A Chance to Make a Difference: Talking to Medical Professionals about Ehlers-Danlos Syndrome

A Chance to Make a Difference: Talking to Medical Professionals about Ehlers-Danlos Syndrome

Physio Talk

My mum is currently having physiotherapy after an operation on her shoulder. She got chatting to her physiotherapist, and my condition came up – Ehlers-Danlos Syndrome. It turned out that the physiotherapist has a great interest in the condition, has a few patients with it, and leads the in-house training to the other physiotherapists.  She invited me to come along to give a talk to them during that session.

So that’s how I ended up pretty much taking over the whole training session myself.

The idea originally was that the physiotherapist would cover the medical and exercise aspects, and I would cover the daily living aspects – but my notes grew longer and longer.  This was my chance to help make things better for people with the condition, and there was so much to say!

When you speak to someone with EDS, or other complex chronic conditions you’ll often find that they have had a bad history with a physiotherapist at least once in their past, and sometimes repeatedly.  (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault – we are well aware they have to see a lot of people in not a lot of time, and are generally encouraged to discharge as soon as possible. Many report being asked to pick one joint that is the worst, being handed a couple of exercise sheets and that being the extent of their treatment. Others, including myself, saw physiotherapists for years without them ever mentioning the hypermobility – that could have led me to that crucial  diagnosis.

While I had a lot I want to say myself, I wanted to let other people with the condition have a say as well.

So I went on to a Facebook group that has over 5000 people with the condition on and asked them what they would like to say to physiotherapists if they could. From that, adding in information about our symptoms, our daily lives, the different types and so on, I built up a talk.

The way their training sessions work is that they have an hour built into the day, and all the physiotherapists who don’t have a patient at that time, come along. She expected around 4 to 5 to attend – but when I arrived I was faced with a very small office filled with around 10 physiotherapists. It wasn’t so long ago I would have immediately turned my chair around, found a toilet and locked myself in it until they all went away, but I’m very lucky that over the past few years I’ve been chairing a meeting group and have greatly gained confidence in public speaking – to a certain extent, I’m not saying I’d be happy to give a speech to a large amount of people, let’s not get silly here.

It also helped I was talking about something I was passionate about – the education of front-line medical professionals.

A few of the topics I spoke about included the difference between Ehlers-Danlos Syndrome, Hypermobility Syndrome and Benign Joint Hypermobility Syndrome.  A general overview of how many medical professionals and consultants someone with EDS sees before they get a diagnosis, and the fact that it takes 30% of patients over 10 years to receive a diagnosis of EDS and over 20 years to 50% of patients. I also emphasised the fact that 95% of patients remain undiagnosed or misdiagnosed. I also spoke about which conditions are most commonly diagnosed instead of the correct or underlying cause of EDS, and also gave some tips in what not to do when treating or examining someone with the condition. I particularly emphasised that the condition is extremely variable – and that if we can’t come to a session or a few sessions it doesn’t mean we are uninterested, or lazy – just that it’s not what we are able to do at that moment. And it also depends on which areas of our body are a particular problem at the time, one week an exercise might be fine, but the next week dislocate a joint.

I emphasised to them that the way forward is for more frontline professionals to have an understanding of EDS – particularly GPs and physiotherapists who are often the ones patients see first.

No one expects everyone at those two groups to have full knowledge of the condition, when there are so many conditions out there – but it would be brilliant if when presented with a patient with long-term chronic pain, and hypermobility they referred them onto a specialist. Other things that would help patients is long term care, not just the six sessions that are offered on the NHS before being discharged, and the same thing with hydrotherapy, which should be an on-going treatment, particularly as it can be one of the only treatments that is effective for people with EDS.

