The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

My recovery story, in case anyone is interested

Discussion in 'General ME/CFS Discussion' started by james7a, Mar 10, 2015.

  1. james7a

    james7a

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    Hi everyone,

    I promised to myself that once I felt I had recovered, I would make videos documenting how i recovered from CFS.

    I will be uploading a video tomorrow about my story with CFS so I wont add paragraphs here for that :) but the short story is I started getting symptoms in 2005, then in 2007 I had to leave sixth form because I didn't have the energy and I was getting worse(new symptons on a weekly basis) from trying to live 'normally'. I was inactive basically from 2007 until last year. At my worst I found it alot of effort to get up the stairs without feeling shaken up (like whensome one scares you feeling) and would sometimes stay in bed for a few days at a time. I would alternate from sleeping 12-14+ hours a day to weeks of 1hour a night.
    I had no help, no one believed me.. which makes cfs that much worse. It was soul destroying and at times I didn't think I had no life to look forward to. I didn't want to live anymore.
    about a year ago~ I decided to change every single detail about my life, I was willing to do anything. I can now say that i feel damn good. I went for a 30minute run today and lifted weights. 2 years ago when my mum asked me to hold a curtain pole whilst she thredded the curtains on my vision blacked out and had to 'recover' from holding a object above my head for 15seconds...It's strange feeling normal after 10 years of feeling like shit.

    I posted here in july last year and mentioned all the things I did to try and help and stated that so many things had not worked for me. But my way of thinking was flawed. I wanted a single therapy to cure me. An example, I stated that tapping full out didn't help, but It did help somewhat. It didn't CURE me. It helped me become more aware of my thoughts. I was quite quick to bash modern medicine on this journey but I was looking for a 'alternative therapy' to cure me. No one thing is going to cure you from CFS and that is what I realised. If you're not feeling good, you have to keep changing it up.

    I have videos regarding diet, stress, sleep, supplements, psychology etc so I won't go into detail here.

    I was hesitant at first to post here thinking people wouldn't believe me or say I never really had CFS. But I thought whatever, I have information here that will benefit people. I'm happy to answer any questions about any subject.

    I'm here to answer any questions you have.

    https://www.youtube.com/channel/UCM-sTCzs4dmwGkyfeFdWVPg/videos
     
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  2. peggy-sue

    peggy-sue

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    I'm absolutely delighted to hear you are recovered!:):thumbsup::angel:
     
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  3. james7a

    james7a

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    thank you peggy. let me know if you have any questions. :)
     
  4. drob31

    drob31 Senior Member

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    One thing your diet reminds me of, is autoimmune paleo.

    When you mentioned you avoided dairy, it makes sense because of the principle of molecular mimicry. The protein casein in dairy looks allot like gluten to your immune system. Since gluten is both inflammatory and can cause an autoimmune response, it makes sense to remove dairy as well.

    Whole foods only on autoimmune paleo as well.

    I think diet is super important as well.

    Autoimmune paleo makes you cut out gluten, grains, dairy, legumes, processed foods, and reduces the diet to basically grass fed meats and organic vegetables, some oils, etc.


    I partially agree with your supplement advice because I think diet should mostly cover it.

    However, things like methylation have found to be helpful by many.

    Also, basics like fish oils, magnesium, B vitamins, etc.

    If you do blood work and find you are deficient in something, I think supplementation could help.

    I think allot of people fix their lifestyle, diet and sleep, and still don't improve. It's individual specific.

    Your sleep advice is great. 8 hours may not be enough, and perhaps people need 10 or more.


    I agree with your advice about doctors. Allot of times they can do more harm than good.
     
    Last edited: Mar 10, 2015
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  5. Doublepush

    Doublepush

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    I'm sorry I'm replying without seeing the videos as I currently have no audio available. What supplements do you think what most beneficial? Did you have any medical tests that showed anything abnormal?

    Do you feel that you react to the exercise as a normal person now? By that I mean that you don't get wired, PEM or get any other strange reactions after the exercise?

    Great that you have recovered!
     
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Do not go on runs or lift weights. If you do things like that, your cfs will come back. It may show up even up to a month later. I urge you, please do not do such things!!!
     
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  7. xks201

    xks201 Senior Member

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    While I commend you for stating YOUR route to recovery - I can guarantee you that the approach you recommended won't fix more than a quarter of people with CFS/ME. Making sure you don't have food allergies, drinking enough water, and eating a healthy diet is great but if it was that easy there wouldn't be a CFS/ME epidemic. Assuming there is one cause to this monster of symptoms is a mistake IMO. I'm done with people claiming to have one authoritative stance/solution to CFS/ME.

