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Bren's Story, ME/ Chronic Fatigue Syndrome Sufferer, USA

For me, living with ME/ Chronic Fatigue Syndrome is like trying to schedule an appointment without your calendar in front of you:

You never know what you will feel like on a given day or if you have slept.

 

In the past four years I have travelled to China several times a year for business.

Shortly after my last trip to China, I started having a strange tight feeling in my back. It was right around my bra strap line on my spine. Everytime I would drive or sit in a chair it would feel like I was leaning back on a large button. It did not hurt. It was just a little annoying.

At the time I was working a lot of hours and not sleeping much and over the next month it started to hurt and throb. I then started having cramping in my back from that spot to my shoulders.

Two months passed and my back had become unbearable. The glands in the left side of my neck hurt and burned. So that started the endless rounds of trips to the doctors office and numerous tests and trips to several specialists.

During that time I saw an Infectious Disease doctor that determined I had the viruses. He then told me that what I am suffering from were not the viruses but more than likely a disease that is triggered from it.

So that was the first three months of being ill, through which I slept most of. I remember little from all the pain medications they had me on.

From that point I saw several more doctors and specialists and started the wild frustrating journey to get a diagnosis. After six months I was given a diagnosis of Post Viral Syndrome and was told that it will go away in 9-12 months. If it does not it could be Chronic Fatigue Syndrome or Fibromyalgia.

I was surprised that, in the end, it felt like I was on my own for my treatment. The doctor might as well said, 'Yep. You're sick but it will pass in time, now deal with it!'

The only thing they really suggested was to start going off some of the pain medications. So I did and it was no fun!!!!

After that I decided to go off everything but my anti-depressants. I felt like all the drugs were masking my Chronic Fatigue Syndrome symptoms and the sooner I got off them I could start to deal with the real symptoms as they occur.

Right now in my gut I am suspecting I have Fibromyalgia but I get the feeling my doctor is a little skeptical and unco-operative. So I am going to see a Reumetologist to get a second opinion.

Wow. Looking at my description of this timeline it looks like such a short period of time but living it seems like I lost a year.

Now it has been 10 months and my body hurts everywhere. The fatigue is there and I still feel weak. But...

I am definitely feeling better than before due to acupunture, herbs and working on pacing but no where close to what I was before. I consider being up and mobile around the house - a huge step after feeling like you have been in a coma in bed for 8 months.

My one piece of advice to other ME/ Chronic Fatigue Syndrome sufferers is to look at every avenue that may help you feel better. Some may work for you even if it hasn't for others.


 

Thank you Bren, for sharing your story with us.

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