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Treatment programmes

Posted , 11 users are following.

rosie34970
rosie34970

Hello all

I was diagnosed with CFS a couple of months ago after being ill for a year following glandular fever. I'm under an NHS CFS team and am doing pacing, eating well, supplements, mindfulness, sleep hygiene etc and have improved well with these things to the point that I am generally ok symptom-wise unless I go over my 'activity limits', which is great.

I have been off work months and a gradual return has been agreed for me which I really really want to be successful (I trained for years for my profession, enjoy what I do and am reliant on it to pay mortgage). I feel like I'm at a bit of a plateau and not yet well enough to start return to work.

I've seen from research on Internet that there are various programmes by DVD etc to help brain retraining to help overcome CFS (not sure I can mention particular company names on here). I would acknowledge that a combination of major life stresses probably contributed to my personal illness so I'm open to psychologically-targeted treatments. I'm just wondered if any of you have tried any of these programmes and, if so, whether they helped at all?

Many thanks

R x

1 like, 18 replies

18 Replies

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  • Fidd
    Fidd rosie34970

    Posted

    I've only seen people criticising those programmes as an ineffective waste of time and money. On the plus side, you can often get the DVDs second hand for free!

    • rosie34970
      rosie34970 Fidd

      Posted

      Thankyou for your reply! There does seem to be some positive reviews online (outside the sites) so I'm still a bit curious. Do you know where you could get the second hand ones you mentioned?

      Regards

      R

    • Fidd
      Fidd rosie34970

      Posted

      I just occaisionally notice people offering to send out their unwanted DVDs to anyone curious in on-line discussions about this. Maybe search any groups on-line for the DVD's you want, and see if something turns up? You might not get lucky, but I hear that they can be pretty expensive brand-new. It wouldn't surprise me if someone had put copies online to be downloaded either. Good luck.

    • rosie34970
      rosie34970 Fidd

      Posted

      Thanks Fidd - I'll have a look around!

  • andytee
    andytee rosie34970

    Posted

    You sound well on your way Rosie. There are so many psychologic approaches that can help with CFS, go ahead and experiment. The real gift of CFS is that you're motivated to find your particular mix of self-aware motivation strategy that you can take with your once you're done with the condition.

    I'll mention the turning point for my recovery, as I'm not certain from your listed items if you're already doing this. I kept a 'cause and effect' diary wherein every time I had a crash (or in later stages of recovery, a mood dip) I would write my severity as a mark out of 10. Then, I would jot down next to it the action or thought that preceeded the crash/dip. More than any other part of my recovery plan, this created the self awareness I needed to gain control over the psychologic aspects of CFS. Even after reviewing my cause/effect diary after just a few days I would notice patterns that were beyond my conscious awareness but then were easy to stop once I realised the connection to the dips.

    Here's an example of my thinking backwards after one incidence:

    1. I had a crash.

    2. I noticed that immediately preceeding the crash (and outside of my conscious awareness) was a feeling of hopeless despair.

    3. If I curiosly kept following that unconscious thought process upstream, I noticed that the hopeless despair was triggered by the thought that I wasn't doing anything useful, which was caused by looking at the same blank wall in my bedroom.

    Simply becoming consciously aware of this process allowed me to break it - and then I set about associating the blank wall with a thought of empowerment. I consciously interveened to rewire my 8 years of "ill-associations".

    Let me know if you think this is helpful and worth giving a try smile

    • rosie34970
      rosie34970 andytee

      Posted

      Many thanks Andy for your message! I have found using a diary really useful for managing the physical aspects of CFS including noting patterns that precede dips, but hadn't thought about using it for emotional aspects! I will definitely give that a try, thankyou. I have noticed that I have a couple of negative & demanding friends that cause me stress and trying to reduce/remove my interactions with them, but that's as far as I've got. I will try your method a many thanks :-)

    • rosie34970
      rosie34970 andytee

      Posted

      Ps - if there is anything else that helped lead you to your recovery I'd be interested to hear about it!

    • andytee
      andytee rosie34970

      Posted

      You're welcome. You may well be very surprised with the hidden little thought links that you find! Try it for a couple days report back any that you find to me.

      I had to remove friends too, which isn't a fun thing to do - but may be necessary for a while. Mostly though they thought I didn't like them anymore and it caused me even more stress!

      One very important thing to remember when recovering from CFS is to let go of controlling everything and just focus on controlling your one little corner of paradise. You know you can always retreat to it and it will be the same every time, safe, isolated and recuperative.

