Chrissi's Therapy diary

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

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Chrissi's Therapy diary

Postby chrissi on January 31st, 2012, 12:32 pm

Yesterday I started my therapy I have already told you about. It is called "multi modal" therapy because it has different ways of treating my BFS. Astonishing to me: although anxiety is part of this syndrome (like depression in Fibro), I am not having psycho therapy, although my doc is a psycho therapist. He said the ability of any psycho therapy to treat these somatisation issues is very very limited, because the symptoms are very physical and not psychological and other factors play a role like virus/genetic predisposition etc. And although some anxiety or stress or often bad childhood experiences ( he pointed how much a caring environment without anxiety or pressure and with lots of body contact between parents and children is necessary to develop a stable nerve system and also a stable gut system, I just wanted to mention as we have so many parents here and this really made me wonder if I give my kids enough "physical" feedback of love), you cannot easily repair the stuff going on in our body be calming down our mind. So they are doing

1. exchange in diet. OK, that sucks. Really...damnit it is really gross. I described to Matt what I am allowed to eat and he called it slop, so you might know how it tastes...and now: imagine without sugar... :roll: I am really fighting to get it down. The reasons for this are various, basically all those disorders are also closely linked to our guts. Logically, as the gut nerve system is the largest in our body. So without any filter to inhibit input to our brain, we get permanent information from our guts to. Brain gets messed up, sends weird answers, we get IBS or just gut rumbling and stuff like diarrhea. This is again sending information to the brain, we feel gut pain, and this is again messing up our whole nerve input in the brain. Just tooooooooo much information. We feel things like nausea, our gut muscles are getting uncoordinated, causing maldisgestion and stuff. Well, not very nice, many of us know. And addtional to that, the hugest part of lymphatic system is linked to the guts (because it is produced there). If our guts are irritated ( If we feel or not) there will be more lymphe produced than reabsorbed, so we can get swellings . In slim persons they are often not much visible but feelable, because their skin is tighter to the bone. So the skinnier you are, the less lympe stuck in your tissue is needed to give you weird sensations and pain. Especially often in legs. The tissue gets all wobbly soaked with this lympe, and even nerves can get squeezed and cause symptoms of all kinds of entrapment syndromes like ulnar, carpal, piriformis, well, all that stuff.

2. breathing therapy

well, if you google hyperventilation and neural hyperexcitability /twitching/ spasmophilia you will understand. I did not believe I was breathing too much, I actually thought I was NOT breathing enough. Well, my CO2 levels showed the opposite....and air "hunger" , the feelings you cannot breath "deep enough" are really a symptom of hyperventilation. So low CO2 levels cause twitching,tremors, high muscle tension, the tendendcy to cramp, crampy stiff feelings especially in hands and....extremely brisk reflexes. In some cases even up to clonus and hoffmanns.

3: relaxation

That is the nice part. I get all kinds of massages to loosen my tightened muscles and tissue . Especially helpful I found the cupping. Because it helps to transport the lymphe back to the heart where it will be added to the blood system and then go to the kidneys. The first time I had it , I had to pee every few minutes for an hour or so...but it did wonders to my arms and legs , regarding that "pressure pain" feeling of bad circulation in them.
It is a quite simple technique and I have got equipment to do it at home now.

4. building up resistance

that is the hard part. But to get our nerve excitability back to a normal level, this is an important part. This includes sports and hot/cold chamber.
I am training on a vibration plate to loosen all those tightened and stressed muscles and tissue and to build up muscles. So believe the oldtimers and work out:)

5. sleep

Most of his patients have sleep problems, not so much with falling asleep but more with staying asleep or reaching all sleep stages that are required to feel awake and fit the next day. He put me on 1 to 5 drops of amitryptillin (about 1/10th to 1/20th of the disage for depression) to help me regulate my sleep, and it also calms down the guts

Anything I forgot? Oh well, yes, physio therapy to improve my balance /perception. I have all kinds of weird perceptions when walking, some felt instability, and some vertigo. So they are helping me to teach my brain to "filter" right again, so I get correct input from my feet and my stability increases.


