Yala fura bɛ yen min bɛ kɛ ka sɛgɛnba (CFS) furakɛ, o min bɛ aw sɛgɛn tuma bɛɛ wa?

Yala i bɛ sɛgɛn tile bɛɛ kɔnɔ wa? Hali ni i ye sunɔgɔ ɲuman kɛ, n’i kununna sɔgɔma, i farikolo bɛ kɛ i n’a fɔ fanga tɛ a la wa? Yala i farikolo bɛ dimi fo i tɛ se ka i ka don o don baara yɛrɛ kɛ wa? N’a sɔrɔ o tɛ sɛgɛn gansan dɔrɔn ye. Bi an bɛ kuma Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) kan, bana min bɛ mɔgɔ caman tɔɔrɔ, wa a bɛ se ka u ka ɲɛnamaya yɛrɛ kɛ fiɲɛ ye.

N’an y’a fɔ cogo nɔgɔman na, nin ye bana ye min ka gɛlɛn kosɛbɛ. A taamasiɲɛw bɛ se ka ɲɔgɔn ta mɔgɔ kelen-kelen bɛɛ la. Hali ni i bɛ se ka sɛgɛn kojugu ani farikolodimi, mɔgɔ wɛrɛ ka gɛlɛya belebele bɛ se ka kɛ hakilijagabɔ ni sɛgɛn ye hali n’a ye sunɔgɔ cogo o cogo. O la, ni aw bɛ nin furakɛ, aw ni aw ka dɔgɔtɔrɔ ka kan ka aw sinsin fɔlɔ bana taamasiɲɛ minnu bɛ nɔ bila aw ka ɲɛnamaya la kosɛbɛ.

Yala fura kɛrɛnkɛrɛnnen bɛ nin bana in na wa?

Ni an b’a fɛ ka tiɲɛ fɔ, fura kelen tɛ yen min bɛ se ka kɛ sababu ye ka sɛgɛn basigilen (CFS) furakɛ. Fura kɛrɛnkɛrɛnnenw fana tɛ yen minnu dabɔra kɛrɛnkɛrɛnnenya la bana in kama. Nka, i kana i hakili ɲagami. Fura ni fura wɛrɛw bɛ yen minnu bɛ se ka aw dɛmɛ ka aw ka bana taamasiɲɛw kunbɛn. Nin dɔw bɛ se ka sɛbɛn dɔgɔtɔrɔ fɛ, dɔw bɛ se ka kɛ dimimadafura ye minnu tɛ sɔrɔ dɔgɔtɔrɔso la.

Min nafa ka bon kosɛbɛ, o ye ka kuma i ka dɔgɔtɔrɔ fɛ ani ka na ni furakɛli fɛɛrɛ ye min bɛ baara kɛ i ye. Aw kana taa fura ta dɔrɔn ka da aw lamini mɔgɔw ka kuma kan.

Fura minnu bɛ dɛmɛ don bana taamasiɲɛ suguya caman na

Sisan, an k’a lajɛ dɔgɔtɔrɔ bɛ se ka furakɛli sugu min fɔ ka da i ka bana taamasiɲɛ kunbabaw kan.

Aw bɛ mun kɛ sunɔgɔ gɛlɛyaw la?

ME/CFS bɛ mɔgɔ caman na, sunɔgɔ gɛlɛya sugu dɔ bɛ u la. O la, ka sunɔgɔ ɲuman sɔrɔ (walima ka sunɔgɔ ka ɲɛ ka tɛmɛ fɔlɔ kan) o bɛ se ka kɛ sababu ye ka tile sɛgɛn dɔgɔya.

Fɔlɔ, dɔgɔtɔrɔ bɛna a lajɛ ni sunɔgɔcogo ɲuman bɛ aw la. O kɔrɔ ye ka taa i da waati kelen na, ka kunun waati kelen na, ka i ka sugo to yɔrɔ la min ma sumaya, ka dibi don ani ka nɛnɛ.

Ni nin fɛn ninnu tɛ aw dɛmɛ ka sunɔgɔ, aw ka dɔgɔtɔrɔ bɛ se ka sunɔgɔ fura dɔ fɔ aw ye min tɛ sɔrɔ dɔgɔtɔrɔso la, i n’a fɔ sɔgɔsɔgɔninjɛ fura. A kɔlɔlɔ ye ko fura in nɔ bɛ se ka mɛn tuma dɔw la ka tɛmɛ lɛri 8 kan. Aw bɛ se ka sunɔgɔ fana sɔrɔ o dugujɛ. O ye fɛn ye an b’a ɲini ka an yɛrɛ tanga min ma. Nka furaw bɛɛ tɛ baara kɛ cogo kelen na bɛɛ la. O la, aw bɛ dɔgɔtɔrɔ ɲininka suguya jumɛn bɛnnen don aw ma ani a kɛcogo.

Ni o ma ɲɛ, dɔgɔtɔrɔ bɛ se ka sunɔgɔfura sɛbɛn. Olu kuntilenna ye ka aw ka sunɔgɔcogo latilen ni a tata hakɛ dɔgɔman ye waati kunkurunnin kɔnɔ. U man ɲi ka baara kɛ waati jan kɔnɔ.

