I don’t have a Headache…MY BRAIN HURTS…..

understanding-brain-inflammation-with-fibromyalgia_article_main
Now, ……. I KNOW the difference between a headache, a cluster headache and a migraine, because I experience them regularly.  But the pain that has recently started to drive me up the wall, especially at night, as soon as my head hits the pillow…is unbearable.
The ONLY way I can describe it is My brain Hurts.
It is NOTHING like any of the above mentioned….it really feels like my skull is crushing my brain….When I try to sleep Ever single circuit in my brain kicks into over drive……and by this I mean…..It’s like watching 100’s of small screens on one big tv screen.  Everyone a different ‘drama’,  a different channel, with the voices and noises, all going at once….it drives me nuts and I cannot switch it off…..and the pressure on my head is unbearable…is my brain swelling???
I SERIOUSLY NEED SLEEP………………………………..
I even went and bought a bottle of night nurse to see if that would work…….no not really, getting about 4hrs dead sleep and the rest, well non-existent really.
Now, I have lived with a fibro gremlin for many years, and this is a first for me.
People and most doctors really don’t understand this condition. I bet many, like myself, have been labeled as having Hypochondriasis or hypochondria (which is a condition in which a person is excessively and unduly worried about having a serious illness.)
Well, I can honestly say it is very far from that…….
I will try to explain what I have to LIVE with EVERY single day – 24/7 – 365 days a year.
My Attention span is that of a gold-fish and my memory even worse.
Some days I have ‘Good’ days, which means, besides the normal daily  pains and cramps, and muscle spasms, etc – it is a day Free from migraine’s,  joint swelling, nausea and mood swings.
‘Normal’ days are : EVERY single part of my body aches. Absolute chronic pain in and on every part of my body.  My neck and shoulders are permanently ‘burning’. My skin tingles all the time and sometimes it feels like it’s ‘on fire’. (Another way to describe the burning sensation is like when you pull the skin off a new blister…that raw tenderness, is the only way to explain how my skin feels)
It can get so bad that I have to remove my clothes and just wear a very soft gown.
My ears  are always ringing and are HYPER sensitive to loud noises, especially high pitch ones.
My teeth ache, my jaw throbs.
My Bones ache from the inside out…that probably doesn’t make sense to anyone …but they do…..
I cannot look at bright lights – reflections of light – high beam lights or flashing lights – as this triggers migraines.
My body sometimes has uncontrollable shakes.
I don’t bother with hair dryers etc, it takes hours because of the pain in my arms and shoulders, just holding the objects for a couple of mins is absolute agony.
My body cannot control its own temperature. It could be 30 degrees outside and I’ll be shivering my tits off. It could be -5 and I’m sweating buckets….
It Is relentless.
By the time I have got my arse out of bed, had a wash etc and walked out the door…I have not only re-washed, but changed my top 3 times and this is a daily occurence.
Vertigo is another problem, especially coming down a flight of steps….I have ended up at the bottom of stairs on a couple of occasions, Without the help of my feet…….
Making coherent sentences ..yeah right, everything comes out gobbeldy gook and back to front. Brain quicker than tongue ……Not a good thing…I muddle words ….fridge for oven, microwave for tumble dryer…Thingymabob…..for….Oh you know what I mean…..
Thank F**K Gary understands me.
The List of things goes on, but we dont have all day to read a blog on that……
Then I have the ‘BAD’ days…days I can hardly get out of bed. Days of ALL the above with the added extra’s  of emotional stress filled with tears, brought on by the most stupidest of things…….Migraine’s, that if not caught before the kaleidoscope kicks in, the bed has my company for at least 72hrs, not to mention the vomiting for hrs aswell. Days I just want to die….seriously it is no joke…
The day I wake up after No sleep with No pain is the day I will think I’ve died…..
Then,
OH Yes, there is another ‘DAY’…. The day you have a major ‘FLARE UP’ – AND it goes like this…
Expect the unexpected………Sometimes there is no cause….There is NEVER a time that you know ‘this gremlin is going to be an absolute shyt today’…..trust me.
We took 2 weeks off work over the festive season….I managed to get dressed and walk out the front door TWICE…….
You never know when it’s going to strike, but, I am beginning to read the signs..
When I get up in the morning, feeling emotional, I know it ‘Could’ be one of those days…
I forewarn Gary by just saying, normally through tears, Babe I think it is going to be one of those days…….Big Hug…..NO ARGUMENTS OVER SHIT….He USUALLY gets me through them, most of the times…..
My flare up’s last up to 4 days, a bugger when your self-employed….. It is exhausting. Once the flare up has subsided, I am left totally exhausted…..It is like waking up with an EPIC hangover……Brain fog and severe fatigue for the rest of the week, if your lucky, the fatigue could go on for up to  2 weeks. It’s like jet lag…….with added pain…..
I stopped ALL prescribed medication in  Dec 2014. It felt like I was always Off my tree, (the medications played havoc with my body and head),  I am managing my condition with natural remedies which, for me, has been the right decision. Yet I force myself to work through the day…..and suffer the consequences at night…
No matter the medication, herbal or prescribed, the pain and added all sorts NEVER goes away. The pain is Never ending…..My body goes from capable to incapacitated in the blink of an eye.
Experiencing a ‘Flare up’… is not pleasant. Just being in constant pain wears a person out, but a flare up, which I have no control over, drains my battery… to death. AND THERE ARE NO REAL WARNING SIGNS..
My tolerance for anyone or anything is low, my patience very thin, my emotional status – near on’ locking me up somewhere safe’…….
I don’t often cry. One has to really hurt my feelings – basically break my heart or make me really angry – red mist angry – for the tears to appear….BUT a flare up ……. tears don’t stop…..flare up’s cause ‘over emotion’ over everything.
Sometimes all one can do is just breath, and even that hurts.
There are weekends that I don’t get out of bed and if it wasn’t for being self-employed, those weekends could quite possibly turn into weeks…..(I wish) …
With a ‘flare up’, I have NO energy whatsoever…….the sheer thought of existing is enough to put me ‘to sleep’ for good.
I don’t eat, no appetite, whatsoever. Gary will cook a meal, I will ‘attempt’ to eat it, but it ends up in the fridge for ‘when I fancy it’…..the dog normally ends up with a bonus meal…
I go through a stage of thirst, yet drink up to 8 pints of water in a 12 hr period…I wake up in the morning with 3 empty pint glasses on the side table…..cant even remember going to the kitchen to fetch them….It is total madness…

