How common is rare?
My neighbour went to see her GP yesterday. I know, I know...people see their GP's all the time and it's hardly newsworthy let alone blogworthy. Although, it might work as an insomnia cure CD, random people talking about their neighbour's boils or carbuncles. On the other hand that could be a true reflection of how business orientated my brain isn't and explain a whole heck of a lot about my earning potentials. Anyway, neighbour/GP...Neighbour and I spend a fair bit of time together, but I noticed she was hypermobile when we first met. Her hypermobility is at the milder end of the spectrum, the most significant problem being that her pelvis, which first separated 20 years ago during pregnancy, has never really gone back to where it should be and these days causes her to walk with noticeable difficulty and altered gait. Neighbour is a single mum with a child under twelve so is still at home in receipt of benefits but will be expected to seek work in another year or so according to the new rules for Employment and Support Allowance. Neighbour really wants to go back to paid work and like most people who've been out of the employment market for a while has understandable anxieties about what she'll do and how. In addition to these anxieties neighbour is worried about how she'll work on the days her back is really bad and prevents her from moving around.
Over the past 20 years neighbour has gone back and forth to her GP with non specific spinal and pelvic pain and complaints of intermittent numbness and tingling in her hands. She's become the classic heartsink patient, and knowing that her doctors don't take her seriously or ever actually 'do' anything had given up hope of getting any useful support or advice from her GP.
Neighbour is also a classic undiagnosed bendy. She has a history of gymnastics and dance as many hypermobile people gravitate towards such activities alongside a history of vague, unexplained injuries which seem to hurt for an excessive amount of time and never really get better. To a trained eye her hypermobility is immediately obvious in the way she moves, talks and gesticulates.*
A few weeks ago I lent neighbour my latest copy of Brad Tinkle's Issues and Management of Joint Hypermobility, I keep having to buy new copies as people borrow them and don't give them back. Brad's book is an excellent guide for patients or medical professionals, far more affordable and accessible than Hypermobility Syndrome:Diagnosis and management for physiotherapists, which is only really worth buying if you intend to donate it to your local NHS physiotherapy department. Although I knew neighbour was hypermobile, I'm not a doctor so I suggested she read through the book, see if any of it sounded familiar to her and make an appointment to see her GP if it did.
That took neighbour to see her GP yesterday, armed with a leaflet about joint hypermobility and a request to be referred to a rheumatologist. The GP was initially reluctant but once neighbour was able to explain that she knows she is hypermobile and would like to try and improve her back problems, the GP agreed seeing a rheumatologist is a sensible step to take. Neighbour should receive a letter confirming the referral within a couple of weeks.
Neighbour brought me some flowers to say thank you. She has been struggling with chronic pain for 20 years, so is very relieved to have an idea of what is causing her problems and more importantly what she can do about it. An official diagnosis of Hypermobility Syndrome, explanation from a rheumatologist rather than just me, a referral to physiotherapy and podiatry won't just make a huge difference to neighbour's quality of life they'll make a huge difference to her ability to successfully re-enter the workplace.
The loss of the kind of specialist diagnosis and management skills currently offered by Professor Howard Bird in Leeds has wider implications than the loss of a specialist for those of us with Ehlers Danlos Syndrome. Mild hypermobility is incredibly common and can give rise to a whole variety of musculoskeletal problems. These are the kind of problems which are relatively easy to treat and manage if diagnosed in a timely fashion, but which become increasingly difficult to deal with if not spotted, partly because of the psychological impact of having a chronic, painful injury on an individual's self esteem and ability to cope. All factors which are really important when seeking or remaining in employment.
It's very easy to check for hypermobility in just a few moments, the Beighton Scale was designed to do just that. Although a positive Beighton scale is not enough to diagnose Hypermobility Syndrome or Ehlers Danlos Syndrome, it is a simple check which can be performed in moments without any specialist equipment and if combined with a few basic questions give a reasonable idea of whether or not hypermobility could be the cause of the presenting complaint.
*hypermobile people tend to use their hands a great deal whilst their speaking and move them in a typically balletic manner.
7 comments:
Dear Bendy,
Thanks for the information.
Since I have been reading your blog I have had 1 new case of ED and one of milder hypermobility.
I think you'll find most GPs sympathetic, but it is not always Number 1 on the list of diagnoses, so a steer in this direction is very helpful.
JD.
A very interesting post. And it's so good that you have been able to help your neighbour get the referral that she so obviously needs.
I'm glad you were able to help your neighbour.
I just had a customer at work pray with me for healing as I was on my cigarette break.
I hope that your neighbour gets a diagnosis properly once she has seen the Rheumy. Living with joint hypermobility and not being taken seriously isn't fun.
It's funny you mentioned the hands thing too...although I had given up hoping to ever be taken seriously and actually get a diagnosis of what was wrong with me, I allowed my new GP to send me to see someone and that wonderful lady spotted my hypermobility within 4 minutes of talking to her, subsequent chats/exams etc proved her point as she told me I have EDS. I've often wondered how she knew, as at that time I was in so much pain I could hardly walk at all, but of course she watched my hands, and mine really DO flap about all over the place like demented butterflies. You clever thing you :o)
That's absolutely brilliant that you've been able to help her. GP's are just that General practitioners and don't know everything. It's the research you've done that's helped her!
I think bendy people can scent out other one's/ The only thing I would say about the self testing criteria is that Professor G said to me that whilst it is good many people go undiagnosed or sort of underdiagnosed because they may score very low on the actual scale and may have other areas of hypermobility not on the scale leaving them still in pain and sort of underdiagnosed as a result. Its his hope that all rheumatologists are familiar with the scale and its interpretation. My worry is that often people with mechanical pain are sent off to orthapods who seem not to be so 'understanding'. Physio in the wrong hands can be damaging so anyone diagnosed should make sure that the physio is willing to learn!!
Brilliant that you are able to help her and hope her pain is taken seriously and she is helped in all the right ways!
xoxoxoxo
One thing that comes up in the US at least is the thought that if you're not extremely bendy or don't hit the "right" joints for Beighton or Brighton scales, there's no problem. I got told as a teenager that I had "minor joint laxity" that would never cause me any problems. Same doctor (pediatric rheumatologist) missed that I was essentially describing hip subluxations.
Since I've seen a physio who is shocked by how bendy I am and the fact that no doctor has picked up on it and that it's at least part of my problems. Took this info to other doctors who tell me once again that I'm not bendy enough to be having problems.
Luckily for me I have supportive family and friends and pretty much all my friends with EDS think it's probably what I have so we're working on getting me in with one of the top US specialists for it, but the number of medical-types who've said "it shouldn't cause you any problems" is getting to be ridiculous.
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