They seemed interested, engaged with what I was saying, asked questions, and even asked advice on past cases and whether their care was appropriate (whilst maintaining confidentiality of course). One physiotherapist said that in general physiotherapists like regimented care, i.e. they can pick up a file for a patient that says they are currently doing six reps of exercise 1, and 10 of exercise 2, and so on.  Any other physiotherapist could then pick up that folder and continue their care if needed. However when he had a previous patient with EDS he found that it was completely impossible to treat him in this way. One week he could do a decent amount, but the next all he could do is lay on a table whilst the physio mobilised his joints for him. Other sessions he couldn’t even make it to the hospital at all. He said that he had to be really flexible with the patient – which emphasised what I was saying.

I also told them about my previous physiotherapy sessions, where I spent the first session explaining how I might not be able to make every session, I was having a lot of flare ups and spending a lot more time in bed unable to do anything and she seemed really understanding. And then it happened, I had to cancel a session and it turned into a few weeks as it was a really bad flare up, and I called to update her and they said just call back when you’re ready, which I did, only to find that she had discharged me.

I was too exhausted to go back to the beginning, so just went without.

Another physio suggested that on occasions like that it would be helpful for the physiotherapist to visit me at home, but of course I’ve never been offered anything like that. Also when talking about ongoing hydrotherapy, which I have been told previously is impossible due to the waiting list – they informed me they do have a few rolling programmes, including one for paediatrics with hypermobility, and another for people with Rheumatoid Arthritis – so it is possible. I’ve now got the name of the manager, and I’m going to contact her and explain how important it is for this to be put into place – particularly when a lot of us are being told that the ‘land based programmes’, as they call them, are inappropriate for us.

Hydrotherapy, for a lot of people with EDS is very good because the water supports the joints, so dislocations are less, the warmth helps with the spasming muscles and we generally find we can do a lot more in the water.  Of course this doesn’t apply to everyone, particularly if they have bad POTs alongside, as the heat can cause havoc with feeling faint and dizzy.

In summary I really enjoyed giving this talk, and have been invited back in July.

Patients talking to medical professionals is the way forward t0 them gaining an understanding to the reality of life with a complex condition, without reading a little paragraph in a textbook.

So I commend the physiotherapist that setting this up, and I hope more will do so in the future.

Have you ever has an opportunity to talk to medical staff  in this way?  What would you have said?


How do you solve a problem like facet joint injections?

How do you solve a problem like facet joint injections?

The next step in my quest for facet joint injections, is my GP.   But this time when I tell her what I need, she hesitates.  Normally she would send me to the local Pain Clinic, but she’s aware my opinion of the clinic is somewhere around… mud.  And that’s being polite.

But there must be other pain clinics, right?

So she has a look on the system and it shows a few I can pick from.  There’s a hospital nearby with a reasonably good reputation, and she agrees to send me there.  She tells me she’d be really interested to know how I get on with them, as it would be great to have an alternative to send people to.  Translation: she has issues with the local pain clinic too, but can’t say so.

I’ve been seeing the pain clinic for some years now, and I have to say the treatments/suggestions they offer haven’t changed a bit.  The latest medications, research and techniques don’t seem to reach them, so I’ll be really interested to see what the new clinic has to say.


Getting the answers doesn’t always solve everything

Getting the answers doesn’t always solve everything

For so long now I’ve been trying to get an MRI, after my mobility vastly reduced over the past few years. Luckily my specialist consultant agreed, and asked my GP to get one done locally.

My GP told me it showed a few issues

  • Limited marrow oedema (degeneration in the joint cartilage) in L2
  • Moderate degenerative changes at L4/5 and L5/S1.
  • Moderate sized disc bulge at L4/5 which along with ligamenta flava hypertrophy (enlarged connective tissue) caused by facet joint arthritis on both sides, which has resulted in acquired central canal narrowing (12mm instead of 16mm)
  • L5/S1 moderate broad based disc bulge causing an indent in the thecal sac. This has reduced the central canal measurements from the expected 17mm, to 11mm.
  • Synovial cysts are on both sides of the facet joints at L5/S1 level.