    Many supplements may be "BS" as you state but some aren't for some people. Biological individuality is an important concept here.

    I'm glad to see you are well now and are telling us what has worked for you but I don't see anything novel here and many of us have tried the approach you are claiming worked for you. Don't assume that simple of a solution will work for everyone.
     
  8. taniaaust1

    taniaaust1

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    That sounds like postural orthostatic tachycardia syndrome (POTS). This is more common in teens and teens do improve from POTS. POTS can give a lot of symptoms and can coexist with ME/CFS. So if your POTS improved like what can often happen in teens, this could of made a big improvement to your whole illness.

    I cant watch videos on my computer but from what the others are saying, it sounds like its common things most of us have already tried and though can help a bit eg diet, it certainly doesn't recover us.

    Take care, I had 2-3 years full remission (if you are in proper remission exercise should be completely fine. I did a marathon fine while I was in remission!!). I have my ME/CFS back as I caught a virus which was going around and ended up ME/CFS again. If you had this illness, you will be always at risk if hit with the wrong trigger be it vaccination, a virus or whatever, so take care.
     
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  9. jeff_w

    jeff_w Senior Member

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    Glad you're better!
     
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  10. james7a

    james7a

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    I totally agree. Anyone person claiming to have a 'one size fits all cure' is full of it. but my advice won't make you any worse. and it's just about sharing my story and hopefully it can benefit other people.
     
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  11. james7a

    james7a

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    I don't get wired after exercise. I used to be wired constantly. the thing that benefit me the most in that regard was calming my mind, sorting out psychological things and seeing a chiropractor for muscle knots and trigger points.
    When I first saw my chiropractor she said I was the worst case she had seen in her career, so sorting out posture/muscleknots/trigger points is as important as diet in my opinion. I really do think everyone can benefit that.

    the supplements I recommend are probiotics only. Ovbiously if you're in need of vitamin D, take vitamin D. I used to constantly be trying the latest new cfs 'supplement' for example, D-Ribose. I used to spend 80-100 pounds a month on tons of different supplements when I was desperate. If you're like that I would say don't waste your money and buy healthy food instead.

    Hi tania, yes it does sound like POTS. I developed those symptoms 4 years into ME/CFS. I'm sorry you got struck back down with this horrible illness. I really hope you get better. I can't help myself, I want to start having a life. I've not really had one since 2005 and I now that I'm feeling good for the first time I can't live with a fear of relapse in my mind. thank you for your concern though
     
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  12. james7a

    james7a

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    Yup. I tolerate gluten/dairy. but it isn't a healthful food when you're ill. I think it's best to play it safe no matter what when you have CFS and cut out everything that is not healthful. I actually cut out all vegetable oils too.

    I agree that if you have a deficiency it doesn't hurt to supplement. I was more talking about people like myself that are so desperate and lose sight of reality in terms of the effectiveness of supplements. I tried all these different herbs etc and looking back I had no idea what I was hoping for??

    It's hard to know why I developed ME/CFS/POTS symptoms. I was bitten by a tick when I was 11 (2001) but I didn't have symptoms until 2004/2005 ~. I was thinking it could be a lowered immune system that allowed it to effect me later on? I've given up trying to figure out why it happened :)
     
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  13. james7a

    james7a

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    thanks for the replies everyone. I just wanted to mention a few things. The main point I want to put across is that there is no 'one' thing that will cure cfs, you can the most perfect diet in the world and it will not cure you. When I originally cut out dairy/gluten I thought to myself, I'm not cured therefore diet isn't the cause of CFS. I then proceeded to add dairy/gluten back into my daily life. This was the wrong move. What I'm saying is, if you start a healthy strict diet and it doesn't cure you do not go back to eating unhealthful foods because it will only make it harder to recover.

    In my Misc video for people that can not watch them I state that I changed everything down to:
    wearing no perfumes or deodarants. (I had 2 lumps under my armpit from blocked lymph nodes which is a really bad sign)
    Playing no video games
    watching no intense television shows or movies (watching very easy to watch programs like family guy instead)
    because I noticed these hindered my bodies ability to be calm. Video games/movies/tv shows that were intense kept my body in the 'wired' state I was in for years.

