How to manage my changing body?

Information about how to manage or reduce the severity of BFS symptoms

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How to manage my changing body?

Postby readytocheckout on June 28th, 2014, 7:35 am

Hi All

Well after 18 months and two EMGs, along with being told I don't have any MND, I'm now wondering whether this is all BFS mixed with anxiety and something else. It's the something else that has me wondering of course. The anxiety is much more under control these days, especially since my last clean EMG.

I have weakness and pain in my right forearm, and that combined with the twitching is making it difficult to use my hand for the finer things like using a PC mouse. Trying to move the mouse causes forearm discomfort, almost numbness and painful. Using the index finger on the mouse wheel causes a fatigue feeling in my forearm. And forget about trying to lift anything where I need to have my arm extended, even holding the milk jug under the coffee machine is painful in the forearm. Seems I've really done a number on my forearm for some reason.

But the twitching, well that's still there of course but it has increased in my feet a lot and I'm getting a lot more burning especially in my right foot. I have very fatigued legs and not much stamina for exercise.

I'm starting to wonder if the something else might be CFS or fibro. Early last year I was so stressed out thinking I had MS (suggested by my doctor back then) until my MRI results came back clear. Extremely high stress for about 3 months until I had the MRI, then when the MRI result came back clear for MS they told me they'd found a large cyst near a gland in my brain so of course off goes the stress again. I had to wait for another 6 months for another MRI to check that the cyst hadn't changed, and it hadn't. So now I'm again waiting for another MRI which will be in November to again check on the cyst, they said that if it hasn't changed then they don't need to see me again. But all this waiting and trying to keep the stress down and the what ifs and the ever changing symptoms of what is BFS plus I guess more is wearing me out and clearly can't be good for me, I can never relax. I'm stuck in a vicious circle of wondering if I've got something more sinister going on than just BFS. I was under high stress for a long period of time, probably about 12 months, I think I've written elsewhere that my nerves are fried, that's what it feels like.

So, about BFS, I asked the neuro who did my last EMG whether BFS causes more than twitching and he said no. But I've got twitching, burning, hand coordination problems probably due to a combination of twitching & carpal & forearm muscle or tendon problem. I have a heavy sensation over my face across my nose and above my eyes, that never goes away now. Can BFS cause changes to the body that might explain some of my symptoms? Thinking my swallowing problem was bulbar has had me on guard for every little sensation or change until my last EMG said no bulbar. Fantastic I don't have bulbar, but I do still have a swallowing problem and nobody can tell me why, no TMD, no thyroid problem, GERD managed with PPIs, the swallow problem is always in the same place with exactly the same feeling.

How to get myself out of this rut? My body really feels worn out and I'm in pain with sore muscles and joints and the twitching just makes everything so much worse. The forearm twitching feels so different to twitching I get elsewhere like legs or stomach, it feels scary sometimes and takes away control of my hands. Is BFS supposed to feel like this? I don't want to Google anything, just asking here for now to see if anyone has had experiences with maybe CFS or fibro or might have a clue as to what I might talk to my doctor about. Does BFS make it harder for you to do things with your muscles, I don't mean exercise fatigue either, I mean just day to day stuff.

I hope all this is making some sort of sense, I know I'm rambling on a bit here.
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Re: How to manage my changing body?

Postby raindog on June 28th, 2014, 9:02 am

Change your mindset. Be more positive and focus in something that stimulates your mind like a new hobby or take up a new sport that gives you some outlet and laughter
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Re: How to manage my changing body?

Postby SecretAgentMan on June 29th, 2014, 9:29 am

One of the most effective ways of changing subconscious thought patterns is hypnosis. Just once should be enough to notice that something positive took place, but repetition is usually required to rewire your neural pathways for long lasting positive changes. I'd suggest looking into it.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: How to manage my changing body?

Postby readytocheckout on June 30th, 2014, 7:34 am

SecretAgentMan wrote:One of the most effective ways of changing subconscious thought patterns is hypnosis. Just once should be enough to notice that something positive took place, but repetition is usually required to rewire your neural pathways for long lasting positive changes.


I'm just beside myself with worry and have been thinking about hypnosis, I don't know anything about it but I've gotta try something, nothing else has worked so far. This swallowing problem won't leave my mind alone, and lately more forearm issues affecting my hands has me really struggling to stay on the right side of a major stress meltdown. Small toes on my right foot are weird lately too. And a weird muscle pulling feeling on my face.

Either something is going on or stress and anxiety has cooked me (well done)

I've tried so hard with meditation, counselors, yoga, holidays, working, distraction, not to mention doctors and neuros and emg's but this fear just keeps on running my life. Maybe this is somatoform problem now.

It's the progression of symptoms that worry me. I've gotta do something constructive to get on top of this or I'll end up a basket case.

Thanks for your ideas.
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Re: How to manage my changing body?

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