Rheumatology appointment

This morning I had my appointment with the Consultant Rheumatologist about my Ehlers-Danlos and I’d only had to wait 3 weeks from referral which is virtually unheard of 🙂  I haven’t seen a Consultant about my EDS since my diagnosis in 2010, despite the fact my condition has markedly deteriorated in that time.  I was originally diagnosed by Dr Paulene Ho in Manchester as she runs a hypermobility clinic but it’s 100 miles away and I’ve since learned that the Rheumy at my local hospital in Cumbria does recognize EDS so obviously I opted to see him this week.

He was very nice which is half the battle IMHO.  I’ve lost count over the years of the Consultants I’ve seen who are arrogant, don’t listen, have decided what’s wrong with you before you walk in the door then try to shove you out again 15 seconds later, so to see a Doctor who listens and asks all the relevant questions is always a relief.  He didn’t bat an eyelid when I said I had Mast Cell Disease and seemed to know it is now thought to be linked to EDS in some patients 🙂

My main concern is my hips, in particular my right hip.  I’d never had any hip problems before April 2014 when they suddenly started killing me to the point where I couldn’t sit, stand or lie and the pain kept me awake at nights.  I was diagnosed by my GP has having Greater Trochanteric Bursitis (not sure how as no x-rays or anything were taken, maybe she’s psychic) and passed on to physio who prescribed total rest.  I then spent the next 9 months on crutches.  The hip pain did settle down but I’ve been left with vastly reduced range of movement, stiffness and pain on rotation.  I’ve put up with all that for over a year hoping it would sort itself out but it hasn’t, so I decided I should see someone about it.

The Rheumy confirmed the range of movement in my right hip is pretty dire.  Only about 30% outer flexation and 5% inner flexation, as against 70% outer flexation and 40% inner flexation in my left hip (which still isn’t normal either) 😦  So he sent me off to x-ray, which took nearly an hour because it was lunch time.  The x-ray thankfully showed nothing untoward bone-wise so he’s referred me for an MRI scan to see if there are any ligament tears – I’ll just have to wait for an appointment.  I’ve had so many x-rays and scans over the past 40 years it’s a wonder I don’t glow in the fucking dark 😉  He doesn’t think I ever had bursitis (which I suspected anyway) as this doesn’t tend to affect range of movement to any great extent.

To be honest I don’t think there’s anything wrong with my hips at all.  When I was on crutches last year both hips hurt like a son-of-a-bitch and I wouldn’t have torn both ligaments at the same time, just like I wouldn’t have developed bursitis in both hips at the same time.  I think the issue is with my back and has been for years – Doctors seem reluctant to tackle back problems though as they’re notoriously complicated!  The Rheumy today did concede though that if the MRI came back normal he’d have to look further afield to find the primary issue.

I had all sorts of questions to ask him but all he wanted to concentrate on was my hips, which I understand given the stupidly limited amount of time you get to spend with Consultants (I did remarkably well today and saw him for 20 whole minutes!).  The lump on my finger mentioned in this post is still sore as all hell but he couldn’t care less so I might make an appt with the nurse at my local health centre and ask her what I can do to sort it.

So, I’m now waiting for a scan, my moulded insoles and to find out what’s going on with my deformed knuckle.  I’ll keep you posted on all three, whether you want me to or not 😉



5 thoughts on “Rheumatology appointment

  1. d

    Hi Jak

    I am glad you had a pretty positive appt. with your consultant. I know how hard it is to get someone to take a good history and listen. It sounds promising that after the MRI he is willing to continue to pursue the issue and not just dismiss you out of hand. Good luck!


    Liked by 1 person

  2. M

    As you know I don’t usually comment on any regular basis but I HAD to respond to this post! I, too, got the hip thing! Diagnosed as bursitis because the xray was normal, I was given a steroid shot and sent home. It is progressively getting worse. Since this began about a year ago, other problems regarding joints and spine have been more pressing. I was beginning to think that I had something totally different than bursitis and finally gave in and made an appointment with the neurosurgeon who had fused my L4-5 S1 in 2012. Once I saw him he said that it could be a particular syndrome that sometimes occurs in the sacrum. He arranged for a mylogram on Wednesday so I will let keep you posted. If it is the sacrum, surgery isn’t an option but he said that there would be a plan to ease the pain and increase mobility.
    So far none of my doctors will even consider the Elhers Danlos diagnosis. I basically just gave up trying to get help with what feels like a fast moving decline. I am even checking into clinical trials. My daughter can rotate her arm almost 360 degrees and my sister can do, what use to be called double jointed, movements with her knees…Obviously something in going on in our family! Mast Cell/histamine issues are test book as well. Your blog been so beneficial and inspiring to my whole family! At least I know that I am not alone…Thanks so much!


    1. Jak Post author

      I’ll be very interested in hearing how you get on M. I suspect it’s my SI joint/sacrum that’s causing all my hip and leg problems as they are bilateral – don’t know why doctors can’t see it too. Having a hip MRI is going to be a big fat waste of time!

      Despite huge red flags my whole life that I had EDS (all medical professionals commented on how bendy I was) no-one ever mentioned it to me – many doctors have never even heard of it, or if they have they go by the ‘text book’ Beighton Scale not knowing that diagnosis has moved on! If you suspect it my advice would be to try and see a Rheumatologist who specializes in EDS if that’s possible.

      Jak x


  3. Sue

    Not sure exactly what arthritis I have but ends of bones and tendons all over except back hurt and I’ve had interstitial cystitis for all my adult life and it’s considered a mast cell disease but of course doctors don’t see the two related as arthritis not develop until I was 60. I get extremely stiff and loose range of motion in wrists and ankles but every week my physical therapist can undue some of the stiffness. So if anyone has stiffness might consider PT. But might add not too familiar with diseases on this blog perhaps.



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