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At my wits end

Posted , 10 users are following.

helen70967
helen70967

I was diagnosed with CFS, Fibromyalgia and Arthritus in 2006. Since then I have worked through the various treatment programs that my doctors have suggested. However, I have had no level of recovery. I am now 33 and am worse than I have ever been, having to wear adult nappies, I'm on several medications and have to be dressed and often fed. Does anyone have any thoughts on how I can lift myself emotionally because to be honest I'm not sure how much more of this I can take.

1 like, 9 replies

9 Replies

  • joe98530
    joe98530 helen70967

    Posted

    So sorry you are going through this. Has it always been a spiral down? Were  there better times during your illness? what were you doing then...lifestyle, meds etc...The only thing that helps me is meditation, relaxing my mind. Bad vibes, emotions and mental state seem to push me further down the hole. Wish I had better answers. Good luck!
    • helen70967
      helen70967 joe98530

      Posted

      I get times where it seems to level out but I've not had any time where its improved. I shall give the meditation a go though. Thank you.

  • jackie00198
    jackie00198 helen70967

    Posted

    Helen--I'm so sorry to read about your situation. During my years with ME/CFS, I've had times when I've been extremely ill. My illness has fluctuated. There were times when I could barely turn over in bed and was 100% bedridden. Lately, I've been able to get out a bit. Recently, I had a saline infusion before a surgery, and found that this might have helped lift me out of a severe relapse. Have your doctors tried this? As far as I know, this is without risk if it's not done too often. Emotionally, I've had times when I've really struggled with depression and anxiety, because of the severity of the illness and the extreme changes it imposed on my life. I found that daily meditation helped me a lot. Also, I do my best to focus on whatever it is I can do. So sometimes I listen to music, or read, or watch movies, or get on the Internet. I'm too ill to talk on the phone, so I've been very isolated, which is tough. That's why this forum is so useful for support. You may find that even though you're worse now, you could improve. Also, there's currently a lot of research being done on ME/CFS. I think it's being taken seriously for the first time, and I think there will be treatments available. So please hang in there and keep posting for support here.

    • helen70967
      helen70967 jackie00198

      Posted

      Thank you, I was a performer before becoming ill so I'll start with music and the meditation and see how that goes.

  • helen70967
    helen70967

    Posted

    Thank you all for your thoughts and ideas. You've given me a lot to think about and I'll revisit the doctor as well to see about the other tests that have been suggested.

    Thank you again.

  • tracy47348
    tracy47348 helen70967

    Posted

    Also get tested for Epstein barr virus and HHV6. The antiviral valtrex has helped some people. Im currently trying it but ive had Mecfs for 27years so i think its been too long. Idk. Others have gone a year or more of taking it so im not sure if my doc will want me to continue. Im also trying transfactor taken from colostrum. See how that goes. Im house bound semi couch /bed bound. Sometimes i swear ive contracted lymes also in last 3 years but neg tests. I think i pushed myself into worse conditions. Was able to work parttime few years ago. Im also anxious to try the saline drip. Best of luck.
    • helen70967
      helen70967 tracy47348

      Posted

      Sorry to hear you've had the condition for so long. My doctor explained to me when I was diagnosed that this is a lifelong condition with no cure only management treatments. I've been told by my doctor that I do not have Epstein barr but its a good thought. Thank you. smile

  • Fidd
    Fidd helen70967

    Posted

    ?The phrase "level of recovery" makes me think that your doctor may have been influenced by junk-science like the PACE trial. There was an article in the New York Times titled 'Getting It Wrong on Chronic Fatigue Syndrome?' that may be of interest. More recently the Independent had an article titled 'Time for Unrest: Why patients with ME are demanding justice?' which covers a wider range of issues.

    ?I'm very sorry that you're in such a difficult situation, and that there is a lack of effective treatments available. Often people can find that they make gradual improvement when they stop following unhelpful medical advice they've been given, and instead start to just try to find their own way of best managing their condition. I hope that you have good support available to you.

    • helen70967
      helen70967 Fidd

      Posted

      Oh Britain seems to be very behind the times. The BMA (British Medical Authority) only acknowledged CFS to be a physical (instead of psychological or psychiatric) condition in 2010. Most of the treatments at that point where very much based on Cognitive Behavioural Therapy and mental health medication. The attitude of many of the doctors, even today, seems to be "oh pull yourself together we all get tired" (that was the first thing that was ever said to me). 

      I think I've found a doctor that actually seems to take the condition seriously now. I had an appointment the other day and she said that she was concerned at the number of illnesses I've been diagnosed with and she wants to start running tests for an underlying neurological illness (I forget the name she gave it). She said that she would have expected to see at least a stabilisation of the condition by now.

      As for support my partner is wonderful. I couldn't ask for better.

      Thank you for your suggestions. It's given me a fair bit to think about and I shall be reading the PACE trial and the New York Times article that you mentioned.

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