Navigating adolescent CFS

Nerve Tension June 18, 2012

Filed under: Uncategorized — parentingcfs @ 6:08 am

Today we saw our wonderful physiotherapist/yoga therapist again.

In particular we wanted to explore the possibility of nerve tension issues.

The latest Research 1st article had given us some more information on what to look for. It’s really worth a read but I will very briefly summarise the points pertinent to today’s post.

Basically Dr Rowe of John Hopkins in the U.S., in continuing his search for answers to help the somewhat abandoned ME/CFS population worldwide, has set up a study to examine the hypothesis ‘that some form of neuromuscular dysfunction may underlie CFS, an understanding that might also help us understand the connections between hypotension, tachycardia and nerve sensitivity.’

This hypothesis has come partly from the observation that “the classic CFS symptoms (fatigue, cognitive fogginess, lightheadedness, etc.) often seemed to get worse after a physical therapy evaluation that strains muscles and nerves. Even raising the leg of someone who has this subtype of CFS can make symptoms worse, sometimes for up to 24 hours.”

As I may have mentioned previously, I have heard of a girl in the U.S. who has recovered substantially after physiotherapy under Dr Rowe’s guidance, where nerve tensions issues(amongst others) were addressed.

What we found today was that our girl has significant nerve tension in both legs and her right arm. Our therapist, M, was particularly struck by the lack of movement in our girl’s right wrist.

As you know our girl is of the tall, slim body type and has grown at a tremendous pace over the last 2 and a half years. M said that this nerve tension could be linked to growth, deconditioning or directly from the illness…if I understood correctly. I will send her a link to this post so that she can correct me if necessary! Whatever the cause our girl can do some very gentle exercises to help herself.

M had previously asked our girl to think of a goal. Today our girl announced her goal would be to be able to play piano again. She finds she gets too tired from sitting at the piano to practice adequately so has given up every time she has attempted to restart this beloved pastime. M has linked the nerve gliding exercises in with piano practise. Our girl is to practise for a minute or two until she feels ‘bad’ then lie down in various positions and with some different movements for 5 minutes, then practise again and chart it all to see how it goes. (Obviously the OI is something that is being addressed here too, aided by the Florinef)

It all makes sense to me and our girl seems to think it sounds ok so we will see. We will hope that our girl fits in to the subset that Dr Rowe says ” almost always stick with (this kind of) physical therapy because it makes them feel so much better.”

I sure hope we’ve, at last, found the RIGHT physical therapy. I’ve got a good feeling that this is another significant part of the puzzle. Dr Rowe is THE BOMB!

No doubt my precious girl would tell me off for attempting to use slang but I can think of no other words that adequately some up my gratitude and admiration for this doctor who has stuck by ME/CFS patients and continued to search for answers.

Hope you’ve found some answers for your life today.



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