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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Sleeping all the time?

Messages
19
Location
Dubrovnik/Croatia
remember first year, was sleeping for 2/3 of day and actually enjoy sleeping because my condition was not in my dreams. when dreaming i was healty. after that first year i was ill in my dreams as well. since then im ill 24/7. for my self i belive if manage to balanse my dream i will get on god 60-70%. i was diagnosed cfs just last year(suffering for 12) because in my country doctors dont have time for cases where u look normal and your test resoults the same. but now i started psychoterapy i maybe will start with some meds.
 

Ivana

Senior Member
Messages
112
Hi Banksy,

sorry to hear what u have had to go through.. I enjoy sleeping as well as i dream that i'm healthy.. I just get a bit woried when i sleep for excessive amounts of time.. I hope everything goes well and you will find help withthe meds!
 

Ivana

Senior Member
Messages
112
yeah same, but it gets worrying at times.. My symptoms started 5 yrs ago, but i was able to half function.. Ive been in bed for over a year now, thy finally came crashing down.. Hows about u? Any functioning in the last 12yrs?
 
Messages
19
Location
Dubrovnik/Croatia
first two years was hell. after started to recover. but last half year starting to fell worst. today fell like shit. went to store twice just to go out, but felt like barely can stand. last 7-8 year work half time(2 years eaven full time). im so affraid now because i have 2 kids. this fear is making me eaven more sick. cant stand near my family(to see me pale and worried), cant imagine me without them for a second. really hope i will pull out. i need 3-4 hours to be able to work.
 

Ivana

Senior Member
Messages
112
Im sorry to hear that.. I am the same.. The fear makes me soo much more sicker, i am in bed all the time and thats when the fear takes over.. I have only been able to work part time for the last 5yrs.. I was always calling in sick. Im also scared to be near my family, they want to put me n a psych hospital.. I just checked my blood pressure, it is 73/40.. Half the normal number it should be, but no one still beleives me
 
Messages
19
Location
Dubrovnik/Croatia
i can not stop completly. i just went to market to buy fish, homemade chees, petrol etc....but now after half hour fell like shit. now after breakfast have to work 2 hours. have to break thru this relaps. its eaven worst than begining. at the begining didnt now what is hapening. was thinking either im going to die or get well. and we all know happend worst thing. we become living dead. so now i know what is going to happend and it frighten me more than anything. brrrrrrr....but lets stay positive :D
 
Messages
25
Hi Ivana, I was doing some research about the same issue you posted several months ago, it seems it´s not usual to sleep that much. Although my last year has been very difficult with fatigue I also have sleeping much better than before (acute insomnia for some 6 years).
I am managing my hypersomnia the next way: If i had a bowel movement in the morning (and my colon is clean I asume) I wait until last thing in the day for eating any carbohidrato, a little tiny bit of any carb after having my colon emptied makes me super sleepy, and if I don`t go to sleep inmediatly I feelawful, than I try to take care of this to go on awake the whole day.
If I was not able to have bowel movements at all or not much, then I can have some carbs.
By carbs I mean not refined, non starchy food, etc.
I hope this helps, good luck