I Had to Wait Until 50 to Get the ‘Verifiable’ Diagnosis

Many of us have struggled with finding our diagnosis. Our surveys indicate more than 50% have looked for > 20 years. This is a story of an EDSer  who finally found a “Name for the Pain”.

Symdroms of EDS

Symptoms of EDS

Written by essexcobs,

“Not only have I had to wait until 50 to get the ‘verifiable’ diagnosis, even after I am treated as if it is all in my head. And the difficulty in getting medical appliances and treatments sometimes takes all the energy I have.

I was double jointed as a child and did amazing party tricks for relatives. I went on to do ballet, and gymnastics, synchronised swimming – all the things someone with Ehlers-Danlos hypermobility should not be doing.  I have and had then, natural turnout (probably the same instability I have then or maybe dysplasia).

I also used to have terrible stomach cramps that would make me double over, I now know that it was IBS. But growing up I really didn’t notice any issues as the Hypermobility was a bonus to my dancing.

At the age of 27, I had my first medical problem, carpal tunnel syndrome which made me have to stop being an executive secretary .

My first pregnancy was fine and my daughter is now 26 also with EDS hypermobility. The subsequent pregnancies ended in stillbirths, with placenta praevia, placenta insufficiency (small for dates), and just before they died – placenta infarctions.

I also told the GP about  right hip pain in 1990, with no evidence of arthritis on the x.ray, when I was 30 that I still have to this day.

After that I restarted horse riding, competing at cross country, dressage and showing. That’s when the problems with my joints really came on. Tendon and muscle strains, sprains, problems with my wrists, shoulders, hips and ankles. I had regular private sports physiotherapy to strap me up, release the hard knots (release), sublaxation corrections, and ultra sound therapy for my injuries. That physiotherapist enabled me to ride until the pain and spasms became too much at the age of 48. Since then,

In 2004 at the Royal Free (private), Dame Professor Black diagnosed hypermobility but the GP’s ignored her diagnosis. I even went to a NHS rheumotologist who claimed – I have NO connective tissue disorder as the previous diagnosis from Dame Black was overlooked.

It took a further 6 years at the age of 49 to finally get the official diagnosis at UCH. The hypermobility department decided that they could not rehabilitate me because my overriding problems were that of neuromuscular problems – fasciculations, numbness, after exercise and any physical activites and goes from foot all the way up to the lower back.

I have tried to get help from NHS physiotherapists but with the exception of two I have been more than disappointed to the point of being extremely upset. They labelled me as faking it, that I did not need crutches (NHS hypermobility physio prescribed them), and my balance was fine despite me falling on a weekly basis.

Even my GP when asked if she had read up on EDS said no, but treats me like it is all in my mind. So I don’t even want to see her after my falls, or sublaxed joints that remain out of position for long periods. I asked another GP about the GP practice’s attitude asking:

1′ How can I fake degenerative spinal disease and spondylosis’ – he said ‘you can’ whereby I responded what with an MRI?’, he said, ‘well maybe not’.

2 ‘How can I fake ulnar neuropathy?’, again he said ‘you can’, and I responded ‘what with nerve conduction tests’. and again his response was ‘well maybe not’

3. ‘How can I fake Ehlers-Danlos hypermobility? Should a 52 year old woman be able to place her wrists down flat on the floor, and be able to pull her legs so that knees touch the nose?’ , at this point he got my gist responding ‘uh, no you should not be able to do that’

I just saw Prof Hanna, a neuromuscular v. senior consultant, at the National Hospital for Neurology and told him about the physiotherapists attitude and my GP’s perspective of me. I asked him outright ‘Do you think I am faking’, and Prof Hanna said emphatically, ‘NO I don’t think you are’. And he explained that EDS is a rare disease and that the majority of the medical establishment are not aware of it nor it’s manifestations. He suggested joining the EDS national group for support. What a relief to have him believe in me and my medical issues as ‘REAL’.

I also have the support and care of a wonderful orthapaepedic surgeon at my local hospital who has done one shoulder, and is now considering the left shoulder and the decompression of my hand at the same time. Quite possibly I will eventually also need decompression and moving of the ulnar nerve to retain some use of my hands.
I’ve also just been referred to a terrific senior orthapaedic device specialist who is making custom orthotics, better ankle splints, and more comfortable ankle and foot night resting splints, And I will push through the GP to have him get me comfortable night resting splints for my hands too.

All I can say – is it takes an enormous amount of perseverance and patience to be taken seriously and the issues to be addressed.

I am very sorry to say, that having become increasingly disabled my marriage disintegrated after 26 years. And my daughter is not understanding, and rarely helpful.”

EDS is not a rare disease …. just a rarely, correctly diagnosed disorder!   

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

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