New diagnosis for 18 year old - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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New diagnosis for 18 year old

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Cencat

Hello, my 18 yr old daughter has been diagnosed with Hypermobility Syndrome and I am looking for advice on how to help her. She has constant pain mainly in her shoulders & neck area but also in her legs. She used to play ladies soccer but has given it up as it causes so much pain afterwards. What can we do to help relieve her pain (painkillers don’t seem to work) . She likes activity but what would be the best type to help? Thanks for any advice.

4 Replies

In all honesty I’m never out of pain but everyone is different & I also have ME & fibromyalgia. Massage is the best thing I’ve found, you can do this at home with anything from volterol gel to body lotion. It helps with tight muscles & tendons & keeps the joints moving. Swimming is a low impact form of exercise but you have to take it slow (it causes muscle spasms with me but not in everyone). Physio is good if you can get it - mine does hydrotherapy, massage & Accupuncture / dry needling with me. And walking is a good exercise, it keeps you moving. Hope she’s ok :)

My son is 23 now and has a lot of pain if he does too much. He also has pain in his feet when he stands or walks. Hydrotherapy has been brilliant for him (and he is really missing it in lockdown). He also finds that having a reclining chair to sit in at his desk which supports his back and head and shoulders really helps. So he sits side on to his desk in one of those sitting room type leather reclining chairs.

I think it is a matter of trying to see what works for you.

I have recently been through all this myself after years of mis-diagnosis. Hydrotherapy was the best help and I've got so much stronger since January, though obviously had to stop because of lockdown. I'm now working remotely to do physio. It's a slow journey and it is hard work, I'm not going to lie but the stronger I get the better I feel. I was very lucky as I was able to see a HSD/EDS specialist rheumatoligist at the London Hypermobility Unit. She referred me to podiatry for gait analysis (which led to insoles), hydro/physiotherapy and lastly Cognitivie Behavioural Therapy to help manage the chronic pain and subsequent sleep problems. It's a lot and it's expensive if you're not covered, but my god it is worth it. I could barely walk 8 months ago and now I can walk 7/8km. I'm exhausted at the end of it but I can do it! I can now swim 4 lengths of breastroke. sounds pathetic but I'm ridiculously pleased, as my HSD manifests significantly in my shoulders too.

I'm almost twice your daughter's age so she may react more quickly to the exercises! But every HSD/EDS body is different, so the treatments aren't one size fits all either.

I can also recommend accupuntcure and massage (though no limb manipulation - I learned that the hard way!).

I wish her all the best on this journey and hope she finds her way back to her favourite sport one day.

She needs to stay active despite the pain or her whole body will suffer in her 30s and 40s...once lost it is very hard to regain fitness. But not football - far too much impact on the joints. She needs to look at other low impact sports - swimming, walking for eg. plus start strength training if she hasn't already.

Codeine won't touch this level of pain - I am on tramadol.

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