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advice wanted please

Posted , 8 users are following.

lyn29413
lyn29413

i have been diagnosed with me/cfs for 3 months now and i am really struggling day to day. my doctor has referred me to a cbt therapist at a local hospital as my moods are low,which i suppose on occasion is true,but i would describe it more as frustration.

i no longer have employment as my manager decided he only wanted full time staff and i seriously could not do this as i was a  security guard in a shopping centre and the hours long and standing and running around was just so painful. i have started doing little work projects indoors to keep me occupied and also feel as though i am really pushing boundries to complete these and normal day to day requirements.

i dont sleep well at all,my whole body is racked with pain when i try to relax,i wake up to turn in my bed of a night.once awake i cannot settle again due to aches and pains. my legs dont feel like they belong to me anymore,continuous deep ache in bones and a bruised feeling it touched,my arms also dead weights. 

am i trying to do too much? is this normal?

0 likes, 27 replies

27 Replies

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  • Fidd
    Fidd lyn29413

    Posted

    There has been a lot of concern about those making money from CBT for CFS misrepresenting it's efficacy, and making unsupported claims about recovery. For anyone going to see a CFS clinic that provides CBT, I think it would be sensible to ask them if they have publicly called for the release of the PACE trial's protocol defined outcome measures, as these would help lead to a more reasonable and honest discussion in this area.

    Some further details on this are available here (and elsewhere): http://www.bmj.com/content/347/bmj.f5963/rr/674255

  • jackie00198
    jackie00198 lyn29413

    Posted

    Sorry you're going through this. Can you see an ME/CFS specialist?  I did CBT, and it helped me cope a bit, though I've found meditation more useful. But tools for coping vary from person to person. Get plenty of rest and don't push yourself. That can result in a relapse and worsened symptoms. Remember, people can recover, and now is the time, since you're newly diagnosed, to be kind to yourself and give your body a chance to get better. There's some very good advice in the other posts.
  • lefteris54687
    lefteris54687 lyn29413

    Posted

    Hello, I would like to share my experience with you in case it might be helpful. I live in Greece. I am 42 years old and I have symptoms for 20 years (including persistent fatigue, brain fog, low concentration, low stamina that are relieved a bit only be resting and eating very often especially fatty foods and animal proteins - I am not suggesting this as a diet). I have been struggling all these years in my personal and professional life. My symptoms have been impressively relieved in 2-3 months after clinical tests and appropriate medications in Athens (Marousi) health center by pathologist Dr Naoum and his team. I am not trying to advertise my doctor but I am just trying to help other people with perhaps the same root cause problems. Ancient Greeks had a special word for strong men, "chalkenteros", that actually meant "men with strong guts".
    • jackie00198
      jackie00198 lefteris54687

      Posted

      What has Dr. Maoum and has team done to help you? What medications have been used? What are the root cause problems that you have? I'm sure others in this forum would like to know, as well.
    • david59662
      david59662 jackie00198

      Posted

      Always bothers me when people talk of recovery methods yet leave no details... WTF  razz
    • lefteris54687
      lefteris54687 jackie00198

      Posted

      I apologise to all for being so vague.

      Please, bear in mind, that i am not a doctor and the prescriptions that follow were prescribed for my condition.

      However, if I can strongly suggest something, is that a root cause of cfs (as in my case) may be digestive problems (even if the symptoms of indigestion are not intense and thus not very obvious to us). As an idea, you may not find this strange. The digestive system is responsible for providing energy to our organism from the food we eat. If something is wrong there, our energy may be decreased.

      As I told you, I suffer 20 years from cfs. Recently I took several tests, and I was diagnosed with helicobacter pylori and a small duodenal ulcer. My doctor prescribed antibiotics (Amoxil, Tavanic, Flagyl) to kill the helicobacter and also belifax (the active ingredient is omeprazole) to help the ulcer get healed. Lately, I was also prescribed with Zantac. Also my doctor suggested drinking soda (in my case, one teaspoon for one and a half litre of water). 

      I am under medication for 2 and a half months and there is a significant increase in my energy and I don't have to eat so frequently to keep it high (I tried some other medications and herbs - without a doctor's advice - in the past and I saw very temporary results that lasted for one or two weeks).

      One of the symptoms was that when I felt hungy, if I was not able to eat something soon, I started sweating a bit and after that, my energy was going down. It seems that when the stomach starts to give out gastric acid (and thus starting feeling hungry), something is going wrong with the digestion and my energy droppes down.

      Drinking soda might also be useful to neutralise gastric acid.

      As I told you before, I am not a doctor. Cfs is in the research interests of Dr Naoum and he has healed cfs sufferes before me. When I went there he told me some of the symptoms I had (and also he mentioned what the other doctors might have told me such as that these might just all be in my head) and he was positive that I will be cured.

      Therefore, If I can suggest something is that a root cause of cfs might be digestive problems. Sorry for being so vague in my previous note.

  • lefteris54687
    lefteris54687 lyn29413

    Posted

    So, in case of cfs, one suggestion, is to attempt to diagnose if there are gastrointestinal problems (such as helicobacter pylori, ulcers etc.) and treat them. Drinking baking soda (in concentration you can easily bear) throughout the day in case of helicobacter pylori may be helpful also. It is also advisable to find a doctor who is specialized in cfs treatment, to help you in this effort and recovery may not remain a dream after all.
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