Wednesday, December 16, 2009

My background...

Depending on which Dr you ask I have either CFIDS, ME, Fibromyalgia, and one suspected Atypical MS

When it began, it started as though I had a terrible virus. No one could tell me what it was though. Basic blood tests were fairly normal. Blood counts were low here and there and blood pressure was low. I felt dizzy alot. I passed out a few times. It felt as though I didnt have enough blood in my body. I was hyper sensitive to light, sound and overall stimulation. I became so weak I couldnt walk unassisted. This began a battle with a severe debilitating fatigue that I still battle.

I had a fever for a while but its low (100 or so). I had swollen lymph nodes and fairly severe gastric distress. Everything i ate or drank either came back up or immediately passed through.

My hands became dumb. Numbness in my fingers, and i became clumsy at times unable to grasp and manipulate objects as one should. That led to one dr suspecting and MS connection, but that eventually subsided now i have only minor neurological complaints.
This was a terrible virus/sickness that I never really recovered from.

How i feel now-

I have to make sure i get my sleep. If my sleep is disturbed for any reason I am very fatigued and sore the next day. The best way i can describe it is that it feels like a hangover. When I rest completely, I feel as though my systems are stabilising and recuperating. My energy level rises, the fatigue lifts, the muscle stiffness and pain abates and I feel stronger, more alert.

As soon as I start doing some physical exercise/activity, my muscles have no power- I feel as if the muscle stiffness I would experience after running a six hour marathon comes on in minutes. I feel burning in my muscles. I get nauseous, I feel flooded with adrenaline. I get shaky, weak, sometimes a crushing headache. I can become very light and sound sensitive. Rapid or flashing lights trigger headache and also nausea.Later when I rest again, I feel poisoned, like having the flu or a hangover. My muscles now ache and hurt. I am left with a feeling of groginess and malaise that lasts for days. I experience this to a lesser extent with mental activity. The more I work, the less able I am to concentrate, the more I struggle to think.

I am very sensitive toxins. Sugar, chemicals, perfumes, smoke, alcohol and certain foods can trigger an onset of symptoms. Also I am very sensitive to hot and cold.

I have had bowel problems since the onset of symptoms 2 years ago. It has been diagnosed as IBS or Leaky Gut. I am take lots of probiotics and watch my diet very closely and this has helped some. I still have persistent diarrhea. Pain, tenesmus, and blood with stool only happens once or twice a week now, when it used to be daily. Tested negative for Crohn's.

I have had tests show low for magnesium, potassium, thyroid, testosterone, vitamin b12, vitamin d. HIV Negative, T-cell count was 350. They said that it was low and probably caused by a virus, not to worry.

I am currently taking no medications. Doctors gave me Lyrica, pristiq, savella, celexa, flexeril, rozerem, ultram. Nothing worked and many in fact made my symptoms worse. I am currently only eating a whole foods diet and taking supplements and this has been the only thing that has helped me. I take lots of amino acids- glutamine,carnitine, etc. and they do help.


  1. Hey James. You describe what it is like to have ME/CFS very well.

    Sounds like you have been through a rough time. Have you been testes for yeast in the bowels? I had awful stomach problems. When I began to treat the yeast along with vitamin and mineral IV's things started to improve a bit.

    Also you could try taking some grapefruit seed extract drops every day for possible bad bacteria in your gut.

    Drop me an email if you want to know more about things you can do yourself to fight possible yeast infection.

  2. This sounds so so familiar. Just know that you're not alone.

  3. I can relate to your background and symptoms, although thankfully mine are more mild. I've just started a new treatment programme based on Amygdala Retraining, which seems to be working. Early days yet, but you can follow my progress on my blog at:

    Cheers, Graham