However, locally – I’m still getting nowhere. My GP referred me to a spinal surgeon to discuss this, but in my area we have a ‘spinal pathway’ – seemingly controlled my physiotherapists. Even having my results upfront, they still want a physiotherapist to carry out a physical assessment, which isn’t going to tell them anything!

After waiting eight weeks for this, I went back to my specialist consultant at the Royal Orthopedic Hospital, who agreed to refer me to a surgeon there, so I can actually discuss my options (if any).

But, it at least explains why I can’t walk far – both the spinal narrowing, and facet cysts would cause this issue and can’t be solved with the hand wave ‘just exercise more’ than doctors love.

English: MRI sagittal image of sacral and dors...

English: MRI sagittal image of sacral and dorso-lumbar perineural cysts (Photo credit: Wikipedia)

Nobody ever tells you an MRI is like being squashed into a very narrow tunnel, unable to move, with machine guns firing around you.

Nobody ever tells you an MRI is like being squashed into a very narrow tunnel, unable to move, with machine guns firing around you.



I was told me to get to the hospital at about 5 to prepare for my MRI at 5:25pm.

I immediately began to be concerned – I was having a high pain day, and one problem with an MRI, for those who are new to them – you have to keep completely still.  If you move they will start the whole thing again.  And anyone who knows me (or anyone with chronic pain!) will tell you – I can’t keep still.  I personify a fidgeter.

I took every painkiller I could, and arrived at 5pm, parking in a blue badge space next door to the MRI centre, which was a great bonus as they were normally full.  This meant I didn’t have to faff around getting my wheelchair out, as I was literally two steps away.

I was given paperwork to fill out, and immediately had to answer yes to a ‘red flag’ question – are you wearing any medicine patches?  The lady informed me I would have to take it off.  Oh.  You mean the patch that was brand new on that morning, that’s meant to last me another four days and if I take it off means I will run out of patches four days early, causing mayhem to my delivery system, and will leave me without lovely morphine pumping through me at a time I need to lay down for half an hour and keep still?  Apparently one person once had a reaction and it burnt her, so they now have to be taken off.   I’m not moaning at this policy – I just wish they’d have mentioned it as I would have held off putting it on and wasting £70 worth of patch.

I’m then informed I’m in the mobile scanner, which is on the other side of the car park.  At the look on my face, the receptionist kindly offers to call me a wheelchair, and I take her offer thankfully.  At 5:30pm a lady arrives, who has a limp, and is told she needs to find me a wheelchair.  She returns dragging a battered looking thing which she can’t get to move.  She limps off to find another wheelchair in the hospital – and returns with a chair that needs to be pulled backwards.  The rain is now pouring down, and I look longingly at the people going into the next room for the MRI as I’m pulled out the room backwards, by a lady who looks like she needs a wheelchair too, into the wet, cold car park.

We don’t make it very far – she pulls me straight into the tunnel that joins the two parts of the hospital up, and then says she is going back for an umbrella, and leaves me.  A grumpy looking security person comes along and closes all the doors around me, before I can protest.  Limping lady arrives back and isn’t happy that she now has to try and get a wheelchair through a couple of sets of closed doors.  Her umbrella blows inside out, and she gives up.  The receptionist appears and takes over the pulling duty, and they take me to the other side of the hospital.  Lucky for them – I can walk a few steps, because the mobile unit they have sent me too isn’t accessible.  I’m told to stand on a lift in the pouring rain – which isn’t big enough for a wheelchair, and they send me up.  I get even more soaked and cold while she shouts through to the other side to try and explain how they open the door to someone who can’t find the button.

