I'm new on here, need some advice please

I was diagnosed with fibromyalgia and chronic fatigue last year. At the moment I'm "managing" my pain, but I'm not managing the excessive tiredness. 

I had a "nap" the other day at 10-30am and woke up at 6pm, I'm in a full deep sleep!  This IS a regular occurrence now.

The worrying thing is, I've no control. Went to see my GP, he said there's nothing he can do!

I've put on a lot of weight because "I can't be bothered"

I've had blood tests and everything's ok. So I can understand why I'm just so tired all the time.

Any advice would be appreciated.

(P.s I might not be able to reply straight away, we've got slow internet)

Thank you

23 Replies

  • this is exactly s I feel, sleep so long, pain being helped but just sleep. nothing showing up on blood tests etc. good luck.

  • Hi and welcome to our forum.You came to a place where you can get help with questions along with laughter to brighten your day.You just have yo push yourself  unless you find something that helps.Good luck.Peck☺

  • Thank you judithanne and peck.

  • Hi there

    Welcome to our lovely forum :)

    You may like to have a look at our mother site where you'll find lots of useful information fmauk.org

    Unfortunately Chronic Fatigue is incredibly hard to cope with.  The only answer that I know of is to pace yourself, which again is incredibly hard.

    Unfortunately it doesn't matter how long you sleep for, unless you go into Stage 4 REM sleep (which Fibro sufferers rarely do) you will not awake refreshed.  To reach Stage 4 REM sleep you need to sleep without waking up at all (even for a couple of minutes) for four hours solid.

    One of the major causes of Fibromyalgia is the fact that we do not reach Stage 4 sleep. 

    Stage 4 sleep is when all the cells in the body are renewed and the bodies general healing process happens.  As we rarely get this type of sleep, this is why many of us are so incredibly exhausted.

    I can fully empathise with you as I suffer from Chronic Fatigue too, as well as Fibro and several other chronic conditions.

    You may like to check out the Spoon Theory and see if that helps you at all.  Either Google it on the Internet, or try putting it in the Search bar at the top right of your screen.

    Wishing you all the very best and I look forward to chatting with you again.

    Lu xx

    Admin Volunteer

  • Thank you, that is great advice. 

    It can be difficult trying to explain to a GP the symptoms because they vary day by day. 

    It annoys me because I tell them how badly the fatigue affects me and he dosnt seem or want to understand! 

    I think he just sees an overweight middle aged woman complaining of a few aches and pains and feeling tired. Before I was diagnosed I was fit and healthy, slim,  had great stamina, I worked, went out, enjoyed my life.... Now... I'll do it if I can be bothered, or get up! When I have small bursts of energy I'll run round like an idiot doing housework, then collapse.

    It's no fun.

    It's nice to talk to people who suffer the same problems. Thank you

  • You're very welcome :)

    For me, somehow, actually knowing why I felt so exhausted all the time helped me to deal with the fatigue better.

    Can I make a suggestion, although it's entirely up to you.  You can have a pack all about Fibromyalgia sent to your GP.  Go to fmauk.org and then from memory (so that's a bit risky!) I think it is page 2.

    That is where you will find out how to get the pack sent out.  You can either send it anonymously or you can let your GP know that it is from you.

    It is essential that you have a GP you can talk to.  Is there a different GP that you could see?  If not, I would seriously consider changing to another surgery.  With Fibro if you can find a GP that believes in you, you will obviously be better off.

    Something else that lots of our members have done, is to take someone with you to your appointment.  GP's tend to be more amenable when someone goes with you.

    I forgot to say in my first message that your GP can refer you to a Chronic Fatigue Clinic.  

    Be kind to yourself

    Lu xx

  • I didn't know that it was to do with stage 4 sleep thanks I understand more now xxxxxxx

  • I'm not sure I explained it all that well as I am no doctor! It's just what my Rheumatologist told me when he diagnosed me. 

    I am so glad it helped. Lu xx

  • I have the same I have just woke up now from 3 hours sleep but I woke thus morning at 5 in really bad pain it is very overwhelming sometimes it's a hour sometimes more hope you get sorted with you gp 

    Carol ☺

  • Tiredness comes with fibro not just tiredness exhaustion some days you have so much energy you could run a marathon others so tired you don't want to move. Some of us talk about spoons as it makes it easy to understand, you have so many spoons (energy) and you use them up still feeling ok you use some of tomorrow's spoons, now you have less spoons for tomorrow so feel exhausted so borrow from the next day and so on so we are always exhausted fatigued, the ideal would be only to use that days spoons but that's seldom possible. With fibro it's like we only get a part set any way and life has a way of forcing us to exert ourselves, plus there are times we want to exert nights out visiting family work it all takes spoons lol. You are far from on your own lol hope you get answers as well as friendship and understanding within our little community xxxxxxxx warm hugs Lisa xxxxxxx

  • Hi LisaW63

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read that you are experiencing sleep issues, and I can see that you have had some wonderful answers from your respondents. There are medications that you could discuss with your GP if they are willing to prescribe them and if you are suitable to take them. One that springs to mind is a drug called ''Amantadine'' which is used for Parkinson's disease and many other conditions. It is used as an anti-fatigue medication for sufferers of MS. 

