I'm a terrible mover!

Apparently I'm a terrible mover.  Normally I'd take something like that as an insult but the comment was made my an expert physiotherapist and she is going to help me get better control over my muscles.  Yay!

Yesterday I went to Northern General Hospital in Sheffield to see Mr Stanley.  It was the shortest consultation I've ever had.  I walked in the room shook his hand, he said very nice to meet you but you need to see my physiotherapist and he asked me to go back to the waiting room.

It wasn't a wasted journey, I saw his physio and it was a very worthwhile consultation.  She gave me a proper examination and declared that my joints were very lax, my posture was awful and my control is poor because I am using momentum to move.  It's going to take a lot of work but hopefully I can make some progress.  I had an x-ray of my shoulders just to rule out any anatomical reason for my problems but thankfully my bones are fine, it's just the soft tissues that are rubbish.

It was interesting discussing the things I've been told in the past.  Two years ago I was diagnosed with shoulder impingement, the physio told me it is always down to lax joints in people under 40 (I was 36).  I had also previous been told to do stretching exercises but she said they weren't going to do me any good.

I'm very grateful I've found someone who can finally help me.  She asked where I'd like to be in two months time.  I said I'd like my condition to be more stable because at the moment I'm constantly battling something or other and I just can't carry on like this.

I'm still suffering with a very sore throat and dry mouth.  The spray helps a little but I just feel completely dehydrated despite drinking four litres of water a day.  I've been getting headaches and sinus pain too and my tooth still feels rubbery when I bite on it.  I don't think this problem is going to go away any time soon but I have to wait another three weeks before I see an ENT.

I have been Googling my symptoms again and asking on forums.  The top possible answers seem to be Sjogren's Syndrome and Sarcoidosis.  Unfortunately they are both difficult to diagnose and treat so I hope it's not that.

I do get very frustrated that I am left to research my own health problems and diagnose myself.  If I had not directly suggested POTS and JHS to my doctors I would still be suffering under a vague diagnosis of ME/CFS and not receiving the treatment I need.  At least now I seem to he heading in the right direction.

Merry-go-round

I feel like I'm stuck on a medical merry-go-round and I want to get off!

Yesterday the GP told me to see my dentist about my very sore, dry mouth and throat.

Today I went to see my dentist and he told me to see my doctor.

*HEADDESK*


My dentist was very helpful, noted that I had a bone dry mouth and swollen glands and recommended two treatments, Glandosane (artificial saliva) and Augmentin (an antibiotic) which unfortunately as a dentist he was unable to prescribe.

I went straight up to my GP surgery and was very lucky to get in to see the same doctor I saw yesterday.  She prescribed the drugs and is sending me for blood tests to check for inflammation and check that my iron and B12 levels are OK. I also have an appointment to see an ENT, but I have to wait four weeks for that.

The artificial saliva has helped already, I just hope the antibiotics work because I'd fed up of being ill like this.  I want to live my life, not just sit around waiting for get better, only for something else to knock me flat again :(

When symptoms collide

I'm not having such a fun time at the moment.  A couple of weeks ago one of my molars started to feel sore and rubbery when I chewed on anything.  That tooth has given me so much trouble over the years, numerous fillings, root canal and last year a very expensive crown.  

I went to see my dentist who said my root canal was having a spat, probably because I was run down after the cold I had at Christmas.  one course of Amoxicilin later and it was no better so I went back and was given more antibiotics.

All medications have their side effects, I'm usually OK on Amoxicilin but this time it gave me a very dry mouth and I developed lots of ulcers on the back of my throat and tongue.  I cope with it, dabbing Bonjela on the ulcers when they got really sore but unfortunately it has caused more damage than I realised.

Back in October my head and neck pain was flaring badly.  I could barely function but I ploughed on anyway.  I sat down with a cup of coffee and a biscuit but I had trouble swallowing, I started coughing and choking, I couldn't catch my breath.  I phoned NHS 111 and they sent the paramedics.  They said my oxygen saturation was good and asked me about my medical history, that's when one paramedic started questioning my apparent medical knowledge and asked me if I diagnosed myself a lot...  Yeah, they thought I was a hypochondriac seeking attention.  If only!