I’m shaking by the time I get seated next to the person taking images, and can see the outline of a pelvis on the screen.  They are all sitting in coats, and look cold and bored.  I’m nervous – I’m soggy and about to go into a big electrical machine, but the lady assures me it won’t electrocute me!  I’d spent the afternoon putting together a ‘relaxing music for an MRI’ CD to try and drown out the noise, so I get it out, but they tell me the CD player is broken.  I’m struggling to breathe by now as panic sets in, so I puff on my inhaler before they take my bag away to lock up, and I take my patches off.  I’m not scared about the MRI itself – just worried about them having to restart because I move.  The other lady finishes and is getting dressed.  I’m aware of this as the porter walked in on her doing so without knocking.

I’m ushered in next, although I’m told I can’t take my stick in and will have to use the bed to lean on – which is too low to be possible.  It’s small and cramped.  The lady with me doesn’t really speak English very well, and waves at the bed, and then raises it until it’s much too high for me to get on.  She then sighs and says I was meant to sit on it first, but I hadn’t caught on what the random wave towards it meant.  I have to take off anything that includes metal – but luckily I dressed to avoid zippers, etc.  She tells me to lay down and put the ear plugs in.  Every time I put them in, she then asks me a question – so I have to take them out, only for her to be asking if I’m ready.

She sends me through into the narrow tunnel, before she stops and says ‘Are you arms touching the sides?  They are.  She seems concerned, which makes me concerned – but she says, ‘Oh, I’m sure it will be fine.  Just hit the emergency buzzer if you feel anything.’  She then leaves, and I’m wondering if I feel what?

A voice comes over the intercom to say they are starting, and I cannot move.  I’m completely tense – they haven’t given me more than a couple of seconds to try and relax out and get into a comfortable position, and it’s off before I can do so.  I then have to maintain the completely uncomfortable position – my muscles trembling and spasming, in my fear of moving and making them restart, therefore prolonging it.

I’m also worried about my arms.  The time before I had an MRI I just tried to daydream, but this time my focus is on where my arms are touching the top.  As the tube begins to warm naturally – as anyone would in a narrow tube, I worry about her definition of warm.   Does she mean any kind of warmth, or if I actually feel it start to burn?  I get hotter and hotter in there, probably as I panic.

I’m so glad when it’s finally over.  They drag me back to the MRI centre in the backwards wheelchair, and leave me to get back to the car.  Unfortunately I’m left feeling so dizzy, sick and in agony, I shuffle back to the car and almost collapse in.  I’m left in excruciating pain for the night, even after replacing the patch.

So, that was my experience of my second MRI.  I just hope it’s all worth it!

Next up: the results are in…


Some frustations with consultants

Some frustations with consultants

The first part of the story can be found here.  From 2008 onwards my mobility vastly decreased.   I swiftly went from sticks, to wheelchairs, to sometimes a few steps being too much.  The chiropractor I was seeing at the time advised she thought my facet discs may be getting worse, but wasn’t entirely sure.

By this point I had a diagnosis of Ehlers-Danlos Syndrome, was aware one of the issues is that it causes joints to degenerate a lot quicker than they should as they are hypermobile and moving out of place all the time, which then in turn causes them damage.  So it’s sensible to keep an eye on it, as you could technically end up crumbling away!

Last year I brought up this issue to my GP.  While I understood and generally accepted the condition, and the general levels of constant pain, I was worried about what was going on in my lower back which has been the worst pain I have for some time.  She agreed with me it was a valid concern, but said she did not have the authority to send me for an MRI unless it was for a surgical reason.  I pointed out that I was unsure if it was surgical until it was scanned, but as she could find no symptoms relating to a disc pressing on a nerve – which is not my worry anyway, there was nothing she could do.

Instead she wrote to my two EDS specialists.  One my specialists I really like – he listens in appointments, and makes lots of referrals.  The other one comes across as slightly dismissive, and mostly spend her time trying to get me to lessen my painkillers – which wasn’t going to happen, after finding my current regime the best I’ve had so far.  The problem with the first specialist is that he doesn’t seem to respond to GP letters.  I realise he’s busy, and should have retired years ago – but local doctors just don’t have the skills and knowledge to treat EDS most of the year, and we shouldn’t have to wait for a check up just to get a simple question answered.

