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TOPIC: HI

HI 14 years 6 months ago #1

  • sz0h0s
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Hi,

My name is Alex and i have been ill for approximately 2 years now with that i guess you would call chronic fatigue syndrome with overlapping MCS. Although I suspect that CFS often overlaps with MCS.

Anyway i have been though a lot some good and some bad and and now about 50% improved on what i was.

I would like to have discussion with other CFS people but this forum does not seem to be very active.

I am happy to hear from anybody who is recovered :)

Alex
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Re:HI 14 years 6 months ago #2

  • Maff
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Hi Alex!

I'm Maff - site owner and CFS patient ;)

Thanks for posting in the forums. You're right they're not very active at all right now. We previously had around 300 members and a lot of activity but I redesigned the whole site last summer and was unable to transfer the old forums over :(

The site now receives around 1500 visitors every day though so things will quickly pick up if a few more people introduce themselves as you have!

I'll try to give you a short version of my story. I was diagnosed with chronic fatigue syndrome at the age of 11 (I am now 28). Managed to get through high school attending 3/4 days per week and then go to University but had to drop out after one semester. At that stage I became very sick and developed multiple chemical sensitivity.

So for the past 8 years I've been researching, visiting various doctors and complementary medicine therapists, having a multitude of tests etc.

I basically found out the main contributors to my illness and things that could help me through a lot of trial and error. I am now free from MCS (touch wood!) but still struggling with CFS a fair bit.

Despite that I set up this web site a few years ago and last september started studying for a bachelor's degree in nutritional therapy. I hope to pass on what I've learned through experience to others through the web site, working as a nutritional therapist and writing articles/books.

I think it's really important that we don't simply fall into a routine of doing absolutely nothing. I spent a few years in that stage but as soon as I managed to make an effort towards helping myself things started going better for me. It really helps your mental state! The first thing to do is learn as much as you can about your illness and I hope this web site will help people with that. There are also loads of other great sites out there.

Thanks again Alex for making the effort to post here. I look forward to hearing more from you :)
If you are going through hell, keep going - Winston Churchill
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Re:HI 14 years 4 months ago #3

Hi,

one of my best friends has CFS, so I can sympathise with the struggle you have. She has been to so many different kinds of doctors over the years to try and find a cause/cure, but there don't really seem to be any answers! someone told me that they think it is mainly a psychological illness - what does anyone think about this? I'm not sure it can be true!

Anna
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Re:HI 14 years 4 months ago #4

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Hi Anna,

Good to have you with us :)

Sorry to hear that your friend is suffering from CFS/ME. It is a terrible thing to have to deal with in every way.

When I was first diagnosed in 1991 there was this idea amongst many doctors and people in general that CFS/ME was a psychological illness. This has been completely disproved since then but the idea still lingers unfortunately!

CFS/ME is known to produce abnormalities in many important systems in the body including the endocrine system (hormones), nervous system, and immune system. There is also a lot of evidence that patients are unable to to produce energy and detoxify toxins efficiently. As you can imagine all of this will leave anyone extremely tired and down and depression is often a result. Many doctors would rather believe CFS/ME patients are simply suffering from depression than admit they don't really know what is wrong or have any way to help.

Please point your friend in this direction I'm sure she/he will find a lot of interest and will hopefully feel more positive as there is actually a lot that can be done to help if you know where to look and who to ask.

Take care,

Maff
If you are going through hell, keep going - Winston Churchill
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Re:HI 13 years 6 months ago #5

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Hi All!

I developed CF/MCS at the age of 16, I am now 26 and I would consider myself recovered. :) It is such a blessing to be able to say that! I still am very careful about my environment and still find that I have to avoid going into certain places. Still eat organic and use the purest cleaners and shampoo. Yet, this is my lifestyle now and so I do not even think about it really. Seems like the way it should be. :)

Yes I took herbs, vitamins, and tried other holistic therapies. Yet, one of the main things that helped me with the fatigue was space clearing and clutter clearing. Our spaces hold energetic imprints of ourselves, previous owners, and friends and family members that have been in our home. Ever walked into a room after a fight and felt the tension? Having CF I was very sensitive to these unseen energies and having my space cleared was a tremendous help. Also, something that I did was slowly clearing everything out of my home that I did not love and that I did not use. That helped a lot as well. Only surrounding yourself with what is pure and beautiful, whether it is items in your home or even relationships is very important for energy levels.

And always focusing on what you can do, not the things that you cant. CF I have found for many people has been a blessing to slow down and to cherish and see the important in life. It has been a way for many of us to find ourselves and find strength. Kinda hard to see when you are really feeling it though.

I wish you Alex the best and Anna I really feel for your friend. One of the hardest parts for me was everyone thinking that it is a psychological illness. Those of us that have it though, know that this is not the case. That is one great thing about this site, is that we know we are not alone. :)
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