{"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":"smerte-utmattelse","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/pain-fatigue\/","title":{"rendered":"Smerter og utmattelse"},"content":{"rendered":"<p><strong>For mange pasienter er smerter og utmattelse en stadig p\u00e5minnelse om at de har Erdheim-Chester-syndromet.<\/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>Takket v\u00e6re det engasjementet som de kompetente helsepersonellene viser, finnes det tiltak pasienten selv kan iverksette for \u00e5 lindre smerter og tretthet.<\/p>\n<p>V\u00e5r nyeste lege i ECD Care Center Network, dr. Gaurav Goyal, forklarer hva som kan v\u00e6re til hjelp:<\/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 nevnte ogs\u00e5 noen andre alternativer som pasientene kan ta opp med legen sin:<\/p>\n<ul>\n<li>Samtidig bruk av andre psykoaktive legemidler som kan for\u00e5rsake eller forverre tretthet \u2013 opioider, s\u00f8vnmidler osv.<\/li>\n<li>Lack of good sleep- may discuss treatments for sleep and anxiety<\/li>\n<li>Farmakologiske behandlingsalternativer \u2013 man kan vurdere \u00e5 bruke sentralstimulerende midler som modafinil og metylfenidat<\/li>\n<li>Kognitiv atferdsterapi og psykoterapi<\/li>\n<li>Tiltak som kombinerer kropp og sinn \u2013 mindfulness-meditasjon, yoga osv. I de fleste byer finnes det mange steder som tilbyr gratis tjenester knyttet til disse metodene.<\/li>\n<\/ul>\n<p>*Det finnes forel\u00f8pig ingen kur mot ECD. Man snakker om remisjon n\u00e5r sykdommen befinner seg i en sovende\/inaktiv tilstand.<\/p>\n<p>Nedenfor finner du lenker med mer informasjon om dette emnet:<\/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 snakker om daglig pleie av pasienter med ECD.<\/p>\n<p><a href=\"https:\/\/youtu.be\/QcEVBl9bTpY\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/QcEVBl9bTpY<\/a>&nbsp;: Pasienter og p\u00e5r\u00f8rende kan stille sp\u00f8rsm\u00e5l til ekspertene under pasient- og p\u00e5r\u00f8rendesamlingen i 2019.<\/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>Hva har du opplevd at hjelper deg, enten du er pasient eller p\u00e5r\u00f8rende? Bes\u00f8k v\u00e5r <a href=\"https:\/\/www.facebook.com\/groups\/784637751599933\/\" target=\"_blank\" rel=\"noopener noreferrer\">ECDs Facebook-gruppe<\/a> for \u00e5 diskutere dette n\u00e6rmere med andre ECD-pasienter og p\u00e5r\u00f8rende!<\/p>\n<p>Du kan ogs\u00e5 sende svarene dine p\u00e5 e-post til <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":"","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\/nb\/wp-json\/wp\/v2\/posts\/5044","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=5044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/5044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/5046"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=5044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=5044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=5044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}