Joint Hypermobility Syndrome is now called Hypermobility Spectrum Disorder, since new diagnostic criteria came out in 2017. As the name would suggest it varies massively in severity and for some like my ds, who is at the severe end of the spectrum, it can be a multi-systemic condition that affects just about every system in the body. If you are being told it’s JHS, that tells you that the professional involved is not up to date with the condition or it’s treatment. Likewise if they tell you it is just joint pain that he has to learn to live with, find another professional with a better, current understanding of the disorder.
It’s worth noting that EDS UK now support people with HSD as well, since the criteria for what used to be EDS 3 (Now Hypermobility EDS or HEDS) has been tightened up a lot (my son was just one point off a HEDS diagnosis, despite other family members have a clear diagnosis).
Rheumatologist that are not up to date will often only carry out a quick Beighton test to see if there is any hypermobility, but fail to realise that the hypermobility can be most pronounced in areas outside of that narrow assessment. The new diagnostic criteria addresses this issue.
Decent orthotics and gentle, progressive physio with a senior level physiotherapist who is up to speed on the condition and understands the best way to work with patients who have it is vital. People with HSD decondition very quickly and it can be a very long, slow, painful road back to full strength. My son ended up deconditioned after multiple injuries back to back and poor advice from orthopaedic consultants. He has been having physio for about 18 months now and is still classed as having global weakness, but is a million times better than he was this time last year. Unfortunately they do have to keep going through their physio when exhausted and sore in order to rebuild their strength, because they need stronger muscles to support their joints where their connective tissues can’t. The trick is to modify exercises and exercise plans so that they can keep going, even if it has to be to a lesser extent for a while.
My son has had dry eye issues and was on false tear eyedrops for a prolonged period. It’s worth getting him checked for blepharitis, as if the eyelid glands can’t lubricate the eyes properly you will get dry eyes. Blepharitis is common in HSD/EDS and often just requires daily lid cleaning to manage it.
Re the tightness in his lower body. My son is very hypermobile through hips, knees, ankles and feet, but had extremely tight hamstrings on examination. We were told this was his body’s way of trying to compensate for the hypermobility in his joints and stabilise his body. Again, this is fairly common with HSD and EDS. He was always accident prone and constantly rolling his ankles, but started to get increasing problems from the age of 8. Then, when hormones kicked in in secondary he started to dislocate and developed lots of the multi-systemic issues. If you can, get him going with a good physio now to build up his muscles, as this will really stand him in good stead when his hormones start to kick in. Swimming and/or Hydrotherapy are also really good.
We haven’t had the problems others have mentioned re NHS Orthotics. We paid for private ones initially but it wasn’t financially sustainable with the level of correction my son needs. He is now under the orthotics department of our local children’s hospital and they have been brilliant. They have worked with him with different types of orthotics to try and get his support right and are now planning on providing him with bespoke Dr Marten boots with built in orthotics.
Sadly it’s also common for people with these conditions to be really struggling but have all their test results come back as normal. Two of my dcs are going through this at the moment and their drs are yet again perplexed as to the underlying cause for their symptoms.
Do have a look at the HMSA and EDS UK websites as there’s lots of information out there that might help.