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.