The second specialist did come back, however – to say she felt the answer to my issue was exercise.  I have to say my letter back her from my GP and I wasn’t particularly polite.  Oh, exercise!  Silly us!  I’ve done all the bloody stretches and exercises they have given me, and it’s ten years later and my lower back is simply getting worse.  This is not an issue to simply dismiss as ‘have an exercise sheet.’  I have to say all my trust in her immediately evaporated at that response.

My GP then tried again to a local Pain Consultant.  I have to say I’ve never liked this pain consultant.  I saw him before I had a diagnosis, and he seemed to immediately take against me because I’d already tried the suggestions he normally makes to patients (acupuncture and a TENS machine…  Yep, that’s it.)  On my first appointment I asked him if he thought it may be Fibromyalgia, and he responded, “You can call it that if you like, but I don’t as it’s too American.”   On my second appointment he said I was on too many painkillers, and that I needed to come off one of the painkillers.  On my third appointment he said I wasn’t on enough painkillers, and upped my morphine dose.


But I still wasn’t expecting the response I got back from him that stated in black and white that to give me tests/injections into my spine would be “medicalising her condition, when she should be seeking psychiatric help” or something to that effect.  He also seemed to have forgotten I have a diagnosis Ehlers-Danlos Syndrome, and stated my condition was Chronic Pain Syndrome instead.

Luckily, my follow-up with the first specialist was due a few months later – and he agreed with me I should have an MRI, as we don’t exactly know what the issue is – whether it’s something that’s got worse, or something new.  The bad news is that they are transferring existing EDS patients from my preferred hospital of UCL London, to Stanmore – therefore losing him as my specialist, and making the other one my primary.

Two weeks ago my GP phoned to say now that my consultant has agreed in regards to the MRI, I can now go on the waiting list!  I wasn’t sure how long they were taking, and hadn’t heard anything when  couple of weeks ago I received a phone call from the MRI department asking if I was aware I had an appointment in a couple of hours, as I had yet to confirm it.  Um, no, I certainly did not.  I thanked her profusely for calling me, if she hadn’t I would have gone down as a Do Not Attend – and gone to the back of the waiting list at best, discharged at worst.

My Journey to an MRI and beyond

My Journey to an MRI and beyond

My path to a diagnosis was a long one.

My path to a diagnosis was a long one.

I seem to have had a few people in my life at the moment develop back issues.  In all, or at least almost all cases they seem to have gone to their doctor, been sent for an MRI, been diagnosed and sent for treatment.  That’s brilliant, exactly how the NHS should be.

That’s not how it’s been for me.  Sorry to bore those who’ve heard this before, but 10 years ago I started to get a strange pain in the joint between my neck and spine (that one that’s a little bump.)  It began to crack, and feel really stiff.  The pain spread into my shoulders and upper back.  It then went into my lower back – badly.  I began to not be able to stand as long as I used to, or sit comfortably.  I fidgeted constantly, and my joints all began to loudly crack all the time.  I didn’t know what the hell was wrong with me.  The first rheumatologist I saw said I’d grow out of it.  The second said it wasn’t arthritis, but didn’t know what it was.  The next said I had bad posture – ignoring the fact I was hunched over due to the pain.

In the years between 2002 and 2008, that pain spread into every joint, every muscle.  The fatigue was getting worse.  I could only walk for short periods of time.   I saw rheumatologist after rheumatologist, and two different pain consultants.  Each time I raised the possibility of an MRI, but it was dismissed.

I finally saw a third Pain consultant in 2008.  He was an asshole.  It was the first time I left a consultants room in tears.  He told me there was nothing wrong with me, and he said he would prove it by sending me for an MRI.

I was pissed off, but also pleased.   At least his bad attitude was getting me an MRI.   When I returned I saw yet another pain consultant who told me the MRI “showed nothing.”  I was very disappointed.  It’s very hard to be in constant pain and have no idea why.  You hope it does show something – because at least you know, and then you can look at possible treatment options.

