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Stages of Recovery - personal experience

Discussion in 'General Treatment' started by Carter Burke, May 22, 2010.

  1. Carter Burke

    Carter Burke Guest

    You might know I've been on Dr Myhill's standard treatment protocol since Nov/Dec 2007. I had a slow onset case of CFS, with no obvious cause, which had really set in by about 2002 - although it had possibly been building since much easier.

    I scored a borderline 20/30 out of 100 on the mitochondrial function test (which my GP recommended, as another of his patients was getting good results following that test and being put on Myhill's protocol). I'd been largely housebound for 5 years. A typical daily patch of fatigue would make talking and breathing feel labored and exhausting. Any light exercise would usually send me backwards. A fairly stubborn case.

    From keeping logs of supplements, daily activity, symptoms, diet, sleep, etc. in Excel, I've been able to work out my limits, see when I'm pacing within them, see how going outside them affects things, and track my progress.

    In the winter of 2007, a 10 minute drive up the road left me feeling physically sick with exhaustion for the rest of the day. Although I was very up and down back then, days like that weren't uncommon. Just recently I've got to the point where I'm able to do 6 hour long journeys, socialize, work, and NOT pay for it the next day or the day after. I still have to be very careful with pacing, and still take a lot of supplements, but I'm very much in recovery and I think it started the day I got my test results.

    Anyway, from 2 and a half years of monitoring, I can break my recovery down into a few identifiable stages, and I *think* most people recovering from CFS will probably go through these.


    1. Uncontrolled/erratic fluctuations

    - This is how I spent the 5 years prior to getting on a decent treatment plan. I'd have good days; bad days; sometimes good weeks and months, where I'd work at graded walking protocols (even got up to walking a mile once from a few months earlier where I'd almost collapsed after 50 meters). Overall, there was no steady improvement. After 5 years of standard supplements (Centrum, Omega 3, vitamin C), countless attempts at graded exercise, yoga, tai chi, etc. I was probably at my worst in 2007. Daily symptoms, at rest, orthostatic tachycardia, lightheadedness, temperatures, etc.


    2. Stabilization

    - This is the keystone to recovery in my opinion. This is where you work on correcting whatever obvious(/common) problems you might have - (food intolerances, treating more acute vitamin/mineral deficiencies: B3, B12, magnesium, CoQ10, etc., reducing psychological stress, addressing breathing pattern disorders with things like the Buteyko technique, detoxing) - and MOST IMPORTANTLY: get your daily activity/stress levels right down to a point where your symptoms start to stabilize... For me this meant spending a lot of time lying down, with my feet elevated, and just having a very sedentary lifestyle: cooking a few times, walking short distances around the house. (Thinking of CFS as heart failure secondary to mitochondrial failure certainly helped me stick to this!)


    3. Recovery trend

    - This began after about 3-5 months of stabilization, and had I not been graphing my activity levels every day with a pedometer, I would never have noticed it. This is when your activity levels increase very gradually over time, once your symptoms are steady and not fluctuating so much. So rather than 'boom or bust', week on week, you're averaging a certain level of consistent activity each day, and you begin to see a gradual trend of improvement. A good sign is when after a day spent lying down, not doing much, you actually feel the need to go and burn off some energy. This lasted about 18 months. (The rate of activity increase worked out to 1.2-1.3 additional steps taken over an entire day, when averaged out over weeks/months! Somewhere around a 0.1% daily improvement. But recovery seems somewhat exponential, so even such modest improvement - which you'd NEVER notice normally - should be seen as a positive thing, and why trying to work out which supplements help and don't help, expecting noticeable increases in energy, is probably pointless. I noticed a slight further increase in recovery when I added L-Glutamine 15g/day, BCAAs 10g/day, and Malic Acid 1g/day to my protocol. All common sports supplements.)


    4. Plateau/Symptom Remission

    - Not long ago, my activity levels stopped rising, and settled around a certain level. I looked at all my activity charts, diet changes and supplements, and wondered what had gone wrong. What I didn't notice was that my symptoms were still lessening; probably faster than they had been prior. I was now getting days when I didn't really experience any fatigue. Still ups and down, especially when fighting colds/viruses. I think the main reason my activity plateaued is just because I was at a level where I didn't really need to do much more. I was up and about enough to get through my day at a relaxed level. Note: I'm still resting and pacing as much as ever. I tend to find I need 15 hours straight rest a day - which might be 3 hours resting before bed; 8 hours sleep; then 4 hours lying down in my living room, doing the bare minimum. (When I'm not doing something, I'm lying down - it takes a lot of stress off the adrenals/heart/etc.)


