OMG.... I have resonated soooo much. In particular wired mind and tired body. I am so ambitious and want to achieve things but I haven’t been able to. I’ve had to give up my first love music, as a musician this was soul destroying 😔
Sorry to hear this. I had to give up everything in my life as well. However, over the past 11 years, a lot of new and interesting things have come into my life such as drawing, drumming and choir. Before covid, I was playing djembe at our choir gatherings. Sometimes I have to rotate activities. At the moment, I am taking an online sketching course at our local college. This seems surreal because It took years to get to this place, with lots of setbacks. The more I respect my limitations, the more I can manage. Sometimes it's drumming for 5 minutes. I don't mind as long as I'm going in the right direction. However, that's not say that I don't have very dark days. Although ME/ CFS has taken so much from me, I am beginning to see more and positives in my life. Having this debilitating disease requires a lot of patience and self love. Don't give up on the possibilities. I was bedridden eleven years ago, and I am still housebound for the most part, however have have managed to find ways of fulfilling many of my hopes and dreams. My dreams just look different than before ME/CFS. Wishing you all the best in your recovery! 😊😊😊
I've been sick for 20 years and @ 95% bedridden for the last 10 years. I had so much trouble sleeping. Last Christmas my husband bought us an adjustable bed. It has made a huge difference. I would encourage anyone who has ME to try this type of bed if it's at all financially possible for you. I'm very aware of how lucky I am. We were able to use a small inheritance. However, if I would have known how much it helps, I would have financed one years ago.
Thank you so much for this video! Insomnia is a symptom that's not really taken seriously enough I think. I was recently diagnosed with ME and the insomnia is crippling. I go days without sleeping and the little amount I get is not refreshing at all. I was scheduled for a sleep lab and consultations with a specialist, but it all got cancelled due to Covid. It's very difficult. I can deal with the muscle pain and all that, but not being able to sleep reduces me to a sobbing mess most of these days. I just hope it gets better on its own eventually :(
Take care ❤️👍 For me insomnia was worst when I first got diagnosed and wasn’t really ‘used’ to living and dealing with ME/CFS so I kept doing too much and it just led me too getting more exhausted and more insomnia. It got better for me, and I really hope it does for you too. All the best. :)
I find melatonin and a very mild antidepressant helps me to sleep. It's not 100% but it's much better. These days I always fall asleep listening to an audiobook from the library, usually fiction. During covid and the political shenanigans, I've had to detox from the media. Meditation and breath work have also been been beneficial. This has not been easy because I have a very active mind. This is still very much a work in progress. Jon Kabat-Zinn wrote a book called "Full Catastrophe Living". This is an excellent book for people with health issues. He also has a big presence on RU-vid. Hope this helps because I know it's so hard, especially if pain is involved. When I was first diagnosed, I had to sleep in a recliner. I have a lot of food intolerances and staying away from certain foods lessens the pain. I feel for you & I hope this helps. 😊
@@bobbiev7062 Yes, Melatonin and CBD oil seem to help me stay asleep for at least a while longer, it's the falling asleep part, though, that's just not working. Next time I see my GP, I'll ask about the antidepressant. Willing to try ANYTHING at this stage.
@@kjetil_ so true @Kjetil '. I have the same experience. If I do too much I get wired and can't sleep. When I feel wired during the day, I know I've done too much. Thanks for sharing. 😊
Hi Annie. I'd advise you to be careful with dosage. I take amitriptyline 10mg, a very low dosage. I started with 25mg and was extremely drowsy. One of my specialists recommended lowering it to 10mg. This seems to have worked for me. Sleep hygiene is also helpful. Our minds get so overstimulated during the day, it becomes hard to slow our minds down at night. Best of luck!
I go one extreme to another either sleep for days (non refreshing) or cant sleep for days. Restless legs and muscle twitches can be the difference between dropping off or not. Ty jonny as always, hope you're well. Love from London 🇬🇧
I would argue, having run the gamut of symptoms, that the insomnia is the worst. There is a reason it is used as torture. Not only does it exacerbate every other comorbidity (in my case quality sleep would likely eliminate most of my ME/CFS) but it also prevents me from escape. When one is depressed or sad or anxious, one can escape their realities if only for a few hours. If one is ill, one can sleep away the pain. I went 3 days without sleep early in my illness and had I not been so weak and in pain, I would have ended my life. I was delusional and just needed the relief.
I so agree with you best gift I could receive is to sleep for 8 hours ( I wake every 2 hours ) and not a deep sleep been prescribed amitrypline but reluctant to take any prescribed drug as no faith in any of the doctors I've seen
I've been on Ambien (not generic) for decades. Can not sleep without it. It is so expensive and I fear what the repercussions will be with long term use. I have had ME/CFS and FM for several decades. RLS and neuropathy is a constant as well. My family doesn't seem to get it that my nightly torture just to get to sleep is endless, not just once in a while so I don't travel anymore (not that I did much before). I am so grateful to finally be retired from teaching as I was constantly running on sleep deprivation. Would fall asleep finally around 2, 3 or 4 am only to have to get up at 5 or 5:30 and be on the go for twelve hours plus each day.
Agree, this is a really cruel symptom :( Luckily been finding some sleeping pills and herbs that helps me get insomnia less often. I find that on nights I don’t sleep much - if I do stuff the next day (reading, socializing for 30 mins, going for a 5 min walk) I may still be able to do them, but the day after that I always wake up with really high symptome severity having done stuff on the day after bad sleep.
