Vestibular and balance disorders are another of the many co-morbid conditions that are often associated with Fibromyalgia.
The vestibular system is the parts of the brain that assist with balance and eye movement. It’s the system that allows you to move your head while walking and not fall over (most of the time). It is also the system that will cause motion sickness and can be responsible for feelings of dizziness.
The prevailing theory behind motion sickness is an incongruity between what the inner ear is sensing and what the eye is seeing. For this reason it often helps to look out a window in a car or at the horizon when on a boat.
I used to be one of those annoying people who most of the time could read a book in the car or hop on a boat without the slightest twinge of sickness. Since the FibroTroll came to stay, this is definitely not the case anymore.
I get regular dizzy spells, or “head spins” when I stand up. I usually get nauseated if I’m in the car for more than 20 minutes – sometimes from the moment it starts moving until an hour after it stops.
For my mother’s 60th birthday we went whale watching and Oh My Goodness, that was an experience! They are simply the most amazing creatures and fascinating to watch. Unfortunately, it just wasn’t enough to stop the horrendous seasickness from taking hold. I failed to get any really impressive pictures as I spent much of the trip vomiting into those little bags.
Having issues with my vestibular system also affects my balance. I can no longer safely climb a ladder or even pick something up off the floor and stand straight back up without having something to hold onto while the dizziness passes.
I’ve had all the tests, and with the usual results for someone with Fibromyalgia, that is, nothing abnormal showed up. Even my MRI showed a perfectly normal brain – much to the disappointment of my brother, to whom I can now prove that not only do I have a brain, but it is normal! Ah sibling love, it’s one of the best kind 🙂
So my GP referred me to a vestibular physiotherapist. I had no idea such a specialist even existed. I had no idea what to expect, but I figured I would give it a go.
She was a pleasant lady, who seemed as though she really knew what she was on about. She ran through some testing of my balance and moved my head while I looked at a stationary spot and a few other tests. She gave me some exercises and patiently walked me through them so I knew I was doing them correctly. She included print outs and little laminated cards to do the exercises at home. To start with everything went well.
But as with many things, I pushed to hard. I so desperately wanted to get better, even if it was just this one thing, that I did the exercises. I went straight from none of them, to all of them, the number of repetitions she told me to do, and the number of times she told me to do them. And I triggered a flare. I also managed to get sinusitis and an inner ear infection, which made doing the exercises incredibly difficult and even painful. So I stopped. I went through a lot of guilt about not doing them and kept trying and failing. I now realise that I was also struggling with depression.
I’ve learnt a lot about myself and about pacing since then. My regular physiotherapist, Bobby-Jo (who I talk a little about here) is much more understanding about the FibroTroll. She doesn’t want me to upset the FibroTroll any more than I do. She gives me very simple exercises and she is always happy if I have managed even one rep a day. If I have done more general exercise and don’t do her specific ones, then she is also super encouraging about that. I have complained about set backs and she gives me just the right amount of sympathy – then points out that six months ago, I struggled to do one rep a day of each of the exercises, now I do 3-8 reps, sometimes multiple times in a day. And if I have to drop back to 1 rep after a flare, then that’s ok, but I’ll probably build back up faster than I did the previous time. And you know what? – She’s right. The other thing that Bobby-Jo reminds me of is that:
Progress at a crawl is still progress.
So, with that in mind, I’m going to dig out the print outs I have from the vestibular physiotherapist. Only this time, I will start with one exercise, once per day and build up from there. And hopefully, in the months to come, I’ll build up to the number the vestibular therapist wanted me to do – and then I’ll feel brave enough to go back!