Actually although he apparently sees twitching patients a lot, in many it is just a side effect of all that other stuff going on. On his website he calls those permanent fasciculations "benign but very irritating". I thought this was the understatement of the year until I met other patients there that had much worse probs than the twitching, they did not even consider it a problem compared to the other stuff..... I will give a short feedback every day in here



Day 1: I had all the treatments and I am...tired exhausted, tired...wanna go to bed, my body is aching everywhere and that gross food feels like a bag of cement in there

Day2: I woke up with..energy. and -astonishing enough....my muscles are not extremely sore. Looked at my "porridge" and decided to skip breakfast and had a tea.....had all the treatments....I found out that during my relaxation /breathing techniques I can calm down my twitching and even my constantly vibrating arm down to ZERO....unfortunately it comes back a few minutes afterwards, but it is only day 2. The cupping was awesome, it gave me great relief from my leg issues. Coming home I feel tired, look at my supper *örks* but I get it down. And today I have enough energy left to write this :=)


Day 3: worst day today. I have been working out all day.It was only mild workouts but now my whole body is in pain. This vibration plate is really tough..I had another physio looking at me and my legs. Apparently my scatic nerve is trapped by my tightened piriformis, added to the water in tissue. They can remove the water and help me relax my muscles, but ,most likely I will need further physio therapy. This also is happening at my ulnar nerve and the nerve passing carpal tunnel. So I keep doing stretches on all kinds of my body to loosen those nerves before they get as messed up as my right leg. I hate this gross food stuff. Well, only 4 more days and I can at least add some veggies to my diet. I am a bit frustrated today. Although my twitching is really really low and also the vibration and tremors since I started, my muscles are so easily fatigued and in pain. And all this stuff is about overcoming your borders, physically and mentally, and this is very exhausting. I have to admit that I am very close to tears today, I am just very very tired. And want chocolate.

Day 4: I feel much better. The morning was bad, I hardly got out of bed because my body was aching everywhere. My mood decreased even more when I looked at my breakfast. I had Probs getting my programme started, once almost burst in tears because I was in such bad pain, especially my leg. Then I had acupuncture and this really made my day, because the doc took special care of my scatia, and it was sooooooooo good. I could go-on with my programme from the beginning and could even perform noticeably more that yesterday.
My balance das improved so much. I often had problems walking on uneven ground and a continuous weak feeling in my right ancle, together with strange walking feelings (like my right foot was not walking "right", hitting the ground hard etc). I am training my feet receptors now daily and my walking feels perfectly normal...first time in 7 months.
I learned how I can stop those vibrations and the twitching by breathing right, but they still come back when I stop the meditation. So far hardly any twitches on my upper body, but when I come home in the evening, my calves go crazy.
I can run 17 minutes on the treadmill and do 5 minutes on the vibration plate in high training mode.....in may 2011 I had problems walking from my car to hospital entrance..before I started there, my legs were sore from only walking up the two stairs to my working place. So definately an allover improvement. Most of all I am impressed how much my sleep has improved..only 1 drop of amitryptillin makes me sleep so good that I have lots of power along my day. That is maybe the biggest change. Well, I still have pain and some twitching, but I think my overall situation improved, I am more confident about my strength and especially about my walking. Still *beep* chocolate. So bad...3 more days to go on the slimy stuff and then I may add some veggies to my diet *happy*

Day 5: My workout programme is increasing every day. I hardly feel any exercise intolerance while doing it, as long as I really really concentrate on my breath and have feedback to control it. Breathing is a big issue for me. When I concentrate really hard I can get my CO2 level up to 31mm Hg. But as soon as I am doing slight exercise without concetrating on my breathing or am stressed e.g. by just thinking about stressful stuff, my breathing changes an I drop to 20-24mm. I should be at 40. But without sufficient CO2 my muscles and nerves go crazy and tighten up and twitch/vibrate. Somehow my CO2 rezeptors have been changed in a way that they think 20 CO2 is OK. If it gets higher, I get suffocating feelings/yawning. Sometimes I hold my breath , which helps to increase the CO2 but lets Oxygen drop. What the f***-----can it be that hard for a grown up person to breathe RIGHT?? I hope these 2 weeks will be long enough to help me here, because I do not have a CO2/O2 Monitor at home ....now they gave me a mask with a tube on the front that makes me re-breath my CO2 so my brain receptors get used to higher CO2 levels...I am sitting in front of the TV like an elephant. ....no skype sessions for the next few weeks LOL...I have gained back complete control over my hands, no more weird feelings in them. No more stiffness and swolen feelings in my left hand, and much better in right. Also my feet and walking feel great. But I am still twitching in my calves and occasionally in my arms. My face stuff has completely gone , so did the tongue twitches. My finger tremors are linked to my breathing. Any muscle soreness is still here too.

