Diagnosis? Is this Ehlers-Danlos?

My health has slowly been in decline for several years. It started with multiple dislocations and chronic pain. I was told these were because I had Joint Hyper mobility Syndrome. Also shortly after I developed Asthma at 15 years old with absolutely no history of it! I coped for years but over the past two years my health has declined to include muscle pain, IBS/ urine problems , faintness, vertigo and light-headedness, easy bruising that sometimes turn into dark patches. My arms and legs also fall asleep scarily quick.

Now Ehlers Danlos is a condition that has been mentioned several times but I honestly feel that doctors can't be bothered to diagnose. Does this sound like Ehlers-Danlos?My local GP treats me like a pest because I have been constantly pestering them for the past 7 years over this since I was 14.

Also I don't know if this is just me but whenever I think about having EDS or JHS I just think 'Nah, I can't' even though the signs point quite clearly. I always doubt my fatigue, am I just horrifically lazy? the dizziness, am I being over dramatic? ect.

I'm 21, at university and I'm starting to really struggle mentally with this, doubting myself. What do you guys make of these symptoms?

6 Replies

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  • Joint hypermobility syndrome is another name for elhers danlos that's what many experts in the field of eds believe.

    Can you go to your gp and ask to be referred to a pain clinic or to a physio that understands jhs/eds?

    I'm also at university can their disability department help you? Sometimes you can get disabled students allowance dsa which can allow a notetaker in class even if you're unable to make it to class. They can also help you look into the possibility of going part time to help with the fatigue.

    Do you still have your diagnosis of jhs? That can be used to help you apply for dsa.

    Ally

  • I have got some help from my university, they provided a laptop on DSA but when asking my doctors for medial evidence they wrote a letter that claimed that JHS only caused some pain and dislocations. Nothing about the fatigue, dizziness or any other symptoms. So my university seems to think I only have to deal with small amounts of pain (Which is not the case)

    For some reason they don't treat JHS very seriously as an invisible disability (I had one support worker comment 'oh that's just dislocating regularly!' in an almost patronising way.)

    My GP is a mess, referrals take up to a year or just never come! I actually got a genetics appointment, attended it and never heard back from them. My GP didn't hear back either.

    I did attend physio but it messed me up, they gave me to much to quick and It simply caused a whole load more pain. When I tell my doctors this they act like I was being a childish brat who just didn't want to work at getting better (So clearly my pain wasn't that bad)

  • If you are right about EDS then your GP has managed to fob you off but your symptoms continue to go undiagnosed and untreated, you want to know for sure. I am glad you managed to continue with education, my son last 1 academic year. Find a GP who will listen to you, put a list of your symptoms in writing to your GP, mine failed to join the dots and consequently son was not diagnosed until age 15. I am not an expert, still trying to get head round the 'bolt from hr blue'. Perhaps the EDS association could help. Good luck.

  • So many people with EDS have been written off by GP's as hypochondriacs because the symptoms vary so wildly. My advice to you would be to write everything down on one piece of paper after googling the symptoms of EDS and noting which ones you've had. Then a better picture is given to a GP, and you can ask for a referral to a rheumatologist.

    Look up the Beighton Score - this is what they use for diagnosing hypermobility and is the core of EDS diagnosis. I'm 66 and hadn't attempted to touch my toes for many years but when I was finally diagnosed at the age of 65 one of the things I was asked to do was touch the floor with palms flat without bending knees. Having severe arthritis I wondered if I'd be able to do it but no problem at all. Thumbs go up to wrists, and across palms on a closed fist and so on. Once you've established that aspect it should be easy going to get the referral. At the moment I've got huge bruises on one arm just from the blood pressure machine! It's a bundle of fun!

  • Sorry to hear your experiences with such rubbish attitude from your GP on top of the difficulties your body is already giving you so young.

    Your symptoms really sound like a typical history of suffering with EDS and would explain the unusual links and collection of varying degrees of severity but when an expert sees them altogether, along with other symptoms often overlooked by GPs, they will see the way your JHS is affecting you and probably explore EDS (as it is now considered as the same).

    It really is an advantage to already have a diagnosis of JH "Syndrome" as often we only get JH or not even that. Depending on where you are in UK will affect the next steps for specialists to evaluate, confirm and treat/support you but if you are fortunate to have a uni address and home address in different NHS Trusts you may be lucky in getting referrals. Look on EDS uk and HMSA sites for info on clinics etc then ask for referrals. I would suggest you try other GPS in the practice or at home practice if you have better GP surgery there. Tbh I would try registering with a new GP surgery permanently anyway with that attitude plus when you are looked at by new GP they may look at you afresh so be proactive towards specialist referrals.

    Don't worry about pestering a DR as they are there for you and let's face it nobody wants to always feel ill or in chronic pain or have fatigue that literally stops us having a decent life or forces us to cancel good things! You are not being lazy or dramatic in fact I suspect that it's just the opposite! Your body is awkward and can't be controlled by choice! If it is EDS then it is a connective tissue disease with faulty collagen being too stretchy to support your joints so dislocations but also inside muscles ligaments organs skin eyes ears everywhere is made from collagen so plays harder unpredictable everyone is affected differently.

    I was always suffering from sinusitis, throat then chest infections, allergic reactions, coughing, wheezing, sneezing in damp mouldy areas (most UK ) so at uni diagnosed with asthma as an adult and worse when teaching.... but inhalers didn't work nor nebuliser with ventolin but actually I just needed oxygen after repeated hospital visits even admissions .... then finally after severe heart arrhythmia attacks thought I was dying as followed by dreadful pneumonia I saw a pulmonary chest specialist who diagnosed me with sleep apnoea as my tubes collapse but also in a test for asthma my body proved ventolin was ineffective so it's not asthma. He did other investigations diagnosed Vocal Chord Dysfunction I've never heard of but I always lose my voice when in pain or fatigue sounding broken croaky like I'm faking it ringing in sick lol ;) but it's apparently common with EDS as too stretchy collapsed muscles etc. Plus it explains why I sound like chain smoker before 11am (never smoked). Anyway also allergic rhinitis & sinusitis so prescribed antihistamine, amytryptyline & Monteleukast Singulair helps taken daily no more "asthma" type episodes since and less VCD episodes.

    Anyway sometimes we need fresh eyes looking at our long list of symptoms and history so worth you getting referrals to EDS specialist & then with that JHS / EDS confirmed you may benefit from pain clinic & rheumatologist once given guidance or even through their teams.

    In meantime be wary of anything that may increase dislocations but stay moving like with core support swimming hydrotherapy. Always tell physios etc so preventing hyperextension also inform any hospital appointments as EDS affects so much like pain thresholds. (Most find local anaesthetic does not work with EDS so affects dental & surgery ) also issues with pregnancy& birth and get eyes tested.

    Just be aware and read up on EDS UK & HMSA tips. Loads of great advice and guidance but also let's you become a proactive manager of your condition and body. It really helps. Plus there are things to help you like disability student support and occupational therapists can help with gadgets or equipment to make life easier.

    Hope you get some better support and treatment and I am sure you will find a positive way forward :-)

  • Thanks for he tips, sorry for the long delay in responding. I took up membership of EDS UK, waiting for appointment with the physio and OT. Got myself a hard covered note book to record all telephone conversations, appointments and symptoms my son mentions or presents. I now need to look up disability student support feeling more empowered now, although there is so much to learn. Have also identified a new GP finding a good one is a hell of task. Read somewhere that EDS is the most neglected medical condition is medical history. it might have been Prof Graham, not sure. It is misunderstood by some and not taken seriously by others. Oh well, onwards and upwards. Best Wishes.

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