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Need a moan..anyone else feel like this?

Posted , 5 users are following.

victoria63790
victoria63790

Hi I've been diagnosed with cfs/ME for about two years now. Before that I was so active. I have 3 children too so I  can't just rest all the time! I am so fed up...I went out thurs day evening after having a bad cycle which lasted a couple of months and since I went out I am feeling totally wiped out and my legs absolutely kill me!!! I just want to feel normal again and do things when I want to.sometimes I think I may make myself worse because I keep doing things all the time. I'm just so sick of not being who I used to be and my legs hurting. Sorry for the moan but everyone I know doesn't really understand how I feel and I dont want it to seem like I'm feeling sorry for myself! Xx

2 likes, 14 replies

14 Replies

  • david59662
    david59662 victoria63790

    Posted

    Hi Victoris, i have relapsed badly this week. I'm fortunate enough not to be un any pain although my legs this week have been like concrete blocks. I'm awaiting CBT and really think it will help me. Maybe ask for it to help you psychologically. I used to be supet fit, i would regularly run 40miles/week swim and bike too. Now i am housebound for most of the day and can manage to walk for 30mins on a good day.
    • victoria63790
      victoria63790 david59662

      Posted

      I have had cbt and it helped slightly with feeling down etc but not much more to be honest.

      some people have said about seeing an occupational therapist just not sure what they would do. Its so frustrating. 

    • david59662
      david59662 victoria63790

      Posted

      Keep an eye out for the results of THE SYNERGY TRIAL in the U.S

      An FDA approved double blind placebo controlled trial on a vitamin and mieral based therapy for CFS. There is a you tube video all about it and my GP said if the results are positive he is more than willing to help me out with it.

  • lauren1992
    lauren1992 victoria63790

    Posted

    Hi Victoria,

    I feel that coming on this discussion feed and listening to other people with the condition really helps. It is hard speaking to other people who don't fully understand. I've had the condition for nearly 2 years now, and everyday I wish I didn't. I too push myself more than I should, I'm only 22 and want to be able to go out with friends and enjoy my life, so often I try to push through, which doesn't do me any favours. 

    Basically, I know exactly how you feel. Try and access any treatments you can - your GP should be able to offer you different resources and its best to trial everything as there's no set thing that will make it easier. I hope you find a therapy that works for you.

    All the best, Lauren

    • victoria63790
      victoria63790 lauren1992

      Posted

      Hi lauren.

      im sorry you have been diagnosed so young. Im 33 and I struggle enough! Loads of my friends go out a lot and I can hardly ever go considering I used to go out with them quite a bit. I am a stay at home mum at the.moment because my youngest has just turned 3. How do you cope with work etc as that is starting to worry me about going back.

      Ive had various medicines and seen a rheumatologist and cbt but am getting fed up. Someone mentioned yoga to me the other day. I want to try that but wonder if it will floor me again because I have to walk eveywhere as I cant drive so I have to be careful what I do other than that.  Maybe I should learn to drive?? Lol xx

  • kiloran
    kiloran victoria63790

    Posted

    Hi, 

    I pushed myself recently to stay in work, but symptoms have got worse and I'm now off sick. 

    I do relate to the legs if concrete phenomena, very frustrating. 

    Do take care. Xx

    • david59662
      david59662 kiloran

      Posted

      Look into Chinese Medicine and kidney jing depletion. I really do feel this lies at the root of our condition and many others. I did 6 weeks of tonic kidney based teas and i felt much better. This time last week i managed a 30min jog for heavnes sake.

      I ran out of ingredients and this week has been my worst in many months. I'm back on the teas this week as i ran out and had to re-order. I think this is what is working. TCM explains ME/CFS better than anyhting else i have seen.

    • victoria63790
      victoria63790 kiloran

      Posted

      I worry about what to do when I do go back. I was a dental nurse before I had kids and I cannot do that anymore due to kids and hours I was doing. Feel a little lost plus if I have a bad day I dont want to have too many days off due to my condition. 

      Trouble is I find my memory is getting worse too! 

    • kiloran
      kiloran david59662

      Posted

      That's interesting David. First time I've heard of Chinese Medicine helping. Great that it is though. X
    • david59662
      david59662 kiloran

      Posted

      Considering how awful i have felt whilst off the tea it will be a revelation when i go back on them.
    • victoria63790
      victoria63790 david59662

      Posted

      That is something I have not thought about at all. What exactly is in the teas? 
    • david59662
      david59662 victoria63790

      Posted

      Hi Victoria,

      I really like the TCM concept they have of CFS. BUT unfortunately the practitioners are out to make alot of money from us, just my opinion after spending £1500 on 3 months of TCM treatment with no benefit. I basically decided, ok what are THE top kidney tonic herbs in Chinese Medicine. I found prepared rehmannia (known as the kidneys own food), eucommia, polygala and morinda root. Cordyceps is another and contains ATP and uridine, but you have to buy this as powder as the raw root is mega expensive and rare. I add astragalus root, ginger root, licquorice root and schisnadra power to the mentioned herbs, then simmer for 1 hour and do a double extraction, so strain and simmer for another hour. Basically at the TCM clinic this is what i was instructed to do, BUT I asked myself are they using inferior herbs to prolong treatment ? Why are they not using these herbs ? Anyway i will be sure to re-port IF i start to feel better. In the meantime research TCM chronic fatigue.

      Emis Moderator comment: I have removed the websites' names as we do not allow repeated posting of these in the forums. If users wish to exchange details please use the Private Message service .

  • tori7494
    tori7494 victoria63790

    Posted

    Hi Victoria,

    I have replashes every other week, you need to paces yourself. If you do housework one day, rest the next, do one major thing that's important to you that day,and rest after it. If your thing is going to the gym, well do it, but learn to rest and call it a day. Stop pushing yourself so much, it will only put you back.

    Take care.xx

    • victoria63790
      victoria63790 tori7494

      Posted

      Hi Tori.

      I try to do that but there is always so much that needs doing plus im not at work either yet which is worrying as I am.at home with my youngest. 

      How will I cope then?

      I went out for one evening and now I ache all over and feel like ive been hit by a truck!! Xx

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