„Fibro – fog“ und Fibromyalgie – was tun?

Erstellt von am in Fibromyalgie

Fibromyalgie und fibro -fog, das ist wie „Nebel im Kopf“ 

Menschen mit Fibromyalgie kennen das – du wirst morgens wach und merkst sofort: das ist wieder so ein Tag! Ein Tag mit „Nebel im Kopf„. Dieser Zustand lässt sich auch mit „Watte im Kopf“ und „Mein Kopf ist dumpf“ oder „Ich kann nicht denken“ beschreibe. Es handelt sich hierbei um den sogenannten „Fibro – Fog“. Der Begriff kommt aus dem englischen, „fog“ bedeutet Nebel und „fibro“ steht für Fibromyalgie. Wenn ich dieses Gefühl im Kopf habe, fällt mir das Denken tatsächlich unheimlich schwer. Ich kann mich nicht konzentrieren, finde nicht die richtigen Worte und denken strengt mich wahnsinnig an. Eine einfache Frage wie: „Was hast du gestern gemacht?“ oder „Was wollen wir heute machen?“ kann ich nicht beantworten. Ich kann mich nicht erinnern und keine Entscheidung treffen. Manchmal ist einfach alles weg. Wie eine Art „Blackout“, statt einer Erinnerung ist nur ein schwarzes Loch. 

Eine Medizinische Erklärung gibt es bisher noch nicht, allerdings haben eine Arbeitsgruppe verschiedener Forscher*innen anhand eines speziellen MRT – Verfahrens Neuroinflammationen im Gehirn festgestellt, die möglicherweise die Erschöpfung und auch die kognitive Fehlfunktion verursachen.

Wenn ich so einen „Fibro – Fog – Tag“ habe, bin ich meistens sehr erschöpft und die Schmerzen sind schlimmer, als sonst. Oft hilft da nur hinlegen und abwarten. Aber auch an Tagen, an denen ich kein Gefühl von „Nebel im Kopf“ habe, bemerke ich extreme Konzentrationsprobleme. Ich leide sehr unter Vergesslichkeit, manchmal habe ich Wortfindungsstörungen und ich bin mental schnell erschöpft. Bisher wird diesem Begleitsymptom der Fibromyalgie aber wenig Beachtung geschenkt. Ebenso wenig die Tatsache, dass das mit ein Grund ist, wenn Menschen mit Fibromyalgie nicht mehr arbeitsfähig sind.

Wenn ich mein Problem und die Symptomatik innerhalb meines Freund*innenkreis erzähle, höre ich in der Regel den Satz: „Ach, das geht mir auch ständig so, das ist das Alter!“

Fibro Fog – so ungefähr geht es mir

Nein, das ist NICHT das Alter! Ich habe das Gefühl von kognitiver Störung schon seit dem ich die Fibromyalgie habe und zwar seit meiner Kindheit! Ich habe diese Probleme nicht ab und zu, sondern häufig zehn mal am Tag. Ich vergesse, was ich gerade machen wollte, vergesse Termine und Verabredungen und immer häufiger habe ich richtiggehende Blackouts.

Diese „Black – Outs“ äußern sich bei mir zum Beispiel indem ich beim betreten der Straße nicht mehr weiß wohin ich wollte. Obwohl ich schon seit dreißig Jahre in Berlin lebe, muss mein Mann mir den Weg erklären und auch welchen Ausgang ich bei der U – Bahn nehmen muss. Es kann mir passieren, dass ich mit der U Bahn in die falsche Richtung fahre und ich bemerke es erst, wenn ich einige Stationen gefahren bin. Oder ich komme aus der U Bahn raus und laufe in die falsche Richtung. Wenn ich alleine unterwegs bin, muss minimum 10 x auf eine Wegbeschreibung gucken, weil ich immer wieder vergesse, wo ich umsteigen muss.

Ich muss sehr oft lange überlegen, was genau sich am Vortag ereignet hat, die Erinnerung ist ganz weg, ein schwarzes Loch. Ich kann mich nicht erinnern, was ich gegessen habe und auch nicht was ich gemacht habe. Ich will erzählen welches Buch ich gerade lese und mir fällt weder der Titel, noch der Name der Autor*in ein. Auch den Inhalt kann ich nicht wieder geben, in dem Moment in dem ich davon erzählen möchte ist alles weg. Ähnlich ergeht mir das mit einen interessanten Film den ich gesehen habe, auch da kann ich mich nicht an Titel oder Inhalt erinnern. 