My GP phoned and told the paramedics to take me to hospital for "reassurance".  I'm not sure what reassurance you can give someone who feels like they are being strangled every time they swallow but that's what happened.

I waited for an hour to be triaged, I was left in a very uncomfortable transport wheelchair and I was in agony.  Another person in the waiting room fetched the nurse for me because they were worried about me.  I was triaged and allowed to take my regular medication (which was an hour late) and then I saw the doctor.  He made me explain my entire medical history.  He glanced at the back of my throat with a torch, told me it was a muscle and that I should stop taking so many painkillers and do some more exercise.

WHAT?

Yeah, I wasn't exactly happy.  I was 8/10 in pain but they wouldn't give me anything because I was already on oral morphine for the pain.  The fact that I hadn't taken any because I didn't have a medicine spoon was beside the point.  Apparently they couldn't give me anything stronger and they asked how I was getting home.

I was just as ill as when I arrived at hospital, I was physically and mentally distressed, they had offered no explanation or treatment and they were sending me home?  I told the doctor I wasn't happy and that I wanted to complain.  Then sent in the head of A&E who explained they don't diagnose chronic problems in A&E.  As there was nothing blocking my throat and I could swallow sips of water there was nothing they could do so I was discharged, sobbing my heart out, choking every time I swallowed my own saliva.

I felt lost and alone, I was in so much pain and it took all my energy not to have a panic attack because every time I swallowed it was as if someone had their hands around my throat, throttling me.  

I called a GP out the next day and was given Ompeprazole because she thought the problem could be reflux.  I took it twice a day but it cause diarrhoea and depression.  It didn't really help. 

I couldn't eat properly for 3 days, I lost 5lbs in weight and I was very poorly but I had no-one to turn to for help.  The pain in the back of my head and neck was so severe not even morphine was touching it but all my GP could do was tell me to wait for my Stanmore appointment in five months time.  Yes, I was expected to wait with 9/10 level of pain for five months.

I complained about both my GP and A&E.  A month later I got their responses.  They did everything they could and they were sorry I wasn't happy with that.  They didn't diagnose or treat me, they left me in severe pain and physical and mental distress, but they did everything they could?  

B***S***!

Thankfully paying to see Dr Hakim explained the neck pain (severe muscle spasms) and he prescribed Diazepam which is very helpful, but I never got any answers about my swallowing issues, and now it's come back again.

If I eat anything that is dry or textured it gets stuck in my throat and I can't swallow it.  I can just about manage oxtail soup, tinned peaches and creme caramel, which doesn't exactly constitute a varied diet but at least I'm not starving.  Even eating this things causes discomfort and I'm struggling to drink enough water.  My mouth is sticky, my lips are chapped but I feel like there is a brick in my stomach and a lump in my throat.  

I did some research on the internet and discovered something called LPR - Laryngopharyngeal Reflux.  Reflux is common in people with JHS but I don't get heartburn very often so I didn't think I had a problem with it.  It turns out that I have many symptoms of LPR which include difficulty swallowing, globus (that's feeling of a lump in your throat) chronic cough, sore throat, post nasal drip and the feeling of something stuck in your throat.

If I could find this out in a few minutes on Google, why couldn't the doctors?

The bad news is if I do have LPR it is difficult to treat.  Advice is to avoid coffee, chocolate, alcohol, fried, spicy and fatty foods - yeah, everything that is nice! I am going to see a doctor about it today and I'll see what happens.  I need to do something, I am so weak I can barely look after myself, I've been having chills and sweats, my mouth and throat are painfully dry despite taking constant sips of water, my POTS symptoms are flaring up because I'm dehydrated, my sleep has been very disturbed and I basically feel very rubbish.

