Sleep, what's that???: It's been so... - Fibromyalgia Acti...

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Sleep, what's that???

SarCisMe profile image
16 Replies

It's been so long since I had a good night's sleep, (2 straight hours USED to be my best with 2 sleeping tablets), now I take what sleep I can, when I can. I get so badly FATIGUED, I just cannot stop my body from going to sleep when it desperately needs it so much.

Anyone have any tips/advice that will help me to SLEEP??? PLEASE.

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SarCisMe profile image
SarCisMe
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16 Replies

I empathise. If you have exhausted all meds to aid sleep, could you ask your gp if you could be referred to a sleep clinic? This would at least identify how your body and brain responds when it should be in sleep mode. After all, sleep deprivation accounts for many physical and mental symptoms which ultimately lead to poor health. Depression is a common problem, through low mood brought on by lack of restorative sleep, to aid the brain to function fully. Hope you get some help soon. Mx

SarCisMe profile image
SarCisMe in reply to

Hi md55,

Thanks for replying.

That's actually a very good idea, I haven't really slept very well since I was in a very serious RTC in 1987. I got knocked off of my motorbike, suffered all kinds of injuries both internally and externally, unfortunately being in huge plaster casts for so long seemed to train my brain not to be able to sleep through any night as my body woke up every time my body needed to move positions. So you could be onto something there. I can only lay in bed in one good position too,(propped up with a back rest and lots of pillows, which I guess isn't helping my body try to relax.

I will get myself an appointment with my GP and talk to him about the sleep clinic.

Thank you.

Take care & best wishes to you.

Angie

secondhandrose2 profile image
secondhandrose2 in reply toSarCisMe

It also sounds as though you were traumatised in which case you may have PTSD symptoms during the night, when you have nightmares or milder disturbance of sleep due to being hypervigilant in order to prevent a repeat of the accident - unconsciously vigilant of course. xx

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that and I sincerely hope that you can find some resolution and relief to this issue. I am a fully paid up insomniac and have been for most of my adult life so I am so sorry but i cannot really help you on this topic.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

SarCisMe profile image
SarCisMe in reply toTheAuthor

Thank you Ken for replying. Sometimes it's a big help just knowing that your not the only one struggling with Insomnia and that there are others who genuinely do understand and appreciate how badly it can affect your whole life.

Best wishes.

Angie

dillydally1 profile image
dillydally1

I also cannot help as I too have not slept properly for years. thinking of you though x

SarCisMe profile image
SarCisMe in reply todillydally1

Thanks dilldally1, your helping by replying. Knowing your not on your own with this and that there are other people suffering like you, you know that they can truly understand what your life is really like.

Good luck to you in your quest for some sleep. xx

kauto profile image
kauto

I tend to get up after the 2hrs I manage to get that much, I will sit on the sofa in the dark or have a cup of tea for about an hr then go back to bed and take another sleeping tablet to get at least 2 more hrs I know you shouldn't take to many sleeping tablets but as long as you don't do it more than once a week you shouldn't have a problem I find at least 1 night decent sleep of 4hrs helps

SarCisMe profile image
SarCisMe in reply tokauto

Thanks kauto, I will give that a try. It's a good idea, like you say though, only do it once a week.

You get into a never ending circle that's made so much worse with none to very little sleep.

You take care and once again, thanks for that idea, I will try it Friday night, as have no plans for Saturday, just in case my sleeping tablets make me feel bit hungover.

xx

SarCisMe profile image
SarCisMe in reply tokauto

Hi kauto,

Just to update you on results of my trying your idea for sleep.

It worked for me, THANK YOU SO MUCH.........

To have some extended sleep, wow, I got almost 2 full hours. The first time in a very long time. Luckily new I had a clear day today, so took the extra tablet early hours this morning.

You take care, and once again a very big THANK YOU.

Best wishes

Angie xx

BlueMermaid3 profile image
BlueMermaid3

Hi there

I've only just seen your post. I too am a chronic insomniac. My previous GP was happy to prescribe me with sleeping tablets.

I have now moved GP and they have completely refused me sleeping tablets.

In desperation I tried some Nytol and I got a few hours sleep.

Unfortunately lack of REM sleep is part and parcel of Fibromyalgia.

You are definitely not alone.

Hugs

Lu xx

SarCisMe profile image
SarCisMe in reply toBlueMermaid3

Hi Blue mermaid,

Thanks for replying and for coming up with something I haven't tried yet, but I will be doing now.

It's real bad when you get into that harsh circle of suffering so badly with pain that you can't get to or stay asleep, then the following day your not just tired oh no your way past that and have another sleepless night to look forward too. Doctors seem to be getting less and less at helping us get that desperate sleep we need, we have to have that sleep to function, then you get the 50 questions, why do you think you need sleeping tablets? What, your the doctor help me, I can't sleep. And on it goes. I am really lucky in one respect I have a supportive doctor, but she is only part time, so it can get very difficult to see her, then like you had to see a different doctor, that's what I have to do, they make you feel guilty for asking for something you need. Sleep deprivation is the worst for wearing you down, everyone needs sleep don't they?