    5. The Point Where Pushing Yourself Actually Helps

    One of the most frustrating things about the condition up until this point is that I had always wanted to improve my energy/fitness by working at it, but it always seemed the more I did, and the further I got, the higher I was going to fall back down before long. After 6 months or so of plateauing, I've found I can ever so slightly push my boundaries, and make progress at my own pace a bit more. (Rather than just listening to my body and letting it dictate things.)

    I think the 2 years of stabilization and very gradual recovery is mostly representative of cell-level recovery - damaged mitochondria being given a chance to recover and being given all the nutrients they need, in abundance, whilst detoxing protocols (like FIR sauna therapy) and supplements which help detox, gradually lessen toxic agents which may have been impairing them in the past.

    I think of it like building up a long-term energy buffer. When you have uncontrolled CFS, you can sometimes do *big* things by resting up for a few days earlier, then going and doing it, then resting a few days/weeks following. Well that's not a good way to get into recovery, but it shows how there's an energy savings/investment scheme going on. I think by stabilizing, you allow that buffer to expand to the point where your body can start to heal itself properly. Then next stage seems to be actually running the system in a bit, so the body can get used to dealing with stress again.

    For example, 2 weeks ago I did an unusually long drive of 3 hours. I broke it up with rest stops, made an energy drink for myself (Malic Acid, D-Ribose, Vitamin C, L-Glutamine), and used pure dark chocolate and rice cakes for additional energy.

    The first time I did it, I was shattered afterwards, and spent the next three days resting.

    The second time I did it, I was okay afterwards, but still spent the next three days resting.

    By the third time I not only did it, I drove quite considerably further, didn't feel tired afterwards and didn't feel particularly tired the next day.

    This has been in the space of about 2 weeks. And I think this is the point where graded exercise becomes useful. As long as you continue to monitor your symptoms and pace. I think anyone who's had a lengthy case of CFS needs to continue to pace and possibly use certain supplements very long-term. As soon as symptoms reappear: get total rest and go back to the protocol. (PS - my diet is very simple these days. I suspected lectin and fructose problems, as well as gluten and dairy. I could be wrong, but my diet is mainly white rice and chicken, and extra virgin olive oil/coconut milk. For vegetables I eat onions and the occasional carrot. I'll work on reintroducing things very carefully over time, but white rice and chicken is a pretty safe bet considering how difficult it can be to pinpoint food intolerances.)


    Just my observations anyway! I've seen similar stages in friends who've recovered now I think about it. Aim to be a healthy, sedentary person first.
     
  2. brenda

    brenda Senior Member

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    Carter good to hear from you again and about your progress.

    I agree with a lot of your own understanding about the illness, that one needs to be stable and to cut back until one is. I did this to get into recovery.

    I am near the end of the first year of my own recovery and it has been a bumpy path with many setbacks but things increasingly pick up speed and now I am much further on than any recovery from relapse that I have had in the past. The hard bit was the psychological effects this path has had, like there was some healing required there as well due to the damage done with the illness and the trauma involved of having an illness like this, unrecognised and unsupported. I have made great strides there though and feel I am getting over all of that angst and seeing myself less and less as a sick person. I see a vast gulf now between myself and others who are in the throes of it all. My reasoning is different and this is outastanding for me as I have been sick for so long. It is like I have come from out of under a cloud.

    My own theory is that it is best for the body not to be stimulated by supplements and to allow it to heal at its own pace and to allow the immune system to recover by giving it the best foods and by removing everything that is not suitable and that it will cope better if not given to much to deal with by way of supplements.. So I have been taking nothing, well until recently when I have a little B12 but only occasionally as I am now vegan and I have decided on amino acids for the same reason. I have used things like coconut kefir and have had trials with various other foodstuffs and probiotics but nothing has made much difference though I feel the kefir is good but I am having trouble with it growing in coconut milk and have to give it a dose of cows milk every few days to keep the grains happy.

