Hi everyone, my youngest son was diagnosed with Hypermobility 3 years ago, alongside Generalised anxiety, he’d had many problems for quite a few years, but we didn’t realise as he thought everything he was going through was normal. Since that time he has also now been diagnosed with S shaped Scoliosis (back to front) and possible lumbar Scheuermann’s. He has had many Rheumatology appointments and 3 MRI. Every time we ask if he is suffering from Eds they won’t commit to a diagnosis. Last week we attended an appointment and this was to rule out inflammation in the spine and to confirm Scheuermanns. The doctor said there was no inflammation so my son should do some exercise and ask GP for referral to Pain clinic. He wouldn’t commit to diagnose Scheuermanns, he just said the vertibrae was abnormal and it felt like he was just trying this get us out the door. My son is very upset as there is again no clear diagnosis, he is in chronic pain daily, has stomach issues, migraines, highly sensitive , cannot walk very far, and now he feels he’s been dismissed again.
What I want to ask is, the London specialist in Hypermobility is it worth paying for a private consultation.?
Sorry about the rant 😂
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Anne2018
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In your circumstance I would say yes, it would be absolutely worth getting a diagnosis. It may not change what the health professionals offer in terms of treatment, but having a name for it and being able to link all the problems together is hugely useful. Additionally, knowing which EDS he has is vital (and it does sound very much like he has one of them).
Also, it helps with anxiety because you finally have a label and a reason for it all. EDS has strong links with anxiety, and all by itself it causes everything you have listed. You do not need a separate diagnosis for anything else.
Hi Anne. I am so sorry to hear about your son, I know how worrying and upsetting it is for him and all the family..When there are so many symptoms, Doctors can seem reluctant to commit to making a diagnosis and this frustration only adds to your difficult situation . It can be that not all the symptoms fit any particular diagnosis of which the consultant you see specialises in. Often too, the specialist you are seeing wont be familiar with EDS, so You are right to research your sons symptoms, and to get to see a knowledgeable specialist in EDS. My son is now 22. He and I were both diagnosed by Dr Hakim in London. I can highly recommend him. alanhakim.com
After years of being left to rot by Doctors, I did my own research which lead to us both being diagnosed last year with hypermobile Ehlers danlos syndrome (hEDS).. My son had suffered all his life with various symptoms and chronic illness, being diagnosed with severe ME at age 7... He also has scoliosis which causes him back problems, and It was virtually dismissed by Doctors when he was 16 after six weeks of physio failed to improve pain.. He was in a wheelchair for years when he was 9 and physiotherapy at that time made his symptoms, pain and fatigue worse.Only resting and then be able to recover in his own time helped him improve - Graded exercise therapy (GET) is recognised now as being detrimental for early onset and severe ME- Physiotherapy is recommended for hypermobile EDS, but done correctly so not to damage joints or increase fatigue.. We've had some nightmare years!!! I've had to learn a lot. Some how we've got through it, and are still going🙂 and you and your son will get through this time too🙂...
My son also has anxiety and ocd which can flare-up at times. I too have these. phobic disorders are quite common in EDS and recognised as being part of the syndrome.
As Jay66 has said, having a diagnosis is beneficial for lots of reasons. Knowing the cause of symptoms, illness and disability brings peace of mind. Also when it is known what you're dealing with it enables Doctors and medics to give the correct treatment, and you can learn to better manage the condition yourselves once you know what it is.. Since our diagnosis of hEDS we have also had comorbidities' diagnosed which the EDS specialist's diagnostic letters enabled us to get, by recommending various tests and further referrals to our GP that would never otherwise have been considered.
We all know how hard this is and we are here to support one another.. You can also msg me.. Best wishes to you and your son❤ xx
Wow, thank you Tillyray, when you start to see that other people have had problems with getting diagnosed, it somehow makes life a little easier....I am in the process of getting some help with anxiety & depression at the moment, we’ve been trying to cope with all the issues and the consequences of having this since callum was 12/13 so it has taken its toll on both of us for last 12 years ....
Sounds like you’ve had a journey as well with both you & your son, guess at least you both know how each other is suffering . I think I will follow your example and get an appt with the specialist and see what he says.
We were told at one Rheumatology appt that the Hypermobility and Scheuermanns were two different mutated genes that both my husband & I carried which passed to callum.
It would make more sense if this was Hypermobility EDS, instead of many different types of connective tissue disorders
one rheumatologist I saw said I had hypermobility, but didnt offer any help before discharging me!.. I've since learned, general rheumatologists may recognise hypermobility but rarely acknowledge the multitude of other symptoms because they tend to lack knowledge of EDS.. I had to rule out a couple of health conditions then I began piecing things together. I realised that seeing a specialist in EDS would give me answers.. I had been diagnosed previously with fibromyalgia, and my son with ME. I always knew we had the same/and similar symptoms. I soon discovered that the best route for us to go down was to see a private specialist. It paid off!🙂 Good luck! xx
Yes. We found it incredibly helpful going to the London hypermobility clinic. After myself being diagnosed locally with hEds I realised that the numerous symptoms my children also experienced were likely to be due to it. Local healthcare was very dismissive. We went to London and they were both diagnosed. It helps as you can then target the treatment correctly.
We all had a few sessions with the Physio there which was worth the effort ( 8 hours round trip) as they set us exercises to do at home in between 3 monthly appointments.
With a few other adjustments (low FODMAP diet for 2 of us ) and understanding the best way to manage symptoms we all now experience minimal symptoms.
It’s such a shame that the nhs are so poor at dealing with this condition as the correct support can make such a difference. Good luck.
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Do you ever wonder whether you have been misdiagnosed or have another illness running alongside EDS?
Is there a difference between hypermobility syndrome and ehler danlos syndrome?
Hi, new, confused and a little annoyed
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