Extreme tiredness

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I understand that tiredness is linked with chiari, and I'm experiencing extreme exhaustion at the moment, which has been progressively getting worse over the past 12 months. At the moment I can maybe only manage to leave the house once a week, and I go swimming once a week following which the day after I am unable to move due to how tired I feel. Does anyone else experience anything similar or should I be persuing another avenue? My GP is sort of brushing me off because my blood tests are coming back normal.

Feeling really demoralised.

Thanks.

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6 Replies

  • Posted

    Even after decompression surgery exhaustion is very common for those of us who live with chiari I think. You might have find better understanding from a neurologist if you can find one who is chiari competent or at least knows a little. I am 18 months

    Post op and have good weeks and bad weeks, but do better if I can keep headaches under control. Headaches just drain my energy very fast. The exhaustion is a lot like that suffered by people who have MS and I have learned a lot of good tips for dealing with Chiari exhaustion by reading the MUltiple sclerosis sites even though I don't have MS. Just because your bloodwork is normal doesn't mean anything!! The chiari exhaustion is very real but you have an invisible illness and I hear "you look great" on days when I feel like hibernating. I hope you feel better soon

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    • Posted

      Thank you for that. I'll have a read of the advice. I'm seeing the neurosurgeon finally on Monday! Also starting a job and I'm so anxiety about how I will cope.

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  • Posted

    I had to take Adderrall which was the only way to stay awake the fatigue was the worst. I had surgery dec 6 and happily off all meds and feeling fantastic. Praying you find help soon. I soooo know the feeling.
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    • Posted

      Your results from surgery are just amazing and I am so happy that you are doing so well and so quickly! What a blessing, and while I know you have a lot on your plate you will be just fine. I was 54 and it took 8 years to get a diagnosis so a lot of damage was already done but I got my vision back so am thrilled about that! I can't ride a bike and get headaches and get tired, but am a better listener with my 12 year old. Your recovery is an inspiration as so many people never hear such success stories!!!!! I hope your next year brings recovery in all areas of your life

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    • Posted

      I know I am so blessed beyond belief for feeling this great. God is good and that's the reason I posted my story. I read so many bad ones prior to surgery and it scared me. I think that they do have many good stories out there but those people are so excited they are feeling better that they are out enjoying life and so they don't come back to post. So I wanted to make sure to come back to update and give hope to someone. Praying for you friend and thank you for the kind words.

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    • Posted

      Thank you. I will mention it to the doctor when I'm seen next. And I'm so glad about the success of your surgery. We don't hear a lot of positive outcomes usually!

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