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Feeling very down with this awful illness

Posted , 5 users are following.

Gizmo1963
Gizmo1963

Hi, I've felt so alone lately and just not had the energy to write for a while but from reading everyone's posts I realise that I'm not alone. As well as ME/CFS I too have fibromyalgia, depression, osteoarthritis, cervical and lumbar degenerative disc disease, high blood pressure and cholestrol and today I've been diagnosed with hypothyroid plus my inflamation markers are very high. I've had lots of steroid injections and put 4 stone in weight on but eat little. I manage to get out the house and go in an electric wheelchair round the shops once a week with my husband but thankfully he has always understood and supported me. I worked up until March and then fell to pieces so have had to give up. My short term memory is a mess now too. Then to top it all, in July I was diagnosed with the brca1 gene. I underwent surgery last month and have had my tubes and ovaries removed but have other decisions to make too. I was always so energetic and slim before all this and loved dancing, going for long walks and swimming. It hurts me so much as I write all this down as I'm sure it does with everyone else suffering with CFS. Thank you for listening to my moans and groans.I would love to be more proactive in this group when I have a little energy. Love Paula

1 like, 11 replies

11 Replies

  • Bubbles61
    Bubbles61 Gizmo1963

    Posted

    Bless you paula, my story is very similar too yours, with other illnesses etc to cope with,& like you was so so active,& have put on 3 stone but have always loved my food but was because i was always so active i never went above 14 1/2 stone,now im 17 stone & dont eat that much, have been living with it all for 14 years now, wth the highs n lows, but i do belive with this illness you have to make it mind over matter & do wot u can wen u can,as frustrating it is, there are kids & adults all ova the world so much worse off,, so we have to stay  positive & stong,and as independent as poss,& hope one day there is a break through in wot causes this disabilitating condition,, you are obviously a strong lady to keep coping with all that you have too, we all have to keep telling ourselves some life is better than no life.. All the best to you,, from a 53 yr old sufferer..
    • Gizmo1963
      Gizmo1963 Bubbles61

      Posted

      Hi Bubbles, thank you so much for taking time to reply. Yes, we do need to be strong and positive and yes, it becomes frustrating as it's a never ending rigmarole of having the occasional good few hours and then not having the energy or strength to get out of bed for a few days when we should be trying to get on with our family lives - I even skip a heartbeat when the phone rings as it means I will need to chat and often I find it so exhausting. I had a better day today and my husband and I babysat for our first grandchild who is two weeks old today and that brightened my day. I've put on 3 1/2 stone in weight going from 8 1/2 stone to 12 stone from an assortment of meds, steroid injections and illnesses. Back in 2010 I had campylobacter food poisoning and was admitted to hospital for 5 days where I contracted colostrum difficile. It took me months to recover and this is when I became very unwell with extreme fatigue and depression/anxiety and panic attacks. I just got worse from there on. Btw I am 51 so just 2 years younger than you. Exhausted not so time to rest so good night for now xx
  • david59662
    david59662 Gizmo1963

    Posted

    Hi Paula, interesting you were so active before illness, a common trait amongst CFS sufferers like us. I think we should assume our illness is the result of a weak and malnourished body. The best theory i have seen is with traditional chinese medicine, and so i am working on that with my own CFS. If you google tonic herbs chronic fatigue you might get some interesting links. This illness is not nice, we are all effected differently with it.
    • Gizmo1963
      Gizmo1963 david59662

      Posted

      Hi David thanks for your input on Chinese medicine. I will look further into your suggestions tomorrow however I am sceptical about trying something new at the moment until I start my thyroid medication. I know you have tried many different natural remedies and are finding it difficult to find one that suits you but I'm always so impressed with your stamina and you never give up which is wonderful. Good luck x
  • joy47826
    joy47826 Gizmo1963

    Posted

    EXTRA Potassium and Folate are needed for many and they do not know it.   I'll send you a couple recent messages from a CFS friend from a U.S. group with some very good info....send me a PM with your email, if you like, and I'll forward you some of the latest good info.....I'd like to help all of you but just can't and we can't post links here.....too bad about that....  J

    There is a lot of hlep out there and it's NOT from conventional MD's...

    • Gizmo1963
      Gizmo1963 joy47826

      Posted

      Hi Joy, thank you so much for replying - I have send you a PM with my email address. I take meds but will definitely speak to my GP about potassium and folate and maybe also iron. Thanks again, everyone has been so helpful as sometimes we all need to offload x
  • ann11007
    ann11007 Gizmo1963

    Posted

    Hello Paula,

    I havn't been long with this group and I do find it is a good platform. Thankfully you have great support at home which some don't. It is a such a personal and devastating loss to have been so active then becoming so unable so fast. I don't think most people realise how devastating it is. Thanks for sharing.

     

  • david59662
    david59662 Gizmo1963

    Posted

    Hi all,

    Has anyone had hair thinning as a symptom ? I'm one year into my illness and noticing this the past 2 months. Thyroid was normal.

    Thanks

    • joy47826
      joy47826 david59662

      Posted

      David, I was my thyroid was NORMAL for 10 long years....it was NOT....it was sluggish and hair thinning is just ONE symptom of low thyroid function....read the great book:  stop the thyroid madness.... J
    • joy47826
      joy47826

      Posted

      Should have read I was TOLD my thyroid was Normal..................

      If you "think" it's sluggish, it most likely is, those lab numbers are lies....we are not numbers and SO OFTEN we need thyroid support......J

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