Joint hypermobility syndrome and CFS. How do you overcome the fatigue??

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Hi, I was diagnosed with HMS about 5 years ago and have to say I've steadily gone down hill. A couple of months ago I was also diagnosed with CFS. I've found the fatigue unbearable to the point of spending most of my time in bed and not knowing what to do with myself.

I find it difficult to make my husband understand how much this has affected my daily life. He is in helpful around the house and reluctant to help with his step children. Is there something I can get him to read that puts it into understandable words

Thanks Sxx

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10 Replies

  • Posted

    hi sorry to read how bad your feeling and lack of empathy from partner, a worry, there is another thread on from Elaine called The most helpful book lve ever read, about cfs me, she puts info on mb, it might help you.
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  • Posted

    Hi - I just joined the forum today and put a post on earlier about a really good cfs book. It's called Fighting Fatigue by Sue Pemberton and Catherine Berry. It is a really easy book to read broken up into small chunks and the last chapter is for carers which your husband might find helpful to read. There is also a chapter about dealing with others which you might find useful in trying to deal with other people as most people who don't have cfs don't really understand. You could also try listening to a relaxtion CD if you have to spend a lot of time in bed. A friend gave me one to try and I didn't think it would help much but I feel much more rested after I listen to one almost as if I've had a mini sleep even though I'm awake and seem to have a bit more energy so I now have a few different ones I use all the time when I'm exhausted/stressed which seems to be a lot of the time!!
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    • Posted

      hi, l  looked the book up online, ebay etc, read up and it said one of the authors has a clinic in York specialising in me cfs fibro, worth knowing. 
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  • Posted

    Hi Stacey,

    As you have cfs/me diagnosis, have you been referred to a cfs/me clinic? If not, ask your gp to refer you. Take your husband with you. Hopefully that will show him how he can help.

    Best wishers

    Beverley

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  • Posted

    The best article I've read on getting ME/CFS was written by author Laura Hillenbrand in the New Yorker. It's called "A Sudden Illness." She writes so movingly about what it was like to get this illness. The article is available online. Just Google "Laura Hillenbrand New Yorker."
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  • Posted

    Hi  Stacey;  sorry for taking so long to reply.  In answer to your question, it is hard to "give advice on how to get him to understand", as this comes down to his own personality.......you will find that Many of us have the same problem in letting others know exactly how we feel, as is always said "but you look fine"  !!!!!................firstly though, I feel that you need to help yourself.....I am getting the feeling that this CFS is getting you down?.....if this is so, perhaps some therapy/anti-depressants?? may be the answer, as we all get depressed with this life.....there are many of anti-depressants out there, and some only need to be taken for a short time until you can get your head around what is going on with yourself.   As to helping with the fatigue, many of us have found that by taking Melatonin supplements (either in tablet form.....but I have found only one brand that helps me......or from Cherry/apple Juice as one other uses)....will help with the broken, unrefreshed sleep.......for some reason it has been found that our Brain-stem is not producing enough Melatonin that is of normal range for us to achieve the REM stage of sleep.

    ​If you feel that your husband will understand more, if he knew more, then take him with you to a drs' appt, or research and print out some information.....I have found the Hummingbird and Mayo Clinic sites to be very informative...................good luck, and hoping that this has helped  a little........every tiime you are feeling down/needing someone to talk to....come back to this site, we have all gained a lot of help/support from here .....(I have even made some good friends)..........lol​Bron

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    • Posted

      hi Brownwy, interesting, l read the theory over the sleep pattern, as confirmed by scientific research, that those with cfs fibro dont get enough deep resting sleep, but light disturbed sleep, l feel that for myself, rarely go above 2hrs without waking, and in the 2hrs l dont feel t be in deep sleep, more distrubed, fretful at times, wake up like a zombie. My son has a watch connected to a app, which monitors many body function, used for gym, but also measures rem sleep, Although l,m not a big fruit eater, l do love black cherry and will try the melatonin supplement. For those younger sufferers l,m sure that a cure will be found in time, dont give up hope anyone. Stacey you could print this off and show him it, might help
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  • Posted

    There are various organisations that usually have leaflets and other materials. Also meetings for sufferers as well as family/carers.

    http://www.meassociation.org.uk/

    https://www.actionforme.org.uk/

    Hpe that will help, your problem is shared by many.

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    • Posted

      For info, if you want to refer users to the websites you have provided and not wait for moderation both are linked on all discussion pages in this CFS forum. They are under Related Information at the bottom right. 

      Regards,

      Alan

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  • Posted

    Thank you everyone for your understanding most of all. Will have a look at that article and book and may just give the melatonin supplements a go too.

    Thanks again soon much Sxx

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