Hugs xx

DebbieG49 profile image
DebbieG49

Hi. I too have been struggle with getting to sleep & staying asleep for 15 years since my career ending injury. Many years ago, I did have a sleep study & it showed that I was skipping on the surface of sleep with "Alpha intrusion into the Delta sleep" which is pretty common with FM. It is impossible for me to get into the deeper stages of sleep without medication. Many years ago I was treated by Dr. Rosenfeld who did this study fmcpaware.org/sleep-apnea-r.... He was a good doctor then moved to start his research on FM.

Good sleep preparation is critical for FM. If you miss out on a good nights sleep it you hurt even more the next day. Turn off the TV, Ipad, computer--anything that emits a blue light & (LED) which interferes in your body preparing for sleep. You may try to wind down with a tablet game but it's one of the worst things you can do. "...light — particularly of the blue variety — can keep the pineal gland from releasing melatonin, thus warding off sleepiness. You don’t have to be staring directly at a television or computer screen: If enough blue light hits the eye, the gland can stop releasing melatonin". Check out

washingtonpost.com/national...

Check out 2014 article 37 Science-Backed Tips For Better Sleep Tonight

huffingtonpost.com/2014/03/...

I do take Melatonin & Tylenol PM. I am trying to get off Ambien which I have been on for many years. Ambien works well for me but without it I am staring at the ceiling all night long. It's not good to be on it so long. I am on 1/4 tablet trying to get my own brain's natural sleep cycle to kick in which is suppressed because of the Ambien. I know that will be a struggle but it is time to get off this drug I am so dependent on.

I shut the TV & computer off an hour before going to bed. There is no TV in my BR. I read a book. When I finally try to go to sleep I have a recording of a gentle thunder rain storm I listen to with my MP3 player. Eventually I fall asleep. I'm working on other ways to help me get to sleep. A 1/2 of a glass of warm milk can help. Meditation & deep breathing exercises are good. Hang in there. Its a vicious cycle:

pain + lack of sleep = more pain, anxiety, depression, a short fuse... I was seeing a sleep specialist but he wasn't much help. His comments during follow up appts were condensing so I stopped going to him. I wish the medical community would stop worrying about ED & start developing medications for insomnia & FM.

I do run a fan in my BR to help with air circulation and to create white noise. Buy the softest sheets & PJs you can find. Forget about fashion. You're fighting in the trenches now. Do you need a new mattress? Pillow? Keep the BM cool. Keep reading articles & trying new things. The most important thing is to not stress about it. Doing so will only add to your anxiety & overall pain. Can you go for a walk at sunset to clear your mind? Just make sure you are inside after sunset or the mosquitos will eat you alive & you will be scratching all night long. Everyday I always step into a hot shower before bed to just rinse off the stickiness of the day. I live in Florida and it is so hot & humid. This helps alot.

I practice & instruct Tai Chi Chuan & QiGong during the day. See if you can find a class during the day at the community center. It will help you in many ways. It will provide you an opportunity to relax the body & calm the mind. Avoid practicing at night or your will end up cleaning the kitchen for hours after class like I did! It's best to stay off the phone in the evening. I don't need to fill my head with other people's gossip & problems which only aggravate my pain. I just want to settle my mind down. I don't watch programs that are action packed & violent. I've had enough of that in real life.

Do you draw, paint, have a hobby you can put on some relaxing music? Try going to Michaels or Joannes and get a paint by numbers. Its easy. You don't need to be an artist who can draw a straight line. I am and I still can't draw a straight line & I don't need to draw a straight line. If I need one I use a ruler. Find a nice painting you would like, put on some relaxing music from Itunes or Youtube & paint for an hour in the evening. Paint slowly & enjoy. Don't think about anything, just paint. There are adult coloring books you can buy & color with colored pencils. Hey, I love them too. I call it color yoga where I work on different coloring schemes, shading, tones.... Check out Doyer Pub online. There are so many books to choose from. I could go nuts when my nieces are coming to visit. How about doing the Zen Doodles? Get a Joannes 40 % coupon & check out their books. I believe the back to school supplies are in the stores. I usually stock up on Crayola colored pencils (avoid the cheap ones), colored ink pens, watercolor paints, art paper... Everything is on sale & I buy a lot to last till next July. This will help you settle the mind thus settling the body & manage your pain.

Also check out the health store & see what they have. They usually have a sleep supplements with a mix. Buy a small bottle & try if for 30 days. I don't know what your situation is at home. I live alone which is a blessing. I try to just let go of thoughts from the past, what happened today, what I have to do tomorrow... I simplified my life & I am trying to not participate in all the drama in the family, with friends...with life. I hope this helps. I've been through so much through the years and I enjoy sharing what I learned with others. Take care

secondhandrose2 profile image
secondhandrose2

I do feel for you all - I have exactly the opposite problem in that when I am in pain or feeling low for some reason I sleep for England - 12 or 13 hours and still yawning half an hour after waking, feeling dreadful and taking hours to wake up, sometimes never do, or so it feels! I went to the sleep clinic, thankfully no sleep apnoea, just my bodily response to pain is sleeping but the pain disturbs the sleep... But I do appreciate that is better than not sleeping enough which creates other problems so hugs to those of you who suffer. x

kauto profile image
kauto

I'm so glad but remember only once a week xx

SarCisMe profile image
SarCisMe

Hi, yes I know only once a week will keep me going for quite some time.

A BIG THANK YOU TO YOU.

Take care

Best wishes

Angie x

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