I saw the specialist for fibro/CFS/somatisation diseases.
And he was so impressed by my symptoms that he called another collegue in to check me and look at the results of my tests. He said this is just the most typical case of a somatisation disorder /early beginning of Fibro. My tremors, my twitching, my weird symptoms, my history before BFS, the way of my BFS beginning....like written in textbook ( they were apologizing all the time that they were not that excited and happy to make fun of me, but because it is so typical).
Well, all my symptoms I just wrote down in my other thread, but here are his explanations:
It is not an anxiety disorder.But those conditions usually strike people that are very sensitive long before BFS sets in (he doesn't call it BFS though, he calls it "it"). It is often based in childhood, like growing up with parents that are very anxious themselves about stuff happening to their kids, or with cruel/choleric/alcoholic parent(s). Or people that have had an anxiety disorder before it sets in..
Take the child that grows up with a choleric dad..this child will become very sensitive to everything around. It will grow huge antennas for moods of other people, will listen to the steps on the stairs and try to tell from the sound of everything is OK or if dad is about to freak out again. Every single sign around will be soaked in, to tell if everything is "safe" or not. So the nerve system becomes aware of much more things than the nerve system of "normal" people. Same happens to people with anxious parents , they will feel the world is "unsafe" and be aware of everything around or people with an anxiety disorder.
So basically we all start with huuuuuuuuuuuge antennae. Often this people have somatisation probs before, like vertigo, Irritated bowel syndrome or pelvic pain disorders. It is a fact that every single place in our body sends continous signals to our brain. Like when we are wearing clothes, our skin sends that signal to our brain all the time. Or the movements in our bowels, everything is sending out signals. But we have a "filter" set before our brain, that inhibits those inputs, so we do not "feel" our clothes all the time. Or so we do not get startled by noises. Or by sudden touch. It calms our bodys down. Those inhibitory cells are also responsible to calm our reflexes down. But somehow we tought our bodys to lower that inhibition. So we are in a high state of perception. And then something gets our bodies to "overdrive", we almost completely take away our filters. This often happens after a stressful period or after a disease (he seems not to believe in the virus-stuck-in spine theory, but that any disease can kick our bodies into that state). People with a normal basis will get some of the symptoms, like some twitching, some pain, but it will calm down very fast. People with that damaged-filter will have sent their perception to overdrive. It is like babies that are learning everything new because they are born without those filters(they develop them with time). So suddenly we feel things, feel our body parts in a different way that before. When we walk, we get inputs like feeling our bones or that we have to concentrate on walking because everything feels new. Gait can be insecure. Bad feedback from our hands and feet.We will feel burning, tickling , buzzing, hot, cold, invisible hair feelings because our body is sending signals like usual, but our brain is getting all those inputs it is not used to and gives them "names" because it is confused. Our whole body gets into a "defense" state and we are tensing our muscles a bit, not to feel from outside. Our muscles will start to twitch and we will feel vibrations never felt before. I never knew it before, but he said most people with "it" breathe way to fast , so we have way too little carbon dioxide in us.Called Hyperventilation. This gives our muscles the creeps, they get into a "twitchy" state. I was kind of sceptic, I never thought that I breathed to much. Now they measured my CO2 level and I was stunned: normal level of CO2 should be around 40%...mine was..21,5%!!! Fasciculations are a very typical side effect of chronic hyperventilation. Together with parestesias and muscular pain(ex intolerance). And now the vicous circle starts....those symptoms make you stress, stress even lowers your nerve filters, symptoms get worse, you increase you breathing, CO2 drops, fasciculations through the roof, muscular pain, exercise intolerance as muscles don't work right under these conditions.
Then they made me hyperventilate even in a "safe" surrounding......extreme hyperventilation and I had an explosion of twitching, pins and needles, pain and dizziness in my body, it was like fireworks going on....then they gave me CO2 and it calmed down. I was really impressed. They said it is possible to calm all that down if you are able to meditate with good breath control, but as soo you come out of your meditation breathing pattern you will fall back to wrong breathing immediately and your back to state 1.
So what they are now doing is..
---I will get a breathing trainer and have to practise breathing at home too
---I will get all kinds of relaxation stuff like massages etc(jippie!!!!) to cam my body down and
---I will get a programme to toughen my body, so my "input" thresshold will be increased again, including hot/cold-chambers (minus 176°F..uaaahhh)
---learn relaxation techniques
That is about it. It was kind of eye-opening to me, especially my wrong breathing habits (I never knew I was breathing wrong , to me it all felt normal. Well, but now I know why i do not twitch when I wake up in the morning but after a few secs I start to twitch...I apparently breathe right while sleeping).
I will start my therapy programme there within the next months (it is a 2-weeks full-day programme so I have to get all the stuff with my kids managed..). I just found out I can stop a hot spot by holding my breath
)
