Die Fibromyalgie mit Medikamenten lindern ist schwierig
Bis heute gibt es kein Medikament, das explizit zur Linderung von den Beschwerden bei einer Fibromyalgie entwickelt werden konnte. Das Spektrum der Medikamente, die zum Einsatz kommen reichen über klassische Schmerzmittel, Antidepressiva und Opioide.
Was sind Opioide?
Meine Erfahrungen mit den Medikamenten Tilidin und Oxycodon berichten.
Beides sind schmerzstillende Präparate aus der Gruppe der Opioide, wobei Oxycodon das stärkere von beiden ist. Tilidin gehört, so wie Tramadol, zu den schwächer dosierten Opioiden. In der Regel kommen sie bei starken bis sehr starken Schmerzen zum Einsatz und sind aus der Schmerztherapie nicht mehr weg zu denken. Aber auch bei chronischen Schmerzen, wie zum Beispiel bei der Erkrankung Fibromyalgie, werden zunehmend Medikamente wie Tilidin oder Oxycodon verschrieben. Die meisten Menschen mit Fibromyalgie haben schon eine Reihe verschiedener Schmerzmittel ausprobiert, oft mit wenig Erfolg. Die Einnahme von Opioiden ist häufig die letzte Hoffnung auf Linderung. Die Erfahrungen mit diesen Medikamenten sind allerdings sehr individuell. Manche Patienten vertragen sie gut und erleben sogar eine Schmerzlinderung. Vielen Menschen mit Fibromyalgie helfen sie allerdings nicht und verursachen zudem heftige Nebenwirkungen.
Ich habe innerhalb eines Aufenthalts in einer Rehaklinik, die spezialisiert ist auf chronische Schmerzen und Fibromyalgie , Tilidin eingenommen. Bis dahin hatte ich schon sämtliche Schmerzmittel, wie Ibuprofen, Novalgin, Katadolon, Terazepam, Ortoton, Lyrika und Doxipin ausprobiert, ohne großen Erfolg. Bei meiner Ankunft im Herbst 2015 in der Reha – Klinik war ich an einem gewissen Endpunkt, physisch, sowie psychisch, angelangt und ziemlich verzweifelt. Die Therapien und die medizinische Behandlung machten mir Hoffnung und obwohl ich mich bisher gegen die Einnahme von Opioiden gesträubt hatte, ließ ich mich auf die Vorschläge der Ärzte ein.
Die ersten Tage mit Tilidin waren schrecklich. Kopfschmerzen, Schwindel, Müdigkeit und Übelkeit sind bekannte Nebenwirkungen des Medikaments. Ich fühlte mich ständig wie betrunken und war kaum in der Lage meinen Therapieplan einzuhalten. Der Rat der Ärzte lautete: weiter machen, das ist ganz normal, der Körper gewöhnt sich daran! Tatsächlich wurden die Symptome von Tag zu Tag schwächer und stattdessen trat ein Gefühl von Leichtigkeit auf. Keine Schmerzlinderung, aber die Schwere meiner Glieder und die Erschöpfung wurden geringer. Ich entdeckte das Nordic Walking für mich und konnte mich erheblich leichter bewegen und sogar Freude daran entwickeln. Ich war happy! Was für ein schönes unbekanntes Körpergefühl!
Heute denke ich, dass die physikalischen Therapien, das tägliche Schwimmen und Laufen und die Ruhe zu diesem Gefühl beigetragen haben. Denn kaum war ich zuhause, hatte mich der Alltag wieder und meine Schmerzen kamen mit gleicher Intensität und Härte zurück. Meine Ärztin riet mir die Dosis für das Tilidin zu erhöhen. Wunderbar, denn wieder wurde ich beflügelt und mit einer gewissen Leichtigkeit beschenkt. Endlich! Endlich habe ich das richtige Medikament gefunden!
Die Landung auf den Boden der Tatsachen war hart und schmerzhaft. Die Wirkung des Tilidins hielt nur einige Tage an, dann kam der Schmerz wie gehabt. Warum ich trotzdem fast ein Jahr lang daran glauben wollte, dass das der richtige Weg ist, weiß ich nicht mehr genau. Ich wollte raus aus dem Teufelskreis Schmerz, ich wollte arbeitsfähig bleiben und meinen Kolleginnen beweisen, dass ich trotz meiner Erkrankung und einer 50 %igen Schwerbehinderung das gleiche Arbeitspensum schaffen konnte wie sie.
Irgendwann musste ich mir eingestehen, dass das Tilidin völlig wirkungslos ist, genauso gut hätte ich Placebos oder Smarties nehmen können. Dass ich die Tabletten nicht einfach wieder absetzten konnte, hatte ich nicht geahnt. Und auch was den Entzug betrifft, war ich komplett ahnungslos. Ich besprach das Prozedere mit meiner Ärztin und begann das Medikament „auszuschleichen“. Über mehrere Wochen musste ich die Dosis Schritt für Schritt verringern. Gleichzeitig ging es mir täglich schlechter. Ich hatte mit massiven Schlafstörungen, heftigen Migräneattacken, innerer Unruhe und Übelkeit zu kämpfen. Ein zweiwöchiger Urlaub auf Kreta war die Hölle: nachts bekam ich kein Auge zu, ich schlief erschöpft tagsüber im Auto und verpasste die schönsten Ausflüge und landschaftlichen Schönheiten, meine Erschöpfung machte mich krank. Der Entzug von Tilidin hat sich zu guter Letzt auch noch negativ auf das Restless-legs-Syndrom ausgewirkt. Es hat mehrere Wochen gedauert, bis ich mit Hilfe des Neurologen ein neues wirksames Mittel gegen das Restless – legs – Syndrom fand.
