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  1. Sallycatherineharris

    Sallycatherineharris Established Member

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    I seem to have weeks going into months of brain inflammation which is horrendous. My brain feels inflamed which at night particularly seems to go throughout my body, some of the day as well. The feeling is deeply uncomfortable and quite excruciatingly painful with some throbbing, spreads across the whole head with nothing that seems to help apart from ice packs. Sometimes I lightly touch parts of my head and face and get mild mild relief from that touch. My brain seems to hurt and often it transmits through my whole body.

    At night my body seems to become inflamed and swollen and I can’t clench my fist.

    Often I get nausea associated with this and sometimes I feel my lungs start to close up.

    Help
     
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  2. Trish

    Trish Moderator Staff Member

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    @Sallycatherineharris that sounds horrible. I hope you can get some good medical help for sorting out what is going on. :hug:
     
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  3. butter.

    butter. Established Member (Voting Rights)

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    Sounds like like classic ME symptoms to me? At least this is my experience of my ME.
     
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  4. Trish

    Trish Moderator Staff Member

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    I agree some of it sounds like ME, but we should not make assumptions that what someone is describing in a brief post is the same as we experience, or is necessarily part of their ME, especially if the symptoms are new. If in doubt, get it investigated. I have not heard of the body becoming so swollen that you can't clench your fist, and 'lungs closing up' as ME symptoms.
     
  5. wdb

    wdb Senior Member (Voting Rights)

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    I'm curious, do humans actually have the ability to specifically feel the brain hurting or to feel it being inflamed, how does that feel different from various common types of headache ?
     
  6. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Maybe she means by lungs closing up what I had.

    For the swelling, there was a time my calves could become twice as thick overnight. To the touch it did not feel like edema.
     
  7. lansbergen

    lansbergen Senior Member (Voting Rights)

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    It feels like inflamation. I do not have a good discription but when you get it you will know the difference.
     
  8. Trish

    Trish Moderator Staff Member

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    Fair enough, but my point was not to deny that you had symptoms you would describe in the same way, rather to caution us all about making assumptions about whether what someone else experiences is the same as we experience.

    My fear in situations like this is that, by reassuring someone we have had the same, and consider it to be part of ME, we may be misleading them, and they may not bother to go to the doctor about something that may have a completely different cause that needs to be diagnosed and treated.
     
  9. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I agree.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    Wholeheartedly agree. The only responsible medical advice anyone can offer @Sallycatherineharris here is to seek professional medical advice from her doctor. Bearing in mind that - in the context of this thread - advising whether symptoms seem to match those of ME or not, risks coming across as impromptu medical advise.

    As distinct from support and understanding, which we can supply in bucket loads :).
     
  11. Barry

    Barry Senior Member (Voting Rights)

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    I think this is an important point. I don't think it is possible to self diagnose symptom sources to anything like that degree of precision. Far too many confounding factors and red herrings for that. Even qualified medical practitioners, who would have better insights, would potentially still need to await the results of medical investigations.
     
    Last edited: Sep 29, 2019
  12. Trish

    Trish Moderator Staff Member

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    I don't think the brain itself has sensory nerves, so I guess it can't feel pain from within the brain, but there are certainly plenty of sensory nerves around the head - hence horrible headaches, including ones that feel like they are inside the head.
     
  13. Mij

    Mij Senior Member (Voting Rights)

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    @Sallycatherineharris what does your GP make of these symptoms?

    My understanding is that 'brain inflammation' can occur in depression, PD and brain injury, but it doesn't necessarily include discomfort or pain.
     
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  14. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    You should consider going in to see your doctor to get some testing done.

    I have the same problem with not being able to clench my fist some nights and first thing in the morning but that is due to arthritis. If I spend too much time on my computer or doing things like weeding a garden, that's when it seems to be the worst.
     
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  15. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    In depression the inflammation is at the microscopic level and wouldn't be felt as pain or swelling.
     
  16. lansbergen

    lansbergen Senior Member (Voting Rights)

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    The meninges has sensors.
     
  17. Rosie

    Rosie Senior Member (Voting Rights)

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    @Sallycatherineharris I'm sorry your experiencing these awful symptoms. :hug: I had lots of awful, unusual symptoms as well. Please do see your doctor if you haven't already, to be on the safe side because not all of our symptoms could be to do with ME. You could go straight to A&E also.

    @wdb my brain felt bruised and it hurt to think - I had very bad head symptoms at my severe ME onset and for quite a few years after. For the first few months of my severe onset my skull was sore to lay my head on the pillow. I couldn't even keep a diary of my symptoms in those years because there were so many days where the exertion to think was beyond what I could do.

    It was different from the usual kind of headache, paracetamol/Panadol made my head even worse the next day after taking in those earlier years. Now I can take Panadol without next day worsening of head symptoms. So it was a different type head symptom I was getting.
     
    Last edited: Sep 30, 2019
  18. Sallycatherineharris

    Sallycatherineharris Established Member

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    Thank you for the advice and replies. My doctor just asked me to try nortriptyline but nothing is softening or alleviating the brain stuff ... need energy to get back to doctor to tackle it and get help ... if there is any ... trying fish oil supplements ... feeling so horribly scary unwell with this
     
  19. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    You need to give the med time to work. It can take several weeks with antidepressants before you start to notice any improvements.
     
  20. JemPD

    JemPD Senior Member (Voting Rights)

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    I'm sorry you are experiencing these awful symptoms @Sallycatherineharris I do hope the nortriptyline will help, it sounds hellish

    God :eek: that sounds horrific.
     
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