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Tips and techniques of how I completely recovered from CFS / ME!

Posted , 13 users are following.

xemilyx001x
xemilyx001x

I was diagnosed with M.E. in August 2012.  I now consider myself to be practically recovered from it.  I still have the issue of fighting infections off, but other than that, I feel I can do anything that I want to do!

I was sleeping for 16 hours a day, not able to move without becoming too tired, headaches, muscle tiredness, unable to work, and many other common symptoms!  My M.E. became apparent when I had tonsillitis, but that was obviously the final straw for my body as I had been having symptoms for months previous to that but hadn't thought much of it!

I followed a number of different ideas and techniques which I believe had a major impact on my recovery.  I know that this won't be for everyone, as there are symptoms I didn't experience, and I didn't have other linked conditions such as Fibromyalgia etc.

If you would like some PERSONAL advice, and I have to stress that these techniques are only my opinion of what I have found to have worked, please feel free to message me on here as I now have time to give something back to others who are suffering.  I personally think individual messages on here would be more beneficial than an overall tip!

Thanks, Emily smile

0 likes, 31 replies

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  • darren12814
    darren12814 xemilyx001x

    Posted

    Glad you have recovered. 

     Not everyone has the message facility unfortunately. 

    If you do want to give back, why not explain here in public what worked for you? Im sure everyone understands that not everything works for all.

    Is it a secret potion?? 

    • xemilyx001x
      xemilyx001x darren12814

      Posted

      Oh I'm sorry I didn't realise not everyone had access to the message facility.

      It isn't a secret potion though haha!  I will comment it on the actual discussion smile

       

  • jackie00198
    jackie00198 xemilyx001x

    Posted

    Ditto Darren's post. Please post your recovery regimen so that everyone can see it. Believe me, we understand that one size does not fit all.
  • xemilyx001x
    xemilyx001x

    Posted

    I tried to reply last night but the website kept freezing!  This definately won't be suitable for all, but may help some people on the right track.

    The first tip is record everything you are doing, and rate it out of 5 for each hour.  For example, if you are watching TV from 10am - 11am, it would usually be a 1/5 as although you are not physically doing anything, it still is mental stimulation.  If you are doing a number of things in an hour period, such as washing up, hanging out washing, brushing teeth etc. record everything and give the whole hour period a score rather than the individual activities.  Begin the day when you wake up and end when you go to sleep, for example 8am - 10pm. 

    Record all your activities for a week to give you a baseline of what you are doing.  After a week, aim to gradually increase your activity points by one or two points each week.  Try to do this by gradually increasing the amount you are doing everyday. 

    The second tip for today is I was told the illness is all in your mind.  After I had numerous blood tests, my body was completely healthy.  It is your mind telling your body that you are tired, and the lack of movement which usually causes muscle pain and over-exhaustion from simple exercise, (this is obviously not the case if you have another condition).  I combatted this by reducing the amount of sleep I was having and made sure it was refreshing.  I had 7-8 hours sleep a night and that is it.  I also increased the exercise I was getting which increased my energy and reduced a number of my symptoms.

    If you found this helpful, I will put some more tips I used or further information on the above tips onto this discussion.

    Thanks smile

    • JulieBadger
      JulieBadger xemilyx001x

      Posted

      Thank you for incite into your experiences.  It's interesting to see how different bodies respond to different treatments.  I do have Fibromyalgia and other conditions , in fact I'm now wondering what my heart is up to.  I won't be able to follow your system as I frequently try to up my activities and definately suffer.  However, I do know that my mind does make things worse.

      Good luck to anyone who's body could respond positively to your approach.  Brilliant that you found a way to physically move forward from ME/CFS. x

    • jackie00198
      jackie00198 xemilyx001x

      Posted

      I hesitated to respond to your post, because your regimen has apparently resulted in your feeling better, and because you kindly posted your regimen to help others.  But…the idea that ME/CFS is all in one’s head is pretty repugnant to me. Just because tests come back negative does not mean it’s all in our head. It means that the tests are unable to detect the cause of this illness. Until more research is done and there is a biomarker for the illness, there will be no way to test for it. My infectious disease specialist, who also does research,  feels very strongly about this. Also, graded exercise did not work for me, and made me worse.  My previous ME/CFS specialist, Dr. Paul Cheney, has been researching ME/CFS and seeing patients from the first diagnosed patients many years ago in Incline Village, Nevada. He strongly feels that the research in the U.K. showing that graded exercise helps is flawed. Then again, if it helped you, maybe it can help some people, but I would be very careful before pursuing this. Also, many of us would love to have to reduce the amount of sleep we get because of sleeping too much. The 7 to 8 hours you get looks like heaven to me. And how do you make sure sleep is refreshing? It’s not like I can control the way I feel when I wake up. Sometimes, no matter how much or how little I sleep, I wake up feeling like my sleep was not refreshing. In spite of my reaction to your post, well, it is only my reaction and my opinion. If your regimen helped you and can help others, I think that’s great. 
    • xemilyx001x
      xemilyx001x jackie00198

      Posted

      I appreciate your comments regarding this discussion.

      However, I had severe M.E. 18 months ago and now I am completely recovered.  I go to the gym 5 days a week, have a full time job, volunteer and manage a household, all of which I can do with ease.  I rarely get ill now, which is a huge contrast to when I was diagnosed.

      I truly believe that by understanding the illness, I was able to beat it.  I have a very positive mind set, and that to a certain extent, mind-over-matter helped when I was feeling extra tired before.  