I try to rationalize my pain…It never quite works. I try to validate myself, even though I shouldn’t need validating. I list the things I did the day before,  to determine if  I did anything or ate anything that caused the flare up………………….To no avail….

On a bad flare up day, I am antisocial at best. And it isn’t anything you or anyone said or did. It is 100 %  me.

I am tired, in pain I can do nothing about. I am  frustrated . It isn’t your fault and I am sorry if I seem an absolute twat at times. I promise you did nothing. My body did.

 

I JUST WISH THERE WAS MORE RESEARCH AND ACKNOWLEDGMENT OF THIS CONDITION…..

I googled …Fibromyalgia..my brain hurts ……. and this came up….so in theory I am not going mad …my brain is inflamed and pressing on my skull…

https://ki.se/en/news/people-with-fibromyalgia-have-inflammation-of-the-brain

https://www.findatopdoc.com/Healthy-Living/brain-inflammation-with-fibromyalgia

More Info on Fibromyalgia……….worth a read..

https://www.fmcpaware.org/fibrofog/cognitive-function-a-fibromyalgia

https://www.webmd.com/fibromyalgia/guide/fibromyalgia-pain#1

 

 

 

 

 

 

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3 Comments Add yours

  1. Susi Bocks says:

    I hurt for you reading the description of what you must endure. I wanted to pass along something I watched today, coincidentally. https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?utm_campaign=tedspread–a&utm_medium=referral&utm_source=tedcomshare&fbclid=IwAR1Bm_-FMSpVB5CHmM3tl89bNCUqIOGA1pN3sMhmGwNXZOo_AQkzgojT1sc#t-182439

    The symptoms you mentioned eerily lined up with what you described in your post but what she discussed was for a different diagnosis. I hope that you can find relief from the pain you are enduring in your life.

    Liked by 1 person

    1. Atgofion says:

      Thank you for the above. And thanks for stopping by my blog, much appreciatted.. Have a really good day.

      Liked by 1 person

      1. Susi Bocks says:

        You’re welcome! And thank you. I wish you the same. 🙂

        Liked by 1 person

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