I feel terribly depressed. I complained about my visit to the Genetic medicine Unit regarding EDS and today after complaining I was offered an appointment with a consultant. He said I do not have EDS as I don't meet criteria ie not hypermobile. He said I have a collection of symptoms 'probably maybe' connective tissue disorder. Maybe probably who knows one day in America there may be research to help OTHERS.
I feel totally without hope. My health is so bad I won't last much longer. I would like my epitaph to be I wasn't a hypercondriac.
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Hi. Firstly I want to let you know that your terrible experience is unfortunately an experience most of us with unrecognised conditions go through, so you are definately not alone in this. Nearly all of us have felt let down and abandoned by the medical profession during our health journey.
I went for many, many years back and fourth to different doctors and so-called specialists who all judged me wrongly, just because, like you, I was desperate for answers and a way forward to save myself from deteriorating health.
I was brushed off time and again by Doctors and It had a very negative impact on my well being and mental health. I retreated often from trying to be better and gave up on my search for answers many times. I also wanted my epitaph to read the same as yours.
But because I instinctively knew I had 'something real wrong with me' I knew I owed it to myself to find the truth. So I carried on, determined to get a correct diagnosis. I knew no Doctor cared about my health or my life as much as me, so I had to keep strong and carry on for my own sake and my sons.. I owed it to myself and so do you!!.
I know just how hard your journey is, we all know, so please reach out on here for support.. The help and support I received on here helped me immensely, it was the driving force which steered me to mine and my sons diagnosis'
Even after a diagnosis life still needs to be negotiated as symptoms need managing or controlling... For me, having the answers as to why the things were happening to me was a huge relief..
I now feel better equipped to deal with my health problems even though I seriously struggle physically and have numerous symptoms affecting my daily living, and I also suffer with anxiety and have episodes of depression. But Knowing what I am dealing with has helped me to understand, accept, and manage my conditions...
Having a diagnosis has also enabled me to educate the Doctors whose knowledge is lacking, and then get the medical interventions needed for my son and I, but it is not always readily available here on the nhs so it still isn't easy. Help and support can be hard to come by, and I find the greatest support comes from those who understand first hand what this is like.
I sincerely hope you will regain the strength to push on again and get your answers. You deserve the best life you can have.. Best wishes xx
That was really helpful and supportive. Thank you. I was lying in bed with terrible stomach problems feeling sick and excruiting headache which wakes me early after only a couple of hours sleep. I was feeling like I can't go on and couldn't face going to Dr's to get in a queue just to make an appointment as can't get through on phone.
I'm so very depressed and isolated. I don't get any kind of help. There was really good inspiring stuff here. I will probably re read to help me carry on.
It has really helped. I got sick of being treated as a liar. The Dr even said 'give the NHS a break' becaue of my frequent visits. Thank You.
I'm glad to have been able to help you in some small way. I know all too well just what you are going through, Its so hard, and some Doctors disgusting attitudes make it even harder which just shouldn't be allowed to happen. But you can take some comfort in knowing that you are not alone, sadly we have nearly all dealt with it, but we found a way forward. We are here to support you❤
Thankfully EDS knowledge is becoming more wide spread among medics as EDS specialists and patients are educating. It will get better🤞👍 The Royal college of GP's tookit was put together by a GP who has EDS. It mainly explains about hypermobile EDS, how GP's can recognise the signs, the symptoms, and comorbidities'. When it became available, after my diagnosis, I told my Doctors about it and had it added to my record's. They now refer to it when I attend with a related symptom/condition. It alone has helped me to be understood and feel validated, and made it easier to get the referrals I need. rcgp.org.uk/eds
prior to mine and my sons hEDS diagnosis I had to do a lot of research by myself to put the pieces together, before finally initiating an appointment - with the help and support i received on here- to see the specialist who was able to correctly diagnose the symptoms, and also steer me to getting other conditions diagnosed and treated/ managed. This is ongoing...
It is a life long journey with EDS and can be with any chronic complex condition with a multitude of symptoms. It is often/ or always a challenge, but it is totally possible to keep going when you find what works for you. There is always hope. Stay connected to the best support, discard what isn't helping and avoid that which has a negative affect.. Very best wishes💌 xxx
This was the Genetic medicne clinic at St Marys Manchester. My doctor sent e there last year. They saw me for less than 10 mins then discharged me with no examination. I complained and saw another doctor after I complained about how I wasn't sen properly. He said I have Connective tissue disease but offered no tests or any suggestions. He just asked about other specialists I have seen like gastoenterlogist. , ENT etc and said 'what did they say'? I told him they just discharged me.
He just said. "There is research in America. One day people like you might have treatment and we will identify further types of EDS but that won't benefit you"
To be fair that really isn't much different to what I got for hEDS; a diagnosis (which you have), a referral to physio (one round - so that is everything sorted then ) and tramadol/paracetamol/naproxen/omeprazole for the rest of my days. I only get tramadol now as the naproxen ruined my stomach lining.
There is no specific help available for hEDS and the official line in the NHS is that each condition/problem should be dealt with on the basis of treating symptoms only, as and when you go to a GP.
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) and tramadol/paracetamol/naproxen/omeprazole for the rest of my days. I only get tramadol now as the naproxen ruined my stomach lining.
Hip, Pelvis, Groin and Lower Back Pain. Help needed as Difficulty with standing and walking.
Stretchy eye and face skin... HELP 
Maybe it's hypermobility syndrome
Is there a difference between hypermobility syndrome and ehler danlos syndrome?
