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My appointment yesterday pls read

PostPosted: January 10th, 2012, 8:26 am
by chrissi
..No, not a neuro. I had 8 neuros (in hospital there was a whole group of then) or so telling me that -whatever I have-will not kill or disable me and one that said the last thing he would do is to try some more meds on me...(after my allergic reaction), I guess I am done with neuros...

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 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 :shock: )

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 8:37 am
by Simonaa
Crissie you are the best;)
Let us call in 2Weeks;)
Is this Okay for you??
Please let me know:) :) :D :D

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 9:21 am
by plainslady

Great post! I have never been told I hyperventilate per se, but I have been told I am a very shallow breather which causes me to take more respirations than normal. I also have a tendency to hold my breath for long periods of time and tense my muscles up.

My weirdest sensory symptom has been just as you said; a sudden change in perception of things around me. I have gotten to a point where I wear sweatpants or yoga pants all the time because jeans or any type of abrasive material make my skin ache and burn. The outside of my skin feels sunburned and deeper down there is a gnawing burn that intensifies and then passes many times throughout the day.

The same goes for my feet. 90% of the time I am in my house slippers. I even have an extra pair that's a little "fancier" that I wear around town to run errands in. I do this because my feet cannot stand to be "squeezed" into a pair of tennis shoes. Mind you, my feet have not grown and these are the exact shoes I was wearing before this mess started, only now I cannot tolerate them.

My doctors have all mentioned that in all likelihood I have fibro. Both my neurologist and my spinal specialist strongly hinted at that. My twitching is down to bare minimum now that my stress levels have dropped, only the flare of pain seems to linger.


Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 9:38 am
by chrissi
I also have the tendendy to hold my breath and tense up my muscles, so I thought I was rather a candidate for hypoventilation than hyperventilation, but my blood gas showed I really hyperventilate. I know I breathe fast but I thought not deep enough, because sometimes I have the feeling as if I do not get ENOUGH breath instead of to much :shock: Fact is that your body needs enough CO2 to gurantee a good exchange of Oxygen along your body, and so if your co2 level is too low , the oxygen supply of your muscles is bad.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 9:46 am
by plainslady
I also wanted to add that my various doctors find it amusing how when they reach out to examine me I automatically pull away and tense up. I don't even realize I'm doing it, and no matter how hard I try I can't make myself stop. It's ingrained in my brain, I guess. Same goes for anyone else attempting to touch me. If they succeed before I pull away I have a tendency to say "ouch" even though it doesn't really hurt. Do you know what I mean?

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 9:49 am
by chrissi
Yes, it is being hyper-aware of everything. I always pull up my shoulders and tense up , even when my hubby is hugging me. After a long talk yesterday I know now where from this pattern derives for me. But everybody can have his own issues to bring him there.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 10:55 am
by Race
Hi Chrissi,
I am really happy for you, you found a good doc and a possible way to calm your symptoms down. I wish you all the best for your therapy and that it will work for you. Enjoy your massage therapy :)
All the best

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 11:01 am
by Jujulia
Hi Chrissi,

First of all, thank you so much for sharing all that stuff with us. His theory about the "filter", or whatever it is, is basically THE theory that explains fibromyalgia. Now, of course, we can believe it or not. There is so little real scientific information about it. We don't know for sure the real causes of fibromyalgia or if it is a real syndrome per se. However, chronic pain does exist, and we can live a very long life with it, but then again, no one knows WHAT causes it, especially when all the tests and blood work are fine.

