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6 months in - this thing is going to annoy me to death

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6 months in - this thing is going to annoy me to death

Postby TwitchfinderGeneral » Tue Jul 26, 2016 12:57 pm

Hi all,
I was diagnosed relatively recently and so I suspect there's a lot for me to find out about this exasperating syndrome. I don't really want to burden friends and family with my trials and fasciculations, so I'm unloading on you lot! Perhaps I can contribute a little to the group knowledge.

Me: Male , 46 , UK
how I describe my symptoms to friends and family: "Imagine that your body feels aches as if yesterday you ran a marathon, Now imagine drinking ten large strong coffees. Now imagine that somebody has attached a TENS unit to your arms and legs. That's the combination"

In case it helps anyone here, researching and comparing - Here's my history with this thing.

January 2016 - The first signs
I noticed I was feeling strangely weak getting out of chairs and lifting things which ought to be easy. I thought "I should probably get back in shape" (nothing more)
In early Feb 2016 I had a weird kind of a flu, one which didn't break into a fever yet left me feeling very worn down. I remember telling everyone how strange it felt, an odd kind of illness. As the illness faded I noticed that my right thigh was oddly tense as if I had engaged in a hopping marathon and over the next few days rather than improve it got much worse. The thigh started to spasm visibly and simple things such as walking up my house stairs were so painful I needed to rest part way. For the next two weeks I spent sleepless nights in twitchy confusion and anxiety.

March 2016 - Dr Google will see you now
As anyone reading this knows - the next step is to get your misdiagnosis from Google. I feel that it's worth mentioning the dread spectre of THE DISEASE I DON'T HAVE here just so this forum is amongst the results for anyone who is worriedly googling twitching, spasming, fasciculations or muscle cramps. You may be surprised to read that I was firmly backing Hypocalcemia myself .
Well, I promptly booked myself in to see a GP and got a huge range of blood tests, my calcium was normal and my vitamin D was at the usual dismally low level for my geographic region. I took oral D and Calcium supplements and wandered off, hopeful the supplements would work.

April 2016 - Time to see a Neurologist
My twitching had spread. Tapping on the arches of the feet, twitches on the left leg, in my calves, in the lower back, in my arms and forearms, I developed an annoying involuntary nod which helped to wake me up if I ever got to sleep. My hands had lost some dexterity and precision, I was becoming clumsy and my mental focus was lacking. I started visiting the GP once a week and was referred to a Neurologist.

May 2016 - Neurology
It was mainly a physical check, strength and reflexes with some blood tests for B12 and the Potasium channel test, and also Creatine Kinase.
The visit was a good one, the Neurologist didn't rush me and asked me what I thought it might be (obviously expecting THE DISEASE I DON'T HAVE) I reluctantly told her I thought I had BFS. She almost high-fived me. She said it was more likely the fasciculating cramping version. BCFS.

June 2016
My creatine kinase levels are 580 u/L . I have no real idea what this means other than it's higher than a non-twitcher would have (40-320u/L) and it's a sign of muscle tissue breakdown but not unduly worrying in itself (normal for BFS sufferers). My Neurologist has booked me another sample to be taken in August so that we can plot a bit of a graph. I will see her again in September.

July 2016 So, my thoughts.

This ailment is very poorly understood and that's exasperating. My interactions with medical professionals have been great, but it's obvious that the psychological impact is not factored in to their assessments - it's seen primarily as a non-fatal physical annoyance. Understandably in contrast to the more deadly neuro-ailments. But the psychological toll is like sandpaper. Like a small dog which never stops barking. It has changed my life for the worse and TBH that's the most difficult part of this thing.

I'm quite analytical and can usually figure out a method to ameliorate bad situations, but with this beast it seems there's so little to go on, and the classification of BFS covers such a wide area, like a cloud, it's impossible to find much to work with.

I will be testing out a bunch of things and will report back here.
I've already stopped being vegetarian (after 30 years! ) Because I think I now need the protein to combat the CK situation. I am dosing myself with magnesium at night to aid sleeping. also I drink quite a lot of Quinine soda water now. But my coming experiments with supplements, hormones, and even psychedelics can come later.

For now ... Hi

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Re: 6 months in - this thing is going to annoy me to death

Postby Hellothere » Wed Jul 27, 2016 2:15 pm

Hi twitchfindergeneral , great name by the way , it did make me laugh ! Thanks for sharing your story , sounds like your bfs was triggered by a virus , although you are finding your symptoms bothersome , all credit to you as you seem to be dealing with things pretty well , although it may not actually feel like it sometimes, it is psychologically draining though I know . Hope the different things you are trying have some benefit . Do you find certain things make your bfs worse ? I know heightened anxiety, lack of sleep and too much vino makes mine worse , especially the cramping .
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Re: 6 months in - this thing is going to annoy me to death

Postby TwitchfinderGeneral » Wed Jul 27, 2016 6:59 pm

Hello Hellothere, thanks for your comment.

I've found that coffee/caffeine certainly makes my symptoms worse, and also becoming too tired, or stressed. Consequently I have taken coffee completely out of my diet and tried to get a nap every day when I can. I'm fortunate in that I work from home so I can determine my hours to some degree, and simply tell my clients I'm going to be "in a meeting".
I'm sure I will discover other triggers but so far these are the obvious ones.
I try to maintain a positive attitude, but of course at this stage it is difficult to stay upbeat as each new realisation of my symptoms and newly found limitations can set me back for a while. I have become clumsier, so each dropped pen or stubbed toe is a regular reminder of The Wrongness. But everyone has a cross to bear, as the saying goes.

What gives me pleasure is being in the moment. Today I walked in the park, there were dogs there and small children laughing. I focus on what is happening now, rather than what might be waiting in some un-knowable future which even the neuro-experts can't predict or understand.
Will my CK levels be the indication of something terrible? Is there an unpleasant demise waiting for me? Nobody knows that. It is statistically more likely my condition will remain exactly the same - but even that assumption is meaningless. The future is simply unknowable and so it's pointless for me to anticipate it. What am I going to do, build a fortress?

So in the absence of information I try to avoid dwelling on what might be and just enjoy what I have. Each day as it comes. Twitchilly. With regular naps.
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Re: 6 months in - this thing is going to annoy me to death

Postby Hellothere » Fri Jul 29, 2016 1:50 pm

I cut caffeine out too , but so miss coffee , sick of red bush tea! Had a coffee this morning and my foot twitching is definitely worse ( dam!) you are right that no one can predict the future , and that's the same for all manner of things , but we live our lives with some perspective on the what if's ( though I find that difficult to be honest as I have health anxiety) , the reality is we can't spend our time thinking what if I get cancer , die in a car crash etc which are statistically much more likely than getting some neuro nasty . Your approach of living in the moment is a great one, and one I'm trying to adopt myself . Have tried mindfulness but find it very hard , about to start a course called acceptance and commitment therapy which is about accepting the things we can't change and commuting to the things we can ,worth ago . You are 6 months in with this , so many things are in your favour with this being exactly what you have being diagnosed with , although bfs symptoms can change even worsen sometimes I think the thing in our favour is it tends to wax and wane , many people report improved symptoms after a time, especially when anxiety reduces . Over a year later I still have my symptoms , get twitches in new places , but have had improvements in other stuff like internal tremors , aching , body jolts etc. hope your symptoms improve over time . Try to keep positive as hard as that is .
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