I continued to see the spinal specialist physiotherapist at the hospital who was able to print a copy of the MRI off for me.   The same physiotherapist who said, “You are hypermobile as hell.  I can tell just by looking at you.”  She didn’t help me physically, but she tried – and helped point me in the right direction of my final diagnosis.

Unfortunately, despite having a copy of the MRI, I didn’t understand a word of it.   A few months later I sat, although I can’t say why it took me that long, I sat googled every single word of the MRI that ‘showed nothing’ and was surprised to find various disc bulges in my lower back and neck, quite bad facet disc degeneration and arthritis in my lower back.   So there was something.  It might not have been the worst MRI he’d seen, or not operable – but I believe I should have been told what it did say.

From 2008 my mobility continued to go downhill, first causing me to walk with a stick, and later needing a wheelchair more and more often.  My lower back continued to decline; at best feeling like someone was gripping into it, crushing and aching.  At it’s worse?  Well, there aren’t really words.   I was desperate to find out what was happening, but it took another four years to get that update.

Trying to Step onto the Spinal Pathway

Trying to Step onto the Spinal Pathway

This month makes it a year since I was finally diagnosed, and brings me up to nine and a half years since my symptoms began.

My lower back has been getting worse and worse, and I believe is the cause for me not being able to stand up long. I went to see my GP and said that I would like to have an updated MRI. My previous MRI in 2009 showed three or four slipped discs, facet degeneration and arthritis. And at that point I could be on my feet for about 15 minutes. I’m now down to under a minute (or so, depending on the day. Sometimes it’s far less, sometimes a bit more if I push myself and ignore the pain.)


My GP said she didn’t have the power to order an MRI unless I was having an operation or something.  She asked me when the last time I saw a spinal specialist was, and I said i hadn’t ever.  I’ve seen plenty of Rheumatologists and Pain Consultants, but that’s it.  She said there was an NHS scheme set up called the Spinal Pathway, and she rolled her eyes and said what a ridiculous name it was.  It was for people who had long-term back pain, who hadn’t been able to be helped by their GP.  They would assess me – probably by a physiotherapist, and then hopefully send me on for an MRI or to the consultant. Well, that was the plan.

To be honest, as soon as she said a physio was assessing me my heart sunk.  I don’t mean to be negative about a whole profession – I know there are good ones out there.  It’s just I personally haven’t had a beneficial relationship with one, and I’ve seen many.  A physiotherapist was the first person I was sent to when my neck pain started when I was 15. My experience with her was poor.  She strapped me up with one of those long brown rolls of plaster you would normally cut to the size of you wound, you know the ones? She cut two strips, long enough to make a massive cross on my back. Her theory was my problems were all due to posture, and when I didn’t sit up straight the plaster would pull and ‘remind me’.  After three hellish days, I’d had enough. You know that pain when you pull a plaster off your knee? You either ease it off and make it last longer, or be brave and rip it off.  Have you ever had to pull plasters off the length of your back?

I have seen senior physiotherapists, and junior. Spinal Scope ones, and Rheumatological experts.  All have given me similar exercise sheets, sometimes done a bit of ultrasound – then when I hadn’t improved in a few visits sent me away saying there is nothing more they can do.

So, when my GP says I need to see yet another physiotherapist in order to see a Spinal Specialist Consultant, I’m not particularly hopeful.  In the assessment with the Physio says he doesn’t think it’s that bad as the pain isn’t constant.  This isn’t true. I’m just told him it has been constant for nine and a half years.  He decides if it was disc problems, the pain would go down my legs.  I then ask him for an MRI as we’re not quite sure what the problem is, but he says an MRI should only back up what is found in a physical exam.  I fully admit I’m not a doctor – but I guess I just don’t see what looking at me tells him.  I then ask about the injections and he declares that I don’t seem to be screaming out in pain for them.  This pretty much guts me – who an earth can you possibly tell the amount of pain someone is in?  To be frank – I’m offended, and upset.