The CO2 theory makes some sense because, for example, we all know that when we have a hiccup (which is a myoclonic jerk affecting the diaphragm), holding the breath usually stops it (because of the CO2). Next time I have a hot stop I'll try to hold my breath just for fun, but honestly, if that technique helps a bit, in the end I don't think stopping breathing is a panacea :D

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 11:13 am
by Silverbullet
I am really pleased that someone is finding something that works for them. Somatization or sometimes known as conversion disorder wow! sounds you found a great bunch of specialists there. Sounds like a programme of desensitisation and low arousal. I wouldn't mind some of that for myself :-)

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 11:15 am
by chrissi
LOL, no I agree, I think it will not be a good idea for us all to stop breathing LOL. The doc actualy said I do not have a full-blown typical fibro so far. I have a somatisation disorder (not an anxiety disorder, although especially in the beginnings it causes anxiety attacks), which later may develop into a real fibro. Or just stay that way, or get worse, or eventually will go away when I learn to calm me down. He said psychotherapy is very limited here because although our mind will understand that this is harmless, it is much harder to calm down our body. And calming down our mind is NOT NECESSARILY followed by our bodys calming down. This is why some people suffer from long-term somatisation disorder and just learn to live with it. Which is not really bad because this will not kill us, but is a real nuisance as you know. He also gave me a warning for me anedyou guys: any medication ESPECIALLY all antidepressants have to be used very very careful in people with this disorder. Very low dosages and very slowly started, otherwise the symptoms will freak out. We are much more prone to getting all the weird side effects of those pills. He uses one of them, amytryptillin, but only in 1/4 of the dosage used in "normal" treatment of anxiety depression. And even in these low dosages there are lots of side effects if they increase dosage too fast.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 11:44 am
by plainslady

VERY INTERESTING what you say about antidepressants. I was having some pain symptoms along with some twitching before my GP started me on Cymbalta. The pharmacist noted at the time it was a large dose to start out with but filled it anyway. I took it for a couple of days and that is EXACTLY when my twitching went from minor to widespread and frequent.

I would love to be able to get off of SSRI's. At the time I was put back on them I told my GP I felt like my pain was causing my anxiety, or at least aggravating it. ( Does that make sense?) I had been hurting for three months at that point and was at my breaking point.

Now my pain and twitching most definitely come in cycles related to my stress levels and physical health.

This is really quite fascinating!

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 11:45 am
by MarioMangler
Awesome post Chrissi. This is the kind of stuff I have been saying for about four years but you (and your doctor) summed it up much better than I ever could. The key to BFS is all in your breathing. You have to learn not to be in high arousal all the time. Because like you said, anxiety leads to shallow breathing, which leads to less oxygen, which leads to a body in panic mode. And then it just goes and repeats itself.

Once you see BFS for what it is, it is pretty easy to deal with mentally. But like you said, yeah actually getting your breathing and your relaxation to have an effect on your body, well that's a whole other story. It takes a long time to get back to normal because it took you a lifetime to get here. So the key to dealing with BFS (or "it") is breathing, mental strength, relaxation, and patience. Lots of patience. Lots of it.

And above all else, NO MORE DOCTOR VISITS! Only sick people go to see doctors all the time. Remember, we aren't sick.

Thanks for the great post Chrissi. I think the moderators should sticky this one, it is a keeper.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 5:19 pm
by MissBehavin
This is very interesting information Chrissi. I read the wikipedia information, but it sounded a little "less informed" than your doctors. The article actually suggested shock therapy- who the heck does that anymore? I know I breath very shallow, and I know my issues came to light during a time of extreme stress. I also have a history of anxiety that first reared it's ugly head when I was about 15. Good luck to you and keep us posted.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 5:31 pm
by chrissi
Well, they will so some kind of "shock" therapy to me too, but I guess in a different form than what you consider as that. They will use hot/cold treatment for that.

Re: My appointment yesterday pls read

PostPosted: January 10th, 2012, 6:26 pm
by Jujulia
Chrissi, I can't wait to see if this therapy works for you! Also I have to agree with you and your doc about antidepressants. Besides, all good pharmacists will tell you that it's not a good idea to treat physical pain with antidepressants (because it's not resolving the problem, it only masks it + they are addictive), even though it seems to be the only medication our western doctors know to treat about anything.