CFS started with stiff neck and severe headache

Discussion in 'Fibromyalgia Main Forum' started by CFS23975Bob, Dec 26, 2010.

  1. CFS23975Bob

    CFS23975Bob New Member

    When my cfs, or whatever term you want to give it, started; I got severe brain fog and a severe stiff neck with headache. I had never had anything like this feeling before in both the headache and stiff neck. Then shortly I got an enlarged spleen and liver, flu symptoms, etc... Was diagnosed with Mono however the symptoms never went away and here I am years later with the same stiff neck and headache, fatigue, and all other initial symptoms. I was put on Valcyte and I made my stiff neck and headache worse, which I thought was a good sign; however, I'm not improving and my doctor doesn't know why. Just wanted to know if anyone has had these types of symptoms. (Specifically the stiff neck and severe daily headache that will never go away)
  2. karynwolfe

    karynwolfe New Member

    I'd have to agree with caledonia. I have M.E. but when I got Lyme Disease a few years ago is when I started getting the types of symptoms you describe. M.E. gives you unusual types of headaches but after getting Lyme everything in that area (headaches, facial nerve inflammation, neck pain...excrutiating pain!) became a lot more frequent and constant.

    Even if it's not the entirety of your problems, I would look into it being a contributing factor. Unfortunately there's a lot of controversy about Lyme so it might be a fight trying ot get a doctor who understands. It's worth everything, though, because untreated Lyme is progressive and fatal in those with dysfunctional immune systems (sometimes even in those without).

    If you are not improving at all, look for other avenues. =) Hopefully Nanie will come around here and gives you more resources as far as Lyme symptoms, goodness knows she's better at explaining it than many of us!

    So sorry for your suffering and I hope you find the root of your intense pain and illness (((hugs)))

  3. CFS23975Bob

    CFS23975Bob New Member

    Thank you so much for the responses guys. Yes, I am considering Lyme as I have always thought it was what I had. However, when I saw a doctor for CFS he convinced me that it was HV6 and Valcyte would help. And it could very well be HV6 and Lyme, who knows. Stiff neck and severe headache are symptoms of lyme, just wanted to know if anyone has had those with CFS and gotten better on antivirals. But I am certainly aware of LD at this point in the game, will see what happens.