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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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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
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.
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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