ehlers-danlos

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i myself have EDS type III and have loads of problems. does anyone else have other health problems eg i also have Raynaulds phon brittle asthma and carpal tunnel. to name but a few.

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  • Posted

    Hi there Guest I was diagnosed at 44 yrs as a little one, sprains and breaks pains and aches (to me thinking all this is pretty 'normal') but 'becareful' on the word 'normal' too because a physcologist would say normal whats normal hah..

    Anyway teens IBS at 18 then pregnant at 19 and had numerous issues , with A Rare form of Glandular fever, EBV an enlarged spleen, flu, food poisoning, anorexic, aneamic and very unwell spent months in Hospital, my vision was a problem, dizziness .

    i have had 4 children , lost 5 ,

    my last pregnancy my membrames ruptured i was closely monitored throughout the pregnancy,

    after i had a hernia and a leg problem not thrombosis but the A1 verson of the M1 lol

    had hernias x2 the 2nd was laparoscopic and this is where my troubles began and how i live to day almost 4 yrs on 5 May !

    i knew the pain did not seem right it was different , however you just think ohh its age, hormones , but after 24hrs in hospital i go home cannot stand up straight and the suffering in my right side when the operation was done to my left side , i was stuck in bed from then onwards, could nto dress myself, wash, barely walk to loo, was throwing up the pain was just so much, i phoned hospital, i phoned Drs i was not happy with the snooty receptionist at Drs though she was like....hhh you have to come to surgery caroline and see dr... HOW the bleep can i get there in this condition so hubby deals with it , i spoke to one that has retired, he says god forbid you have to go back to theatre you have gone through enough , and as it goes i was back at Dr she said phone for ambulance if pain gets worse and low and behold because i had made effort to get out of bed and go did that make me so ill 999 and rushed to hospital entinox, was left allll night , to be pumped with morphine when drs came on next morning, scans to find nothing, so put me on a ward where others were noisey i could not cope with it the sounds etc it was going through me so signed out as the surgeon was not to be found anyway! , finally i get to see him more scans and more pain relief then theatre, and i had nerves wrapped around screws,

    after surgery i felt some relief of the pain i had but i was left feeling highly painful round my ribcage and back as if i was crushed , after this my legs would give on me so many times & fall, my vision problems back and for to dr then my neck went in feb 2011 3 times!! in a month omg what more, then more things my speech, numbness, weakness, left side weakness , i had also had sciatica in both legs but not at same time they would alternate and it was in my back , i had MRI which confirmed 1 mod-large disc herniated and 1 small disc herniation compression on my spinal cord on my nerves which was the reason for the severe tingling in my hands and the pain it was not nice i could not do anything with them, i was tried on diff meds, passed pillar to post , so neuropathic pain, and diagnosed with BHMS/Eds i looked it up- and had to learn all about it MYSELF as no one seem to be able to tell me much . it answers a few things the problems with doing things in kitchen and i get very heavy i get very very fatigued both tiredness and body fatigue and this is just non stop one thing after another, the summer whcih i LOVE is now a killer it drains me so badly i go numb and very heavy , i dont even speak much, i get blotches, i get facial neuralgia every year and this year has been the worst, i get severe migraines ,

    so if you want to chat i am here .. i get so so many symptoms is unreal and the burning, stinging the intense aching and the feeling in legs or arms i have to massage , so much

    so it be good to hear from you too xxx

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  • Posted

    Hi I was diagnosed about 9 years ago with type 3 eds, I to have a number of other problems to, ahstma, ranyalds, problems with my tummy and digestive tract, allergies to many to count, and it goes on, so if you need advice or just want to talk im happy to help.
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  • Posted

    I alos have severe ME, fibromyalgia and POTS as well as the EDS hypermobility. They are my ain things wrong but i also have other stuff like asthma, PCOS, one kidney, IBS, scleroderma but the type that just affects skin and isn't systemic thank goodness. My Mum was on sodium valproate when she was pregnant with me and they discovered the year after i was born that it causes birth defects, so i do wonder which stuff is down to that. I got the ME and Fibro nearly 5 years ago after the flu jab and subsequent flu like virus. I can remember having POTS symptoms in my late teens but it has become worse since having the ME. I have had problems with joints and muscles and some other stuff associated with EDS all my life but was fobbed off with being told it was just growing pains and eventually i just didn't bother bringing it up.  I went into NHNN in London for 5 days worth of tests for teh POTS and was told that the POTS was secondary to EDS hypermobility and that was the reason for the POTS and so many other symptoms. I am not double jointed and while i was flexible as a child, i am very stiff now and only have about 40% of the flexability that most people have except for my hips and i can still get my legs up to my head easily. I'm waiting to see the rheaumatologist somewhere in Oxfordshire but I really want them to refer me to UCLH so i am under them for the POTS and hypermobility. I have to go to London to see a uro-gynae who has an interest in hypermobility as well. Fed up of ambulances carting me off to different cities all the time and they pick you up at 6am if you have a morning appointent whihc kills me. Oh it's all great fun isn't it lol!
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