Hypermobility. If suspected do you need a diagnosis?

[Greenbowls]

😊(I'll add this here since I've rambled)

tl;dr. Is suspected hypermobility something that warrants a GP diagnosis? Is there any help available for anxiety, posture, safe strength training or do you just figure it out yourself?

It's just become apparent DD , 19, has hypermobility. It was pointed out by an instructor of a new activity she's doing. Which made us all google it and have an aha moment.

She didn't walk until 19 months and bottom shuffled. She could bend in half to sleep as a toddler, photos show her in a reclined position as a baby, not sitting up straight or leaning forward to touch everything like DD1. Even in her high chair she looks like she's slouching to one side or she'd pop her legs out on the tray!

She was not an active, sporty child. She was slow to swing herself, ride a bike, swim.

Fast forward to now. She has bad generalised anxiety and now I'm reading about the connection between anxiety and hypermobility. She's also fatigued easily. She works on her feet and days off she rests.

In recent years we've been investigating her thyroid because of her having so many symptoms that fit hashimitos but she tests high normal in TSH and antibodies measure below the minimum of the cut off for hashimitos.

I've also always suspected ADHD but although she agrees she's not interested in currently pursuing an assessment.

It's interesting now to view these things through a hypermobility lense. She's ready to address her anxiety but we're not sure what is the best way. It appears with hypermobility there is a biological/physical reason for the anxiety. It can't be reasoned away.

She's looking into the exercise stuff herself and understands the need for strength training. I wondered if it is something she could get help with through the GP or physiotherapy? She's struggled with her weight and has awful posture with a rounded upper back. She has my mils build so I'd just assumed it was body shape genes.

Don't know if there's help available on the NHS but one thing that would very likely help is improving her posture. Alexander technique and active walking both hekped me. I never got a formal diagnosis but osteopaths say I have hyper mobility symptoms.

I think unless its the sort of hypermobility that causes severe disability and/or developmental problems then you just have to stay informed and as fit and healthy as possible.

What I didn't realise until recently is that it can also effect your internal organs. I have a hiatus hernia and that is probably linked to hypermobility. As long as I eat healthily and not too much it doesn't cause any issues now.

Yes, AT, yoga or pilates would be beneficial.

My DD was diagnosed with Hyper mobile EDS by a rheumatologist at 19.
Whilst she suffers with chronic pain, and exhaustion at times there doesn't seem much that they can do for that.
She has seen a physio on the NHS, which didn't really help, and an occupational therapist for hands and feet issues.
More importantly are the associated problems that can occur.
She has had ECG because there can be heart problems
She is currently undergoing investigation for POTS, which is common with hEDS.
She also has issues with her digestion which can be a side effect.

I think her main 'help' has been the fact that she has been a keen dancer since she was 2. The ballet in particular has helped keep her core strong, which then helps support everything else.

Diagnosis certainly helps, if only to point in right direction, DD had problems with her mobility which became really noticeable when she was about 7, she would wake up and really struggle to walk, sometimes her knees would lock , GP had no idea,nor did the paediatrician initially, had scans etc but not until sent to see a specialist did diagnosis happen. He watched her walk( she was fine at the time) got her to do a couple of things and literally diagnosed within 5 minutes . She needed orthopaedic insoles, but once fitted, problem basically solved, once she had the diagnosis though, it became more and more obvious how “ bendy” she is. Over the years she’s done lots of core strengthening and now rarely has any issues, within that diagnosis though,who knows

What's AT? Is yoga okay ? Is there a type that is better?

There are huge differences between:
Benign hypermobility (10-30% of the population) where you have one or more joints with a range outwith the norm and little or no other symptoms whatsoever

Hypermobility Spectrum Disorder - connective tissue disorders that are treated similarly to Ehlers-Danlos Syndrome but don't have all of the comorbidities and/or you don't fulfill the criteria for EDS

Ehlers-Danlos Syndrome (what I have) - chronic pain, chronic fatigue, disability, many and various comorbidities. There is a huge difference between someone with some fatigue from hypermobility and EDS, I just want to point out.

