Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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CBT help??

Discussion in 'General ME/CFS Discussion' started by jenny39, Oct 25, 2017.

  1. jenny39

    jenny39

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    Hi everyone

    I found out after 9 years of an ME diagnosis that I had a pseudomonas aeruginosa infection that I caught in hospital 10 years earlier that spread spinal chord, brain causing ME. I had originally got treatment via IV antibiotics and thought no more until it returned. It is resistant to all drugs I have tried and last one ciprofloxacin and gentimycin I have had over 4 months of cipro plus loads more of the gentimycin for ears. The ciprofloxacin improves everything and I can walk and get around alot easier but it will all creep back again. My seizures have improved as I have epilepsy from childhood, had brain surgery 22 years ago but started having seizures but due to having previous ones it was put down to surgery not being successful when it was infact the infection as I now have very few since treatment.

    My neurologist at the national queens square referred me earlier this year for CBT at the Royal London Hospital for integrated medicine where I am also under a neuropsychiatrist who has already said its not psychological and was going to pass me back to neurologist but I turned up looking really ill and she has since kept me on as a patient. I started the CBT around 5 weeks ago and so far dont think its done any good but them forcing me to do more and more each week. As I have epilepsy I cant drive so have to get around on foot and public transport. At the first appointment she said that ME is a real condition and asked me what I know and went through loads questiions. 2nd week she asked me to bring in a book I read and still had from when I first got diagnosed, book is by Charles Shepherd. I spoke to her following week and she wanted me to do more then I was able and I told her I felt relly ill so couldnt do what she asked and she wasnt happy and said that this is something I am going to have to put up with for the rest of my life. She has told me to get some dumbells to do some exercise to strengthn arms more and do things bit by bit and gradually improve without crashing. I cant see how this is going to help me when I have spent 12 years paceing and have improved as much as I can. She also said about fibromyalgia that I have to put up with as I taking pregabalin and few other epilepsy drugs. Do I just stop this as not sure how many weeks I have left. I think maximum is 9 weeks so would have about 4 left. Should I just continue do as they say and then when I end upback to square 1 again prove it dont work. I said to her what about end of the day or first thing in morning when I get home and am exhausted with severe pain or wake up exhausted and cant get up. Do I try to not think about it like they say and pretend the pain isnt there. My nerves become all inflamed and tingling from brain down like fire so I cant do nothing for days.
     
  2. Alvin2

    Alvin2 If humans were rational...

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    I have sometimes found its good to go through the motions just to shut a doctor up, but i would not do anything that could make you worse to make them happy, you can say you tried, crashed and took longer then usual to recover instead of overdoing it and harming yourself. CBT is a load of crap especially when if have a verified infection. What are the consequences if you stop the CBT and harmful exercise?

    Also don't be afraid to seek out another specialist for the infection if possible in your system, taking drugs for something resistant to them is pointless and can actually cause harm.
     
  3. SamanthaJ

    SamanthaJ Senior Member

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    Hi Jenny,

    What you're saying sounds really concerning - it sounds like your therapist is not listening to you and does not understand your health problems, which sound quite complex. Her advice is downright irresponsible, although she may not know it. It also sounds like there's an element of graded exercise to your treatment, which can be very dangerous - most patients surveyed say it made them worse.

    You might already be familiar with this, but this is what the ME Association say about CBT:

    and about Graded Exercise Therapy:

    More here:

    http://www.meassociation.org.uk/2015/05/23959/

    I agree with @Alvin2 that if you have to continue going, you can say you are doing as they say, but really continue pacing, which works for you. But if you don't have to go... This therapist has completely the wrong idea about what's wrong with you, and so is likely to make you worse. It really sounds quite coercive and unpleasant, and also sounds like it's quite an effort for you to get to the appointments in the first place. Either way, hope you find a way through this that protects your health. :hug:
     
  4. NelliePledge

    NelliePledge plodder

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    just sending you a hug:hug:. I totally agree with others don't do what they're asking you to do. You have to do what you feel is right for your body. It's not like you haven't tried their way but it sounds pretty clear it isn't working for you. You don't have to tell them the truth you can say you're still trying the activity but it is making you crash. But not actually be doing it. I am on the mild end when I did my group "CFS/ME management programme" I told them I was doing more activity than I was before the course which I wasn't and they took that at face value and didn't pressure me to do more.
     
    SamanthaJ likes this.
  5. jenny39

    jenny39

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    Thanks for your replies and hugs to you all too :hug:. I went to the appointment today and was amazed she didnt pressurise me into doing anything more. I mentioned that I had been in contact with someone who I previously done some volunteering for about a project for people who are isolated for whatever reason and possibly going around to see them. I told her I was interested in this to get myself out of my little comfort zone. I told her again about recent viral infection where lymph nodes all severely swollen and feel like shreds of glass and neck all numb lik they been ripped to bits. She had asked me questions about hospital and doctors visits for same old thing antibiotics stating that if I had tried 4 months altogether what does that tell me? I said yes they not going to get rid of it but at least it improves my symptoms and I feel normal for a few weeks, I said the GP needs to either refer me to someone else to either try something different because I cant carry on with my brain feeling like its on fire at times and nerve pain all over. All I have been passed onto is you for treatment and no other specialist who can give me some answers. She asked what weight dumbels I had so said 0.5kg and was fine with that but I already told her my muscles improve when I get antibiotics and then weaken further when infection comes back. I mentioned that I am going to watch the documentary Unrest next week as I got some tickets for it so she seemed pleased and asked me the details so I showed her. Maybe that might open her eyes abit more. She then said that will so you good watching that. I have a few phone apps one that monitors my sleep pattern so she see that and another called fabulous that motivates you to do things so I told her I was using those. She also said to make sure I use cotton wool in ears when showering to keep water out so is saying like other doctors she dont believe the ear infections are related. Its funny how I got a diagnosis of pseudomonas aeruginosa from an ear swab and only antibiotic that relieved brain and nerve inflammation was ciprofloxacin yet they still dont believe me. Even my neurologist has admitted it was that infection, I just wish the hospitals would listen to each other as I have been under 4 different ones yet they all have there own opinion and the neurologist I dont see for at least 10 months now as seizures improved. They are expecting psychiatrists to deal with it, the ENT specialist said go back to your neurologist, the CBT therapist are saying I have something else going on causing all these problems not an ongoing infection, and the gp dont know where to send me next. :(

    Has anyone here used apple cider vinegar and does it help with bacterial infections as I have a bottle of braggs but not started taking it and want to find out more on colloidal silver.
     
    SamanthaJ likes this.

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