I need to turn things around quickly.  It's my son's birthday party on Saturday and both of our birthdays next week plus it's my father in laws birthday too and we're having a big family party.  I don't want to disappoint anyone but I know I have to look after myself.  Let's hope the doctor can give me some advice and not just fob me off again...  Oh yeah and I have to phone the dentist for something else for my infected tooth.  The fun never ends!

NHS Bureaucracy gone bonkers

I know most of my blog posts sound like a rant against the NHS.  Don't get me wrong, I am very grateful that we get free medical care here in the UK but as the saying goes, you get what you pay for.

I was diagnosed with Joint Hypermobility Syndrome by Dr Hakim on 14th November 2013.  I paid privately for the consultation.  A couple of weeks later he wrote to my GP detailing the consultation, my diagnosis and most importantly a treatment plan.  He said I needed 12-18 months physio on everything from my lower back down to my feet.  His physiotherapist at the Hypermobility Unit had recommended an NHS physio who worked at Northern General Hospital in Sheffield.

On 5th December I saw my GP and she agreed to refer me to the physio at Northern General.  I was very happy and hoped I wouldn't have to wait too long for an appointment.  Yeah, sometimes I am a hopeless optimist, but you have to think positive...

Last week I telephoned the Northern General to find out what was happening.  They said they had no record of me on their system.  I was passed onto to someone else who explained that physiotherapy don't accept GP referrals and the letter had probably been passed on to Mr Stanley.  I was told I should hear something later in the week.

Today I got a letter from Northern General.  It's an appointment to see Mr Stanley, who is apparently an orthopaedic surgeon.  I guess I should be pleased but I can't help but feel annoyed because I don't need to see an orthopaedic surgeon.  I have my diagnosis and I have a treatment plan.  I need to see someone who can carry out the treatment plan.  That person is a physiotherapist, not an orthopaedic surgeon.

It seems ridiculous that the NHS are sending me to see a consultant just so I can access physio.  It's a waste of NHS time and money, and it's a waste of my time too.

With mindless bureaucracy and poor organisation no wonder the NHS is struggling.  I keep thinking of all the people desperately waiting for a orthopaedic consultation when I'm getting one and I don't even need it!  It's stupid but what can I do?

All I can do is use up another day of my husband's holidays, get my mum to babysit the children and go to Sheffield for an appointment I don't need to hopefully get on the waiting list for an appointment I do need.

Tried to make me go to rehab... and I said yes!

A little positive thinking can go a long way.

I'm pleased to report my appointment in London was  a success.  The journey wasn't too bad, we made it to the hospital on time and I got to see Dr Mittal who was very nice.  We went over the basics, she had a look at me, agreed with my JHS/EDS diagnosis and she asked me if I wanted to go to rehab.  I said yes!

There is a three week inpatient rehabilitation course at the Royal National Orthopaedic Hospital at Stanmore and I've heard great things about it.  They deal with every aspect of the condition and basically teach you the skills to cope with it.  Dr Mittal thought it would be a good idea, as did Dr Sobey at the EDS Service and Dr Hakim at St John and St Elizabeth's so I said I'd like to go please.

I will have to wait (yes more waiting!) 6-8 weeks for an assessment and then it is is likely to be another six months before I can actually go on the course, but it will be worth the wait :)

During the consultation Dr Mittal kept asking me the same question.  "If you've had these symptoms since you were a teenager, why were you only diagnosed last year?"

It's a very good question and there is only one reason I can think of.  For over twenty years I have been discriminated against because of my diagnosis of ME (Myalgic Encephalomyelitis).  When I was 15 I was diagnosed with ME and the doctor said it wasn't the worst case he'd seen but that's what I probably had.  Since then every doctor has accepted it as my diagnosis and never had the inclination to question or challenge it.  Every new symptoms was blamed on ME and because the illness is poorly understood, often presumed to be psychological and there are no treatments for it, I was always sent on my way without help.  It was only because of my own personal research that I actually got the right diagnosis.

