fibromyalgia … no. 2 – Dealing with an invisible disease

Good people, I’m still overwhelmed by the incredible response to my post “Fibromyalgia is … no. 1” ! He alone was shared on Facebook in two and a half days more than 1,000 times – so crazy! Thanks for all your comments, messages and mailings! Thanks to all who have shared the article. I am very happy, because this way we can create together more attention to the issue of fibromyalgia and invisible diseases in general. And since in this regard still prevail much misunderstanding and ignorance, it is high time to do something about.


I can keep saying it only means the whole physical symptoms are one thing; but just as stressful for all from such diseases affected the reactions and the way society is so. Many people in the environment of people with invisible diseases is not clear what damage they can do with their inappropriate reactions. And the most harmful and unfortunately at the same time most common reaction is to ignore and the consequent rejection of the concerns and problems of people with invisible illnesses and disabilities. Exactly that has become very clear in the comments to my article. In my records from the fibromyalgia Bullshit Bingo  or my article”Living in a parallel universe” is that clear.

At this point in my opinion there is to a very large vacuum. Luckily, there are more and more research and efforts in medicine to better understand the physical problems of Fibromyalgia and treat. Nevertheless, even here a lot of room for improvement. Where there but still no assistance is available to persons who, when it comes to dealing with the disease in everyday life. How can this be where the still represents a big problem as well as the physical symptoms ?!  How can it be that so many patients are left alone with these problems ?!


And we’re not talking about a small group, but by millions! The German Pain Society (DGSS) estimates that in Germany alone 8-16 million people suffer from chronic pain . And 21% of them have the feeling of being socially isolated because of their pain. That’s up to 3.4 million people! Not for nothing called an alliance that for more recognition and research of Myalgic Enzephaylomyelitis (ME) / Chronic Fatigue Syndrome (CFS) sets in, an action with the telling name “the millions missing” = “missing millions” from. It could also be the forgotten millionsspeak. Experts believe, that the majority of fibromyalgia patients is also affected by CFS ,   or that it could be a same disease with different manifestations. I think that CFS concerns me, though so far apart would put no doctor seriously with it. Ultimately, it is me not important what label gets my condition. My concern is that my symptoms and problems are taken seriously.


When I got my diagnosis on less than four years ago, I wanted to know how other Fibros with their illness, what experiences they make and how they manage their everyday lives. But I found no material that was not even raise something sensible on the net! Articles, biographies and descriptions of fibromyalgia patients, whether in the form of books, blogs and articles – prevailed in the German speaking practically dead trousers. So I swerved into English sides. Especially in the US awareness of fibromyalgia and invisible diseases in general is much more pronounced. The commitment, networking and support within the fibromyalgia community there are enormous and offers really great!

Meanwhile, also grows the offer in German, but only very slowly. That was one reason why I decided to call this blog to life. I hope I can do with those affected courage and show that they are with their problems alone. For me alone this knowledge is always a great relief.


So I have you in the first article of my series “is fibromyalgia, …” prompted to complete this sentence in your own words. I want to know about you, what you have in dealing with the disease for feelings and experiences her . I also hope that I can give in this way people who are otherwise not heard a voice and to increase visibility of our concerns. I think the sharing and cohesion among themselves can only make us stronger.

It is my intention to illustrate especially in everyday and for every / n-understand situations like a chronic disease such as fibromyalgia and invisible life changing. Of course, often the pain, the helplessness and loneliness of many patients showed up in many comments. Even those ugly sites are named. Nevertheless, it is for me always important not to fall into a sacrificial attitude or fatalism, as I clearly am, that I can do even much for me. It begins with the attitude that I take over incomprehension, criticism or advice. For me, it has become essential, not simply accept everything to fall into a passive attitude. Specifically I go to my article”Fibromyalgia is, … not to lose heart” on one.


And now finally come your submissions – again a very big thank you to all who participated ! Some statements I shortened from understanding and space reasons something and summarized.

“Fibromyalgia is for me right now after the election, the reason to take my / our rights into their own hands.”

“Fibromyalgia, full-time employment in silence, every day in addition to the normal daily life a” living program “. The program consists of exercise, active relaxation, meditation, nutrition, etc. It is only effective if I’m doing it every day. I need to integrate it into my daily life and I’m working on for many years. ”

“Fibromyalgia is despair in pain.”

“Fibromyalgia is, develop empathy, come down from their own high horse and learn appreciation for their own failure.”

“Fibromyalgia is somewhere and fight – especially if it gets worse. Fight to regain control of the pain, so to plug the holes in the firewall against the pain again, mentally regain control in order not to crash to be possibly also strong when a counter hits incomprehension again. ”

“Fibromyalgia is, with people to” entertain “you can see how to move the lips, you can hear the words, but you do not understand!”

“Fibromyalgia is to have years of endless doctors marathons behind and in front of him. try all sorts of strong painkillers, hoping that finally something will help. Fibromyalgia means helplessness and powerlessness, anxiety and so many different pain conditions in all conceivable areas of the body go through. Fibromyalgia is to be exhausted quickly to have extreme insomnia and recurrent depression in varying degrees of intensity. This all leads to social withdrawal. But despite all this shit for me there is only one option: never give up, no matter how often does the case “.

“Fibromyalgia is when a small breeze touches your skin and you feel it as a burning painful.”

“Fibromyalgia is muscle Tourette. In this expression came my beloved husband when I once again on different muscle groups aches and restless legs mitmischten. ”

“Fibromyalgia is to drink tap water because you do not aufkriegst the mineral water bottle. To you, in the cutlery drawer occurs to you one, Aufschraubergismo ‘it did. ”

“Fibromyalgia is when my identity card tells me that I am 58 years old, but my body feels like at least 100. And I’m Kopp maximum of 29 and would have loved to do a lot sooo. Fibromyalgia is to have the impression that, and in my body but nothing works the way it should. Fibromyalgia is if you have still gathered in recent years relatively modest 15 kg overweight on my hips, since I had to retire for health reasons the sport and in the report of the German pension insurance then is “overeating state”! ”

“Fibromyalgia is the emotional pain if you are considered as a complete idiot if you have yet dared to talk about it. It is the grief over the ignorance and rejection of others. They have been sweet, but why do not they understand me? ”

“Fibromyalgia is a pain that is everywhere. Sleep does not make you fitter, but can wake you whacked. And relive a day of agony in which you want to just give up and you yearn only for salvation and then you go to bed and everything starts all over again. ”

“Fibromyalgia is constantly meeting new frontiers and to develop new strategies!”

“Fibromyalgia is to live in a parallel world that is characterized by pain and struggling challenges you every day!”

“Fibromyalgia is when you’re shopping and suddenly not know where you’ve parked your shopping cart or your car.”

“Fibromyalgia is all that has been described here and still get up every day and fight for himself, his children. not to let it get to try this unnecessary shit’s disease, still far too many of the say it is not a disease but just an excuse for idlers and people who pity want to let NOT win – every day “

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