Alles in allem hat mich die Einnahme von Tilidin um Jahre zurück geworfen. Womit ich meine halbwegs wirksame Strategie gegen die chronischen Schmerzen der Fibromyalgie meine.
Das alles geschah, wie gesagt 2015/2016. Im Januar diesen Jahres ist mein Vater verstorben, was für mich eine extrem schmerzhafte und harte Erfahrung war und im Zuge dessen sich die Fibromyalgie massiv verstärkte. Meine Ärztin, die mich schon mehr als zehn Jahre kennt, schlug ein anderes Medikament aus der Reihe der Opioiden zu vor. Es sei höher dosiert und deshalb oft wirksamer: Targin – Oxycodon! Wie verzweifelt muss ich gewesen sein, dass ich trotz besseren Wissens diese Tabletten geschluckt habe? Ich wollte dem ganzen eine zweite Chance geben. Außerdem hatte meine Ärztin nichts anderes zu bieten. Zu der Zeit nahm ich Doxepin,Lyrika und bei Bedarf Ortodon und bei Migräne Sumatriptan. An machen Tagen kamen Ibuprofen und Paracetamol dazu. Meine innere Haltung, dass ich mich ja sowieso täglich vergifte und die Opiade keinen Schaden anrichten können, kann ich nicht leugnen.
Ähnlich wie beim Tilidin waren die Nebenwirkungen heftig. Zunächst habe ich mich fast zwei Wochen wie betrunken gefühlt, mir war schwindelig und ich hatte große Kreislaufprobleme. Das wurde etwas weniger, aber statt dessen hatte ich schreckliche Verstopfung unter der ich sehr litt. Noch schlimmer waren allerdings die Auswirkungen auf meine Psyche. Mein Alltag fühlte sich leer an, ich konnte mich über nichts richtig freuen, fühlte mich wie abgeschnitten vom allem, was um mich herum geschah. Eine noch größere und mir völlig unbekannte Erschöpfung überfiel mich und so sehr ich auch wollte, ich hatte zu nichts mehr Lust. Meine Versuche zu malen, zu nähen oder zu schreiben scheiterten kläglich. Allein die Idee mich aufzuraffen und aktiv zu werden war unerträglich. Meine kreative Quelle schien versiegt zu sein. Mein geliebter Mann nahm meine Wesensveränderung früher wahr als ich und fühlte sich noch hilfloser als ohnehin.
Als ich verkündete dass ich einen Tabletten Entzug in einer Klinik machen möchte (einen Entzug zuhause traute ich mir nicht zu), hat er mich sofort darin unterstützt. Zum Glück hatte meine Ärztin Verständnis und stellte die Verordnung für einen stationären Aufenthalt im Immanuel – Krankenhaus, Berlin-Wannsee, aus. Ich bekam relativ schnell einen Termin und ging im Juni mit dem Ziel das Targin abzusetzen und meine Selbstheilungskräfte wieder zu aktivieren in die Klinik. Über den Aufenthalt möchte ich in meinem nächsten Beitrag berichten.
Zum Schluss einen Ratschlag für dich, falls du auch an Fibromyalgie erkrankt bist:
Die Fibromyalgie hat viele Gesichter und ist in ihrer Auswirkung individuell. Wenn du zu den Menschen mit Fibromyalgie gehörst, denen es gelingt durch Bewegung und Ernährung einen guten Umgang mit den Schmerzen zu finden, dann lass die Finger weg von Opioiden!!!! Auch wenn es dir mal richtig schlecht geht, aus meiner Erfahrung heraus schadest du dir nur selbst und deine Selbstheilungskräfte werden geschwächt. Du endest dort, wo du garantiert nicht sein willst.
Stattdessen ist es wichtig und sinnvoll noch mal zu prüfen, ob du bei deinen Ärzten in guten Händen bist, du eine Selbsthilfegruppe in deiner Nähe besuchen kannst und ob es die Möglichkeit gibt eine Reha zu machen oder ins Krankenhaus zu gehen.
Last but not least: besinne dich auf deine Ressourcen und auf alles was dir gut tut!
Ich nehme seit über 2 Jahren schon Oxycodon, es hilft nur etwas die Schmerzen zu lindern. Zur Zeit bin ich im AKH in Celle und mache eine multimodale Schmerztherapie mit. Sie geht über 9 Tage. Für Nachmittags ist das Oxycodon schon reduziert worden. Bekomme hier Ergotherapie, Physiotherapie und physikalische Therapie. Ab Montag geht es dann richtig los. Ich hoffe das ich vom Oxycodon weg komme. Meine HA meinte es gibt leider nichts anderes.
Ich würde gerne Cannabis probieren, im Selbstversuch hat es prima gegen die Schmerzen geholfen. Drückt mir bitte die Daumen.
Sabine
Fibromyalgie wurde bei mir 2004 sicher diagnostiziert. Bei mir hilft nur Oxycodon. Ich nehme zweimal täglich 20mg. Hatte vorher andere Medikamente probiert.
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