Friday 1 July 2011

CFS and how i found my way out.

Hi team,

I decided to start a blog about how i -fixed- my cfs.

Having Chronic Fatigue has been very frustrating. It is easy to have one's defined by it. The most i missed was being able to do exercise. At one of my lesser moments of CFS, I remember kicking a soccerball for about 2 minutes, having to apologise to my friend because i became so tired and went home to crash for 16 hours in bed.

People will still put regular responsibility on you, why arent you working enough, why dont you move out of home. etc. When i had fatigue, everything was a huge chore. Simple things people take for granted, having a shower was a struggle for me, sometimes it would be enough for me to go back to bed. Where i have probably spent the last four years spending 2/3rds of my time.

I'd define chronic fatigue as constantly feeling overwhelmed/tired by life, feeling -unwell- and as your nervous system is smashed, feel attacked from everywhere at once.

The Doctors I saw got sick of sending me for blood tests, one had a chat with me about how she couldn't send me to get more due to her monthly budget and insisted that i be put on anti-depressants. Doctors love prescribing anti-depressants and antibiotics for problems because it seems to go away, in the short term anyway. And they get paid.

Problems:
Low blood pressure.
Constant sugar cravings.
A feeling of being unwell. That something was wrong in me or with me.
Tiredness that never disappeared. Sleeping would not restore what it should.
A fear that everything i did would contribute to the CFS. This developed after having CFS for a while and most things would seem to.
Sensitivities to every second food.
Exercise with any use of strength or adrenaline would drop me to the point of exhaustion.

There were 2 things that helped pull me out. The first was listening to myself, part psychology/meditation.

If CFS is not depression, why deal with it on a psychological level?

I spent four years in every kind of therapy i could manage energy wise. Looking for answers, trolling the internet for symptoms, cures, treatments etc. What is easy to call hypochondria, but i felt an agonising need to find out what was wrong. I spent some good times in therapy, which did not cure my problems but helped me get to a space i could manage my stress and symptoms.
I definately recommend people find a good therapist, at least to help manage the stress of CFS.


Meditation and why its important.
Meditation is the hardest activity anyone can do. Its also the easiest way to feeling better in one's self. Due to the amazing amount of options we have in our technological age, its easy to get overwhelmed and never spend any time with ourselves. I know when i was feeling my worst, thats when i wanted something to take me away from feeling bad. To lose myself in drama/excitement to pick me up.

Immediately after meditating, i would fill my mind up quickly because i was afraid of pain. I think the most important question for people struggling with any long-term illness or issue is: What is my relationship to pain?
I personally ran away from it. Some people drink, take drugs, overwork. I hunted my problem down, while running away from it at the same time.

Then one day spent being angry at myself for wasting time doing useless activities, I felt i'd had enough. I sat down with a book about meditation for a few minutes to prime myself then started meditating. After two minutes when i was ready to quit I said, "No i'm sick of that drama" and kept with the meditating, it felt as if something fell away.

Dont get me wrong, every time one meditates, the need to do something else seems lurking underneath, waiting for a weak opportunity to come out and say, "you'd rather go do something else." (a good way to end up doing housework is to start meditating)

So I sat. And i felt god awful amounts of pain in my body. But i let myself stay with the pain and let my thoughts be heard with acknowledgement then let them go. And after all those horrible struggles, after meditating i felt freer in the body and the mind. And life stopped dragging so much.

If I found a nutrient that cured my CFS, why talk about meditation?

I don't believe that the nutrients i needed alone would have kept me out of having CFS. And that is very painful to acknowledge.

Pain represents a blocked emotion, belief or trauma in life. And the more time we spend with pain, the more free our bodies and mind become, the more time we spend in the moment instead of focusing on what the hell happened that time someone said something nasty to you.

My cure

Was a cellular dose of potassium/magnesium. Though usually i don't buy this brand, this is their pharmaceutical range. Blackmores PPMP. Potassium Phosphate/Magnesium Phosphate.
They are celluloids, apparently absorbed straight away.

Within 10 seconds i felt well again. That something that i was lacking was finally in me. And my muscles started to relax. That week, when before i hadn't been able to use either strength or adrenaline without getting majorly fatigued, i had a training session with my friend, where i punched hard using strength and speed, i had him in a choke where i was able to squeeze my muscles, instead of technique for a good 10 seconds to turn the choke on.

So since being on it my problems list has disappeared and i feel brilliant. This was not a complete fix, of course if i don't maintain a good balance i will no doubt end up back there. But at the moment its less chronic fatigue and just occasional fatigue.

Now why would it have that effect?
I had taken magnesium before and only felt marginally better.
Apparently potassium deficiency rarely occurs in healthy individuals (according to wikipedia). I sure as hell didn't feel healthy though.

Potassium is a very important nutrient. It is important for maintaining blood sugar levels. Magnesium is required to relax muscles.
Calcium is needed to pump the heart, magnesium to release the pump.
Sodium and potassium are required as electrolytes for healthy blood flow.

