6 ms·
Since some comments made the comparison to psychological factors, CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psych
by wellboy 9y ago
Since some comments made the comparison to psychological factors, CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses.
As for the latest research, it is a dysfunction of all mitochondria in the body. More specifically, when ATP is reduced to ADP to produce energy, N+ and O+ radicals are created. Usually, those are eaten up by killer cells. However, in CFS patients, this mechanism is damaged, so that way too much N+ and O+ are created or, they are not eaten up fast enough after only very little exertion. That is why, CFS patients are bedridden for weeks and months after only running for the bus for 2 mins, because their body becomes overloaded with free radicals.
Those damage your cell membranes and create all sorts of pain, fatigue, brain fog, and many more symptoms.
I've been suffering from CFS for almost 3 years now. I went from building my own startup and loving life to massive pain and other symptoms within 24h. Over the years, I managed to reduce the symptoms by staying in bed completely for 1 year and paying a lot of attention to not exert myself for the remainder. I can do small things now without having "crashes" and am taking a lot of anti-oxidants after having found a doctor (Prof. Huber) in Germany who has specialized in CFS and developed a therapy. He said there are only 10 more doctors in Germany who know about CFS.
Before him, I went to see 30
other doctors who didn't give a damn about finding out what's wrong with me. Doctors also will not do more than the usual testing, because they don't want to exceed their per patient budget. You need to find a private insurance doctor.
So for 2 years all doctors have told me it's all
psychological. I went to see psychiatrists who prescribed me heavy anti-depressant. They told me I have heavy depression. When I asked them why they would say that, because I don't fulfill the depression criteria they became angry.
In order to be diagnosed with depression, you need a minimum of symptoms including suicidal thoughts, sleep disturbances, change in appetite etc. I did not have any of those, I just had massive pins and needle pains all over body, blurred vision and muscle twitching.
I told that to the psychiatrists and became angry, because I questioned their authority. They are the expert and not me. Then they tried to gaslight me by saying that I feel depressed multiple times even though I told them that I don't. Then they told
me I am a narcissist, manic, anti-social etc. and that is why I have these symptoms.
After 2 years I finally found a doctor who was not like this and who did more tests. He found elevated S100B protein (the CRP of the nervous system), MDA-LDL (free radicals) and low killer cells.
So, this is what you can expect when having CFS, doctors become angry, they try to actually gaslight you. Doctors vigorously say that CFS doesn't exist even though it is described specifically in the ICD.
Apart from that, your parents will desperately try to convince you that you're mentally ill and that it's all in your head, because that's what the doctors say and become desperately angry to try to convince you and maybe also cut contact with you, because they can't see their child withering away in bed, while he/she refuses to "listen to the doctors".
There are examples of recovery, so it is possible. However, most patients do not recover ever, because they have kids or need to work a job. If someone with CFS has kids or a they need to work, it's almost a death sentence, because you cannot do anything for years if you want to recover and you should not have more than 5 or so crashes in total, because the recovery time increases by several months for every crash, at least at the current state of therapy.
So, it's hard, but I've now had a 2 out of 5 main symptoms disappear after 2 years of avoidance of exertion and hope the other ones clear in the next few months.
- contingencies 9y agoThat sounds horrible. Well done and best wishes on the road to recovery. Have you tried meditation? Try to focus on all of the good things during the day at the end of the day, for a sustained period, regularly, for a few weeks. Celebrate small victories and slow progress. (There are other techniques, too.) Also, change of environment can often be a positive trigger: if you can afford it go someplace cheap for a few months with an audible beach and sunlight, different food, etc. Somewhere totally new and alien, preferably with a new language... and strictly reduce screen time to a minimum.
- wellboy 9y agoYes, doing all the things to celebrate small victories, shaving my beard etc. to get at least some dopamin during the day. Changed environent several times, and also meditation didn't do anything though.
- cpncrunch 9y ago>Since some comments made the comparison to psychological factors, CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses. My own CFS certainly did have an imbalance in neurotransmitters when it was severe, and other severe patients also seem to have this (e.g. Whitney Dafoe talks about feelings of what sounds like anxiety and depression when he has his CFS attacks). I can't think of what else could cause this other than an imbalance in neurotransmitters (or something similar). I think the problem is just the general misunderstanding (both from patients and doctors) about how the brain actually reacts to chronic stress. Even if you love what you're doing, if you push yourself too hard your body will eventually break. An example: https://cfsunravelled.com/bedbound-with-mecfs-fibromyalgia-overnight/ https://cfsunravelled.com/bedbound-with-mecfs-fibromyalgia-o... Another example is overtraining: if you push your body too hard physically (e.g. by running marathons every day), you can end up with a CFS-like illness with depression, extreme fatigue, immune dysfunction, etc.: https://www.outsideonline.com/1986361/running-empty https://www.outsideonline.com/1986361/running-empty The brain doesn't have a neat distinction between physical and psychological like we do. There seems to be a part of the brain which integrates physical and psychological stresses, which then causes depression and fatigue if it appears that the long-term stress is not beneficial: http://dx.doi.org/10.3389/fphys.2012.00082 http://dx.doi.org/10.3389/fphys.2012.00082 http://dx.doi.org/10.1037/0021-9010.86.3.499 http://dx.doi.org/10.1037/0021-9010.86.3.499 http://dx.doi.org/10.1016/j.psyneuen.2005.04.006 http://dx.doi.org/10.1016/j.psyneuen.2005.04.006 http://dx.doi.org/10.1037/0033-2909.133.1.25 http://dx.doi.org/10.1037/0033-2909.133.1.25 http://dx.doi.org/10.1016/j.brainresrev.2008.07.001 http://dx.doi.org/10.1016/j.brainresrev.2008.07.001