So I ask if I can see the consultant, and he responds that only 3% of people on the Pathway get to see the consultant. He then puts forward his plan of action.  Can you guess?


I’m going into Stanmore for three weeks in January which will include working with a physiotherapist, so I turned his kind offer down.  I think I’m going to submit a letter of complaint about his experience.  His whole attitude screamed dismissal from the moment I stepped in, and saying I wasn’t screaming out in pain so wasn’t going to offer treatment?  It just makes me want to cry.

On when to stop, and how to be patient

On when to stop, and how to be patient

My pain started when I was 10, and has been constant since I was 15.  I saw doctor after doctor and got nowhere.

Some said I’d grow out of it, others seemed to content to tell me it wasn’t arthritis, and send me on my way.

I just wanted to know what it was.  I needed to put a name and I pleaded with them for one, but was told they didn’t want to ‘label’ me.  I was in non-stop, agonising, soul-destroying pain.  I couldn’t go out with friends, I was exhausted and felt completely alone.  I thought knowing the name of my condition would make me feel like there were others out there just like me.  I didn’t see how it was a label – it was the name of my bloody condition, and I wanted to know what it was.

In 2005 I was told by a rheumatologist I’d grow out of it.  In 2008 I got really pissed off, and saw three consultants.  In March it was due to subluxation, in July Chronic Myofacial Pain and by August it was simply ‘mechanically related’.  What the hell did they mean?  They were wishy-washy nothingness!

I was at university one day, and was probably putting off writing an essay, when I put every single one of my symptoms into google and hit search.  A condition called Fibromyalgia popped up.

I read down the list and read everything I could about it.  It fit me!  Everything it said I could relate to.  The relief was – I can only describe it as immense.  I didn’t even register the bit at the bottom that said it was incurable.

I hit print and phoned my doctors, and made an appointment for that day.  It was a doctor I’d never seen before, as I’d fired my previous GP for using the unforgivable phrase.*

I remember the GP finally asking for my symptoms that day.  Do you know how rare that it?  Most get to pain and stop there, as if the hundreds of other crap that goes alone with it means nothing.  He nodded and said yes, it does sound like Fibromyalgia – but you need a clinical diagnosis and so sent me to a Pain Clinic, who still did not give me a diagnosis – but gave me nine facet injections in the facet joints of my neck, and muscles of my shoulder.

It took until January this year – eight years – until I finally ‘hit the jackpot’ by getting some decent doctors and some actual diagnoses.  I saw two specialists on the same day, one who diagnosed me with Fibromyalgia, and the other with Ehlers-Danlos Syndrome (and lots of related conditions).

So, I’ve completed the battle in getting the names, and it did help.  When people ask what’s wrong, I can tell them rather than shrug my shoulders.  I can meet people in the same boat and keep on top of research.

But where do I go from here?  My pain hasn’t improved, and in fact gets worse all the time.  My lower back seems have gone on the warpath to unbearable levels, and my McTimoney Chiropractor, who usually has magical powers in finding the culprit and sorting it out, even temporarily, hasn’t been able to touch the problem.

Credit to Dennis Taufenbach

Credit to Dennis Taufenbach


Do I keep battling on?  Do I keep asking to see new professors who I hear have helped others?  Before I got my diagnosis I was going to ask to see an Orthopaedic doctor to try and see if they could do anything with my lower back, but now I have been told I have Ehlers-Danlos Syndrome and Fibromyalgia, are they just going to shrug and say well you have those, what do you expect?  Or might they be able to do proper scans and sort out some of the pain?  I just don’t know.   I feel a bit lost, and am not sure where to turn.

I am on the waiting list for intensive in-patient treatment at the Royal Orthopaedic hospital in Stanmore, for pain management, but it’s still not looking into causes and fixing it.