Day 6 and 7: Weekend was short, a lot of stress besides the training, kids both sick and no sleep.....nevertheless I feel quite OK, hungry, but good. Twitching in calves still there

Day 8: My hubbys birthday, house full with guests.....more tomorrow

Day 9: I just came out of the bathtub and I am not twitching :shock: the last 8 months a hot bath was the biggest trigger for my twitches and tremors. Now I feel a bit vibrating, but no fasciculations. My twitching has calmes down a lot, but something new emerged: while about 80% of my day I am twitch-free, I developed "waves" of twitching.
Those last about 10 minutes and because I stopped my overall-twitching, I am very aware of those waves, Hmm. I still have Problems to relax my muscles in my right arm and leg. When I am able to ( I am using jacobson technique) it calms down and the arm tremor stops, but as soon as I stop thinking about it, my muscles tense uo again. :? Same for my beathing.
We were talking about my breathing issues today and I wondered if our breathing patterns get calm at night or if we still breathe wrong. He thinks that agood percentage of his patients have breathing probs at night, because many of them wake up at night startled with feelingsof suffocation, but actually that has never been studied. So I will be put on the CO2.measuring-apparature soon for a sleep. sorry, kids are back

End of therapy: I could really freak out, Eric just deleted my whole text while I went to the door for about 2 seconds...................
I feel good. About 80-90% of time I am twitch free. Occasional twitching and vibrating can be calmed down by breathing exercised. No more parestesias. I can do Sports without muscle fatigue as long as I concetrate on my breathing pattern. No more Finger stiffness or lead-filled feelings (but still some swollen feeling in the morning). No more walking problems/balance issues.Still have problems relaxing my muscles, especially in my right arm, but it is much better. I found out that doing my Piriformis strechtes 2 minutes on the vibration plate takes the leg pain/ compression feeling away for approx. 2 days. So I will go there as son as my pain gets bad.My right arm feels similar I guess because my muscles are tightened up there, if I look into the mirror I can see how my right shoulder is pulled up. Will go on with my Jacobson muscle relaxation to solve that Problem. I am working/relaxing with my re-breathing-Mask as often as possible to teach my body to accept blood CO2 above 25% without suffocating feelings again,so I hopefully will be able to stop concentrating on my breathing again. My doc is now on holidays, when he returns we will talk about other results and the video. Some of the questions in the other thread I can already answer, I will do as soon as I have time.


3 weeks in: I am almost back to normal diet, only meat is not on it yet and a very low intake of sugar (which is thought to stay that way). I am getting better in controlling my breathing I think. Twitching is down to only a few per day. I think regarding the number of twitches, I am back on my before-BFS-level, only the fact that I have rare twitches in my hands makes a difference to that. During work, I switched to relaxing sounds rather than heavy metal, which really makes a difference for me. And hubby and the kids don't come up here any more so it is calmer in even two ways :wink:
I still have good control over my leg pain with the stretches. Best of all: my right arm stopped vibrating most of the time. It has been vibrating for months and it was nerve-killing. If it now starts, I can calm it down withing a few minutes by slow breathing and jacobson muscle relaxation. That is sooooooooo cool. Oh, and I lost my face-stuff: no more tongue twitches, no more paresthesias, no more lip twitches or jaw tremor :mrgreen: some very rare eye twitches. maybe one or 2 per day. So now my BFS seems to have moved back to where it all started: my left hand . Which means all I have left is some slight swollen feeling in my right hand and pain in my left wrist and hand. and some rare twitching in that hand.

6 weeks in: twitching still down, the pain in my right leg is now constantly gone and my right arm is still quiet most of the day. I feel good. A twitch now and then, a short buzz or an itch, rare days with some slight pain. Am I healed? Don't know. But I have reached a level that I would not mind living with for the Rest of my life.