    I have pasted you a link to the *NHS Choices cache for this medication below:


    Another request you could make of your doctor is for a referral to a sleep clinic to have your sleep patterns monitored whilst at home via a ''Clinical Measurement Clinic.'' This may prove beneficial as it could say whether you have any sleep conditions such as sleep apnea for instance?

    I want to genuinely and sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Sorry you are feeling this way, the Fatigue, is a nightmare, as we know. I hope you find some good advice, and get the answers you seek. Take care.x

  • Hi Lisa,

    The exhaustion is so hard to deal with. When i go through a bad patch, i feel Luke it robs me of a life and it can really get me down. I've realised it's not a healthy way to deal with it as it'll be ongoing. I'm glad you get good days and it's important to pace yourself on those ones so you don't end up paying for it the next day. It's hard when you feel ok and you've not been able to do much but it's vital to managing. Do you have any friends or family that understand and cod help on bad days?

    As for the GP, don't get me started! If you have these diagnoses, he should be taking you seriously and being empathic and proactive. He's clearly not. It's definitely worth seeing another one or even changing surgeries. An understanding, clued-up GP is worth the or weight in gold! They are out there. I've had similar problems and as both ME and fibro have their disbelievers and debaters, it can still be hard to be taken seriously but don't stop fighting, you deserve to have all the treatment and support available to make life as good as possible. I think some GP's often feel powerless over some symptoms because there's not an easy drug to give out or exercise to do! It's a complicates issue and one a clinic should be able to help you with.

    Good luck 😊 xx

  • Hi it just shows although we are all hear for the same illness we all suffer so differently . I find I sleep maybe 3 or 4 hours a night although I feel like I could sleep for hours on end. I keep my hands busy during the day by sewing , crochet , PlayStation and the new craze colouring depending on my pain in my hands as to what I can do. If I sleep at all during the day I have no chance of sleeping at night. 

    I hope this helps you. 

  • Once again thank you all for your responses. Your advice is greatly apreciated. 

    It's good I can let off a bit of steam 

    We have just recently moved house/area and have a new GP. My old GP was fabulous, he was extremely understanding and listened to what I had to say. This new fella dosnt appear to understand fibro. If I have to change Gps again, I will.

    I had blood tests done the other week, everything came back ok apart from 1.

    He said I'll need to have another blood test because my " liver function test looked a bit skew wiffy"  that was his EXACT words!

    I don't drink at all so he said, it's part of the fibromyalgia.

    Clueless, absolutely clueless!

  • Yes I often experience "overwhelming tiredness" I,ve started to potter around the garden and force myself to do something to alleviate the "nodding off" part of fibro.

  • Hi Lisa, l relate to all you state, as do many. l used to think it odd anyone would sleep in the daytime, even if l,d had a late night wouldnt and didnt need daytime sleep. Now, l do wake up on and off during the night, but then wake up just feeling l want to go back to bed, but do essentials, pet care, drink snack, then often fall asleep on sofa, for 1-2hrs, sometimes just sit back on sofa and away without being aware till  l wake up and see time.  Some days can sleep 3 or 4 times in day, on a good day not so much, but any energy and its do the neglected household jobs, ive also a gp who,s quite casual, despite lengthy explanations of how it feels and just as bad the many restrictions on lifestyle. This week with it being fine did 2 days garden work, and hour each aft, last 3 days fit for nothing, fatigue aches and pains. l agree with the two posts above, everything is will power to do things, but not all out as it used to be, but gentler interests and  past times when possible.


  • Hi

    Sorry to hear how your suffering.

    Fibro seems to have many symptoms and it seems that we all have periods when we suffer more than others. It's seems that many of us suffer from lack of sleep and then suffer from tiredness during the day. Or that the pain is so bad that our muscles feel heavy and weak, which makes us feel fatigue.

    Are you on any meds? If yes, could one of these be making you feel over tired?

    I was put on 10mg of amitriptyline and felt tired all day and as if walking around in a fog. I was told I was hypersensitive, as it was such a low dose. I was wondering if anything like this could be happening to you?  Needless to say I came off of them.

    At my worse I had blood tests and found I was anemic, could you be?

    Can you go to another doctor for help?

    Have you tried any vitamins/mineral supplements?

    Sorry I can't be of more help.

    Take care and best wishes.

  • Yes I was on  amitriptyline but I took myself off it, it really zombified me. My old GP gave me lyrica instead. I'm also on fluxetine. He's doubled my dosage, but I still don't feel any different.

    I'm  B12 deficient so have quarterly injections. 

    Apart from that I'm ok haha.

  • Ahh, sorry I couldn't help.

    Hope someone can help you.

    Keep on 😊

    Take care and best wishes.

  • Not a problem. It's nice knowing I'm not the only one! 

    I'm away tomorrow for a couple of months so hopefully the sun might help.

  • Hey, welcome! Don't worry so much about what docs say... Not much empathy there. I've put on a lot of weight (may 40 pounds in the last six months) even on a strict diet, cause I can exercise due to low mobility, but all I get is criticism from family and docs. On top of being bone tired all the time I actually got injured from doing a little exercise (muscle tear) and could barely move for 2 weeks.

    It is true that we need to exercise and not give in to the weariness, but don't beat yourself up for not being able to all the time. We know what a tremendous effort it is just to get out of bed some days!! It'll get better once you adjust to the treatment!

    All the best ;)

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