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Headaches - are they related to CFS or not?

Posted , 6 users are following.

amycathy
amycathy

Recently I’ve been getting a horrible headache. It’s a horizontal shooting pain above my ear and at the back if my head. I’ve noticed that it seems to occur when I’m particularly drained or tired but I have no idea if it’s CFS related or not.

Just over a month ago I was taken into hospital with this headache. The pain was awful, like nothing I’ve ever experienced. I had all sorts of strange and scary things along side that headache. As it got worse, my left arm and right leg cramped up and I had no control over them; couldn’t move or stretch them out and it was very painful. I lost my speech; I knew what I wanted to say I just physically couldn’t get the words out... I just ended up almost grunting or making a strange sound. Last of all the whole of the right side of my face was numb, I couldn’t open my eye and it was the worst feeling.

I spent ages in A&E while the doctors tried to figure out what was wrong. Everything was fine: blood pressure, heart rate, blood sugar etc. I had a CT scan and everything was fine, had no rash or temperature so they ruled out meningitis. They just couldn’t find anything wrong. They told me I had a small bleed on my brain that wouldn’t show up on the CT scan in the end; but I’m still not entirely convinced they know.

The reason why I’m writing this morning is because I’ve started to get this headache, and it’s worried me a little. I was at work yesterday and struggled to sleep last night. Only just woken up this morning and I feel so awful.

I just wanted to know if anyone else had experienced the same sort of thing or heard of it. Maybe it isn’t CFS related but just some responses would be nice.

0 likes, 8 replies

8 Replies

  • jimmy_48419
    jimmy_48419 amycathy

    Posted

    Hiya

    I've had cfs for a year and only for the last few weeks I've been getting headaches. I've looked online and it's a common symptom of this bloody disease. II've also got tinnitus so I'm booked in for a mri scan just to be on the safe side. 

    Your mind does wander when you get new symptoms though. 

    Hope you're feeling better soon x

  • Scoobydoo65
    Scoobydoo65 amycathy

    Posted

    Hiya, Have they referred you for an MRI? or to a neuro specialist? xx
    • amycathy
      amycathy Scoobydoo65

      Posted

      They have now yes.. hopefully that might give me some answers.  Thanks for your reply smile
  • jackie00198
    jackie00198 amycathy

    Posted

    Severe headaches can be related to ME/CFS. I think if you Google the illness you will find headaches as a possible symptom. Also, you seem to have ruled out the more worrisome possibilities with the CT scan and other tests. Here's what I found on one website: "In fact, headaches of a new type, pattern, or severity" is one of the diagnostic criteria for ME/CFS."
  • JennyWren8
    JennyWren8 amycathy

    Posted

    It could be the ME. but any new and severe symptoms really need to be checked with a GP.  I agree with flowerpotlady a visit to a neurologist and MRI would be best because of your other symptoms.  If you're still having problems and they suspected a bleed on the brain, I would defo get a confirmation and further investgation if you can.  At least have a once over with your GP.  

    When I had a head injury, my GP checked me over quite thouroughly as I was having problems still 3 months later and she told me I had concussion syndrome, probably as I already had ME, but the headaches were much worse and made all my ME neuro symptions were a lot worse too.  The GP said it's becasue the brain is affected in ME.  I'd never had a GP say that to me before, so it took me by surprise - occasionally you can get a GP who's read up on stuff!  It took a full 6 months for the headaches to ease, but it was good to know what it was.  It really helps to get checked out. smile

  • olivia3636
    olivia3636 amycathy

    Posted

    Hi Amy, while I was getting a Myers cocktail today, I talked to a girl(who has CFS) and said she gets a lot of pain there too. She said that she was tested for limes disease for years and it always came up negative. Apparently there's another test you can take for Limes. Hers came up negative because it was the regular test that looks for antibodies of limes. Instead she got another test that somehow looks for the activity of limes disease, or something along those lines. It's just a blood test, so maybe it's worth checking out. I hope the headaches go away. I had cluster headaches(or something like it) ever day for a month. It was very debilitating. So, not the same kind of headache, but I undetstand your pain to a certain degree. I you get better soon. 
    • amycathy
      amycathy olivia3636

      Posted

      Hey Olivia,  thanks for your response.. I was in hoSpital again with the same thing on Tuesday, they did all sorts of tests with my blood and physical observations and they still don't know what's wrong... the doctor said that he knows a lot about what it's not. They'be basically just told me to monitor it and that it could be a severe migraine rolleyes 

      Thanks again smile

    • Scoobydoo65
      Scoobydoo65 amycathy

      Posted

      Hi Amy, forgive me for butting in on your conversation. My sister had this same thing happen to her, with Drs saying they didnt know what was wrong with her (different health problem but same situation). So, she went private. It turned out she had a tumour. (not saying you have but the same situation happened here). Are you in the UK? These Drs who 'dont know' scare me - really hoping you can get appropriate care soon. Dont take 'we dont know' for an answer, its just not good enough. xx
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