Wow, I'm going through the early stages of getting a diagnosis and one of the confusing things for me is that I have spells of insomnia when I'm kind of on a good run with energy levels. Yet recently I have crashed and have been sleeping 16-17 hours a day. Really useful to know to expect insomnia too.
Yes, I thought having a Fitbit was a good idea, until I got one, it showed me how much unrest full sleep I was having. It just proved that I wasn’t getting the sleep I needed, but the next bit was helpful to contact a professional to help with the sleep problems
Agreed, insomnia is a major symptom that I struggle with and I feel that if I could fix that symptom then I would be much better. I've had ME for 4 yrs now and I'm 43 yrs old male in the UK. GP's are mostly clueless and unhelpful. I take 50mg Sertraline (Zoloft) SSRI anti depressant which helps my mental health but also makes sleeping even more difficult !!. I'm considering asking my doctor for melatonin or mirtazapine to help me sleep but not keen on being reliant on a cocktail of drugs. Tired but wired every night is torture. Anybody got any tips for sleep please ?? Thanks for your videos, it's not often I see guys with ME/CFS, and I can really relate to your points of view. Peace ✌
@@fight4me747 Thanks bro, that's something I've never even heard of until I seen your video on it just yesterday. I will certainly look into it. Happy new year to you and all 🙏
@@fight4me747 It's great you've found something that works! I haven't had much success with taking supplements or natural sleep aids (though Pukka do a lovely blend of calming tea with chamomile, oat flower, lemon balm and valerian I would recommend). Thinking of consulting my GP in the new year to get a prescription that might help.
Since the beginning of CFS I have been on prescribed sleeping medication. Nothing else works. Still feel lousy when I wake up! Feel worse than when I fall asleep!
I have a hard time sometimes with sleeping pills because my body is very sensitive to certain medications medication. Early on I took sleeping pills and they made me drowsy the next day. I try many things now such as a warm bath, meditation, melatonin, audiobook book, very small dosage of antidepressants for sleep, sticking to a nightly routine, and breath work. I sure hope you can find what works for you. It does take a lot of trial and error. Take care.
Insomnia and brain fog easily take my rather mild CFS to a debilitating state where I can't function, barely read nor watch TV or spend too much time on the laptop. I feel like if I get insomnia on a single night, it is very difficult, as a CFS sufferer, to get out of the spiral that is prolonged insomnia. The lack of sleep in your first night will increase agitation (primary and secondary anxiety and nervousness) the next day and, in turn, makes it even harder to fall asleep that night (and so on). I am just now in such a spiral, and I think only sedatives will help until I find a hack. Currently, looking at Dr Teitlebaum's work for that and his natural supplements. Has anyone had some success with that?
For weeks I would get muscle spasms and ticks JUST as I was about to fall asleep. I'd just jump and be awake again. And the longer I went without sleep the worse that would get and the worse that got the harder it was to sleep.
See if your doctor can check your magnesium levels. A lot of people with ME/CFS have low levels of magnesium, and magnesium supplements can be helpful. Not something to mess with though because too magnesium can affect your heart. Best of luck. 😊
@@bobbiev7062 @julie thanks guys :) I am taking magnesium at the moment. 250mg tablets, but I take 2 👀 I must look up how it can affect the heart. I was trying to give myself a "boost" since the spasms were so bad.
Please guide me, I am a male with cfs, peripheral neuropathy and fibro, I have been home bound for 10 years, I can't walk, every step is painful extremely, so if there is a marriage ceremony or death ceremony how am I suppose to neglect it , I mean there is tremendous pressure to attend when I can't, but no one believes and apart from others I myself don't feel good not attending a close relatives death or marriage ceremony, it's feels so shameful to live
@@fight4me747 India, bangalore the small nerve fiber neuropathy is the worst thing, like can't keep the feet down the bed, and no no on bare surface, I tried ldn, but it was not for me, started with 0.5 only 3 days gave me severe kidney pain, hardly with tender and sensitive and burning feet I walk till toilet, and rest, back to bed and rest, from bed to kitchen and rest, like few steps and sit down, the crushing pain is also worse,
i don't sleep any more than a few hours a week, i 've always wondered what i could accomplish if i got even 4 hours a day . . . i went out on my bike tonight and thought, this is really quite stupid; but it's better than staring a the ceiling. How can i fix this, seriously- doctors ignore me and i will not take drugs.
@@cindy.s2244 honestly -- not great, i have chronic infections , a dental surgeon made a mess of me on monday past - so no sleep and no food . . . this year just keeps delivering more crap for me to deal with - i do manage a tiny bit of yogourt before i lay down some one said it had a calming enzyme in it. i honestly wish i wasn't in so much pain i could ride my bike until exhausted. i have this looped on my iPod and plugged into a speaker in my room, it' helps - if i do drop off even for a bit it will even help me dream instead of trauma recall - ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-GhLzhL3RLg0.html&pp=ygVGZmFsbCB0byBzbGVlcCBpbW1lZGlhdGVseSBzb290aGluZyBkZWVwIHNsZWVwIG11c2ljIGNhbG1pbmcgbWVkaXRhaXRvbg%3D%3D
The video is to inform people of ME/CFS symptoms and how Insomnia relates to this illness. Unfortunately, one size does not fit all when it comes to treatment/solutions for ME/CFS. Talking to your doctor is the best way to go if you want to figure out a treatment plan for your sleep.
