C
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.
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.