Fibromyalgie manifesteert zich op verschillende manieren voor verschillende patiënten, maar de meeste kunnen het erover eens dat alle symptomen zijn levensveranderende. Het is niet altijd duidelijk hoe (of als) ze kunnen worden behandeld en de fysieke uitdagingen kunnen maar al te gemakkelijk omslaan in emotionele problemen als de dingen die je gebruikt om te doen steeds moeilijker geworden.
We vroegen onze Mighty gemeenschap met fibromyalgie welke symptomen ze rekening houden met de ergste en hoe ze omgaan met hen. Als u last krijgt van deze moeilijke symptomen evenals, bekijk dan de strategieën die ze gebruiken, en vergeet niet dat je niet alleen bent in het omgaan met de ontberingen van fibromyalgie.
Hier is wat de gemeenschap vertelde ons:
1. “N altijd beëindigen van vermoeidheid. Ik ben nog steeds bezig om erachter te komen wat helpt, maar tot nu toe, worden bepaalde homeopathische geneesmiddelen werken. Mijn online steungroep helpt enorm! En er is altijd Netflix. Knuffels van mijn katten te helpen, ook!”
2. “Toen ik het gevoel dat ik wandelen door drijfzand. Het enige dat helpt is om een pauze voor een dag en rust te nemen.”
3. “Voor mij is het slechtste deel van fibro is niet de pijn / stijfheid of de constante vermoeidheid, het is mijn niet-bestaande sociale leven en voortdurend zich alleen voelen / onbegrepen. Zelfs op de vreselijke dagen, ik een manier om te gaan vinden altijd of ik lag gewoon in bed en zeuren om mijn huisdieren. Maar het is moeilijk om een manier om ‘te gaan’ met de eenzaamheid en de depressie die volgt vinden.”
4. “Het ergste is de stijfheid van gewrichten en gewrichtspijn ik word, hoe misselijkheid en moe de hele dag en vervolgens niet in staat om te slapen ‘s nachts. Ik ben een grote fan van de verwarming pad, en het houden van gehydrateerd, en het nemen van mijn dagen op een dag op een moment.”
5. “Het hele lichaam stijfheid alsof je hebt gewerkt elk bot in je lichaam van de dag voordien. Geen manier om te gaan met de pijn, maar uit te werken helpt …. vermindert aantal van de stijfheid. Ik merk het meer als ik niet cardio doen. Ik vertel mijn familie die ik uit te werken om gewicht, dat is waar te verliezen, maar het is meer zo te helpen met de stijfheid.”
6. “Als er iets altijd pijn doet, is het moeilijk om zich te concentreren. Als je nooit een goede nachtrust te krijgen, het krijgen door middel van een werk dag zonder een dutje is ongelooflijk moeilijk. Ik gebruik essentiële oliën om te helpen met beide. Ik zorg ervoor dat ik de beste nachtrust die ik kan en rusten wanneer ik kan.”
7. “Pijn in elk deel van mijn lichaam! Sommige dagen is het pijn doet zelfs om te ademen. Ik verwen mezelf op die dagen en alleen doen wat nodig is. Sla ik een boek dat ik weet dat ik zal verdwalen in het lezen, hebben een paar dutjes, en proberen om mijn strakke spieren te ontspannen om de pijn te minimaliseren. Ik knuffelen en aaien mijn honden veel, ook. Ik woon op mezelf in de Minnesota up-noord bossen, ver weg van het lawaai en de stress van het leven in een stad. De rust en eenzaamheid houden help me relaxed.”
8. “Voor mij is het de cognitieve problemen. Ik kan de pijn te verbergen, maar als ik kan geen woorden vormen of verdwalen in bekende plaatsen en zie de medelijdende blik op de gezichten van anderen, ik wil huilen. Ik gebruikte vertrouwen en uitgaand zijn. Nu wil ik alleen om weg te verbergen.”
9. “Worst symptomen voor mij zijn de willekeurige hand heen. Ik omgaan met hen door het maken van grapjes.”
10. “Niet met een inwendige thermostaat. Ik ben zelden gewoon een comfortabele temp. Altijd warm of invriezen! Ik probeer aan te kleden met lagen en weet waar fans en frisse lucht zijn als dat mogelijk is!”
11. “Wakker worden pijnlijke alsof ik wandelden 20 mijl, het gevoel alsof ik helemaal niet slapen, en het gevoel alsof mijn hoofd zit vast in de mist. Het voelt alsof ik een jetlag de hele tijd, wandelen door drijfzand met pijn in het lichaam van de griep … Ik probeer om een positieve houding over de goede delen van mijn leven en het beheer van het beste wat ik kan.”
12. “De inconsistentie. Op een dag kunt u worden voelt relatief goed en de volgende dag dat je niet in staat om uit bed te krijgen. Fibro geeft niet als je dingen doen die dag te hebben; als het een slechte pijn dag, het is een slechte pijn dag.”
13. “Het ergste symptoom zou mijn verlies van het zelf te zijn. Ik heb hard gewerkt voor het leven dat ik had. Ik was gelukkig. Maar nu voel ik me als een dergelijke last. Het maakt niet uit hoe positief ik ben of hoeveel ik lach, ik worstel met de constante verwijdering van onafhankelijkheid. Ik ben niet zeker hoe lief te hebben of zelfs als wat ik ben geworden. Ik heb wel verbazingwekkend steun van mijn partner, en dat waardeer ik het meer dan hij ooit zal weten. De tijd zal samen het verschil maken. Dus zal het vinden van nieuwe gelukkige momenten en plaatsen.”
14. “Het ergste symptoom is een specifieke vorm van pijn; het voelt alsof ik word gestoken, in willekeurige volgorde, met een rood-hot geëlektrificeerde mes over mijn hele lichaam. Er is geen verlichting. Alles wat ik kan doen is wrijf mijn voeten / handen / benen / armen, oprollen in een bal en wachten tot het te passen.”
15. “Ik heb goede en slechte dagen, maar op de slechte dagen het voelt alsof elk gewricht in mijn lichaam schreeuwt. Op die dagen neem ik een mooie lange epson zoutbad met bubbels en rustige muziek; het helpt altijd.”
16. “Fibromyalgie flare-ups zijn de ergste. De pijn is ondraaglijk en het wordt gevoeld in elk gewricht, elke spier, elke zenuw. De vermoeidheid is overweldigend, en slaap wordt vaak tot een minimum beperkt, omdat de pijn zo ernstig is. Flare-ups gebeuren als gevolg van stress, het weer, overbelasting, en helaas, soms is er geen enkele reden.”
17. “Je alleen voelen. Ik heb een grote online community gevonden, en ik koester het echtpaar begrijpen vrienden ik heb.”
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