      Information, provided by the NHS, I received has a number of points which back up my tips I used to get better.  It stattes that when a body over-rests, muscles become weaker and practically decondition.  This means they can't manage the same amount of exercise, and you are starting from scratch, especailly if you have had M.E. for a long time.  It is important to establish and maintain a routine which encorporates activity and rest.  The NHS information document even states "you want to aim for a slow increase in your activity levels over time".

      The flaws on the research on graded exercise is that people are doing too much and expecting too much from their bodies too quickly and so people step backwards rather than fowards.  Another issue is that people do lots on a good day, and not much on a bad day, thus reinforcing the idea that you can't do anything.

      I used to be so tired I couldn't sleep - I wouldn't be able to switch off in bed and lie there and when I did go to sleep, it would be so unrefreshing when I woke up.  Basic tips can assist with this, but not completely help as it takes time.  One idea is to establish a bed time routine, go to bed when feeling sleepy when tired, and for an hour or so before bed, read rather than watching TV.  Once in bed, put the light out immediately to train your mind that bed is for sleep only.  Also, it is a good idea to set an alarm for the same time each day which you get up to.  Your body usually takes roughly 2-3 weeks to get into a routine, and so if you still with this, it will most likely do you good.

      I understand you are finding dealing with your ME difficult, but I truly believe, in all of my heart, by staying focused, following basic guidelines towards recovery and wanting to get better really help to keep you motivated towards your final goal.

      One final note is that I attended one M.E. session set up by my specialist, of roughly 10 people.  One of the first questions she asked was "do you think you can get better?" and 3 people said "no".  It is that reason I didn't return and took my own recovery path and achieved complete recovery within 12 months.  I just wanted to help people who were struggling to get better, and help them understand the illness and how they can combat each symptom.

      Emily

    • xemilyx001x
      xemilyx001x JulieBadger

      Posted

      Hello, if you read my comment below about graded exercise and maintaining a routine, it might help, even if it is just a short walk everyday, as long as its the same amount of exercise daily, whether it is a good day or a bad day x

       

    • jackie00198
      jackie00198 xemilyx001x

      Posted

      Thanks for your response, Emily. It's great that you recovered, and if you can help even one person, you'll be doing a good deed. I do agree with you that a positive mind-set is important.
    • GeorgiaS
      GeorgiaS jackie00198

      Posted

      Thanks for sharing xemily but I'm with Jackie. The idea that it's all in the head is appauling to me and does nothing to help public or medical understanding of ME, in fact in my opinion it sets it back.

      Whether I'm experiencing negative or positive moods the physical exhaustion and other symptoms are the same. There are varying degrees of ME, mine's lasted nearly 10 years and it's very bad. I'm glad you're feeling better but your advice would do nothing for me unfortunately.

      Sometimes I think people just get better and put it down to whatever they've been doing at the time, perhaps the illness has simply run its course in some sufferers?

    • katie7075
      katie7075 GeorgiaS

      Posted

      Hi there Georgia, 

      whilst reading through about peoples experiences with ME/CFS, yours popped out at me because there was a couple of words in there that really interested me and the words were about the fact that you ME is "really Bad". I have been trying to gauge mine. Mine is very bad in my eyes but would you mind very much telling me what you described as bad. What would be a typical day for you. Hope you don't mind me asking you this question but I am really interested to know just how bad mine is. 

  • darren12814
    darren12814 xemilyx001x

    Posted

    Interesting Emily. Thanks for the information. 

    Suppose it is similar to the spoons theory. I do agree to some extent but it is a very long process, especially if the person has other conditions. 

    Re the mind element, again I think the mind has a big part to play but its not only in the mind. I have always looked at attacking the condition via 2 routes, physical and emotional, both in tandem can work well together regardless if the person thinks the emotional side is an issue or not. 

    Those are my own personal opinions though!

    Will be interesting to hear what others have to say about the method that worked for you. 

    Did you go through the NHS? Go through any other regimes like weight loss/gain or major change in dietary?

    Bottom line is that you are now better than before so we should all celebrate that fact! 

    • xemilyx001x
      xemilyx001x darren12814

      Posted

      I haven't actually heard of the spoons theory, so I am unable to comment.

      I found that it was my mind completely in control, and once I had accepted that fact, I was able to focus on my recovery.

      I had one appointment with a private specialist for my diagnosis, and had an NHS specialist aswell, but found my main source towards my recovery was my partner who did a sport course rather than anything medical.  I didn't do any major weight loss / gain programmes, but if you are feeling tired, exercise, even gentle exercise, can work wonders!

  • sylvia17461
    sylvia17461 xemilyx001x

    Posted

    Your mind telling you you are tired!!!! I have struggled for 19 years all blood tests normal diagnosed with me/CFS no test for this so only given when every thing else has been checked out. Only recently have I been told I have not got me/CFS nor have I ever had me/CFS !!!!!! I ve said it before and I say it again look up. " I am hashimoto s a letter". Is this you ?? Glad to hear you are back to health but I m afraid I am skeptical about me/CFS , the list of symptoms for it and hashimoto also 'Wilson's syndrome' are much the same any one reading this page, check it out it just might be you ! Also Diane Holmes book " tears behind closed doors" is worth a look at , she was misdiagnosed for 23years ended up in a wheel chair and is now a happy healthy lady leading a fuller life after finding a doctor who treat the symptoms not the blood tests !!!!! 
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