Ein anderes Beispiel, etwas was mir jeden Tag mindestens einmal passiert: Ich will mir einen Tee kochen, stehe auf und gehe in die Küche, dann weiß ich nicht mehr was ich wollte und ich stehe da und es ist nur null Erinnerung da. Oder mir fällt etwas ein, was ich nicht vergessen darf. Ich gehe zu meinem Schreibtisch, nehme Zettel und Stift in die Hand und weiß im gleichen Moment nicht mehr, was ich aufschreiben wollte. Abends beim kochen, ich koche gerne nach Rezept, muss ich minimum 20 x in das Rezept gucken. Ich lese den nächsten Schritt und habe im gleichen Moment vergessen, was ich tun muss.

Damit ich keine Termine verpasse oder auch in alltäglichen Situationen sichere ich mich doppelt und dreifach ab. Ich habe einen handschriftlichen und einen digitalen Kalender, der mit dem Smartphone meines Mannes verknüpft ist, damit er mich erinnern kann. In unserer Wohnung hängen überall Zettel, auf denen steht: „Schlüssel nicht vergessen“, „Wo ist der Akku von deinem Fahrrad?“ und „Handy aufgeladen?“.

Emotionaler Leidensdruck durch Fibro – fog

Mein Umfeld hält mich für eine kluge und eloquente Frau. Freund*innen und Kolleg*innen haben mich erlebt, wie ich Vorträge gehalten oder Elternabende moderiert habe. Im Gespräch mit anderen Menschen wirke ich wach und aufmerksam und überhaupt nicht eingeschränkt. Aber ich leide sehr! Ich schäme mich, weil mir zu Beispiel Namen von Literat*innen Wissenschaftler*innen oder Politiker*inn nicht mehr einfallen. Dann habe ich oft das Gefühl nicht mehr mitreden zu können und werde ganz still. In einem einfachen Würfelspiel kann ich nicht mehr rechnen, ich weiß nicht mal mehr was 7+7 ist und muss bei einfachen Rechnungen den Taschenrechner benutzen. Das versuche ich möglichst unauffällig auf meinem Smartphone zu machen. Und wenn viele Menschen gleichzeitig reden, kann ich dem Gesprächen nicht folgen und mich nicht konzentrieren und muss mich zurück ziehen. Und so habe ich viele Strategien entwickelt, mit denen ich diese Auffälligkeiten kompensieren kann.

Meine Scham und das geringe Selbstwertgefühl bleiben. Allerdings habe ich allmählich einen viel besseren Umgang  damit entwickelt. Es gibt immer mehr Situationen, in denen ich mit meiner Vergesslichkeit offen und humorvoll umgehen kann.

„Fibro – fog“ – was hilft?

Schreiben hilft!

Statt eines Kalenders, benutze ich seit vielen Jahren ein selbstgemachtes „Bullet journal“, in das ich nicht nur meine Termine eintrage, sondern auch meine „to do – Listen“ und meine Pläne. Außerdem dient es mir als Tagebuch, in dem ich festhalte, was ich gemacht und erlebt habe und wie ich mich fühle. Jeden Tag notiere ich mir einen Moment oder Ereignis, der mich glücklich macht.

Das Schreiben dient mir als Konzentrationsübung und mein Bullet Journal als Gedächtnisstütze.

Aktive Entspannung und Meditation

Schlafmangel und Müdigkeit verschlimmern die Symptome des „fibro – fog“ erheblich. Je ausgeruhter und entspannter ich bin, desto mehr Ressourcen habe ich, die kognitive Erschöpfung und Konzentrationsstörungen zu kompensieren. Deshalb iempfehle ich sich eine Entspannungsmethode anzueignen und sie in den Alltag zu integrieren und für ausreichend erholsamen Schlaf zu sorgen. Der Schlaf kann durch regelmäßige aktive Entspannung am Tag verbessert werden. Für diejenigen, die noch keine Erfahrungen mit aktiver Entspannung und Meditation haben, kann die Benutzung einer App sehr hilfreich sein. Mir gefällt die App „headspace“ gut und die kostenlose Variante hat mir vollkommen ausgereicht. Aber es gibt noch viele andere.

Gedächtnisstütze für Medikamente und Therapien

Noch eine App, die ich euch empfehlen kann! Ich benutze seit einiger Zeit die app „MyTherapie“ , die mir hilft rechtzeitig meine Medikamente zu nehmen, daran zu denken meinen Blutdruck zu messen und meine Aktivitäten, sowie meine Zeiten für Meditation und Entspannung trage ich auch ein. Das Praktische an dieser App ist die Möglichkeit alles als PDF ausdrucken zu können. Das kann zum Beispiel bei einem Besuch bei der Ärzt*in hilfreich sein.

Eine Form der Entspannung war für mich immer das Lesen von Büchern. Heute fehlt mir jedoch oft die Konzentration. Eine gute Alternative sind Hörbücher und das hören von Podcasts. Dafür gibt es auch eine tolle App, in der ich immer fündig werde und zwar die App der ARD Audiothek

Singen, Tanzen, Lachen

Lach mal wieder über dich selbst! Es ist sicher nicht leicht mit einer Fibromyalgie und dem Fibro – fog zu leben, trotzdem oder gerade deswegen ist es wichtig sich den Humor zu erhalten und einen liebevollen Umgang mit sich selbst. Ich nehme mir meine Vergesslichkeit und die Gedächtnislücken nicht mehr übel und gehe offen damit um.

