Cardiac discharge and rheumatology discharge despite both agreeing hypermobile

[Neek1]

So, I think I can definitely say I have come to a dead end when it comes to my health issues. Here's some background:

Since I was 15 I began getting minor sprains and having ankle and shoulder problems for which I was referred to physio. Little did I know then, I would be in and out of physio for the next 6 years for what started as what I thought was dance/ p.e injuries and became persistent chronic pain. Ankles, knees, hips, pelvis, back, elbows and shoulders. Also doctors stating it was due to being flat footed and carrying more weight. However one doctor did say it was because I was "hypermobile" and knowing I was definitely very flexible I assumed that's what he meant.

Later I came across the hypermobile syndrome and started to think this was what my problem was but my doctor's had never heard of it. I have fainting spells and an ectopic heart beat that's "no concern" except for when I have superventricular tachycardia and pass out...

I encouraged my doctor's to send me to cardiologist as did the A&E doctor and cardiology ruled out anything concerning with my heart. I then pushed to be seen my rheumatology and had an MRI and they decided that my symptoms could be managed my exercise and discharged me

I'd just like to know if anyone else that suspects they have hypermobility syndrome has come this far with assessments ie MRIs and medics still remain blasé...

It's frustrating to be in chronic pain and professionals not understand, and think you are a hypochondriac

[jpain]

Have they mentioned POTS? Look it up and see if that matches your heart/ fainting symptoms. That can sometimes go hand in hand with hypermobility spectrum disorder (the new term for hypermobility syndrome).

The rheumatologist should do something along the lines of the Beighton test to check for hsd. An mri wouldn't show up much in terms of hsd I don't believe. If you don't believe you were examined fully (and think you match the characteristics/symptoms of hsd) then push your gp to get another referral to rheumatology. Very frustrating I know and seems to have been the way for most of us. A rheumatologist should also do blood tests to rule out any inflammatory causes.

Unfortunately if you have got HSD, with the chronic pain side of things it seems to be the way to 'leave you on your own'. I was recently diagnosed with hypermobility spectrum disorder by a rheumatologist and then immediately discharged (with the advice to get referred back if things change significantly). I was referred to physio after my initial visit about 8 months earlier and did actually get several months of this (although tbh I saw several different physios in this time with varying results). This now seems to have also come to an end. I am trying to manage it through exercise although this must be paced and being initially non weight bearing and build up very gradually. Best way seems to be taking advice from others who have it and a physio if you are given access to one that knows about the condition (don't be disheartened if you meet some that don't believe it's 'a thing' and try to push you too hard too soon) If this is what you have you will gradually work out more as you go along.

Whatever the cause of the chronic pain your gp is required to help you manage this, whether that is through medication or pain management clinic or whatever they need to help with that.

Hope I don't sound too negative there! First step is to return to your gp I think

[Tillyray]

Hi. I can understand and relate to your frustration. Like you, I have suffered with various body problems since childhood, and although it was difficult I just had to cope and get on as best I could, as we all do..Fast forward a few decades and It has taken me over ten years of going back and fourth to GP's and consultants with increasing 'mystery' symptoms, pain and fatigue, before eventually getting diagnosed last year..

I had been misdiagnosed and fobbed off many times before then. I was so ill and becoming more disabled due to joint problems and other symptoms, some of which have turned out to be because of Autonomic dysfunction, postural hypotension - related condition- which I got diagnosed by a cardiologist as a direct result of getting hEDS diagnosis. My EDS specialist Dr Hakim, recommended various tests and referrals that I should have...

Because the Doctors I saw during the previous years had no answers that could explain all my symptoms -other than the catch-all Fibromyalgia- all they could suggest were psychological therapies, suggesting that was my problem😬 So by this time I had no choice but to seek a private hypermobility, EDS specialist's opinion, where along with my son I was finally diagnosed with hypermobile ehlers danlos syndrome👏..

Just prior to that I had seen an nhs rheumatologist who had said I had hypermobility. But despite my increasing symptoms, severe pain and a drop foot from tendonitis, tenosynovitis, I was discharged!

It was with the help I received on here, and the research I did that I was able to piece things together..

I have learnt that general rheumatologist's very rarely have knowledge to diagnose EDS which is hereditary, or Hypermobility spectrum disorder. They may recognise hypermobility but not its significance..There is now a Royal college of GP's toolkit for hEDS which helps assist Doctors in reaching a diagnosis, and also helps them to better support patients already diagnosed rcgp.org.uk/eds

Don't let Doctors fobb you off. You owe it to yourself to have the best health you can. Good luck and best wishes xx