Sleeping more and more: Hello all. I... - Fibromyalgia Acti...

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Sleeping more and more

27 Replies

Hello all. I have Fibro. Chronic pain and chronic fatigue. Over the past few months i have noticed that my fatigue has gotten worse. I will wake up after sleeping a good six to eight hour, depending on if i wake up due to body aches and have to take a pain pill. Once the pain medication takes effect, i may stay awake for three or four hours but due to my fatigue i stay in bed. Eventually i get so tired that i fall asleep for another six to eight hours. I feel like im sleeping my life away.

Now i have thought that it might be my medication but i don't feel drowsy after i take my meds. Also, if i have to go out like to the store, doctors visit, or church, I'm exhausted when i get home and sleep for at least five hours. I'll wake up due to my body aches, take a pill and then sleep for another six to eight hours.

I just feel like my energy is slowly being sapped from me. Is the typical for others? I'd go bsck to my doctor, but she said after trying a lot of different med that did not help me, that she didn't know what to do and suggested a nutritionist which i am talking the suggested supplements but feel no different.

i have read that many of you can't sleep which I'm assuming is due to pain. But I'm on Hydrocodone which is the only meds that take away my body aches. So is sleeping so much typical?

Mark

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27 Replies
karran12 profile image
karran12

Hello Mark I have just been awake most of last night too. I give up which painkillers are the best. Just taken two paracetamol but don't think they will do much good. It feels like you have been sleeping crunched up in a cardboard box, and you are all stiff in pain. I am sure the doctors think we are just making it up. When I go to work I ware a bandage on my elbow and sometimes my knee, it helps a little. Also I have pain relief cream. We all get by the best way we know how, but it's not pleasant being in aches and pain all the time. I also find a hot water bottle at night helps too.

Karen x

shadycurt3160 profile image
shadycurt3160 in reply to karran12

I'm now bed ridden with both Fibromyalgia and arthritis, so for everyday you can work count your blessings. There are always ways of helping the pain, like I mentioned to Mark, try ice cold baths, if you're really in that much pain you will get in, trust me, I do, knowing the relief it will give me, I also breath through the pain, but by lunch time I can't keep going, so then it's into an ice bath. Close the windows and don't let a draft get into the bath room while you're in the tub. My doctor has me on Endone and oxy-contin, but in knowing the arthritis is progressive I will have to stay on it for the rest of my life. Addiction is not an issue for this reason. A lot of people have said that you get use to the dose and it stops working, that hasn't happened to me over the three years I've been on it. I also take Panodol every four hours to top up the stronger meds. Talk with your doctor. All the best.

Jan

soulsusie profile image
soulsusie

Hello I have Fibro and M.E. And associated conditions, and also being tested for Lupus.

Personally I believe that it is a vicious cycle, pain from Fibro I largely have under control due to my meds the overwhelming fatigue I have is the M.E,

Have you had your Vitamin D levels checked?

Soft hugs

in reply to soulsusie

Hi, yes my vitamin D level is low but in normal range. Nevertheless I have been taking D3 but have not noticed a difference. Thanks for the suggestion.

honor1a profile image
honor1a

Hi Mark,

That is all too familiar a story! I have had Fibromyalgia since 1994-ish diagnosed in 2000 had to give up work in 2002. I chose to come off all prescribed medication as I feel I was just puting more toxins into my body with side effects I could do without! I have underactive thyroid which I have to take thyroxine for & I'm pernicious anaemic which I get B12 injections for every 8 weeks, which ever so slightly reduced my fibro pain & also reduced my exhaustion minimally! I only take paracetamol for pain at my worst, but I get physical relief by goung to the swimming pool ar first I just walked up & down the pool, the water supports the muscles & joints & it's pain free time for me, I now manage 3 aqua classes a week at my own ability level, I don't push myself in that class, as time went on I have improved my activity in those classes I also swim a couple of lengths only fit to sleep when I get home but quality of sleep is better, sorry I've gone on a bit! Why don't you ask your Dr for an intrinsic blood test to see if you are pernicious anaemic, nothing ventured nothing gained hope you find this helpful! I'm just goung to get myself ready now for my first aqua class of the week, today is a bad day for me physically painful & exhausted but I know going to the pool will give me some comfort for an hour, the jacuzzi afterwards is totally blissful, I hope this is helpful info for you take care gentle hugs x

in reply to honor1a

Thanks for the suggestion. I was taking injections of vitamin B12. I think but I was not as fatigue as I am now. When I took the injections I didn't feel any different. Maybe I should try again. I also took aqua therapy, but it made me worse. I was in bed all the next day. I can't work so all I can really do is rest. I hope in time my body will get better. I only wish I had someone to cook for me because even that makes me tired and I'm really getting tired of frozen microwave meals. I don't know what a intrinsic test is but I will ask my doctor.