    The most important thing has been to exclude all grains including rice and living on seeds vegetables and fruit. This was astounding. It was only when the avoidance was total that I saw a huge change in symptoms that I have had as long as I remember. I concentrate on raw foods but have cooked as well as sprouted seeds like quinoa and millet and steamed as well as raw vegetables and much more fruit than I dared in the past through candida. All seeds are soaked first as they and grains contains anti nutrients. I also use some macrobiotic foods like kuzu and tamari. Did you know that there is a problem with white rice and arsenic? And are your supplements gluten free? You should be healing from intolerances faster than this. I only had to give some of themup for a few weeks then they showed clear, the big one 3was rice . I was unsure about giving up meat but have found that it was a good move and now I am using sprouted brown rice powder in smoothies and have some hemp seed powder coming. This is a better way of taking in protein I feel as meat is taxing on the system of sick people.

    The other day I got `glutened` in a health food store which was serving sushi with pickled ginger and raddish. The raddish had shoyu in which I found when I got a packet home and read the label. I was shocked and also very ill the next day. It was the first time that I had not read a lable carefully and I will not do it again. All of the symptoms of crash came back.

    But anyway the improvement now is amazing. I do not need to rest in bed on most days and can do much much more. There is no need for pacing - I just do what I want to do and am pretty active some days. I do rest when I feel tired but generally am doing as much as I want without being silly and feel that a crash will not happen because of the diet I am on which is allowing my body to heal. I am pretty pleased that my mental function is so much better especially when I was experiencing Lyme dementia so I feel that the disease is in recession and now I am repairing the damage it did and also the damage which was done through gluten sensitivity.. I am also very confident that I can heal by myself - I do not need a doctor and anyway I never found one who got how ill I was.

    I may have done things more slowly with not taking supplements but I feel that the healing is deeper and more stable because of this.

    I am hoping to reach a point of starting to get cleansing going at more speed through colonic irrigation and then liver and kidney cleanse but I don`t know when that will be but I know that healing will really speed up then.

    It all feels more relaxed now - this is a lifetime effort and my diet will remain like this as I want to give it the best always and respect it but also as my age is going to be a challenge having now reached 60. Now that I have seen how diet can change things I do not want to allow degenerative processes to go on in my body which people think of as the effects of ageing but are not - they are due to bad diet. So I am aiming at climbing mountains into my 80`s!

    I have really said goodbye to the medical system and the pharma system and have every confidence that whatever ails me in the future can be healed through natural means and it will leave my body in better shape avoiding them even thogh I have gone though much pain in the process and still have much pain in certain joints.

    Carter I wish you well.

    Brenda
     
  3. Carter Burke

    Carter Burke Guest

    Hey Brenda!

    Great to hear you're doing so well. It's very difficult for me to know how much of my progress is down to supplements, because I got to a point in 2007, after realising I hadn't got anywhere in years, where I was willing to try everything in the book, and just stick with it regardless - and I think having Dr Myhill's reassurance and more scientific understanding of (at least) my condition and symptomology made it easier for me to do that.

    My first year of proper recovery was certainly subtle! I was much more stable, but I'd pay heavily for exceeding my limits (in terms of stress, activity, or just fighting viruses). My second year was where recovery picked up pace, but still I'd have ups and downs which gave me weeks where I'd feel I'd got no better at all.

    I certainly share your belief that diet is one of the major factors which sustains this condition, or which can reverse it. At least *something* in our environment, that we probably don't even think about. Although I certainly found supplements gave me enough of an energy buffer in the first place to get out of what I call 'major debt' with my energy/immune system. (And my tests did show deficiencies in most things they tested for: B3, L-Carnitine, magnesium, Q10, etc. So those deficiencies alone could've been dragging my health down and sustaining a low energy state.)

    Interesting you mention that about white rice. I read something called Grain Damage once, which was compelling. I only wish everyone was put on a very strict, and ideally carefully monitored, exclusion diet as a first step in CFS. (It's what Dr Myhill recommended - but I'm sure our food addictions can make us a little lax on that kind of advice.)


    I've actually found, psychologically, it's been far from a bed of roses getting well.

    I've heard people say this about other health conditions, that when you're chronically unwell, despite all of the sacrifices and mental hardship we endure, expectations we have to give up, life does become very simple...

    Life with CFS was not something I wanted for myself, but in many ways it allows you to opt out and I think in giving up so many expectations you actually find some kind of comfort and stability I think a lot of people (without health problems) crave. (There are a LOT of people who choose to smoke marijuana all day who really live exactly the same lifestyle as people with fairly severe CFS.)

