CFS / M.E. Symptoms

CFS / ME Symptoms are like…a crazy conundrum of rapidly

changing symptoms that leave it’s victim in a quandary because they never know what is coming or how long it is lasting.

Chronic Fatigue Syndrome and Myalgic Encephalomyelitis – How it affects a life.

Remember when you felt kind of queasy after pulling an all-nighter while studying for finals? Magnify that feeling by 100, and then live with it for 8 years and you MIGHT have an idea of this malady.

It only took 8 years to get a diagnosis. In that 8 years, 2 lives crashing to a standstill, 2 souls ripped into pieces, distracted and distorted by a vicious, temperamental and random attack of extremes. People don’t understand. They offer some obvious and unsolicited advice about general lifestyle management, most of which I’ve been an advocate of for some 40 years. And now we learn there are are medical militants who are lay people who refuse to disclose why they think their way is the only way when there is no science to back their claims.

I can’t help but wonder why people think I haven’t tried all these things they think are so obvious. As we listened to the best Integrative Medicine MD we could find – a man who happens to be the Director of Integrative Medicine at the Mayo, all I could think of is “Cool — he comes from a holistic approach that resonates with our beliefs — good for us.”  Two years later, I know he was spot on right in his approach. It’s working.

To fight this war, we’ve first tried to understand the symptoms better. We also had to understand symptom changes and derivatives. Sometimes it’s a bit of nausea, but usually it is much more. It isn’t just nausea after the bathroom.

It is:

Extreme Nausea
Extreme Brain Fog
Extreme Exhaustion
Weird Sleep Patterns
Zero Energy
Memory Loss
Cognitive Impairment
Balance Issues
Lack of Concentration
Inability to process information
Inability to articulate

All of which will hit at random, unpredictable times and last anywhere from an hour to several days.

Imagine going to the bathroom, finishing your business, and halfway back to your desk, you are overcome with a nausea and dizziness that you just can’t shake. Or you make it back to sit at your computer and 20 minutes later, you realize you can’t process what you are trying to do. You might not even know what it was you were about to do, but you also can’t hold your head up. The rational person would either call a doctor or go back to bed. We are so beyond running to the doctor or hospital and always getting sent home with no new guidance. THIS IS CHRONIC FATIGUE SYNDROME. A daily question of how will the day go. Do you have the energy to get out of bed? Will you last more than an hour? If you do leave the house, how long will you last? Can you make it through the grocery store?

Did you know there is a vast difference between chronically fatigued and chronic fatigue syndrome? Did you know that CFS can go into worse symptoms than are commonly considered ‘just tired all the time’?

Did you know that sometimes a clean diet, fresh air, enough rest and vitamin D doesn’t fix everything?

Here’s some clarity for those who might be a bit confused:
It is not about being overworked. It is not about being a night owl. In fact, it can hit people who lead a balanced lifestyle just as readily as it can hit a type A driven overachiever.

CFS can be confused with many other conditions because the symptoms of CFS are common. The one ongoing thread is that there is no cure known. Some recover. Some don’t. Those who do, don’t really know how. They may have made changes, but they honestly can not pinpoint what it was that helped them recover – whether it was fully or partially.

The following conditions all have symptoms in common with CFS:
Lyme disease
multiple sclerosis

Interestingly, we’ve been saying this has many similarities to both MS and Traumatic Brain Injuries. And lookie there — MS is on this list.

But the cognitive impairment is baffling.
Because Myalgic Encephalomyelitis is really an INFLAMMATION OF THE BRAIN AND SPINAL CHORD, I started remembering little things about TBI’s. When the brain is impaled, it doesn’t function right. When the brain is inflamed, it doesn’t function right either. Correlations!

We now tell people that the impairment is like a combination of MS and TBI — it’s just easier to explain it that way. Plus – it shuts up the zealots who want to tell me I just need to do the stuff we already do. But if I use their brand of snake oil, a miracle cure will come.