With Fibromyalgia you don't live...yo... - Fibromyalgia Acti...

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With Fibromyalgia you don't live...you simply exist.

Hertsman profile image
10 Replies

Just wondered if anyone else feels the same or maybe I really am depressed as the doctor keeps telling me. After many years of battling with this dreadful disease I've now been diagnosed by a rheumatologist at Ashford hospital in Middlesex. Doctors kept giving me opoid pain killers and anti depressants but they just make me feel worse. I just don't have any motivation to do anything. Few months ago after many days of sleep deprivation I remember sleeping a whole 14 hrs. I woke up and I felt like a miracle had happened. No pain at all and my mind was as sharp as a razor. I was running up and down the stairs, I even went out for a jog. I was doing all the things I experienced as a young man. I honestly believed a miracle had happened and I was cured. Woke up the next day and felt like a zombie. I'm convinced this dreadful disease is related to lack of quality sleep but every morning I wake up I just don't feel rested. I've tried all those natural supplements but nothing works. Just wondered if anyone else has similar experiences or can give advice. I really do feel this is a life sentence. I wake up each day to live another day of pain, doesn't really seem much point.

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Hertsman
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10 Replies

Oh bless you you sound so down and i aint surprised this fibro is a wicked thing i was the same 2 years ago i was walking in the country for 5/6 hours with the doggy/ walking all over the show with my partner we would drive out to places now cant even drive or be partner in car for very long as i get fidgety i used toom be the first there when anyone was moving house working with them unpacking packing i would decorate my whole house and be paiting til rthe early hours to get it all done but not now i cant even be bothered to paint my nails some days !!

i have had to change my whole life around i cant see me ever working again as i never know how i am gonna be some days i think people think i have had a drink i stumble about lol i forget hings and have to write them down all the time ha ha but ther you go i try to tell myself it could be worse and say you should not let fibro rule your life you should rule it

but its not always easy to keep your posotive head o i know

i am on so many tablets its a joke like everyone on here

but it is nice to chat to you and hopefully will chat again i was then signing off and saw your blog and had to answer

you take care now and your not alone

love to you diddle x

Lack of good quality sleep certainly seems prevalent in Fibro sufferers that's for sure .

I never wake feeling refreshed , even if I've slept for a long time. However I find that sleeping tablets knock me out but then make me feel woozy next day, and without them I struggle to sleep at all. There certainly isn't a simple answer.

Another problem with Fibro of course is that it can make us feel less motivated to get any fresh air and exercise , which in turn means we don't always get physically tired enough to sleep, which then means we're exhausted - it's a vicious circle I think.

I know I can go to bed feeling exhausted but still be clock watching at 3 am , tossing and turning and getting irritated . If I do manage to get to sleep I'm awake every couple of hours and by morning I feel like I need a good night's sleep ! .

xx

kilby46 profile image
kilby46

i agree with all the above but now take a sleeping pill which sometimes help s

Hi there sorry to hear you are feeling so low, you must go back and see your G/P for help etc.Yes i quite agree that sleep is a major factor with this horrid illness,my G/P assures me that this is the case,have you heard of a drug called Gabapentin it blocks the nerve messages that cause pain it also has a sedating effect,i have been taking it for nearly 10 months and have had the best sleep in years,it doesn't stop everything altogether but having a restful nights sleep is a good thing for us who have Fibromyalgia.Hope you are feeling brighter soon take care hugs to you xxx

sharonissexy profile image
sharonissexy

ditto to everyone above, its been years since i felt refreshed when i've woken up. Plua like you i have no motivation to do anything, and on the rare occasions that i do i can't physically do it mind might be willing but body is beyond help!! and its true the less sleep that you get the worse the pain and fog so its just a vicious circle.

All i can suggest is have a good all moan on here i've only been contributing a few days and its already helping me, just need to get past the feeling guilty for doing it and i'll be ok lol

best wishes

xxx Sharon

Faeryduster profile image
Faeryduster

Hey hun,

I am depressed but I feel the same way. I dont feel like Im living with this condition - just existing as you put it. Sometimes I dont even sleep for the night and when I go to bed, in the morning then I cant get out of bed because I am so exhausted all the time. I never ever feel energised enough to do anything. I just put the garbage out and by the time I came bk up the steps I felt like I was ready to collapse!

I've zero motivation to do anything and it's a daily struggle too. Im doing CBT now as well as on antidepressants, and trying my best to hold on. Also I started writing a book and somehow it gives me something to look forward to. Its a struggle motivating myself to write but I tell myself Im doing it to make my grandparents proud. You should try to get some therapy to see if it might help. As well as maybe find a personal project you can work on. Big hugs xxx

Dreamer profile image
Dreamer

Hi all, will try to keep it brief.

Me and FM: No stimulants, alcohol, chocolate, fizzy drinks, tea, coffee, artificial sweeteners, processed food, some curries, MSG, salt, sugar etc. plus NO medication.

Do: exercise, relax, meditate, have Reiki.

Be positive, accept what you have and live in the now.

The exclusion of these things dosen`t help the FM, they only make it far, far worse (for me)

Sandy247 profile image
Sandy247

I can totally empathise with you. I feel the exact same way. I've put a link below which will take you to a video which is called 'Natural Deep Sleep is your Birthright'. It's an hour and a half long Sleep Hypnosis session, aimed at helping you to improve your sleep

youtube.com/watch?v=bff3fiA...

It is very effective. Hope this helps with your sleep. Shell x

theshadow profile image
theshadow

Dear Hertsman

Sorry to read you are feeling so low at the moment. Just hope that "a problem shared" & all that will help. I'm afraid I don't have any magic cure, would be a "mil -yon-air" if I did! LOL

I think most of us suffer from depression, just part of fibro I think. My body won't tollerate most drugs, so I try & do without. Luckily I have my best friend/comfort blanket in the guise of my golden retriever, I'd be lost & in a very dark place without her!

I read somewhere that there had been clinical trials done on "normal" people by waking them up every two hours, & they started to get some of fibro symptoms after just a couple of days. It just shows you what sleep deprevation does. It sure is a vicious circle for us!

Just hang on in there, don't be too hard on yourself, & try & gain some comfort that you are not alone in this, & that many other people care about YOU! xx

Hertsman profile image
Hertsman

Dear all, totally blown way by your responses and kindness. I didn't actually think that anyone would reply. Thank you so much for your kind words and advice, it really is greatly appreciated. Off to have a nice warm soak with some Epsom salts. The salts really do help my aching joints and also magnesium spray oil helps too. Hope everyone is okay well the best you can be with fibromyalgia anyway. Good night

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