    I literally changed everything about my life. even down to not plastering deodarant under my arms and I believe it helps. I looked at my CFS as a scale, and taking the weight off 1 by 1 from the heavy side.

    I forgot that many people here mentioned that they can not watch the videos so I may come across as somebody that is just saying 'eat healthy and you'll be ok'. Far from it!

    When I had CFS I used to compensate my lack of life with television/movies/games. This was counter product to healing, big time. That is just one aspect that needed changing. I could of cut out all stimulation and not be cured If I didn't change my diet aswell amongst otherthings.

    for the people that can not watch videos, I could type it all out for you if you would like?
     
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  14. Vic

    Vic

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    Except he does know exactly how to fix CFS/ME. Not 25%. 100% (or close).

    Congrats James for figuring out what it takes. Like your videos.
     
  15. Vic

    Vic

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    How much would you say you're recovered? Sorry if you said so already. I guess you might not know since you've had it for so long.
     
  16. james7a

    james7a

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    Hi Vic,

    I would say completely. I actually want to exercise, not forcing myself to do it. The difference before was If i would go for a walk (when I was at my worst) I would feel: Shaken up, weak especially in extremeties, adrenaline feeling (burned out), wired and would take me a week to recover even from taking the dog a walk for 20minutes. That was the only exercise I was able to do and even that was pushing it. It's why I think graded exercise is a load of s**t. If your body is giving you signs that exercise is a no go you shouldn't exercise, from my experience anyway.

    Yesturday I went a run and did weights. It's strange feeling that 'good' tiredness instead of that flu feeling.
    Now I just feel a good sense of tiredness from activity that has gone by the next day. the only thing I have to deal with now is some left over deep rooted anxiety. but I believe that a consistent routine will make that wither away with time. thank you vic!
     
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  17. A.B.

    A.B. Senior Member

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    For how long have you been 100% fine? It might just be a remission, not a cure.

    Do you have any idea what systems were most affected? Any abnormalities on lab tests?
     
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  18. ukxmrv

    ukxmrv Senior Member

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    James,

    Did you have a viral trigger for your disease or any viral tests / symptoms?

    Also may I ask, what criteria of CFS did you meet?

    I'm not knocking your recovery. Just curious to see what group you are.
     
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  19. james7a

    james7a

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    I've been 100% fine since august/september roughly. I had no abnormalilties on standard lab tests, including iron/b12. wierdly my b12 was out of the national average 997 (200-900 average).

    I don't know what triggered my disease ukxmrv. possibly:
    1)I was bitten by a tick in 2001
    2)had a TB jab in 2004 (I felt a noticable difference about that jab, especially weakness in extremeties)
    3)I was under alot of stress
    4)my family has a history of glandular fever/CFS
    5)I think I absorbed alot of junk whilst swimming in the sea(2005~) (in a harbour), came out with huge boils all over my back

    My symptoms were changing often but the core ones were:
    tiredness without relief for years
    achy / flu like symptoms
    couldn't concentrate on anything / brainfog
    those were persistent and other symptoms came and went through out the years including:
    a period of fibromyalgia pains especially in my arms. headpain, even the slightest knock would feel like I've been punched. sometimes my hair had pains ( i have no idea how to explain). Sometimes I would have electric shock feelings through my limbs. Sometimes I would be walking down the stairs and feel as though my arm is in a different place to where i feel it for a few seconds (like a delay). Even 'quiet' sounds would make me flinch. I absolutely hated loud sounds. My body was malfunctioning. The list is endless as you all know...

    + The POTS symptoms I said before. those came much later in my CFS.

    I never got diagnosed with CFS, I gave up for 2 reasons.
    1) the doctors wouldn't acknowledge cfs, and the one that did said well even if you do get diagnosed there is nothing we can do for you. Diagnosis for cfs doesn't achieve anything she said. (Also testing for lyme is damn expensive and doesn't really achieve anything either because doctors in the UK don't acknowledge foreign tests afaik)
    2) I realized that medicine can't do anything for CFS so why go through the humiliation of being talked down to? the painful life with all these symptoms for someone to look me in the face and say pretty much that I'm making it up.

    I stopped focusing on a diagnosis and focused on creating a healthy body to fight whatever the problem was. I just believed that my body could do it's job if I cut out everything that 'could' be harmful. It's hard but worth it.
     
    Last edited: Mar 11, 2015
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  20. Vic

    Vic

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    @james7a If you still have anxiety you still have room to improve :) Keep it up dude!
     
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