It was obvious to Dr Mittal what was wrong with me because she has been taught all about it.  Her knowledge is current and she is experienced with JHS patients.  My GP on the other hand didn't know anything about it.  My last rheumatologist called it BENIGN Joint Hypermobility (meaning it doesn't kill rather than it does no harm) and he told me the treatment was the same as for Fibroymyalgia, which is completely wrong!  It makes me wonder how many other people are misdiagnosed with ME or Fibromyalgia who actually have JHS?

Dr Mittal didn't want to change my medication and she couldn't give me any answers as to what else is wrong with me but she did diagnose me with carpal tunnel.  I was given some wrist splints to wear at night and is writing to my GP to ask her to refer me for nerve conduction tests.  The thing is, and I know I'll sound very arrogant for saying this, but I think Dr Mittal is wrong.

I've been having numbness in my ring finger and little finger on both hands for about a year now.  I have mentioned it several times to my GP but she just dismissed it saying "Oh, I get that!" and refused to discuss it further.  I wondered if I had carpal tunnel so I looked it up on the internet.  It does cause numbness and tingling but affects the thumb, index and middle fingers, NOT the little finger and ring finger.

In carpal tunnel the median nerve is compressed at the wrist, but there is another nerve that goes to the ring and little finger, the ulnar nerve.  If this nerve is compressed at the elbow then it causes cubital tunnel and all the symptoms I get.

If I sleep with my arms above my head or tucked under my pillow I wake up with dead hands, when I talk on the telephone for more than a few minutes my fingers and hand go number, when I spend too long holding a computer mouse my fingers go dead and when the symptoms are bad I tend to drop things because my grip is reduced and I can't hold them tight enough.

Now, I'm not a doctor, but it seems simple enough to me.  It's entirely possible I have carpal tunnel as well but I think cubital tunnel is a better fit for my symptoms.  I'm not sure how I'm going to get that one past my GP.  I'm not exactly her favourite person after I made a complaint about the total lack of care and misdiagnosis.

I don't want to have to go through testing for carpal tunnel if I don't have it because it will delay treatment for what I think I do have, but it's difficult trying to put forward an alternative diagnosis when you're not a medical professional.  When you start a sentence with "I read on the internet that..." you're guaranteed get eye rolling and a dismissive attitude because everything on the internet is rubbish and written by crazy people, right?

Anyway, I'm pleased about how the appointment went.  I didn't get everything I wanted but at least I'm on the waiting list for Stanmore now, which is a massive step in the right direction.

Pre-appointment panic :S

I'm having a little pre-appointment panic about going to Stanmore.  I got my appointment letter in the post today (big thumbs up for the very efficient appointments department!) but there is a teeny problem.  It's not at Stanmore.

When the lady phoned me with the cancellation appointment she said she was from Stanmore, so I presumed she meant the Royal National Orthopaedic Hospital at Stanmore, Middlesex.  My husband booked us into a hotel in Edgeware so we could travel down the night before.  It's a 3 hour drive and my appointment is at 9:30 am.  Then the letter arrived this afternoon and the appointment address is the Outpatient Assessment Centre, Bolsover Street, London.  That's half an hour away by car or an hour by tube or bus, probably more in rush hour traffic.  Eeek!

If I'd have known the appointment was in central London I could have caught the early train to Kings Cross but we already booked the non-refundable cheap rates hotel so it was too late to change our plans.  Travelling in London is stressful at the best of times but I'm disabled so we have the added complication of finding wheelchair accessible transport, at rush hour, on a Monday morning :S

I'm also concerned about who I will see.  When I saw Dr Sobey at the EDS Service in Sheffield she said Dr Cohen was just about the only doctor in the country who had the experience to diagnose me because I have the symptoms of JHS/EDS-HM plus other symptoms suggestive of an autoimmune disorder.  Yeah, aren't I lucky!

My GP surgery asked for me to be seen by Dr Cohen and when I saw Dr Hakim at his private clinic he forwarded a copy of his letter to Dr Cohen as he agreed she may be able to fill in the blanks in my puzzling medical history.

So everyone wanted me to see Dr Cohen, so guess who I'm going to see?  Dr Mittal.  And the letter said I may see a registrar instead of Dr Mittal.

