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Frequent headaches and CFS

Posted , 5 users are following.

KPD
KPD

Do any of you experience frequent headaches? I never experienced these type of headaches until I was diagnosed with CFS. When I get headaches now, they tend to last for a period of anywhere from a few weeks to a month or 2. It sometimes feels like my head is on fire!

I finally had an MRI done a few years ago, and they found a very small (1.3 cm) or (1/2 inch) benign meningioma. The specialist said that it was very unlikely that this could be causing the headaches. It's still scary to me, and I try to get it checked every few years to make sure it isn't growing.

When I have these bouts of headaches (about every few years), nothing seems to help except sleep. They tend to come on when I'm having a flare-up of my other symptoms-extreme fatigue.

I'm curious if any of you have experienced a different type of headache since being diagnosed with CFS and if you have found ways to relieve them. Thanks! KPD

0 likes, 8 replies

8 Replies

  • phil50852
    phil50852 KPD

    Edited

    look into The Perrin Technique...there is more evidence coming out that a congested lymphatic system is one contributory to ME, or CFS. A symptom I have is headaches, especially at the back of my skull. It is seeming more likely this is caused by lymphatic fluid not draining properly from the brain. I've been having lymphatic massages regularly and the headaches are getting less and less, and i'm able to slowly do a little more without major kickback.

    It can make you feel awful at first but over time, does bring improvements. As an example, yesterday i was able to drive my wife and i to a city 40 miles away, go for dinner, go and see a movie, drive home, without major issues today, apart from feeling exhausted...and much of that is due to the very late night and poor sleep, not ME.

    • KPD
      KPD phil50852

      Posted

      Thanks, I'll definitely look into the Perrin Technique. I read a little bit about it several months ago, but couldn't find much info about it, and where I'd go to get it done. Where do you go to get your lymphatic massages? I would imagine the person must be knowledgable about technique. Thanks, KPD

    • phil50852
      phil50852 KPD

      Posted

      Yes, with Perrin being a Brit, and him training people in his method (mainly qualified osteopaths), most are over here in the UK but his website does have a map indicating the names of qualified practitioners. He also has a book detailing the technique - and a few on youtube illustrate the treatments too on video.

      However, searching for lymphatic massage practitioners can help somewhat too, I think. The woman I now see works with an osteopath but is only trained in lymph massage - I've found her knowledge of the lymph system and how to get it/keep it moving very helpful. I've not had that particular headache much at all in the last 2 weeks even after exerting myself, so feels like I've turned a corner.

      Another thing to try, related to this - ice pack on the back of your head/neck. Perrin advocates alternate hot and cold packs but I find if I do get the headache, an icepack on the back of my head/neck area reduces it enormously in half an hour or so.

  • Beverley_01
    Beverley_01 KPD

    Posted

    Hi Kpd,

    Yes, horrid headaches are a symptom for me too. At present I have neck and shoulder pain too. I can have the headache for several days combined with eye and/or ear pain as well as feeling dizzy and well, just really ill!

    Beverley

  • KPD
    KPD

    Posted

    Sorry to hear 😦 It's really hard to deal with. It's bad enough that we are tired all of the time, but when the headaches come on, it really makes this even more unpleasant! Have you found anything to give you some relief?

    • Beverley_01
      Beverley_01 KPD

      Posted

      Hi Kpd,

      To be honest, not really. massage helps my shoulders and neck but, painkillers don't seem to touch it. if I can it's dark room, fluids up and I wear earplugs as this seems to help.

      Yes, it is bad enough being tired all the time!

      I don't regulate temperature very well either so, sometimes feel that doesn't help when I am feeling unwell with things.

  • DlTooley
    DlTooley KPD

    Posted

    Fibromyalgia is a companion condition to ME, for me pain is rare - only when I'm severely fatigued. I manage my condition well enough now that this never happens.

    Dehydration is also something to consider.

    • KPD
      KPD DlTooley

      Edited

      Thanks for your reply. Glad that you are mostly pain free and have been able to manage your fibromyalgia. While many believe that Fibro and CFS are the same, I think they are very different. Luckily, I don't experience pain at the trigger points that many who have Fibro describe. I simply experience profound and debilating fatigue along with brain fog.

      I agree that dehydration can cause headaches. I try to drink plenty of water each and every day 😃 This is a different kind of headache that is accompanied by painful eyes (as one person described), extreme fatigue, and a sense of feeling unwell. It's very frustrating because it seems to come on quickly. Ugh.....KPD

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