Opinions from people diagnosed with CFS
During the summer of 2008 I got sick with what I thought was the flu. I'm (was not), a person who went to the doctor very often. I didn't go, but simply toughed out my illness. I wish I hadn't as I haven't felt the same since. I would suffer from fatigue but it was fairly manageable.
August 2009 I began having dizzy spells. I would lose balance frequently. I had arrhythmia along with wretched fatigue and body aches and horrible headaches. I ended up quitting my job in February of 2010 because working was too much. I needed rest.
I began going to the doctor who ran lots of tests. They all came back normal and so did my MRI. She sent me to a Rhuematologist who suggested I might have fibromyalgia. Upon running a vitamin D test my levels were found to be 19. I was given 50,000 units of D3 once a week for six weeks. My D levels didn't raise, in fact they dropped to 17! My doctor said nothing my fibromyalgia possible diagnosis was dropped and I was told I had vitamin D deficiency.
After the 50,000u a week I took 5000u a day. My vitamin D levels rose to 26 and my doctor told me she had no idea what my problem was and told me I should go see a psychiatrist. I was still suffering from fatigue etc etc
She had referred me to a neurologist who began treating me for my headaches, but really hasn't been much help other than that.
I go through periods of extreme fatigue, dizziness, joint pain, mental dullness, confussion, etc etc
I decided to try and find a new doctor and went through two before settling on the one I have now. He did another D test and despite the fact that I take 5000u of D3 a day and have been spending a great deal of time in the sun, my vitamin D levels are back down to 19. All of my other tests are perfectly normal.
Does anyone here have problems with vitamin D and still have a diagnosis of CFS? It seems to me that though I feel worse when my levels are lower I still feel wretched when my levels are closer to normal.
I feel so frustrated and upset and tired and tired and tired and tired. I can't take this anymore. CFS seems to be the only thing that fits though my new Dr says he hates the label and wants to find a reason for the fatigue. I know when I see him again he's going to say its just the vitamin D and send me on my way with another 50,000u prescription and likely a referral to a psych..
Can anyone give me any advice?