Range of symptoms & no answers... EDS?

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i have no idea if anyone will be able to help but i could do with the space to let off steam anyway.

i have a whole host of symptoms that i have been struggling with.

Due to long standing mental illness, much of it is always put down to physical manifestations of mental health problems.

however, it has been several years and nothing is improving, but much is deteriorating.

a friends parent (who is a physio) suggested many of my symptoms correlate with Ehlers Danlos (sorry if spelt wrong). however, on searching, much if it seems to be mainly based of flexibility/double jointed - ness?

i dont have this. i have certain things which are more mobile - some fingers can bend further, i can reach the wrist with thumbs etc, and I have recurrent dislocation of a few joints but that is it on the hypermobility side of things.

however i have a list as long as my arm of other symptoms - which looking up EDS/POTS/CCI/MCAD all seem to ft somewhere in amongst it... including digestive, bladder, blood presure, heart rate, scarring etc etc etc

i was previously dianosed with Functional Neurological Disorder but the more i research the more i feel there is much more to it and (considering i hardly had any tests) feel it was the easy diagnosis rather than the correct one.

i am obsese and in the midle of losing weight - difficult with so many symptoms but im getting there. between this and having a history of mental illness im sure ill be dismissed (again!).

has anyone got any advice of the avenues they persued or what helped them on a route to diagnosis (not just EDS but an diagnosis that they struggled to get)?

exhausted & fed up

thanks for taking the time to read.


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10 Replies

  • Posted

    Hi Francesca,

    I hope this can help a little, it is a possibility that you may have EDS3 or even hypermobility spectrum disorder, there's a few different types of Ehlers Danlos.

    I would suggest asking your GP to refer you to a rheumatologist possibly one with an interest in connective tissue disorders. Go to any appointment with as much information as you can, I would recommend you look up the Beighton scale which is what helps define how hypermobile your joints are, it's sounds as though you are hypermobile particularly with a history of dislocations, hypermobility can be affected by a few things sometimes people can stiffen with age, so for example if you have once been able to place your hands flat on the floor without bending your knees then I would definitely take note of that. There's often a symptom guide online as well as the new guide which is used for diagnosis which I would have a look at.

    I personally had to pay privately to see Dr. Alan Hakim in London for my diagnosis but have since found and amazing GP with an interest in connective tissue disorders, EDS diagnosis is quite strict at the moment as they want to make sure that patients are definitely EDS for research purposes, however it is a spectrum but it does sound as though you fit in there somewhere.

    It took me 31 years to be diagnosed because of not being believed and just not enough knowledge in the matter, but awareness is getting better so perseverance is key never give up and research as much as you can.

    There's some great support groups on Facebook if you use it which help you throughout your journey and it's great to be able to speak to people going through the same thing as you.

    Anyway I hope this helps a little and I wish you luck, don't be fobbed of keep fighting.

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    • Posted

      Hi Nooshki,

      thanks so much for your reply. its very much appreciated - and thanks for your encouragement.

      I think when you've been turned away from so many doctors and their dismissive attitude, its really difficult to feel confident to go back.

      i looked up the beighton scale and score 3 definite points that i know of. lost one due to nit quite touching my left wrist with thumb used to be able to until i broke that wrist) and palms to floor i always could until 2 years ago when i was paralyzed down my left side for over a year, now i feel quite stiff, though somedays i can get most fingers flat on the floor) then im not sure re the elbow or knee hyperextension.

      id be happy to pay privately for someone who will listen and take on board my symptoms, so maybe thats what i need to do.

      can i ask what sort of doctor would i need to see privately?,

      thanks again and thanks for your time

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    • Posted

      That's no problem glad I can help somewhat.

      I would say to still mark yourself down as once being able to do those things (You have a very valid reason that's stops you now) and when you do see a specialist then just let then know you can't now for whatever reasons.

      I believe Dr Hakim is taking a year out at the moment but I'm sure there's Dr Kaz Kaz, Dr Mittal and also Dr Graham but I'm not 100% sure if he is still practising. They're all rheumatologist's whose speciality is connective tissue disorders.

      I had to travel to London for my appointment from North East but it was worth it. I can believe the feeling if being genuinely listened to and believed! It was amazing. Honestly you know your body better than anybody and if you don't think.something is right then push for some answers,.with my private diagnosis it has really got the ball rolling with the NHS who just didn't have the right people.in.place to diagnose me but I am being taken seriously now which is fantastic.

      one of the Facebook groups is called EDS UK I recommend joining it, you'll be amazed at how many people sound just like 'us' and things you thought normal as such being related to EDS still astonishes me everyday.

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    • Posted

      Tetradecyl sulfate or polidocanol injections into joints to stabilise those that regularly dislocate. It lays down fibrous scar tissue to hold joints firm. They have been used for many years for Varicose Veins . It would be interesting to find out your Specialists thoughts on the subject. They do say that more international studies are needed to confirm results.

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  • Posted

    I have just been diagnosed with EDS. I was sent for genetic testing about 10 years ago, but I did not go through with it as there was no help or relief available at the time. Now they have discovered a way of getting some relief, so I went to a specialist and he has diagnosed me with EDS. I had a 2 hour appointment last week and he asked me many many questions about my life. I was shocked and surprised that in 69 years I never really knew just how flexible or loose jointed I really am. I was just not aware that other folk can not move as I can. I missed the boat.......I could have joined the circus if I had only realised 😃

    My thumb touches my wrist, my little finger goes back about 90 degrees and I can still put my palms flat on the floor even though I am now old and stiff. I did not realise others cannot do this. This is just 3 small things, but since the appointment I have checked with all my friends and they cannot do any of these. Some family can tho.

    For the last 22 years I have constantly had to go to an Osteopath or a Chiropractor to continue putting me back together. I can put something out of joint by doing the most simple little excercises. I do some physical work and excercises or mostly stretches to keep me moving, but I would not be able to continue without ongoing treatment.

    I don't know where you are in the world, but I am in NZ. A few medical people here have really been doing research on EDS as their own family members have it. I was shocked when I looked on here after my diagnosis, and found almost nothing about EDS. A very influencial medical person here apparently, still does not accept this problem. I think you should get other advice, but be aware, some medical people are not believers. I was originally diagnosed with Fibromyalgia, which is still taught in this country under the Mental Health section. I don't understand why some people go into medicine if they are not prepared to even peep out side of the box.

    I do hope you find and get some relief for your medical problems. We do understand on this site, that you can look healthy , but be in agony. Keep smiling and keep moving.

    keep moving

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  • Posted

    Just reread your diagnosis of "physical manifestations of mental health" and I now I have to let off steam. !!!!!!! There are doctors out there, and there are DOCTORS. Do some research before you change Doctors. You need one who has an open mind, is prepared to look at other possibilities and your friend's Physio is probably the best place to get a referral from, for another Doctor who is willing to look into the possibility of EDS. Both times I was referred for EDS diagnosis it was a Physio, Osteo or Chiro who actually worked on my body and continually put me back together, who suspected I had EDS, not my doctor who never lays a hand on me.

    Please trust in yourself. Seek another diagnosis, and I do hope you can get some relief, and when you get stressed, let off steam on here. We do understand.

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