Thanks

honor1a profile image
honor1a in reply to

Its just blood sent to a lab they do whatever to it & send to another lab, also ask for a thyroid function test thats just blood tes too, I have an underactive thyroid diagnnosed before the Fibromyalgia or B12 problems they are auto immune linked good luck take care :)

shadycurt3160 profile image
shadycurt3160

firstly Mark,

Only go to the places you really need to. Getting to church is not that important, I felt getting my calendar organized and only going to doctors appointments and getting someone to do my shopping really helped. Basically if you really don't NEED to go, then reserve your energy for more important things, like meditation, or get someone from church to record the sermon, if this helps you, there are ways to work around it. Christians understand you're not well and I'm sure they would drop over and pray with you. Also ice cold baths not only freeze the pain, but also wakes you up. It has been tried by many, including myself and it does work. God Bless and all the best.

Jan

in reply to shadycurt3160

Hi Jan, I really really hate the cold. I suppose if I was in enough pain I would try it, but for now my meds are working for my pain. Maybe I'll try a cold shower first to see if it wakes me up.

Thanks

shadycurt3160 profile image
shadycurt3160

firstly Mark,

Only go to the places you really need to. Getting to church is not that important, I felt getting my calendar organized and only going to doctors appointments and getting someone to do my shopping really helped. Basically if you really don't NEED to go, then reserve your energy for more important things, like meditation, or get someone from church to record the sermon, if this helps you, there are ways to work around it. Christians understand you're not well and I'm sure they would drop over and pray with you. Also ice cold baths not only freeze the pain, but also wakes you up. It has been tried by many, including myself and it does work. God Bless and all the best.

Jan

Shadows-walker profile image
Shadows-walker

Hi mark I have just finished a pain and fatigue clinic , it has been explained about the body pain recepticals have rewired it's self and they make things more acute, I was in a boom and boost cycle ,and how most pain med don't work on us now , I am on duloxtine for the nuralgia pain ,folic acid for my heart ,hair and blood , I have sulpodol which on the pain pathway of morphine for my bowl issues and am waiting patiently to be put back on hydrocholquinne once a biopsy result comes back , I have M C T D along with fibro and chronic fatigue and am possible going down the rd of lupus ,I now only do one physical job per day ,and one one mental I.e if I go shopping and drive myself that is both done as driving and concentration in one go ,I was like you back at the beginning of the year it's taken 8 months to get where I feel somewhat better the first 4 months I did nothing but sleep and try and function which I did badly ,then my daughter came home and made me rest the only job she aloud me to do was drive as she couldn't and only on days I felt up to it , I am back by myself now and I do one physical job per day and one mental I make sure I rest ,i potter about but nothing to much , have you been offered a pain clinic as they do help you need an open mind and make sure even if at the beginning you think it's rubish you go to all sesions as by the end it does make sence ,at the moment your body needs the sleep its fighting a battle just accept and go with it , I know it's hard but Don't worry you will improve the more you fight this the worse it is take care xx

DAVEO profile image
DAVEO

Yes this is typical of the condition, I often go back to bed for three plus hours most days but I do think that this becomes a routine. As for medication I'm not taking any at the mo as just been told two weeks ago that my Tramadol has to be stopped this has started RLS so now I'm on Mirapexin and this make me extremely tired all day. I find having a walk in the fresh air helps but that's all according to how much pain I'm in.

Sesame profile image
Sesame in reply to DAVEO

Daveo, my sister has severe RLS. She has had great success with Magnesium which the doctor gives her. You can buy it over the counter but maybe there are different grades?

She couldn't believe the relief she got after years of torment.

DAVEO profile image
DAVEO in reply to Sesame

Thanks to replying do you know what strength she takes.

Sesame profile image
Sesame in reply to DAVEO

No Daveo but I'm pretty sure she gets it from the doctor, I'd been telling her for years to try it but she only took it when the doctor recommended it, best of luck to you I hope you get some ease.

Sesame profile image
Sesame

Hi Mark, sounds familiar, tossing and turning all night and never ever waking refreshed. In fact I've forgotten what that feels like.

I started LDN in March this year, I noticed an immediate improvement in sleep. I still take a half tab to sleep at night, as my brain is usually racing. I go deeper into sleep now and get into the stage four sleep that we need so badly. If I wake I drift off again quickly, this is after years of broken sleep, partly caused by my job which started at 6 am.

The pain relief has been slower, this month I was helping my daughter move, and my routine went to pot, and I stopped the LDN and just fell into bed each night. The pain came back with a vengeance and I realised that it had been helping all along. It's so hard to quantify pain isn't it? A bit like childbirth, we forget :) During the two weeks I didn't take the LDN I needed a lot more Tramadol, while I still have pain now I can function more and it's not so distressing.

If you are keen to know more, follow the conversations on the LDN Research Trust FB page for a while. They also have a site and Youtube channel.

sue32 profile image
sue32

Hi Mark, I'm afraid I'm just like most people on here...and as an added pain in the butt, my 'sleep' is full of dreaming, some ok some not ok. I have tried to vacuum this morning and now I feel like I need another 8 hours sleep!! I think sleeplessness or lack of sleep is something we fibromites can really relate to.