    Managing CFS is difficult, but we all get used to it. I don't think anyone really gets used to managing life. I've had some of my biggest lows since the fatigue's lifted because I'm facing stresses/uncertainties/expectations I hadn't dealt with since prior to getting ill. Things completely unrelated to CFS, of course. I'm losing my CFS 'Zen' a bit, but finding the highs higher too, of course, and embracing this recovery.

    I know a lot of people don't like any mention of the 'P' word (psychology) but I don't think we should be surprised to find a psychological aspect to most health problems. Not an origin, just a part of the picture - as of course, any thought we have causes *a* biochemical change in the body. One of the things I really had to decide, and something I tell myself daily, is that I'm 'ready' to be well.

    I think at some level, that took me some convincing.
     
  4. ramakentesh

    ramakentesh Senior Member

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    A fascinating post and really in some ways parallels my own experiences although my current relapse is being quite stubborn and ongoing life stresses have taken their tole. Ill add that to my favourites.
     
  5. brenda

    brenda Senior Member

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    Carter agreed the psychological part of healing has been tough. Things are a lot more complicated than when you are sick and think that it is incurable. You just live for the day then but when there is the very strong possibility that you are going to get a lot better then things are harder. You have to keep yourself positive for a start otherwise I don`t think you can heal. When you have a detox day you really don`t know for sure if you are getting worse or getting better. And then there are the dietary restrictions - so hard when you cannot have a little treat as your body understands treat. There is nothing that you can eat or drink to relieve the down day. Well nothing that you used to like anyway. I have found some rice cakes with sugar free carob on top but if I buy a pack I eat them all. I have also had my whole life run through again and all of the upsets and have had to go through them again. My mind gets clearer all the time but |I am aware of things that just passed me by when I was sicker. I think that food addiction plays a role in all of this. Getting clean is tough. It must be similar to this for drug addicts. After the first year one gets used to things and can see the progress so it eases but is still tough.

    I think where I do not go along with you, is that I think that if the bodyis short of something, I don`t think it is a good idea to just replace it as there might be a good reason why it is reduced - some protective mechanism for example. And the same for reducing something which is high like cholesterol - the medical fad at the moment when it is actually raised more in people who live longer. I believe the body will right itself given the best foods. Ah my new arrivals are here - chia and hemp seeds o yummy!

    Brenda
     
  6. Carter Burke

    Carter Burke Guest

    ramakentesh:

    Thanks so much! I read something similar once about the stages: stabilizing, gradual recovery, then pushing a bit. But couldn't remember where.

    I'm trying very hard to avoid any chance of a relapse/crash. I think graphing my activity everyday helps me see when things are beginning to go downhill a bit, and I can then preemptively take rest days where I do nothing. And it's often been the mini-crashes which have made me explore other supplements and experiment with my diet more, and have mostly helped long-term.

    My brother had a very severe case when he was younger, and he's doing fine now. But I do remember, even right back when he was only just getting well again (for him it was high dose B12 which began to turn things around), as soon as any tiredness/symptoms came on, he was right back in bed resting up before he started to get ill. And these days he's doing an intense academic qualification; lecturing; working a full-time job; travelling all over the world; etc.


    brenda:

    So glad I'm not the only one who finds getting well a little overwhelming! Life's certainly more up and down. I feel great knowing this huge burden seems to be lifting off me, but I can feel much lower too as I'm gradually becoming a healthy person again, but with a life that's going to need a lot of work, and of course, as you say, thoughts of missed opportunities, regrets, everything coming back. I suppose it's a kind of state dependent memory thing, where you suddenly start to become the person you were before you got ill. In fact, between getting ill and starting treatment, I really don't remember much of my life.

    And I totally agree about supplements and looking at why the body's gone out of balance in the first place.

    But then I also think of CFS as being all about vicious circles. So while filling myself with all the nutrients and energy producing substances I'll need isn't a *cure* in itself; I think it takes enough strain off the system for the body to begin to heal itself.

    But quite possibly these diet or toxic or viral aspects are what keep us ill, and certainly my specialist sees these as central to getting well, and supplements as being more of an aid I suppose. Then again seeing how quickly my brother got well after B12 shots showed me that perhaps the body could rebalance itself once it had been lifted out of some self-perpetuating state.
     

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