I guess what kept me going was finding out what’s wrong with me, and now I do, I wonder if this is it?

* The unforgiveable phrase is ‘there isn’t a magic wand that can cure you.’  Did I ask for a magic wand?!  No!  Just a doctor that does their best to help.  That’s all.

Getting a Diagnosis

Getting a Diagnosis

Most suffers of a chronic illness will tell you how difficult it is to get a diagnosis.  The first difficulty is often the doctors, who simply may not know. So many conditions have overlapping symptoms and tests don’t always get to the root cause quickly. Often it takes a doctor that will look at the whole picture, not just run a blood test here and there. I recently heard of a woman whose local doctors wanted to take her thyroid out, believing it to be the cause of her issues. It took a consultant in London who finally ran the correct scans to find out the problem was with her heart, and could be corrected with medication – scans that could have easily been done previously.

Other doctors may be unwilling to commit to a name of condition – perhaps through fear of being incorrect, or other reasons. Some think giving a name of a condition is branding the patient with a ‘label’.

When you’re so unwell it’s impacting your life, the vast majority of people want to know why. They want a to find out what’s wrong with them so they can research their own condition, or join a support group, or simply so when people ask what is wrong with them, they don’t have to shrug and say ‘your guess is as good as mine’.

Woolly symptoms like ‘pain’, ‘fatigue’ (and I’m sure you can name a million of your own) are hard to explain to people, when you’ve cancelling a night out for the fourth time in a row, or taking more sick time from work, or even applying for benefits.  Everyone has those symptoms at times, and it’s hard to understand what it’s like when they become an every day occurrence, or never go away.  Or when the pain or fatigue become so crushing you can’t function.

Another problem with chronic illnesses is making sure you’ve got the right diagnosis. Due to the aforementioned intersecting symptoms, it can be hard to pin down exactly what’s wrong with you.

For example constant pain, fatigue and cognitive impairment could be down to a virus, or ME, Multiple Sclerosis, Sleep Apnoea, Hypothyroidism, Lyme Disease, Lupus, Fibromyalgia, Depression, the Flu, or something else entirely!

In an ideal world a doctor would come up with a list of everything it could be and then rule each one out with tests. But it isn’t an ideal world, and doctors are often constrained by time, budgets or equipment. Their personal prejudices may come into play. If someone who is slim presented those symptoms, they may take an entirely different approach to someone who is overweight. Many of my grandads’ ailments have been dismissed with ‘it’s your age, it happens to everyone’ and similarly doctors point at my weight as the problem – rather than seeing someone who has put on weight from being unable to exercise and comfort eating due to pain.

If perhaps I’d been listening to when I was ten years old and complained my limbs hurt, and my knees and ankles kept giving way, they would have discovered I was hypermobile, and given me the correct treatment to strengthen my joints. Then it may have been I wouldn’t have developed chronic pain and Fibromyalgia. Or perhaps I was destined for Fibromyalgia no matter how many stretches I had done as a child.  I don’t know.

It took me until the age of 23 until I finally saw a Consultant Rheumatologist who spent time thoroughly looking at my history and symptoms to diagnose me with Ehlers-Danlos Syndrome, Fibromyalgia, Myofascial Pain and Postural Orthostatic Tachycardia Syndrome.

I have seen so many other consultants who were dismissive, or shrugged their shoulders. One doctor even said I was Hypermobile, and then a year later forgot he had done so and declared I was fine without reading my history.

Finally, I’d like to point out that many people in England do not realise that they have the right to be seen at any NHS hospital in the country. You do not have to go to the nearest, or the one your GP decides to send you to. If you hear of department in a specific hospital that seems to do a better job than your own – you can choose to go there. You cannot demand you see a specific doctor, however, but you may request to do so. I’ve often found I can see the doctor I’d like by simply waiting longer.

Please keep fighting for your diagnosis if you think something is wrong.  Don’t give up.