I have taken Magnesium for many years but I can honestly say it has done SFA for my pain. Nothing touches my pain, so I am trying Paracetamol 500mg + Codeine Phos 30mg. I'm gonna see if it does anything this time. Any strong painkillers just make me sleepy!! Oh, dear, you just can't win can you?!?

XXX :)

in reply to sue32

Funny you should mention dreams. I find that I remember my dream now than before I had Fibro. They are odd. They are not nightmares, but they are not good either. It's like having a bad day at work or breaking something in your home and then I wake up and realize it was just a dream. I think it's either my meds or the inability to get into that deep restful sleep they say we need to recharge our bodies.

Hi I have fibro, RD, osteoarthritis, gastric reflux and sjorgens and really struggle to get to sleep at night and I do wake during the night in pain. I take tramadol and paracetamol. I wake in the morning feeling like I have gone ten rounds in a boxing ring and then played rugby. I fall asleep after doing anything, shopping, reading, even eating. My GP referred me to sleep clinic and I had to wear a monitor to bed one evening so they could check my sleep pattern. From this they have diagnosed severe sleep apnea and they said this could be part of the problem with fibro and definitely the fatigue as I am not getting enough restorative sleep. They said when I was asleep I was fidgeting and stopping breathing several times a night. last week I was given a CPAP machine to use. This is a machine that pumps air into a tube connected to a mask and you wear it to bed. It keeps your airways open and supposed to aid (mending) sleep. It is very quiet and the mask I was given is just a nasal one and quite comfortable to wear. The first night of using it I had a panic attack with it as I felt I couldn't breath at all and when I opened my mouth I got a backdraft and then I couldn't stop crying. Next day I phoned the sleep clinic and they were very supportive and suggested I try sitting for a couple of hours every evening while watching tv etc to get used to it but if that doesn't work they will try a different mask. I am hoping this is going to help with the fatigue and the need to sleep at odd times. Im not saying this is what you have but it might be worth asking your GP if you can be checked if only to rule sleep apnea out. Gentle hugs. Joolz.x

Thank for the comment but I also had a sleep study done and found nothing wrong. I hope the CPAP machine works for you.

Okay- so we all have the same problem, FM- we all have our own answers, I.E- doctors- med's- water hot or cold, endurance with or without med's etc.etc. etc.. Yes I suffer like you all, but to pump more garbage down my throat does not appeal to me- so what's my answer? I drink a small amount of whisky for three or four days each night NOT ALL DAY.!-enough to make me "Happy", not blind drunk.! This works a treat to rid me of pain, (ever seen someone drunk-fall over and not give a fig.?) then when you wake up in the morning, you've had a good nights sleep... and NOTHING gets in the way because your too drunk to care about pain, stress, money, kids, dogs, shopping,- not the best answer maybe-but at least I sleep happy happy happy.!!! and then I feel refreshed-alive and up for a good day doing stuff without stiffness, pain or anything else- its not "wrong" to use alcohol- its "wrong" to use chemicals to block the problem- enjoy the drink, wine, whisky, brandy, Vodka, whatever you like and let your body repair while you sleep with no set backs.. hope you see my point.. as for shopping, Tesco deliver for a quid.. go online like I do.. saves time fuel and effort... Best of luck in your life... ~Kazz.

Hello Mark,your fatigue is usually getting worse as we enter autumn.I suggest to protect your immune system first by drinking an infusion of fresh grated ginger,lime and manuka honey every day.

Ginger is a natural anti-inflammatory...

I also have fibro since 2009,these fatigue periods come and go.

Also,there is hope for this condition,I know someone writing a memoir on it and she firmly believes that fibro lasts 10 years and then gets better.

Of course you don't sleep well at night,cut down the cafeine intake,replace with any infusions,loads of fruits.

Low vitamin D is a marker of fibro,it is sure so you can take supplements.

Check your B12 and cut down dairy products and fizzy drinks.

Good luck

in reply to

I'll try your drink. I don't suppose that ginger ale soda counts as part of the ginger part of the drink. Just kidding. I know it has a lot of sugar and other chemicals.

Thanks

TheAuthor profile image
TheAuthor

Hi Mark5177

I am so sorry to read this, and I can see that you have been given loads of useful information and advice so I will just wish you all the best of luck with finding the answers that you so desperately desire and deserve.

Good luck

Ken

sas21 profile image
sas21

I feel for you. I have the same problem with the fatigue it controlling my life.I go from my bed to my couch. I don't feel my doctor understands .

in reply to sas21

I finally moved the Cable Tv into the bedroom because I could not get comfortable on the couch.

Vortaenig profile image
Vortaenig

I sleep like that too. On tramadol. But I feel more like it's an escape. Not what you probably wanted to hear. I try to exercise hard everyday. But it doesn't change my sleeping 10-12 hrs???????

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