one whose ESR rarely budges much, and when it gets above 20 I'm in huge flare, whereas for some people that would be normal. So it is entirely possible that you do have either RA or another inflammatory arthritis with those results/symptoms.

    So my main advice would be to stand your ground, and make sure you tell it how it is when you get to see a rheumy. Keep a pain diary, and take photos of swollen joints if these come and go. nd look at the NRAS website if you haven't already done so as lots useful info there. good luck. polly

  • funny you should mention brufen ive took this before and no problems if i had a bit of an ache then it would go if i take it now im climbing the wall for some reason

    but your in a good place on here to find thing out and give you some focus and direction

  • Hiya Franbie and good to see you on this site, it's been a lifesaver for me!

    It sounds like you are going thought the mill at the moment but keep strong it will work it's way through soon I am sure.

    What I think is keep pushing! When u r getting a diagnosis it's the hardest thing I think. I am sero negative but have rotten RA! Blood test do show high inflammation and I have the classic symptoms which are, for me, sore painful joints, swelling and some immobility, fatigue...total exhaustion, stiffness for an hour before getting up in the morning.

    I agree with Polly the best thing to do is take photos of any painful or swollen, joints, record how long it takes to get up, when u r tired and take these to the doc with you.also take a list of questions with you and if possible someone else as they will take in what u miss.

    Try to get a rheumatology appointment ASAP, so badger your GP as much as possible and most importantly go to him for pain relief. If the Brufen not effective go back and get stronger pain relief until you get something that helps.

    There are I believe over 200 types of arthritis! So sometimes it can take the a while to make up their minds. nRAs are brilliant, they have an amazingly helpful website, support groups and helpline, give them a ring! So good luck, keep blogging here and let us know how u get on hugs Axx

  • Thanks so much for all the replies, the advice is very helpful. My sister who has RA has also said to be persistent so I will keep trying to get them to listen. Thanks for the the comments on Mistie the spaniel. I think she is the one that keeps me sane and more importantly mobile in all this.

  • Yes, the NSAIDs could definitely dampen down an ESR, but be aware that raised ESR is NOT a requirement to diagnose inflammatory arthritis, and in quite a lot of people it doesn't change significantly with disease activity. Have a look at the arthritis campaigns on "have you got the S-factor" - that pain in your hands is classic. If NSAIDs make a difference to your pain, then thats another pointer to it being inflammatory arthritis (if NSAIDs give relief within 24-48 hours of starting to take them regularly, and if pain returns within 24-48 hours of stopping them).

    Also be aware that RA is not the only kind of inflammatory arthritis - there is also another big group called spondyloarthritis, that has several different subgroups (including psoriatic arthritis, enteropathic arthritis, ankylosing spondylitis, etc) and the incidence of spondyloarthritis is almost as high as RA in the general population. Spondy is even harder to diagnose than RA because there is no blood test that will prove it definitely, and the main evidence for it (actual damage to bones) only appears well into the disease process.

    Google "inflammatory arthritis", make a note of any of the signs or symptoms you have, and ask your GP to refer you for a second opinion. The fact that you have a family member with diagnosed inflammatory arthritis (RA) is also significant. You'd be amazed by how many people get brushed off with a fibro diagnosis before inflammatory arthritis and other disorders have really been investigated thoroughly.

  • Hi and thanks for the reply. I do get problems with my skin at times which comes up in a rash, thought it may be eczema. I looked up the definition of the anti-CCP results which said that 50-60 is a moderate positive for RA, RF was negative. This test was 5 years ago and I am now alot worse so could do with an updated test. If I could get another BT done I would try and keep off the ibuprofen.Thanks again for your help.

  • Thanks again to everyone. I have taken photo's of the lump on my wrist and started a pain diary so I should be prepared when I next see the doctor.

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