Sleeping 14 hours a day. Stimulants dont even help. Need help!!!

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I am a 26 year old with a husband and 2 year old son. I sleep 14 hours a day and never feel refreshed. I was diagnosed with fibromyalgia when i was 15 because i woke up one morning and my skin was so sensitive that anything that touched it would be so painfull i would just bawl. I was sent to the hospital and put in quarantine because they thought i had bacterial spinal meningitis. Three days later the doctor came in and said well i think you have fibromyalgia. Ever since i have been plagued with intense fatigue, paralysis upon waking, brain fog and un rested sleep. I do have sleep apnea but i find it doesn't do a thing. I have tried many stimulants and the only one that has done anything for me has been vavanse but it messed with my emotions too much. Please help. I want to be a better mom to my boy and wife to my husband but after 10 years of dealing with this i am running out of hope.

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  • Posted

    You poor thing. I started when I was pregnant with my last child (she is now 33) I had three other children ranging from 9 to 16 and the baby did not sleep much. It was a nightmare. I was living somewhere I hated I had my children at private schools (which I hated) so school runs. I was nearly falling asleep at the wheel, not good. I broke down when the baby was 2 and a half. But things just carried on as they were afterwards and she did not go through the night until she was 4 and a half so no sleeping for more than 2 hours at a time for me.

    My M.E. has steadiuly got worse over the last 4 years and even worse after a fall in Dec. 2018.

    I had no chance to rest when mine started,  you are young and if you get chance rest as much as possible and pace yourself and there is hope you will get better. look after yourself.I was 38 when I started and there was no help or advice out there then in 1983. People still don't understand my illness, friends and family and that is so wrong.

    All the best 

    Alison

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    • Posted

      Hi, Keir and Alison,  l also started with chronic health problems, virtually overnight, following birth of second son in l983, l was 33 then, l went from someone fit with great stamina, very active outdoor person, walking gardening, decorating, quite strong really. To a semi invalid in a way, just wasnt fit, no stamina, my abililty to run jump dissapeared, often with pain, even nursing my new baby difficult, sore in  stomach pelvis. 

      strong emotional response, but tried to keep some level of normality for my kids sake, and make the most of the reasonable times, my husband often got the brunt of it, whilst the gps were a bit clueless, first it was post pop csection, then gyny, hormonal,phycalogical, often nightmare times, as much due to lack of diagnosees and gp response, l even went to councelling, though knew it wasnt phycalogical though after years of it had become more affected, anxiety,  various meds made no differience or made it worse, it later turned out years later that l,d intersticial cystittus causing much of the pain, though some unexplained as with the bouts of fatigue, nausea, foggy groggyness. Your right Alison, there was not net for advice info, ld write to potential experts on candida, diets, gyny, the ic treatment did help specific symptoms of that, l copeed with the rest as it wasnt severe through followiong years, bouts of severe, but moderate rest of time. l knew there was links to fibro cfs sjorgens with ic,immune type condiitons,  but didnt know what they were, Its just in last 2yrs or so as symptoms of fatigue, weakness, sleeping day time, general aches and pains, the lst few month the worse, restrictions severe, semi invalid, but my kids are adults and living away, so at least only myself to concern about, clean up after, so cant take it easy and sleep a lot, not that we want to, frusrating annoying, an ongoing battle to keep upbeat, but always live in hope for the cure or improvement in some form of treatment.  Good job Alison you didnt have it severe when you,d 4 young kids to bring up.  Keir in some ways your children and partner are motivators for you, but very hard work, responsability, and l know l felt guilt that l wasnt the active mum l should have been, and didnt have it severe at that time, also felt some gult with husband, he got the brunt of the times l was frustrate and angry letting off steam, he didnt even get a good sexl ife, that ws near non existent, it wasnt all bad, we did have times of getting out and about when l was reasonable, bought a camper so we could set off n spec to treat kids and selves. There is no easy solution, just get whtever help you can from family friends, any who are cynical about affects get them to read up on it, or read this mb, l kesep spring water at hand and put all manner of vits mins soluable in it, others will come on and give you advice on complimentry, alternatives, all worth trying to see what might help you.  My husband an sons as they got older were really the only ones who truly believed in affects, they saw it daily, at its worst, most people dont, and some dont want to know or beleive, myown mum was cynical, as for others, got to stage of not even mentioning it, due to cynicism, But main ones are those you live with. As long as they and you accept your doing your very best for them and dont give up hope, Best wishes.

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  • Posted

    hi lve just wrote at length about my own experiences, with no prodduct names or offence, but being moderated, for whatever peculiar reason.Wont go through it wll again, Alison my probs started in l983 when son born cs, no net info advice, But now adults and away, so although it can be lonely on your own,  youve no one to be responible for or clear up after.  But l recall the responability and mine wasnt too bad then, still not the active mum and wife l should have been, and did feel frustration and guilt over, Keir dont forget your doing your best, but get any help on offer from family friends, and try not to feel guility or take anynotice of cynics, you cant help whats happened to you and are doing your best for them. There will be posters who advice you on complimentry supplaments, all wroth trying, but dont give up hope, best wishes.
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  • Posted

    Hi,

    Sounds like you are  having a difficult time. I have CFS and have for 17 years, there have been years when I sleep 14-16 hours and wake unrefreshed.  You mentioned sleep apnea, do you use a CPAP machine? Does it help you get restorative sleep, at least some of the time?

    It must be difficult to have a 2 year old and be exhausted from the ME - my kids are grown. Have you been able to see an ME/CFS specialist?  I wish you well.

     

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