EDS and HSD absolutely need diagnosing. The amount of help you get depends on what issues you have. There's no holistic whole person treatment in this country it is literally oh you need physio for this body part or yes we'll check your heart. Fatigue is dealt with via pacing and learning your own body and limits (also depends if POTS is one of your comorbidities).

Alexander Technique, as the other poster mentioned.

I have suspected hypermobility its told to me everytime I have a niggly knee, back issue, shoulder issue you get the picture...never really told how to cope but I would say improving posture is a huge thing and she should defo work on it!

My DD was diagnosed because she was late walking at 2 years and physiotherapist diagnosed this in their report after assessing her a couple of appointments, some were with other dr's in the room.
Nobody told me about anxiety, just activities and exercises.
She does get anxious but I'm less flexible than her, though was a late walker too for some reason, but I put her anxiety down to being a teenager and I'm also anxious. Her dad has the same knee thing where it goes backwards when he flexes/locks his knees and I don't think he has anxiety issues.

Edit to say that hypermobility is a spectrum and they didn't seem phased to overly concerned when they told me my DD has hypermobility, the physiotherapist said it's common and even she has it, she said some joints got less hypermobile with time and advised to not try to overextend joints and to wear supportive shoes.

She would need to be diagnosed by a rheumatologist rather than a GP. While there is a limited amount they can or will do to help, a diagnosis is important because it can be relevant when it comes to things like going under anaesthesia, for example, or with certain medications. Paracetamol can be ineffective in some cases and fluoroquinolone type antibiotics should be avoided, for example. It's a multilayered condition and needs some research but in terms of treatment probably the best thing you can do is focus on muscle strength, particularly around the core to give extra support to the weaknesses elsewhere.

Yes, get a diagnosis and ensure all involved with her healthcare in future are fully aware.
It can also link with other conditions so might just be part of the picture and there are possible future health risks associated with hyper-mobility which getting a diagnosis would highlight too.
Some people think it is only an issue if you have a severe form but even a few hyper mobile joints bring their own risk.
I speak from personal experience.

@FullLondonEye I didn't know that about paracetamol. My DD has always complained that it never did anything for her - that explains it! I shall have a look into the ABs too - which ones are involved please?

We have a self refer physio service where I live. She's not in any pain though but I wondered if she could self refer for her posture given she's quite a noticeable hunch ( although we've thought in the past this might be due to her thyroid - who knows!).

Maybe she'd be better seeking out a private physio for a few pointers.

I would definitely refer for a back hunch at 19 - that's surely quite unusual? I'd get that checked out. You've got some good advice about the other issues on this thread.

Counselling can be hugely useful for anxiety, regardless of cause, as it helps you learn your triggers, how to head things off, and gives you tools to manage.

It’s antibiotics from the fluoroquinolones group, there’s a few included. There are risks for tendon injury which are higher for EDS patients.

Yoga is not generally recommended with hypermobility as it can make things worse and over stress the joints. Pilates is much better. My rheumatologist also recommends swimming to strengthen everything - the key to managing is ensuring that muscles are strong to countwr the laxity of other soft tissues.

In our experience there is not much support for hypermobility but it is good to have an official diagnosis as it can affect other things as noted above. When my ds dislocated his knee and I said he was hypermobile, the medic asked if that was "a proper diagnosis" and when I told her which rheumatologist and hospital, she took it much more seriously!

You could start off with the NHS physio and move to private if needed? DD1 is 4.5y and suspected hypermobile (they won't formally diagnose in our area until around 7y). She's having physio appts every 3months to work on building strength, they've given us some exercises to do and advice what to encourage (ballet / swimming) and avoid (gymnastics) and we are going from there. So even if your DD only has one appointment via the self refer service, it could be a start and then you could look at private physio / osteopathy etc if needed