My experience with registrars has not always been good.  I'm trying to stay positive but I have a nagging doubt that this will be a massive waste of time and I'll have to wait even longer to go back and see the right person.

Wish me luck!

It's a full time job being chronically ill

As if it's not enough coping with pain, fatigue and other debilitating symptoms, managing a chronic illness is a full time job!  Arranging appointments and transport, ordering prescriptions and chasing up test results, it takes a lot of time and energy, both of which are in short supply if you're unwell.

This week I've been chasing medical appointments.  It's been two months since Neurosciences at the Hallamshire wrote to tell me they'd make an appointment "in due course" so I called them to see what was happening.  a very nice lady told me I had been graded and sent to a local hospital, Rotherham or Doncaster, she didn't know which.

I wasn't happy but we worked things out.  She would telephone my GP surgery and get them to re-send the referral and also send the letter from Dr Hakim with my new diagnosis of Joint Hypermobility Syndrome.  Then I would be put on the list to be seen at the Hallamshire.  The only bad news is I would still have to wait another four months to see somebody.

I thought it was sorted until the nice lady phoned me back.  The GP surgery claimed they did not have a letter from Dr Hakim.  Now my GP surgery is notorious for losing important pieces of paper but I know for a fact that they did have it because I saw my GP holding the letter at my last appointment.  So the nice lady told me I would have to take my own copy of the letter to my appointment to tell the doctor my new diagnosis.

Call me picky but wouldn't it be helpful if my GP surgery had done something useful with an important letter like a diagnosis from a consultant, like put it in my file or scan it on the computer system?

Wouldn't it be useful if the neurology department knew all my current information before deciding who I should see and when I should be seen?

Apparently not!

I did have some good news though.  I'm going to Stanmore on Monday!  Woo hoo!  They phoned me with a cancellation appointment.  I won't be seeing Dr Cohen but hopefully her colleague will be able to help me and at least put me on the waiting list for rehab.

And if I hadn't had enough of appointments I had to go to the dentist today.  I'm not on antibiotics because my root canal is flaring up.  If it's not one thing it's another!

Impatient Patient

I am an impatient person.  I do not like waiting.  I hate waiting, but being a patient means I have to be, well, patient.

I know some things take time,  you can't grow a tree from seed overnight, but I get irked when things take longer than they really should.  One of the things I get particularly frustrated about is communication between medical establishments.  We might be living in an era where you can send gigabytes of data to the other side of the world in a matter of seconds but the NHS seem to be stuck in the stone age.

The POTS clinic in Sheffield asked my GP to send them my urine test results.  How long do you think it took them to send the letter?

A week?

Two weeks?

A month?

All they had to do was write a letter to say that Mrs Zebra's sodium level is xxx.  It's not brain surgery.

It took six months.  Yes, six months.  My treatment was delayed by six months because the result was filed under the wrong heading and the GP surgery didn't bother to reply to the clinic's requests.  It only got sent at all because I chased it up and a receptionist discovered the mistake when I insisted that they DID have the results because the had already told me what they were!  They had actually given me the wrong number but they did have the results.

OK, mistakes are made, letters get lost, things get overlooked.  It was probably an isolated case, only it wasn't.

The POTS clinic referred me to the EDS Service in Sheffield.  I waited but didn't receive an appointment.  I don't know what exactly happened but I had to wait nine months for an appointment, then it was cancelled the day before and I had to wait another two weeks.

When I was finally seen I was deemed to complicated to be diagnosed by the EDS Service (which was set up to deal with complicated cases) and the consultant wrote to my GP asking me to be referred to a doctor at the Royal National Orthopaedic Hospital at Stanmore.  It took a couple of weeks for the letter to reach my GP and another week for me to get an appointment with my GP to talk about it.  Unfortunately the consultant at Stanmore had no appointments available on the Choose and Book system so they wrote a letter to ask if she would see me.