12 weeks: hubby gave me a nice virus with fever and now I am hanging around in a relapse.....
Last edited by chrissi on April 27th, 2012, 4:17 pm, edited 11 times in total.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby englishdave on January 31st, 2012, 12:44 pm

Brilliant chrissi.. Fascinating stuff, really.

Thanks for taking the time to share this, and please keep it up.

Dave. x
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Re: Chrissi's Therapy diary

Postby chicagobfs on January 31st, 2012, 6:19 pm

Great job chrissi, keep posting! To bad your doc is in Germany... Can't imagine how much it would cost here in the USA....
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Re: Chrissi's Therapy diary

Postby mommylondon on January 31st, 2012, 7:29 pm

This is fantastic Chrissi and so interesting...yes...please keep posting...this is great :D

I'd like to know what he has you eating though....doesnt sound to appealing :roll:
Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: Chrissi's Therapy diary

Postby mike fla on January 31st, 2012, 8:34 pm

It sounds like school cafeteria food.
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Re: Chrissi's Therapy diary

Postby chrissi on February 1st, 2012, 2:25 pm

I tell you the recipeLOL:


i take 80 gramms of ground oat , cook it in water and with a vanilla bean, add a bit sweetener and cinnamon. IResults: some gross tasting mucous....
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby chicagobfs on February 1st, 2012, 2:37 pm

How do you lik this cold chamber ? I know we have these in Poland but not in te USA:/ whats vibration plate? :?:
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Re: Chrissi's Therapy diary

Postby chrissi on February 1st, 2012, 2:39 pm

I feel sooooooooooo good after I come out of there, really, it is amazing. Sauna is also a good thing if you take care to really do the cold stuff afterwards.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby englishdave on February 1st, 2012, 3:05 pm

Well done chrissi ... make sure you stay strong and see the process out. you can treat yourself to chocolate when youve done!
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Re: Chrissi's Therapy diary

Postby chrissi on February 1st, 2012, 4:16 pm

thanx dave. I am just having some fum on the chat. Can you believe hubby just came in eating a chocolate bar...... :roll:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
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Re: Chrissi's Therapy diary

Postby chrissi on February 2nd, 2012, 3:00 pm

day4 on
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby chrissi on February 2nd, 2012, 3:05 pm

"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby chrissi on February 3rd, 2012, 3:21 pm

Day 5 on
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Chrissi's Therapy diary

Postby Slacker on February 4th, 2012, 10:37 pm

Thank you Chrissi for share with us. I'll try your therapy me too. Hyperventilation is my evident disease so i guess all the BFS stuff come from that. Are 9-10 i breathe in wrong way, every year worser. Stress and anxyety were the cause but all is chronic now and the resulting hyperventilation is existing underlying even i am not aware of it...but the symptoms are evident!

Further, hyperventilation cause hypocalcemia like a loss of Vitamin D do. About the latter i live in the night the major part of my time as i'm a computer programmer (this is typical life style of this profession...:D) and often i'm not under the sun light: my vitamin D blood concentration i guess should be so low. Further i take a gastrict protector (esomeprazol) which is proved create hypocalcemia (the gastric acid is involved in calcium absorption and its reduction may lead to a low calcium threshold in blood destabilizing the cellular membrane). All this stuff mixed to a dated hyperventilation....may be the cause of all this damned twiching and stiffness (sensory stuff incluced too!). The mechanism is all feedback-based where a lot of factors are self-connected each other.

I think what Chrissi reported will be helpful for many of us. Hyperventilation, hypocalcemia, tetany and vitamin D. I think the secret is under this "umbrella" (excluding auto-immune causes).

Thanks a lot Chrissi, smackkkkkkkkkkkkkkkkkkkkkk ! :*
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Re: Chrissi's Therapy diary

Postby cheeky-pie on February 5th, 2012, 11:41 am

Well done chrissi this is fabby news and keep us updated :P

Can you explain more about your diet and what you are eating plez? I am trying to cut down on my sugar intake like sweets and chocolate etc.. as i find they flare up my symptoms. I only have one coffee a day now and no longer drink green tea or decaff products. I am trying to drink 8 glasses of water a day and then only glass of red wine for a treat (because of the antioxidants) :)

Then i do three day weights and then three cardio work out a week :)

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