Fightin’ talk so my ski-loving son can beat Ehlers Danlos pain

Son2 has just returned from a week's skiing to Italy with school. He went for the first time last year and loved it. Son1 also went but did not love it at all, so didn't wish to repeat the experience and in any case, he had his Maths GCSE to sit (second paper Thursday, wish him luck!)

sliing
Son2 on skis

Last year, Son2 had just been diagnosed with Ehlers Danlos Syndrome but the skiing didn’t seem to bother his joints much. Not so this year. He managed half a week on the slopes and then the pain kicked in.
The staff dosed him up with paracetamol and ibuprofen and he spent the last few days making full use of the free Wi-Fi on his iPad.

He managed to stretch out on the extremely long coach journey home – though at least he wasn't in need of an x-ray as a couple of the other boys were – but since then has barely been able to move his legs without crying out in pain.

It's hard, seeing your child in pain and even more difficult because of my own EDS pain and fatigue. As a mum, you're supposed to be the great protector, the mother bear, and so you just have to try your best to put your own difficulties aside, however bad you feel, so you can help your child.

Son2 is now quite a lot taller as well as heavier than me, so heaving him out of bed requires quite a bit of effort. Additionally, the extra trips up and down the stairs to fetch things for him as he is currently off school, triggers my POTS (postural orthostatic tachycardia syndrome) making my heart race and my body temperature soaring with every step. Sweaters are out these days and layering most definitely in!

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Don't mess with my boy, EDS

When your routine is one that is finely balanced to ensure a workable activity/rest ratio, any change can throw your body into a meltdown. But a mother's instinct over-rides any thought of what's best for you. If your child is in pain, you do something about it, or try to.

This morning involved a trip to the GP to look in their virtually empty bag of medical tricks to see what could help. I suggested a different painkiller that was duly prescribed and she suggested a physio referral.

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Fun in the Alpine snow

Ha! Been there, tried that! NHS physios are overstretched and do not have the time or the knowledge of EDS to do the kind of physio that he needs. It's pretty pointless saying to a child with both EDS and Asperger's to go away and do a set of exercises supervised by a parent who is also in pain with EDS. Net result = Not happening. I simply don't have the available energy to convince a reluctant teenager to do a consistent program of exercises that don’t make him feel good.

I had a community physio myself who made a real effort but when she was replaced on rotation, the new one immediately discharged me because I could only manage one of a set of five set exercises. She said when I could manage more to get back in touch. Errr, hello? How am I supposed to be able to do more without help from a physio? I tried to explain what was happening in my body but the answer still came down to doing the exercises that are not designed for someone in chronic pain. The kind of physio that is more likely to help with an EDS patient is more hands-on ultrasound and the use of a Tens machine at the very least to start off with.

So I am fed up of waiting. I am taking him later to a private physio and, having been told by another mum about the Great Ormond Street Hospital Rheumatology team, have asked Son2's specialist about that too which sometimes has an inpatient programme.

Son2 is 14. He needs to get to school so he can pass as many GCSEs as possible next year. That will be quite difficult if he's in pain. I have my own long-awaited pre-rehab appointment in a couple of days. I need to do everything I can to be fit enough to fight for my son to have a pain-free future.
I realise that's fightin' talk for someone whose desk is an over-bed table in case I need an urgent nap. Watch this space!

EDS Links:

RareConnect EDS  Community Forum (I am a volunteer moderator here, swing by and say hello!)

EDS UK support group (I am a schools advisor here, ask EDS related school questions)

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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7 Comments

  1. victoria

    We were given orthotics for my autistic son, needless to say he flatly refuses to wear them as ” they feel like bricks in my shoes” that was the appointment we had waited 9 months for! I’ll look into a tens machine though….

  2. Kerryn Goodwin

    I’m taking my oldest son to see Professor Grahame in February – any good for EDS? I chuckled when I read your comments on NHS physio! My eldest was referred to physio about 3 months ago – we are still waiting for an appointment! How is he supposed to do exercises when some days find him crippled with pain and hobbling along with a walking stick. He finds Naproxin helps somewhat with the pain, but we’re hoping for a difficult perspective from Prof Grahame. He has changed his diet too and cut out all sugar including fruit and he says his pain is less, but as with most ASD kids, he goes gung ho into the diet but rarely does he sustain it, so it won’t be long before we are back to the pain again.

    1. Tania Tirraoro

      Hi Kerryn
      Firstly I think I still have an unanswered email that you sent so many apologies! Secondly, Prof Grahame diagnosed my son and I and is the font of all knowledge and a leader in the field. He may well then refer your son to Dr Nelly Ninis as he did with us a specialist paediatrician, also wonderful.
      My husband just suggested a gluten free diet but sugar free may be better. Though I am not hopeful my son will for for either!

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