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 Post subject: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 02:26 
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Joined: Wed Apr 06, 2016 01:49
Posts: 2
Hei olen uusi käyttäjä sivustolla.
Olen Googlannut monilla oireillani jo varmaan vuoden ja tänä aamuna löysin melkein täydellisen identtisen vastaavuuden CFS-sivustolta oirelistaani. CFS, EDS sekä lisämunuaisten vajaatoiminta yhdessä = BINGO!
Nyt kysynkin kuinka päästä tälläisellä oirelistalla konkreettisesti eteenpäin tutkimuksissa? Minulla on verikokeitten perustulokset normaalit, keliakiatesti negatiivinen, reuma-ja tumavasta-aineet normaalit sekä kilpirauhastesti normaali.
Käytössäni on sekä työterveys että julkinen terveydenhuolto.

Oireita
- selän alimmassa nikamavälissä pullistumat sekä madaltuma
- nivelrikko varpaan nivelessä
- kuivat silmät ja suun limakalvot; ientulehdusta, käheä ääni
- kuukautiset kuivuneet kahteen vuorokauteen
- aamukankeutta
- liikkuminen sattuu aina johonkin, yhtäkkisiä kipuja esim. kävellessä polvessa, jalkapöydässä
- nivelet paukkavat ja lonksavat esim. leuka
- niveliin sattuu vaihtelevasti, tuntuu kuin nivelet eivät kannattelisi
- laskimovajaatoimintaa ja suonikohjuja jaloissa
- ärtyneen suolen oireyhtymä; vatsakipuja, ummetusta, ripulia, turvotusta, kouristuksia (maitotuotteet, kotimaiset viljat, monet juurekset, sienet jne. saavat vatsan sekaisin)
- liikunta saa väsähtämään, lihakset kipeytyvät, urheilun jälkeen pahoinvointia ja huono olo
- yliliikkuvuus selässä; kämmenet lattiaan suorilta
- janon tunne
- suolan himo
- lisääntynyt virtsaamisentarve yöllä tai vähänkin enemmän juodessa
- muisti reistailee; sanoja ja nimiä unohtuu ja niitä pitää hakea
- äärimmäinen väsymys ja uupumus; meinaan nukahtaa pystyyn, katson kaikkea kuin sumun läpi ja yritän ymmärtää vaivalloisesti esim. tekstiä
- hermostuneisuus, ahdistuneisuus, itkuisuus, ärtyisyys, yliherkkyys
- lääkkeet ja kofeiini vaikuttaa voimakkaasti
- pahoinvointi aamuisin herätessä aina, myös rasituksen jälkeen
- pitkiä yöunia, eikä väsymys hellitä, yöheräilyä kipuihin tai levottomiin uniin
- aloitekyvyn puute
- matala verenpaine
- näytän kymmenen vuotta ikäistäni nuoremmalta
- olen usein kipeä, flunssa yms. ja menen ilman kuumettakin huonovointiseksi
- mustelmat parantuvat hitaasti
- pari kuukautta ollut allergista reaktiota silmien ympärillä, vaikken ole koskaan ennen ollut allerginen millekkään (tätä ei ole tutkittu)


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 02:59 
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Joined: Thu May 11, 2006 08:54
Posts: 6152
Location: Amsterdam, Hollanti
Paljonko normaali kilpirauhastestituloksesi on, siis numeroina? Viitearvot niissä ovat ihan liian lepsut, jos sinulla olisi nuo mainitsemaasi kolme vaivaa, on varmaan ainakin 50 % todennäköisyys, että kilpparissa on myös vikaa.

Jos pääset maantieteellisesti Olli Polon vastaanotolle Tampereelle, se on CFS:n suhteen hyvä paikka aloittaa. EDS:ää hän tuntee hyvin, mutta ei diagnosoi (ainoastaan "määrittämätön sidekudospoikkeavuus", jolla ei tee esim. sairausetuuksien kannalta mitään), siihen vaadittaisiin fysiatri kuten Harri Hämäläinen Helsingissä. Sukurasite on olennaista sen kannalta, voiko EDS-diagnoosin saada.

Mahdollinen lisämunuaisen vajaatoiminta pitäisi diagnosoida myös erikseen. Jos se on tarpeeksi vakava, se näkyy aamukortisolissa ja silloin tk-lääkärikin tai työterveys lähettäisi endokrinologille. Hyvin harvalla näin kuitenkin on ja silloin tarvittaisiin funtionaalinen lääkäri (tai avarakatseinen endokrinologi) diagnosoimaan ja hoitamaan. Tämä lääkäri voisi hoitaa myös mahdollisen kilpparipuolen.

Muuta hyötyä en usko, että työterveydestä tässä on. Valitettavasti näiden sairauksien hoito on pitkälti yksityispuolen heiniä.

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 03:20 
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Joined: Wed Apr 06, 2016 01:49
Posts: 2
Hei kiitos vastauksestasi.
Kilpirauhasarvot olivat tälläiset. Itsehän en niitä sen enempää osaa tulkita kuin sen että viitearvojen sisällä ovat.
P T4 V - 15.3
P TSH - 0.84


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 03:23 
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Joined: Thu May 11, 2006 08:54
Posts: 6152
Location: Amsterdam, Hollanti
Okei, nuo arvot tosiaan ovat hyvät, vaikka eivät kaikentyyppisiä kilpirauhasongelmia suljekaan pois, kuten T3-muuntohäiriö. Sen unohdin sanoa, että ferritiiniarvo olisi myös erittäin hyvä mitata. Se kertoo elimistön rautatasoista paljon tarkemmin kuin hemoglobiini ja alhainen ferritiini voi aiheuttaa uupumusta ja sotkea kilpirauhasen toimintaa. Polo kyllä lähettää labraan, jos ei ole vielä mitattu.

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 04:34 
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Joined: Mon Nov 23, 2015 06:37
Posts: 814
Nämä oireet pistivät silmään mahdollisten sisäilmaongelmien suhteen:
- kuivat silmät ja suun limakalvot; ientulehdusta, käheä ääni
- aamukankeutta
- liikkuminen sattuu aina johonkin, yhtäkkisiä kipuja esim. kävellessä polvessa, jalkapöydässä
- pari kuukautta ollut allergista reaktiota silmien ympärillä, vaikken ole koskaan ennen ollut allerginen millekkään (tätä ei ole tutkittu)

Onko mahdollista, että työpaikalla/kotona olisi sisäilmaongelmia?

Eivät toki selitä kaikkia oireitasi, mutta nekin vaikuttavat muistiin, mielialaan ja jaksamiseen, ja aiheuttavat nivelkipuja ja väsyttävät.


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Wed Apr 06, 2016 05:02 
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Joined: Thu May 11, 2006 08:54
Posts: 6152
Location: Amsterdam, Hollanti
Nuo kyllä viittaavat muuhun kuin CFS:ään, se voisi olla sisäilmaongelma tai useimpien noista kohdalla kilpirauhasen vajaatoimintakin. Minulla esim. alihoidettu kilpirauhasen vajaatoiminta aiheuttaa silmien väliin hilseilevää ihoa. Se voi myös turvottaa silmien aluetta tai ympäristöä.

Sisäilmaongelma + EDS:kin voisi selittää kaikki oireet, EDS:ää sairastavat ovat usein homeellekin herkkiä.

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Mon Sep 10, 2018 10:07 
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 Post subject: Re: CFS? Kuinka eteenpäin?
PostPosted: Mon Sep 10, 2018 10:08 
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