      The secret to CFS recovery is starting again from scratch. Accept you suck! Laugh about it! Then treat yourself like a little adult baby focusing on just the smallest improvement every day. When you crash, laugh about the fact you pushed to far and go back to your safe space. It's only a temporary setback, don't let yourself stop hoping - I didn't and I got 100% better. It's not magic, it just took 6 months and a lot of discipline, which let's face it - you've already got as it's a war-course just getting through your day smile

      Let me know how you get on with the emotion/thought ramp diary..

    • rosie34970
      rosie34970 andytee

      Posted

      Hi Andy

      Well I've been diarising hard and weirdly it doesn't seem to be negative thoughts that cause me problems, but getting overexcited and reverting to acting like I'm 'normal' leading to me overestimating what I can do and getting carried away. So I'm working on becoming more 'chilled' when I'm feeling well at mo rather than wired and overexcited! Does this make any sense?

      It was really nice to hear from you as someone who's recovered, thankyou.

      Rosie

    • Katcat18
      Katcat18 rosie34970

      Posted

      Hi Rosie,

      ive just read your last comment here, about getting over excited and acting as if you were "well" again making you overstep your limits

      I do that too. 

      I've had CFS/ME for around 10 years now and it's been a task and a half to try to understand the patterns and the thought processes that can precede a crash.

      I think that physical and psychological processes interlink so much, excess happiness can be as much of a trigger for a crash as just generally overdoing the vacuuming or cleaning.

      Very good luck with your planned return to work, it's a great step to getting well again.

      My work life stopped when I became ill and I've now reached retirement age so it's been a very strange sort of semi-retirement I have lived in for too long. I feel upset that I didn't finish my work life "as planned". It feels as if that stage if my life is unfinished..... 

      So much changes with CFS/ME.

    • rosie34970
      rosie34970 Katcat18

      Posted

      Hi Katcat

      Thanks for your message. Interesting to hear I'm not the only one who gets carried away!

      Sorry to hear you've had this horrible illness for so long. I don't know if I'll manage the return to work or not but my employer has been great about reasonable adjustments and I definitely want to try it, as I'm only at the beginning of my working age life really (not to mention goodness knows what I'd do financially if not - but trying not to worry about negatives in advance for now).

      I've been working on my 'very calm' approach for a few days now and I think it's helping - though I do miss the excitement and energy it is more than worth it to avoid the days of pain that follow if I go for it! Sorry you didn't get to finish work as you wished but hope that you can enjoy the slower pace of retirement a little to help your illness.

      Regards

      Rosie

    • elaine62759
      elaine62759 Katcat18

      Posted

      Hi Katcat

      ?I can relate to having that semi-retirement feeling. I've been ill for over 20 years and struggled on working part-time with loads of relapses for the first 10 years until I eventually lost my job at 40. I thought it might be a chance of a fresh start and spend loads of time trying all available treatments hoping I'd be able to go back to doing work of some kind but every time I felt a bit better I relapsed again so it just never happened. I'm 50 now and still have the urge to do some sort of work before it's too late but feel my energy levels are worse now probably due to getting older on top of the M.E. so feel like I'm finally having to accept the fact I won't be able to work again.

      I've now decided to stop wasting my energy chasing something I don't think will happen and see I can have a go at doing some hobbies to pass the time instead and enjoy the freedom of not working instead of feeling guilty about it as it was not my choice to become ill!

      ?I also agree with your comments about emotions playing a factor in your energy levels. Strong emotions such as anger, frustration, resentment, excitement and happiness can drain your energy levels just as much as phsical activity. It's all about getting the right balance and pacing yourself to keep your energy levels steady.

    • andytee
      andytee rosie34970

      Posted

      Awesome to hear Rosie.

      When you have to do physical or mental activity do you implement forced rest periods with a timer? ie: 5 mins moving activity, timer goes off, then 5 mins rest. Then repeat. The time lengths can be reduced slightly every day you don't overdo it and crash. If you do, just restart after your crash from where you're currently up to and keep on progressing.

      You've got to be very strict with yourself at the moment. I know there is a lot you need to get done, but ensure that you carry a timer and force yourself to adhere to measured breaks from activity, slowly extending the boundaries each day. It's all about consistency.

      Keep it up!

  • Jadakink
    Jadakink rosie34970

    Posted

    Hi. What programme are you following? Can you post more specifics? I'm desperate. Thanks

    • rosie34970
      rosie34970 Jadakink

      Posted

      Hi Jada

      I tried to post more details on here but it got deleted by moderators so I'll try n send you the details in a direct message x

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