Nin fura ninnu bɛɛ kɔlɔlɔ bɛ u la. Tile sunɔgɔ, ɲɛnamini, ani hakilijagabɔ fana ye ME/CFS taamasiɲɛw ye. O la, aw ka kan ka kuma aw ka dɔgɔtɔrɔ fɛ fura tali nafa ni a dɛsɛ kan.

Farikolodimi furakɛli

Dimi ka teli ka kɛ ME/CFS bɛ mɔgɔ caman na. Kungolodimi, farikolo ni kolotugudaw dimi de ka ca. Aw ka dɔgɔtɔrɔ bɛ se ka dimimadafuraw di aw ma minnu tɛ sɔrɔ dɔgɔtɔrɔso la (misali la, Panadol, Aspirin, Ibuprofène) walima fura barikamaw. Tuma dɔw la, furaw i n’a fɔ degun fura minnu bɛ wele ko tricycliques, olu fana bɛ kɛ ka dimi basigilen dɛmɛ. Ni aw ka dimi kunbɛnni ka gɛlɛn, aw ka dɔgɔtɔrɔ bɛ se ka aw bila dimi dɔnbaga dɔ fɛ.

Orthostatique Intolerance (Muɲulibaliya min bɛ kɛ ni orthostatique) ye

Nin ye gɛlɛya wɛrɛ ye min bɛ na ni ME/CFS ye. A taamasiɲɛw ye ɲɛnamini ye ni a jɔlen don, a bɛ yeli kɛ ka ɲɛ, a bɛ fasa, ani dusukun tantanni teliya. Ni nin taamasiɲɛ ninnu dɔ bɛ aw la, aw ye aw jija ka o fɔ aw ka dɔgɔtɔrɔ ye. Fura minnu bɛ i n’a fɔ Fludrocortisone, Midodrine ani Propranolol, olu bɛ se ka dɛmɛ don ka nin bana in kunbɛn.

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An ka fɛn dɔw dɔn minnu bɛ mɔgɔ bila ka miiri ani ka degun furaw kan.

Yala a ka ɲi ka baara kɛ ni fɛnɲɛnamafagalanw ye wa?

Dɔgɔtɔrɔw bɛ fɛnɲɛnamafagalanw di tuma dɔw la, minnu bɛ kɛ ka banaw furakɛ i n’a fɔ ADHD, walasa ka dɛmɛ don sɛgɛn ni hakilijagabɔ gɛlɛyaw la minnu bɛ se ka sɔrɔ ME/CFS fɛ. Nka faratiba bɛ u kɛli la.

Miiri k’a filɛ, n’i ye fura in ta, i bɛ barika sɔrɔ ka fanga bonya. O la, i b’a ɲini ka baara caman kɛ tile kelen kɔnɔ. Nka o dugujɛ, i sɛgɛnnen don ka tɛmɛ fɔlɔ kan, i n’a fɔ i bɛ taa ‘bɔn’. O bɛ i ka bana juguya dɔrɔn. Ani fana, fura ninnu dɔw bɛ se ka kɛ dɔlɔmin ye. O la, fura ninnu bɛ fɔ u hakɛ dɔgɔmanninba la ani dɔgɔtɔrɔ dɔrɔn fɛ min ka ko dɔn ka ɲɛ fura ninnu na.

Degun furaw ni hakili kɛnɛya

ME/CFS bɛ mɔgɔ minnu na, olu tilancɛ ɲɔgɔn bɛ degun sɔrɔ waati dɔ la u ka ɲɛnamaya kɔnɔ. O tɛ kabako ye. A ka ca a la, i bɛ degun ni i sɛgɛnnen don tuma bɛɛ ani ni dimi bɛ i la.

Ni o bana ɲɔgɔn bɛ aw la, aw bɛ se ka kuma aw ka dɔgɔtɔrɔ fɛ walasa k’a latigɛ ni degun fura tali bɛnnen don aw ma. A suguya tɛ kelen ye, i n’a fɔ SSRI, SNRI ani TCA. Aw ka dɔgɔtɔrɔ bɛna fura sugandi min bɛnnen don aw ma, wa a kɔlɔlɔ ka dɔgɔn.

Ka fara furaw kan, kuma furakɛli/hakilila furakɛli ye dɛmɛba ye nin waati in na. Ni aw bɛ se ka kuma aw dusukunnataw n’aw ka miiriyaw kan, o bɛ se ka kɛ lafiyaba ye.

Nin donw in na, fura minnu bɛ ɲininiw senfɛ

Dɔgɔtɔrɔw ni dɔnnikɛlaw bɛ ka taa a fɛ ka fura kuraw ɲinini kɛ walasa ka dɛmɛ don nin bana in na. Fura minnu bɛ kɛ i n’a fɔ Ampligen, naltrexone hakɛ dɔgɔman (LDN), ani rituximab, olu sɛgɛsɛgɛra kaban. Ani fana, banakisɛfagalanw ni farikolojidɛsɛ furaw bɛ ka sɛgɛsɛgɛ walasa k’a dɔn ni u bɛ se ka dɛmɛ don ka nin taamasiɲɛ ninnu dɔgɔya.