Due to the problems with sugar cravings, intense body tightening, lack of energy and problems with basic foods. I believe Potassium and Magnesium together could have an impact on those with CFS lacking these nutrients. It probably won't be a cure all, as every case seems different and you have to find out what works for you.


The End

My hope is that this gives people suffering a bit of insight into how i dragged my way out of it. And are able to do the same themselves. If people think you're mad, let them and do what you need to do for yourself. Sometimes people can be a good barometer for us - but the best barometers are the ones that listen as well as talk.

5 comments:

  1. Hey Gavin,
    Thanks for the update. Sounds like we're on a similar path; I do meditation and breathwork every morning. I have a dubious relationship with pain; still working on that. I want to try Blackmores PPMP, but I notice it's practitioner-only so you can't order it online. Where did you get it?
    Cheers,
    Graham

    ReplyDelete
  2. I am so glad to have come across your blog. I was also "diagnosed" with CFS in 2007 and it took me at least 3 years to get back to some semblance of normalcy. Meditation and acceptance of things/thoughts in the mind and body was definitely at the top of the list for me. In addition to that I gave up all meat, eggs, and dairy. I have no scientific rationale for giving these up, but they really helped me.

    My anxiety reduced greatly. I was able to do yoga regularly (very mild - mostly pranayam). I was treated with many homeopathic medicines, but i am not sure they had an effect on me.

    Anyways, now I am a lot better. I am almost vegan now, and try not to live life in the way that I was living it before I fell ill.

    Again, great to read about your journey. It is amazing how methodically you dealt with this and then even posted this blog.

    TJ.

    ReplyDelete
  3. Cycling Valtex completely eliminated symptoms of my CFS.

    I take 1g of valtrex twice a day(every 12 hours) for 4 consecutive days, once a month. I am a male and weigh about 180lb. ATTN, recovery mechnism is delayed, for the first 6-8 weeks I saw no improvement, and then I had full recovery. Also, I tried 500mg – it does not work for me.

    Here is my story in greater detail:

    My condition started with a flue and then continued with all the standard horrific symptoms. After two years of research and a couple of molecular cell biology courses, I narrowed my hypothesis down to Epstein-barr virus and HHV1 – high antibody titters kept on showing up in my bloodwork. Based on the information I could find, it seemed that EBV is suppressed by Valtres only at high concentrations while HHV1 is suppressed at both high and low concentrations. So, I started taking Valtrex – 1g ever 8 hours. After a couple of weeks i clearly felt that my body was suffering side effects from Valtrex. My stool turned white and I started loosing weight. I stopped after a month. And then, about 6-8(approximate) weeks since I first started (and so 2-4 weeks after I stopped taking Valtrex) I had a full recovery. Energy, comfort of being in my own body and sleep all returned. That was so odd! Recovery lasted about 6 weeks, and then I relapsed back into CFS. So, I started experimenting, and
    to keep the long story short, I discovered that the minimum dose was 7 1g pills of valtrex taken consecutively at 12 hour intervals ( I take 8 just in case). Recovery is delayed by 6-8 weeks, and then lasts another 6 weeks. So, to keep myself from relapsing I started taking it every month as described. And I have been feeling well since.

    I know Valtrex does not work for everybody, and I know that it works for some. I never tried Valcyte, I don’t know if cycling that in a similar way helps with other types of hhv

    ReplyDelete
  4. Cycling Valtex completely eliminated symptoms of my CFS.

    I take 1g of valtrex twice a day(every 12 hours) for 4 consecutive days, once a month. I am a male and weigh about 180lb. ATTN, recovery mechnism is delayed, for the first 6-8 weeks I saw no improvement, and then I had full recovery. Also, I tried 500mg – it does not work for me.

    Here is my story in greater detail:

    My condition started with a flue and then continued with all the standard horrific symptoms. After two years of research and a couple of molecular cell biology courses, I narrowed my hypothesis down to Epstein-barr virus and HHV1 – high antibody titters kept on showing up in my bloodwork. Based on the information I could find, it seemed that EBV is suppressed by Valtres only at high concentrations while HHV1 is suppressed at both high and low concentrations. So, I started taking Valtrex – 1g ever 8 hours. After a couple of weeks i clearly felt that my body was suffering side effects from Valtrex. My stool turned white and I started loosing weight. I stopped after a month. And then, about 6-8(approximate) weeks since I first started (and so 2-4 weeks after I stopped taking Valtrex) I had a full recovery. Energy, comfort of being in my own body and sleep all returned. That was so odd! Recovery lasted about 6 weeks, and then I relapsed back into CFS. So, I started experimenting, and
    to keep the long story short, I discovered that the minimum dose was 7 1g pills of valtrex taken consecutively at 12 hour intervals ( I take 8 just in case). Recovery is delayed by 6-8 weeks, and then lasts another 6 weeks. So, to keep myself from relapsing I started taking it every month as described. And I have been feeling well since.

    I know Valtrex does not work for everybody, and I know that it works for some. I never tried Valcyte, I don’t know if cycling that in a similar way helps with other types of hhv

    ReplyDelete
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    ReplyDelete