Navigating adolescent CFS

Theory #4539 but it works for me! August 9, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 7:30 am
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After the darkest hour comes the dawn….

Yesterday was an extraordinary day. I started with the emotions of my previous post and finished with a whole lot of new knowledge and support that has filled me with hope again.

I’m going to try to explain the theory but please bear with me as it’s all very new to me and I’m just getting my head around it but want to share it with those of you who need information asap.

Please remember I am not a doctor, in fact have no scientific qualifications beyond Year 12 Human Biology where my favourite chapter was the one on evolution because that was like History!

Ok here goes. As I understand it the theory is that:

a) the underlying genetic predisposition is ‘lax’ (I think that’s the right word) collagen

b) my daughter IS possibly hypermobile (pauciarticular which just means one joint as far as I can gather?)

c) her rapid growth spurt…probably combined with an increased swimming load…was the trauma that triggered the lax collagen to become an issue

d) the issue is something to do with there not being enough room in the  thoracic cervical spinal canal for the nerves to operate properly. This triggers the ANS dysfunction.

The physiotherapist demonstrated the problem in my daughter by

– raising her legs one at a time when she was lying flat. Her right leg reached 45 degrees, her left 35 degrees. He then had someone hold her head so that her neck was relaxed then move it towards her chest so it was in flexion. It opens the spinal canal to allow more room. At this point he raised her legs again and they moved to about 70 degrees. (Please be very careful if you try this at home, my description is not technically accurate)

So, as I understand it the plan is to exercise WITH THE NECK IN FLEXION (or however it’s properly phrased!) The aim is to retrain the system. He uses pilates techniques. I don’t think it will cure her but it should allow her to get stronger and start exercising again.

Sorry for my very laywoman description. I will try to improve this post when I get my head around it better. I just thought you’d like to know about it sooner rather than later. The physiotherapist says the problem is this simple and there is too little funding for research/education because no drug company benefits!?!

We are seeing him again today so that he can see the impact of what our girl did yesterday and set up a program. It’s nice to have some practical support and A PLAN! Some of you will know how long I’ve been looking for a very basic careful exercise plan for our girl that takes this condition, whatever it is, into account. This may be it!

So, what do you think? Did you know this already? Do you think it is only part of the problem or the cause? Does the theory make sense for your child or for you? In adults the trauma trigger could be many things…although I don’t get how a viral trigger would impact on the spinal canal? Anyhow here it is, we’re going to run with it for now!

Oh and I just wanted to say to all the lovely people who have contacted me online or otherwise this week and offered words of kindness, thank you. It means so much.

Smiling and waving again!



8 Responses to “Theory #4539 but it works for me!”

  1. Janet B Says:

    Wow – I have ever heard of this. How wonderful to have a physio who understand this. It is great to be actually doing something that can make a difference. So happy for you!

    • parentingcfs Says:

      I think it’s really a bit of a breakthrough for us Janet and yes I’m excited! Believe me, if it works on my girl I’ll be trying to get the info to everyone and your physiotherapists asap! Thanks for sharing my (hopefully not premature!) happiness!

  2. Deborah King Says:

    Annie, this makes a helluva lot of sense to me. Thanks so much for posting this. I think my daughter is hypermobile – but just where her legs join to her pelvis (do legs join on to the pelvis – is that right??) because she can lift them over her head. She couldn’t do this before puberty – it is since she’s experienced a huge growth spurt and entered puberty big-time. I’d love to be able to read up on this and possibly see some diagrams of how the exercises work – or even better a webinar or a video explanation with real people demonstrating the moves! I find it hard to picture the exercise in my head. But so looking forward to hearing how it works for H and wishing you all the luck in the world.xxxxx

    • parentingcfs Says:

      Yes yes Deb, that’s hypermobile for sure!!!! And I always wonder if the extent of the hypermobility is partly what dictates how sick they are originally??? My girl is not very hypermobile and her symptoms have been comparatively mild….which doesn’t mean much with this illness but… I will add links as soon as I can find any good ones. Might be worth looking for any physios that specialise in JHS as there are no videos/instructions yet that I’m aware of. As you know this is the stuff I’ve been looking for since hearing Michelle talk about Christina. For now you could maybe encourage N to not tilt her head back if she can help it. (This usually narrows the spinal canal as I understand it) I’ll try to get more to you soon. Just remember there are some unusual cases where the flexion/extension rule is the opposite, so if she seems worse with her head tilted forward she could be an exception. And I’m not a doctor/physio so please don’t try this based only on my comments!

  3. Sue Jackson Says:

    Annie –

    So, this sounds just like the PT studies Dr. Rowe has been working on, right? In fact, he has a study in progress that involves the kind of leg raises you describe here.

    It is wonderful that you have found a PT who seems to understand – I hope this helps H!!

    Let us know how it goes!


    Live with CFS

  4. Adrian McGough Says:

    Annie, I pray this works. I’ve often suspected a physical/mechanical problem for my daughter’s symptoms due to the coat-hanger pain she has in her neck and shoulders (typical of EDS I believe).

    • parentingcfs Says:

      Thanks Adrian. Has your daughter been diagnosed with EDS? I hope you’ve found something helpful for her. I will keep posting and let you know how it goes. Best wishes

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