Musik hören und Tanzen sind mein Mittel locker zu bleiben!

Wegen Fibromyalgie einen Pflegegrad beantragen

Einen Pflegegrad zu beantragen erschien mir bis vor kurzem als völlig übertrieben, aber dann hat mich eine Apothekerin in meiner Stamm – Apotheke darin ermutigt. Das Prozedere ist sogar relativ einfach, ein Anruf oder ein formloser Antrag an die Krankenkasse reichen. Relativ zeitnah hat sich bei mir eine Gutachter*in vom MDK angekündigt. Das Gespräch mit ihr war angenehm und enspannt. Allerdings hat sie meine kognitiven Einschränkungen nicht ernst genommen. Sie meinte sogar, dieses Symptom gäbe es nicht bei der Fibromyalgie und ich solle mich neurologisch untersuchen lassen. So nach dem Motto: „Es könnte eine beginnende Demenz sein!“. Dagegen werde ich mich zur Wehr setzten.

Denn ich war im Vorfeld in einem sogannten Pflegestützpunkt zur Beratung. Die Beraterin ist mit mir alle Module durchgegangen und nach ihrer Einschätzung sind auch die Konzentrationsprobleme, meine Vergesslichkeit und die Desorientierung, die dadurch verursacht wird, relevant, da ich auch in dem Bereich auf die Hilfe meines Mannes angewiesen bin.

Jetzt bin ich sehr gespannt auf das Ergebnis!

1.171 Kommentare

  1. Vielen Dank für diesen tollen Text. Ich fühle mich total angesprochen. Anfangs dachte ich, solche Ausfälle und Müdigkeit oder Sehstörungen u.v.m., können nicht von der Fibromyalgie kommen aber du bestätigst mir dass es tatsächlich so ist. Danke Jasmine

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    • Hallo Jasmine, vielen Dank für dein Feedback! Es freut mich, dass du meinen Text als hilfreich empfunden hast. Ich habe auch jahrelang nicht gewusst, dass es einen Zusammenhang zwischen Fibromyalgie und der kognitiven Auffälligkeiten gibt. Ich habe das immer als ein persönliches Defizit gesehen, habe den Menschen geglaubt, die mir einzureden versucht haben, ich müsse einfach nur mehr und besser lernen oder mich anstrengen und mich besser konzentrieren. Wie viel einfacher hätte mein Leben sein können, mit ein bisschen mehr Wissen und Toleranz über die Auswirkungen der Fibromyalgie bei Ärzt*innen, Lehrer*innen und Eltern? Mir liegt es sehr am Herzen über die Fibromyalgie und alle Begleitsymptome aufzuklären und für mehr Empathie der Mitmenschen zu kämpfen. Deshalb erzähle ich von mir.
      Ich hoffe dass du noch keinen langen Leidensweg hinter dir hast und du von Forschung und Aufklärung profitieren wirst. Alles Gute dir!

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  2. Dito,ich kann das ganze auch bestätigen…es ist gruselig und unangenehm in vielen Situationen,ich Versuch es dann auch zu verstecken…ich habe es sogar manchmal gehabt das ich eine Person nicht mehr erkannt habe oder einsortieren könnte woher ich sie kenne,geschweige denn ihren Namen…obwohl ich sie sehr oft treffe … scheisse ist das! Ich habe Destinationsstörungen manchmal,dann kenn ich den Weg zu meiner Arbeit nicht mehr oder zu sonst wo hin…ich könnte tausend Dinge aufzählen und das schlimme ist,es wird bei vielen nicht anerkannt oder psychosomatisch abgestempelt,langsam langsam macht sich was auf den Weg für uns,aber sehr schleppend leider…Schmerzen sind sehr extrem teilweise….naja es sind sooo viele Sachen…dachte oft ,hoffentlich ist das nicht der Anfang einer Alzheimer, Demenz….

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  3. Danke für diesen wertvollen u hilfreichen Link! Er spricht mir aus der Seele … kann jedes Wort doppelt unterstreichen! Leide seit ca 30 Jahren an Fibromyalgie! Diagnostiziert wurde sie vor 15 Jahren!
    Eine sehr gemeine Krankheit , die sogar innerhalb der Familie nicht ernstgenommen wird und viele Ärzte sie nachwievor belächeln, da man uns Betroffenen das FMS meist nicht ansieht!
    Hoffe auf die Forschung und weitere Berichte bzw Erkenntnisse!!!
    Wir klammern uns an jeden Strohhalm ……

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