Despondent

Hi

I finally had my Rheumatology appt today, I've waited 3 months for this and tbh was a bit overwhelmed when I got there. I listed all my symptoms (covered in a previous) post. Also added that I've developed plantar fasciitis which is agony.

He did a few basic checks (checking for fibro trigger points) and has said he thinks my problems are linked to hypermobility which I've known about for six years and had physio several times. The ANA was 1:80 speckled so not enough to raise an eyebrow and he didn't want to repeat any tests or do any scans.

So I'm just to go away and get on with things. He said I could have more physio but been there already/see a podiatrist but already done that.

I feel so down. I didn't want to be diagnosed with a connective tissue disorder but I didn't want to be brushed aside so easily either :(

11 Replies

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  • Hi scscsc,

    I'm sorry to hear that your rheumatology appointment did not go very well and you have been left no better off that you were before you had it. If you are unsatisfied with your diagnosis and/or treatment plan then you can ask your GP to refer you to a different rheumatologist for a second opinion. Perhaps one who has a specialist interest in lupus? If you let me know what part of the country you are in, I can provide information about any specialists we know near to you.

  • Thanks Paul. Will try the GP in a few weeks. I'm in Plymouth

  • Hi scscsc,

    Both Dr Lindsey Robertson and Dr Nick Viner have a specialist interest in lupus and are at Derriford Hospital, Plymouth.

  • Oh, that's not good, scscsc. How disappointing. It's the worst feeling when the professionals seem unable to realise just how important these appointments are for us, and can't see how doing nothing is no help at all. Dis your rheumy have any ideas about what is going on? Do you have any ideas about what you would like to see change? Perhaps you can arrange to see your GP to talk over the outcome of this appointment and see if s/he can come up with some new ideas? If nothing else, Paul's idea of getting a new rheumy might be a good option.

    In any case, please do keep posting and I'm sure people here won't give up as easily as your rheumy seems to have x

  • Thank you. He just said that people with hypermobility can become sensitive to pain and start 'looking for it' in different areas of the body. I wanted something new. Something I hadn't tried. I guess I have to accept that there might not be an answer.

  • I can see why you are so disappointed and think the wording of "looking for pain" was insensitive. No one looks for pain- it just finds us!

    At the end of the day you may or may not have autoimmunity, but if you feel unconvinced by his opinion then I suggest you seek a second opinion. Hypermobility Disorder is often associated with diseases such as RA, Lupus and Sjogrens - all of which can present seronegatively and develop over time.

    But equally you do have a serious condition already that can and does affect the connective tissue of itself - so the rheumy may be right to say this is enough to cause all your symptoms. I would mull on it all for a few days and then go and see your GP and talk it through.

  • Thanks Twitchytoes, I will mull it over. I'm just so frustrated there is nothing that can help me if he is right because I've done it all already with knobs on! There are several symptoms which hypermobility doesn't cover but it's so hard to get anyone to take me seriously so will probably wait until I develop a new symptom or something cos it's just so tiring...

  • I think many of us know exactly how tiring it can be. But we lick our wounds for a bit and then start again until we get where we need to get.

    If it's any consolation, a year ago I was told by rheumy no.2 that my symptoms and signs weren't to do with any connective tissue disease and he also cast doubt on my first rheumy's diagnosis of RA.

    I felt completely at sea and exhausted just as you do after five years of health and diagnostic rollercoaster. But then we moved to a new area where my next gp referred me to a new hospital and a 3rd Rheum diagnosed me with Sjogrens on the strength of clear positive test results.

    This is after 18 months of a watch-and-wait approach. Keep a close note of symptoms and don't give up. We know our bodies best - so give yourself a break and then regather yourself up and remember to always trust your instincts.

  • If he had said to me that I was 'looking for pain' I would probably start looking around his consulting room to find something suitable to whack him with.

    Seriously, how disappointing for you and dismissive of him. I second the idea of a second opinion. Can you afford to go private?

    I have a negative ANA yet I have a diagnosis of Lupus. My malar rash is "spectacularly textbook" according to my wonderful rheumatologist. Sounds like you need to find a doctor that you have faith in. We've all been there, not getting listened to, it's horrid.

    I hope you get the help you need. I can sort of recommend a rheumatologist that does private work in London if you PM me. I haven't seen them myself but my friend (who happens to be an doctor herself) gets seen by him and thinks he's the bees knees.

    Good luck and don't give up!

  • So sorry! We've had appointments like that, which is why my wife's current rheumatologist is #4 over a span of just nine years (not counting the attending MDs in hospitals).

  • Well this is coincidence. I waited for 4 months at Plymouth (not a first appt) and had such a similar experience. I felt as if the dept had been told to decrease the patient list. I haven't been diagnosed with lupus but uctd and myosotis but have many lupus symptoms. I'm on methotrexate and hydroxychloroquine. I was told (just) - there's no other drugs and no other tests. I feel pretty rough most days. I was hoping to have a better outcome but felt I was being told this is it just pace yourself.

    I hope you have some better attention. I'm thinking of seeing someone else.

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