Can anyone suggest anything to help me cope with the extreme fatigue that endo causes?

I am literally sleeping 12-16 hours a day and I am physically so weak as well as in pain in everyday. I am constantly going to the doctors to explain this and im getting no answers as my bloods are fine? the time I am awake i am looking for a job wondering how I am going to cope with another one as i lost my last one because of this.

Can anyone suggest anything that would even help to make me stay awake for longer?

10 Replies

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  • I'm struggling with this at the minute, although I don't have the time to sleep, I'm just generally exhausted and yawning a lot. I know exercise helps me - something to get your blood pumping. Eating lots and lots of fruit and veg - also very good as rubbishy foods just make you more tired, fruit and veg help get me moving. Maybe start by just walking more everyday and improve your diet if you can.

  • Has your GP checked your vitamin D levels? Mine was very low and I was falling to sleep at work and very tired all the time feeling like i was moving through treacle at times. This has improved since I have been on medication to rectify the vitamin D deficiency. If you are indoors alot because you are fatigued and sleeping it is likely you may be deficient due to lack of sunshine.

    Another thing that I felt helped my fatigue, and many of the chronic pain patients that I treat is mindful meditation, which you can do lying down. I bought the book and CDs and taught myself and home and this changed my life. Honestly. I cannot recommend it enough. This link is the company set up by a woman with chronic pain due to a spinal injury.

    breathworks-mindfulness.org... Or other people I know did the course. It is completely amazing and worth looking into to help you break to vicious circle that chronic pain creates.

    xx

  • HI guys thanks so much for your answers I cannot beleive i found so many people that suffer the same pain and symptoms and still no one can find a cure for us...maybe we should protest or perhaps go on a kind of strike...? just a suggestion.

    Spent the night in the A+E lastnght doped up on morphine and today I feel great i cant beleive i am not in pain for 1 day but cannot enjoy it because I am waiting for it to come back :-(

    Miwa - good idea I have meaning to get into meditation for awhile but cannot do it alone however there so expensive for me beacause im not working at the moment :-(

  • Hi Noshbi,

    I can relate to exactly how you are feeling in regards to tiredness. I am on Prostap and have had 3 injections so far, initally i was having no problems with it however the past 4weeks i have been so down in the dumps with seriousl dark moods, off food, aching from head to foot, increase in original pains and sleeping my weekends away. The weekend just gone i worked out i slept for 24 hours in 48 and I feel like i had seriously wasted my weekend but i just couldnt keep my eyes open. The hours i was awake i went out with my dog, went shopping - the usual weekendy things for regular office workers but as soon as i sat back down within minutes id be asleep. Im 23, 24 next month and feel like i am a lot older than my years. I have a 5year old Border Collie which needs a lot of exercise, i am still walking him every monrning and night before and after work for up to 2.5 hours a day, however i usually plan to be in bed by half9/10 to get my sleep in.

    At work im forever yawning and needing to drift off. I changed my diet around three weeks ago to have Jordans cereal for breakfast, Lettuce, Cucumber and a meat for lunch fruit throughout the day and its usualy chicken or fish with veg for tea. I find if i have sandwiches or pasta i just want to sleep even more and my stomach bloats and so have limited that intake. It sounds quite a minimal diet but it has helped.

    Wow i have written an essay, Sorry!

    You more than likely feel your the only one and i dont blame you - your not alone in this and i dont think doctors truely believe what we are saying, I imagine you are the same and feel like your banging your head up a brick wall and that there is nothing you can do about it as they are pumping you full of hormone. I hope you can find something to help, maybe a diet change if you havent already as i know it helped me slightly - I am certainly going to look into what Miwa has suggested, Thanks Miwa! xx

  • i agree with mcgovernaine i am exactly the same as i am always sleeping like 10, 11 or 12 hours at the weekends as i am too tired to do anything after that but i always buck myself up and do something and i sleep 7 hrs in the week as if i go to bed late and i get very tired in the morning when i got work and my blood are fine and the endo does make you tired... i take Magnesium citrate 100mg 1 a day and it does really help... without that i get very tired easily... it helps when you have your period or not... if i am having my period with the vitamin it helps without it, it doesnt as i get really tired big time... i always get myself going at work which i need to do walk around...

  • HI guys thanks so much for your answers I cannot beleive i found so many people that suffer the same pain and symptoms and still no one can find a cure for us...maybe we should protest or perhaps go on a kind of strike...? just a suggestion.

    Spent the night in the A+E lastnght doped up on morphine and today I feel great i cant beleive i am not in pain for 1 day but cannot enjoy it because I am waiting for it to come back :-(

    Miwa - good idea I have meaning to get into meditation for awhile but cannot do it alone however there so expensive for me beacause im not working at the moment :-(

  • Hi NoshB,

    I had another idea!! You could ask your GP to refer you to the local pain management programme, which is completely free. It is a several week course which is for people with chronic pain/fatigue to help you live with your pain, as with endo we know the pain is not going to go away. So this course covers topics such as relaxation, pacing, goal setting, breathing exercises to help improve your quality of life, sleep and mobility, . This is a link from the NHS as these courses are nationwide. nhs.uk/Livewell/Pain/Pages/...

    Also regarding the meditation, have you tried your library? I loaned the Breathworks meditation book from there for free, but there were loads of other books on meditation too. Also my library has meditation CDs for £1 for a weeks loan.

    Please to hear you have had a pain free day.

    xx

  • Hi Miwa,

    Thanks for your answers, very much appreciated!

    good idea I will try my library, also I am currently residing in Glasgow so im not sure if they have pain management classes and unfortunetly rhe link doesnt work but I will ask however I never seem to get anything out of my GP's.

    Also how has the meditation books and CDs helped you? Has your pain been reduced?

    N xxx

  • Hi,

    I am absoultely sure they will run in Glasgow, as they are throughout the country. At my local hospital they run them in both Halifax and Huddersfield. If you type into google "nhs pain management programme", it comes up as the fourth link entitled "nhs help on offer for people with pain - Live Well - NHS Choices."

    Be persistant with your GP as you are entitled to have a referral to this programme. State what treatment you have tried in the past and now you would like to try one of the pain management programmes as you are struggling with fatigue and pain. Give examples of how fatigued you are and how it affects you life. You are exactly what these programmes are targeted for! They may refer you into a pain management team first who will assess you and see if you are suitable for other forms of treatment alongside or first. There are doctors, psychologists, anaesthetist, occupational therapists and physiotherapists on the teams. They can give stronger medication then GPs tend to issue too. i.e. morphine patches.

    My meditation books and CDs have helped me live more in the moment. When we have chronic pain, we tend to either think about how bad it has been in the past, and worry about what it is going to be like in the future. It taught me that people with pain have two types of pain, one physical and one mental. We may not be able to change the physical pain of endo, but meditation helps to ease the mental pain of endo. Mental pain can last for much longer that actual physical pain. It has helped me develop a calmer mind, and be kinder to my body and not resent it or hate it. It has changed me profoundly. I can face the reality of having this disease more often. I also feel more relaxed and more of an open person. I never used to talk to anyone about it and hid this disease from everyone for many many years.

    xx

  • Miwa thanks so much, you are of great help. i never talk about it to anyone either as I find it difficult to get people to understand why I am like this now and try to explain to them what Endo is but family and friends keep suggesting other causes for the pain because they dont want to beleive I will be like this for the rest of my life which is understandable i guess.

    I am so eager to get a hold of these books and CDs!

    Endo is really not pain you can get used to!

    N xxx

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