I waited four weeks but didn't hear anything so I telephoned the consultant's secretary only to be told that they were not making appointments at this time and there was a 22 weeks plus waiting list.  I'm still waiting for an appointment.

The doctor at the EDS Service recommended that I go on the Stanmore inpatient rehab programme.  I had heard very positive things about it and I was keen to go.  I read the JHS and EDS forums regularly and was very disappointment to discover that the programme had closed to new referrals due to exceptional demand and when it reopens there would be a 56 week waiting list.  Ironic really because EDS is so very rare...

It's not easy waiting, especially when you need treatment for a condition that causes daily pain and is difficult to cope with.

Last May when I developed severe and very painful muscle spasms in my neck I was referred to phsyio.  The local clinic were not experienced enough to deal with a zebra like me so they passed me onto the local hospital.  The hospital wrote to me with an appointment and then telephoned me to cancel it as I needed to see a rheumatology physio, not just an ordinary physio.  They said they would make me a new appointment with the right person.  I waited four weeks but heard nothing so I phoned them up.  There was no record of me being passed onto the rheumatology physio.  I was waiting for an appointment that was never going to be made.  It's a good job I'm impatient otherwise I'd still be waiting!

Unfortunately the physio couldn't help me, she didn't even examine my neck, she just gave me vague advice about fitness and offered hydrotherapy.  The problem got worse until the pain was unbearable and I lost sensation in my hands.  I was put on morphine but it didn't help much.  My GP was at a loss and all I could do was wait for my appointment at Stanmore, if it ever came.

I had an MRI but it was 'normal' and I begged my GP for a referral to neurology.  She wrote to the Royal Hallamshire in Sheffield asking someone to see me.  I received a letter in November informing me they had received my referral and they would contact me with an appointment in due course.  It's been two months and I'm still waiting.

So I had a few bad experiences.  Unfortunately they are not isolated cases.  No-one likes to wait but waiting while you are ill and in pain it's even more difficult.  It can also be expensive.  In 2009 I was admitted to hospital with severe joint pain and I was diagnosed with Reactive Arthritis.  The consultant prescribed a steroid injection, which I was to have before being discharged home.

The steroid injection was ordered, it was in stock at the hospital pharmacy, it just needed someone to deliver it to the ward and a nurse to administer it.  Simple, yes?  No.  The injection didn't come to the ward with the pharmacy delivery and the pharmacy had closed so no-one else could go and get it.

The nurse explained I would have to spend another night in hospital, away from my young family.  I was devastated.  I was all ready to go home and I had to spend another night on the ward, taking up a bed I didn't need at unnecessary cost to the NHS.

That wasn't the only thing.  The nurse told me even if the injection had arrived with the delivery, she couldn't have given it to me because the doctor hadn't signed it off properly on the computer.  Oh the irony!

My experiences have been very frustrating but thankfully the rest of the world is a little more efficient.

I didn't fancy waiting 22 weeks for a diagnosis on the NHS so I went private.  My parents kindly offered to pay the fees and I telephoned The Hypermobility Unit at St John and St Elizabeth's in London for an appointment.  Professor Grahame, the UK's leading expert, was booked up for the next few weeks but I could see another highly respected doctor, Dr Hakim.  How long would I have to wait?

Six days.

It was the best medical consultation I have ever had.  I was treated with respect and I was listened to.  Dr Hakim explained everything in a way that I could understand, I was diagnosed with Joint Hypermobility Syndrome, I was prescribed medication for the muscle spasms in my neck and the doctor said he would consult his colleagues and find me a physiotherapist to help improve and manage my condition.

Hallelujah!

I wish I'd done it sooner.  I could have saved myself six months of severe pain and suffering all for the price of £300.

I still want to see the consultant at Stanmore, my condition is complicated and she might be able to fit the final pieces of the jigsaw together.  Unfortunately she doesn't have a private clinic so I guess I'll just have to wait...

My story

My name is Clair and I'm a zebra.

I've been chronically ill since my early teens.  I was a relatively healthy child, I did well at school and enjoyed doing dance classes but when I hit puberty things started to change.

