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Chronic Fatigue Syndrome
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Posted 7/7/2012 2:17 AM (GMT 0)
im 16 years old, ive been ill for a while now in and out of the doctors none stop.. my life has gone down hill already and this isnt a nice thing as my life is only just begining!!
id say ive been feeling like this for over a year and a half now; ive been having headache bad bellys sleeping all the time and have been through the stage of not eating and not going out which isnt very nice.
the doctors have been testing me for a lot but everything comes through normal, then i got diagnosed with CFS but then again there is nothing to help me, then a couple of weeks ago my doctor said ive got IBS so i was on tablets but they then made me feel worse than i have been, what can i do to help me!?
ive been going through a hard time with this as my life isnt as it used to be i used to be up for anything and fun, now i am just concious and scared of everything and been getting very depressed. its hard for alot of people to understand how i am feeling, and this is putting a lot of pressure on my mum and dad which i do not like, i just want to get out of this on my own.

im finding everything so hard at the moment, and starting college very soon- which i would be happy about but this is holding me back and making me a lot worse while thinking about it.
Hopefully someone can help me :(
thanks x
Posted 7/8/2012 3:36 PM (GMT 0)
Welcome StaryEyes,

I'm really sorry that you're going through this difficult time, especially as you're so young. I spent over 2 yrs in bed with CF and am now nearly well. No longer spending all day in bed. What got me better was my Dr took me off sugar and dairy. Dairy was causing IBS and other issues and the sugar was causing the fatigue. It was very hard but I was at rock bottom so I was willing to try anything. I went off the above two things and started to improve within the week. I improved so much that within 6 mths I had started back at work and was completing my degree (as well as raising my son). I was also put on magnesium powder and other supplements.

I've since read a book which I think is called Beat Sugar Addiction and it tells how sugar negatively affects the body and how to go off it and what supplements to take.

I wish you all the very best in your journey back to good health and believe me, you will get better :)

Take Care

Lou
Posted 7/10/2012 12:49 AM (GMT 0)
I've been living with CFS for 4 years and this is what has worked for me.

IBS seems to come to many of us with CFS. Dairy was not an issue before I got sick, I've been allergic to it for years and thus was not consuming anything. I go light on sugar, generally only natural occurring like in fruit, hardly any bread, considering cutting out wheat altogether.

The best thing you can do for your illness is to learn about and practice pacing. You need to learn to listen to your body and stop BEFORE you go to far. The last thing you should do is push yourself. I have to stop and start a number of times before tasks are completed and it makes a big difference.

Under the guidance of my specialist and primary care provider I am taking the following supplements, some are cheap, others, not so much. It is recommended to add them one at a time so that you can tell what is affecting you.

Omega 3/fish oil
Evening Primrose oil
Vit D3, lots of it, definitely more than is recommended on the label
B12
Coenzyme Q 10 (for me this has made a really big difference)
Magnesium glycinate (at bedtime, it helps you sleep, relaxes muscles and is just all around necessary. The glycinate version is easier on your gut and is better absorbed)
Valerian Root (at bedtime, relaxes you and calms nerves but primarily take it because it helps you to get to a deeper level of sleep)
The best probiotic you can find

The only prescription I take is a sleeping pill. They tried to put me on antidepressants as there is theory it is supposed to help the brain function better, help with the darned headaches and sleep. I can't take them, tried a few. I find that taking care of myself nutritionally, getting enough rest, and my sleep cocktail does what they wanted the antidepressants to do.

Support groups are a wonder, finding a group of people who get it and understand how important the small gains and accomplishments are is vital to my recovery. You also need to grieve the loss of what you used to be and do and learn to accept your current state. Once you do that you'll be able to recognize the big deal every improvement is. Aim to treat your body with respect and fingers crossed, it will respond.

Educate the people around you. I use Google alerts, have it set up so it sends me links to new stuff on the web about CFS. When something really makes sense to me and I think it will be helpful to others, I share it on facebook.

Look through this one, scroll down to where you find the Letter. Substitute CFS for chronic pain and it's like I wrote it for myself. http://www.spine-health.com/blog/open-letter-a-person-chronic-pain

Angie
Posted 7/10/2012 7:16 AM (GMT 0)
Hi Angie,

I really enjoyed reading your post.  Your story is similar to mine by going the natural way to better health.  I had not been told about CoEnzyme Q10 so I will get some and give it a try.  I had to go off all my supplements late last year due to issues with my liver but am slowly reintroducing them however I'd forgotten a lot of what I was taking.  I really need to up my Vitamin B injections as I don't think 1 every 3mths will really be that much helpful. 

As I said to StaryEyes, I've gone back on the sugar and dairy and everything has flared up again.  I really need to make a concerted effort to get back to a more nutritional diet.  I'm going to write down what you're taking so i can start to introduce those supplements I'm not taking into my diet.

All the best

Cheers  Lou

Posted 7/10/2012 7:20 AM (GMT 0)
PS Angie, how do I know what's a great Probiotic? :)
Posted 7/10/2012 12:24 PM (GMT 0)
Re. the prebiotic. I am going to have to look in the notes my specialist gave me and the book they recommended for the actual strains but I am relatively sure you are looking for lactobasilis GG. You are looking for something that has the most LIVE strains, likely needs refridgeration. My problem is finding one that isn't cultured in dairy, my allergy to the milk protein is that sensitive.

The CQ10 I started taking due to the theory of Mitochondrial Failure. There are a few supplements to help with this, I started with CQ10 first because of it's availability. Others include the B12 (already on), D Ribose, NADS (which I'd have to look up again) and Acetyle L Carnitine (not available in Canada and can't get it across the border). I was planning on sourcing D Ribose next.

CQ10 has made a huge difference for me. I went from relying on my kids (12 and 14) to basically run the house to being able to assume that role again and beginning to feel the spark of life inside of me. I had a bit of a set back with my son's recent accident and now prepping for a colonoscopy (all in the same week) but will increase my rest until I come back.
Posted 7/10/2012 2:22 PM (GMT 0)
Thanks heaps for the info Angie. I wish you good luck in your recovery from the colonosopy and I hope your son is okay :)
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