new symptoms/ can not wake up

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ginanicole12

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hi, i’m new here but i’ve had fibromyalgia and cfs for about ten years now. recently i’ve been suffering so much i just don’t know what to do anymore. i’m currently taking low dose naltrexone and marijuana. my main problem right now is that i can’t seem to wake up. i’ve been sleeping until 3pm almost every day. when i wake up any earlier i feel super foggy and dizzy and weak. sometimes this is accompanied by seeing floaters and sensitivity to light and sound and it feels like my bones are vibrating. this has been happening for a few weeks and it’s extremely effecting my life. i don’t know what to do and i feel horrible. is this something that any of you have experienced? or at least some of these symptoms?
 
hi, i’m new here but i’ve had fibromyalgia and cfs for about ten years now. recently i’ve been suffering so much i just don’t know what to do anymore. i’m currently taking low dose naltrexone and marijuana. my main problem right now is that i can’t seem to wake up. i’ve been sleeping until 3pm almost every day. when i wake up any earlier i feel super foggy and dizzy and weak. sometimes this is accompanied by seeing floaters and sensitivity to light and sound and it feels like my bones are vibrating. this has been happening for a few weeks and it’s extremely effecting my life. i don’t know what to do and i feel horrible. is this something that any of you have experienced? or at least some of these symptoms?
Hi Ginanicole12,

Welcome to the forum - it's lovely to have you here. I'm so sorry to hear you're facing such a struggle at the moment. Do you know if anything in your life changed or was getting too much in the run-up to this recent spike in symptoms? Has anything shifted in your self-medication schedule? It sounds like you're in a lasting flare, but of course it's important to rule out anything else that could be causing what you're feeling.

I'm not quite in the same boat - my symptoms have always been more on the fibro end of the spectrum - but what you're describing reminds me of a friend of mine who had the same dual diagnosis and was really in bad shape for several years. She made a massive breakthrough when she switched to a ketogenic diet - it totally transformed her life, and she now functions at almost 100%.

This is not to say that keto is your magic pill, but rather that doing some experiments to see if anything might help could yield rewards. Have you already gone through the motions of trying different diets, lifestyle approaches, etc? (I don't want to preach to the choir!) There are some amazing ideas here in the forum of things to try, and every little thing that helps can layer up towards getting to a better place. Sunkacola's pinned post at the top of the general discussion section of the site is a good place to start. Finding a mix of life hacks and supplements that improved my symptoms has been transformative for me - I hope you can find something that does the same for you too. I wish you a speedy return to a better state 🌷
 
Ginanicole 12, hi! You suffer a lot for so many years, no wonder you feel horrible. I'm thinking, this oversleeping-not being able to wake up thing you have, could it be consealed depression? Considering your hard life for ten years now? I know that oversleeping is a symptom of depression (I've had it in the past) - or insomnia to other people. The other symptoms you mention ( sensitivity to lights, etc.) could be from oversleeping, because it's not good for humans to sleep for so long. It's just a hint, I mean maybe oversleeping is not a direct symptom of fibro-cfs, but from the psychological exhaustion because of those two. I wish you the best, my friend.
 
Hiya ,I’ve had fibro about 15 years now ,when I was told I had it first ,I slept for England,But I never slept that late,floaters in the eyes are something we all get when we are older so that’s not uncommon at all.I have tonnes .
Are you sleeping at night ?
If not your sleep patterns are all mixed up .
Also I don’t no if u are on Medical Marijuana or stuff you have found your self ,as I imagine that can knock you flat,and that’s not a natural sleep.again I don’t no what sort your talking as I’m from the uk and we can’t have it here.
I would say get up ,your going to hurt whatever you do but movement really helps.spending your life in bed is no life ,maybe talk to your dr again.
See if they can up your meds or change them about .
 
If you're not able to understand where your symptoms are coming from, I would absolutely see a doctor. They could be attributed to any number of things.
 
I read your post , now I feel like this 😔 anyway I went ketogenic about 2 weeks ago , made a big difference c.f.s is horrible , you want to do so many things and you just can’t ? ? ? All of it’s horrible , anyway you’ll get good advice by here and lots of support, here’s a gluten free biscuit 🍪 and a cup of decaf tea 🍵 😬
 
Jem’s I’m getting used to ginger tea, I still don’t love it and its giving me spicy lips but I’m adapting now 💛🧡💛
 
Jem’s I’m getting used to ginger tea, I still don’t love it and its giving me spicy lips but I’m adapting now 💛🧡💛
Well done lovely ✨ Spicy lips = badass!
 
taking low dose naltrexone and marijuana. my main problem right now is that i can’t seem to wake up.
In case you return: From my experience my first guess is it's the LDN or MMJ or both. I'd try to reduce or stop: What happens without?
 
Hi Ginanicole12, I have a similar problem. I couldn't stay awake no matter how hard I tried. Medications like Vyvanse and Concerta help me stay awake most of the day.
 
Hmm, Ginanicole12 still hasn't been back since, but I'm now thinking about what I do, without meds.
I think my morning exercise wakes me up, even if slowly.
If nec. I'd do a cold shower - altho it reliably sends me to sleep directly before bedtime and at night🤪.
Theanine helps balance waking/alertness & sleeping, has helped waking up. After taking it before bed first, I've now moved it to around 2:00.
Since 500mg taurine kept me up and awake (4h40, with no big backlash, altho it's sposed to make you sleep) I'm trying to use it as 'coffee'.
Magnesium glycine was having an excitatory effect at night (racing thoughts). Stopping it and doubling passiflora has greatly improved sleep. But now it might be interesting to try at daytime. The amino acid glycine, which @djhsix said helps GABA, might be something for me for the daytime then, tho, as that seems to be 'exciting' me, malate was OK. (Tried stopping that too, but doesn't feel good at the mo.)
 
Ginanicole 12 I also sleep way too much too so much so recently I’m waiting for 7 dwarves to come in and put in a glass case! It may be a good idea to see your dr get some bloods done and maybe some vitamin checks too, I also wake up feeling foggy and a bit hungover , I get tinnitus too ( not sure if any other fibrobud’s get this) either way get all the checks and tests you need, hope you have a good dr as some can be rubbish, when they find out you’ve got fibro they assume all your symptoms are imaginary ( known a few who’ve done this ) hope you find the answers you need though, take care xxx
 
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