When I was 13 my mum took me to the doctors because I felt unwell.  I was exhausted and achy but didn't have any specific symptoms.  They tested me for Glandular Fever (mononucleosis) but the results were negative.  The GP put it down to puberty taking the 'spunk' out of me.

I never really got better.  At 14 I had a severe chest and sinus infection that caused a high fever, severe head and neck pain and hallucinations.  A few weeks later I told my mum I couldn't go to school because I had the flu and my knees hurt.  It was July and I hadn't suffered any falls or injuries.

I had recurrent tonsilitis when I was 15, I had achillies tendonitis twice and I became very run down with boils in my arm pits and bottom.  I felt ill all the time, I fell asleep as soon as I got home from school and it was obvious something wasn't right so my mum took me to the doctors.

I was diagnosed with Post Viral Debility and told that sometimes it takes people longer than usual to recover from viral infections, but I didn't get any better.  I went to see a neurologist who said I probably had ME.  That diagnosis stuck with me for 23 years.  No-one ever dared challenge it and as there was no treatment for it I was left to manage my symptoms on my own.

Through the years I got progressively worse.  I suffered with joint pain in my ankles, knees, hips, wrists, elbows and shoulders but the doctors could find nothing wrong.  My blood tests were all 'normal' and my x-rays were clear.  I became physically disabled, the pain in my knees and hips made it difficult to walk and I had to start using a wheelchair outdoors.  I was unable to complete my education and I was never well enough to look for work.

I suffered at the hands of doctors who didn't understand.  They thought my symptoms were all in my head but I had no psychological problems.  They thought it was due to inactivity but every time I increased my activity my symptoms would get worse.  I had severe flare ups that left me bed bound, I got so ill I was admitted to hospital as I could not stand or care for myself.  I struggled with normal activities but had to fight to get support from social services.

I felt like a medical hot potato.  No-one wanted to see me, never mind treat me.  My GP told me to give up looking for answers.  Then by accident I found out what was wrong with me.  My children all suffer from growing pains, as I did as a child.  I Googled to see if there was anything I could to help them and I came across the diagnostic criteria for Joint Hypermobility Syndrome.  It was like a lightbulb moment.  This is what was wrong with me!

I went to my GP armed with fact sheets to ask if I had JHS.  She told me she didn't know anything about it and to ask my rheumatologist.

My rheumatologist told me I had Fibromyalgia.  He gave me a leaflet which described people with hypersensitivty to pain, insomnia and depression - the exact opposite of me!  I questioned the diagnosis.  I'd already tried the treatments (tricyclic antidepressants, exercise and Gabapentin) and they made me worse.  the rheumatologist insisted I had Fibromyalgia.

I asked him about JHS again.  He examined me, told me I wasn't hypermobile but he was amazed that I could put my hands flat on the floor, especially considering I'd just got off my mobility scooter and hobbled across the room with my walking stick.  He wouldn't give me a straight answer and referred me to a physio.  She didn't think I had a connective tissue disorder and just gave me an exercise to strengthen my elbow, so I came to a dead end.

I don't give up easily.  I thought Joint Hypermobility Syndrome was a real possibility so I read everything I could about it and I made a private appointment with Dr Hakim at St John and St Elizabeth's Hospital.  Dr Hakim was brilliant.  He listened to my concerns, he explained things in a way I could understand.  He examined me, gave me a diagnosis of Joint Hypermobility Syndrome and best of all, he wrote up a treatment plan.

I finally found my identity.  I was a zebra.  A medical rarity.  Doctors are taught "When you hear hoofbeats, think of horses not zebras" but that doesn't mean zebras don't exist.  The more I read the more I began to realise that zebras aren't as rare as the medical profession think.  There are many other people like me who are misdiagnosed with other conditions such as ME, Chronic Fatigue Syndrome, Fibromyalgia and psychological disorders.  

In this blog I hope to share my thoughts and experiences.  I'm not qualified medical professional and I can't give medical advice but hopefully I can provide some food for thought.