{"id":5044,"date":"2020-01-30T19:43:21","date_gmt":"2020-01-30T19:43:21","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=5044"},"modified":"2020-09-22T07:19:09","modified_gmt":"2020-09-22T07:19:09","slug":"schmerzen-erschopfung","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/de\/pain-fatigue\/","title":{"rendered":"Schmerzen und M\u00fcdigkeit"},"content":{"rendered":"<p><strong>F\u00fcr viele Patienten sind Schmerzen und Ersch\u00f6pfung eine st\u00e4ndige Erinnerung daran, dass sie an der Erdheim-Chester-Krankheit leiden.<\/strong> Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. These symptoms may be seen in newly diagnosed patients as well as those that are considered to be in remission* from the disease.<\/p>\n<p>Dank des Engagements der kompetenten medizinischen Fachkr\u00e4fte gibt es Ma\u00dfnahmen, die ein Patient ergreifen kann, um Schmerzen und M\u00fcdigkeit zu lindern.<\/p>\n<p>Unser neuester Arzt im ECD Care Center Network, Dr. Gaurav Goyal, erl\u00e4utert, was helfen kann:<\/p>\n<p>\u201cCancer related fatigue is a major challenge that we don&#8217;t have easy answers to. Exercise is indeed the single most important intervention that can help them. However, the best way to derive benefit is through structured programs targeting at least 150 minutes of exercise a week. Most of the popular gyms and medical facilities offer such programs specific to cancer patients. It can be difficult at times to do strenuous exercise if there are interfering symptoms. In that case, may discuss with your physician regarding alternative options (yoga, water exercises, etc.)\u201d<\/p>\n<p>Dr. Goyal erw\u00e4hnte au\u00dferdem einige weitere M\u00f6glichkeiten, die Patienten mit ihren \u00c4rzten besprechen k\u00f6nnten:<\/p>\n<ul>\n<li>Gleichzeitige Einnahme anderer psychoaktiver Medikamente, die M\u00fcdigkeit verursachen oder verst\u00e4rken k\u00f6nnen \u2013 Opioide, Schlafmittel usw.<\/li>\n<li>Lack of good sleep- may discuss treatments for sleep and anxiety<\/li>\n<li>Medikament\u00f6se Behandlungsm\u00f6glichkeiten \u2013 der Einsatz von Stimulanzien wie Modafinil und Methylphenidat kann in Betracht gezogen werden<\/li>\n<li>Kognitive Verhaltenstherapie und Psychotherapie<\/li>\n<li>Mind-Body-Ma\u00dfnahmen \u2013 Achtsamkeitsmeditation, Yoga usw. In den meisten St\u00e4dten gibt es zahlreiche Einrichtungen, die kostenlose Angebote f\u00fcr diese Methoden bereitstellen.<\/li>\n<\/ul>\n<p>*Derzeit gibt es keine Heilung f\u00fcr ECD. Von einer Remission spricht man, wenn sich die Krankheit in einem ruhenden bzw. inaktiven Zustand befindet.<\/p>\n<p>Im Folgenden finden Sie Links mit weiteren Informationen zu diesem Thema:<\/p>\n<p><a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709<\/a><\/p>\n<p><a href=\"https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html<\/a><\/p>\n<p><a href=\"https:\/\/youtu.be\/_A2KIbcb4tk\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/_A2KIbcb4tk<\/a> : Dr. Roei Mazor spricht \u00fcber die t\u00e4gliche Pflege von ECD-Patienten.<\/p>\n<p><a href=\"https:\/\/youtu.be\/QcEVBl9bTpY\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/QcEVBl9bTpY<\/a>&nbsp;: Patienten und Angeh\u00f6rige k\u00f6nnen beim Patienten- und Angeh\u00f6rigen-Treffen 2019 Fragen an die Experten stellen.<\/p>\n<p>Other amazing and informative videos can be found on our YouTube channel. <a href=\"https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Was hat sich f\u00fcr Sie als Patient oder Pflegeperson als hilfreich erwiesen? Besuchen Sie unsere <a href=\"https:\/\/www.facebook.com\/groups\/784637751599933\/\" target=\"_blank\" rel=\"noopener noreferrer\">ECD-Facebook-Gruppe<\/a> um sich mit anderen ECD-Patienten und Angeh\u00f6rigen weiter dar\u00fcber auszutauschen!<\/p>\n<p>Sie k\u00f6nnen Ihre Antworten auch per E-Mail an <span class=\"reverse\">chesnee.green@erdheim-chester.org<\/span>.<\/p>","protected":false},"excerpt":{"rendered":"<p>For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":5046,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67],"tags":[55,54,59,53,58,56,69,57,68,52],"class_list":["post-5044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-pain","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/5044","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/comments?post=5044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/5044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media\/5046"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media?parent=5044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/categories?post=5044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/tags?post=5044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}