Do you ever feel that no one understa... - Fibromyalgia Acti...

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Do you ever feel that no one understands?

7 Replies

Yes, I have Fibro. Yes, I have migraines. Yes, I have Tinnitus. I've had all of this for years and years and I can't but help mention it from time to time as sometimes it just all gets too much! But do you ever feel that no one understands?

I do! I feel that they think I've always got something wrong with me, which I do I suppose but I can't help it! Fibro makes it that when I'm working (sitting at a desk all day) I can't sit still, when I do move, it hurts and I'm really stiff and can't help but walk funny! I often have migraines and headaches, most days actually but I still somehow manage to make it into work, most of the time. My tinnitus is now affecting my hearing, which I'm very aware of, so I don't get involved as much in group conversations, as I can't always hear. I've now become a bit of a social outcast but what else can I do? I've trying all the medication but nothing really seems to help.

In a bizarre way, the pandemic has helped me as I've been working from home the whole time and it's become a lot easier for me in relation to work. However, the pain of fibro, the not being able to sleep due to the relentless ringing in my ears and the constant headaches are no fun! Most of all my husband, family & friends don't really get it :(

Sorry for the rant but I feel like you lot would probably understand?

Read more about...
7 Replies

"Those that matter don’t mind

Those that mind don’t matter"

I love that and going to remember it. Thanks 😊

MALC19 profile image
MALC19

Yes we do totally get you.

People don't understand what pain and restless sleep we go through.

I have a picture that pain clinic gave me that shows the different points of pain on somebody's back that shows what all fibro sufferers are dealing with and it is not pretty!!

If only we could show it to every sceptic and tell them that this is only the pain aspect of fibro without all the other numerous issues then maybe people would understand a little more!!

You rant to us as much as you like because we do all understand 😘😊

5080F profile image
5080F

Hi Abbey20. Totally understand!! Yes there is only so much you can moan as It does sound like there is always something hurting or another ailment you have but that's bloody fibromyalgia for you! That's why on here it's so good you can vent your frustration and feel better for it afterwards! Take care🤗

ALKT profile image
ALKT

restless legs can be a symptom of low iron levels . iron fumerate tablets might help you with that .ask your gp for the relative blood test just to be sure

I will look into that thank you as at the moment nothing seems to work. Ibuprofen, paracetamol, aspirin, codeine etc they are just like sweets to me, don't even affect me at all. I take so many tablets I'm sure I rattle when I walk. I'm on topiramate and candesartan for my migraines daily and take rizatriptan when I do get a bad migraine. I'm on amitriptyline but they only work for a little while then I need to increase the dose. I take vit D and calcium as my levels were so low but my nails and hair are so brittle, I don't even want to think about what my bones are like! I've tried meditation, acupuncture, chiropractors, just about everything so I'm willing to try anything especially when it's recommended.

It's just not fair is it! Why do we have to have this awful condition and why can't they find something to help us?

Hey ho!! Just keep swimming...…… :)

Oh Abbey!

YES. YES and thrice YES!

I get up and go to work - at a PRU (Pupil Referral Unit - our students, all secondary, have been excluded from school, largely due to behaviour issues!). It is very challenging and i love it. What I don’t love is the ignorance of some of my colleagues. Questioning my motives when i say i am unable to do something. Confusing this with me being lazy!

I also have another health condition to contend with which exacerbates the fibro: Ulcerative Colitis! And my new manager flippantly says things about me having to be near a toilet all day. Or looks at me in a questioning way as to why i cannot P.I. (physically intervene) with our vulnerable young students (cos they do not come willingly when you physically want to remove them!) imagine the lash back i would get for being off work for however long because i was injured from a P.I!!!!! I would never hear the end of it - the back stabbing all because they are ignorant!

I’m considering asking my head teacher if i can do a presentation on my medical issues to inform these people that i am flippin awesome to come to work there, even when i haven’t had a good night’s sleep. Even though i’m in a lot of pain. Even though i have brain fog and often feel embarrassed cos i can’t find my words! Even though... even though..!

I get you Abbey! You are awesome to get up and go to work ‘even though!...’

CB 🤗 xx

in reply to NeonNailsKnitting

Very well put, I can relate to that and I think so can many others! xx

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