Fibro/CFS - premature aging, can't cope. Watch

Anonymous #1
#1
Report Thread starter 7 years ago
#1
I have fibromyalgia, or at the least all of the symptoms (as I know its a disputed condition). Have suffered for over three years now. I feel like a pensioner stuck in a 21 year old's body. My joints have given up, my muscles are being eaten away, I feel like gravity has doubled. Most people say I look very sickly, and when I look in the mirror I see this, I look like a terminally ill person.

But of course I'm "not", every blood test, scan etc is clear, so I'm perfectly "healthy". I'm on a protein, antioxidant, iron and vitamin rich diet with as perfect a balance of good fats and carbs as possible. I exercise at least three times a week (cardio +yoga), I meditate, have counselling, sleep 8 hours a night, I take my medication and drink plenty. I feel like I should be superhealthy, but despite all this, I've had zero improvement.

Most people my age live off takeaways and booze, getting 4hours sleep a night and still look and feel healthier than me. To say I suffer from envy is an understatement.

I just can't face getting "genuinely" older, and experiencing further decline on top of this "illness". I can't imagine life past 30yrs, when I'm out of my "prime", and all in all I think my only option is to end it if it gets worse.

I just don't know what to do anymore, feel like I've exhausted all avenues. What should I tell my doctors? They just see that I still have a pulse, smile and send me out the door.
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Ice_Queen
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#2
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Tell them what you just told us :dontknow:
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samueljames
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Sweetie, as someone who has been struggling with fibromyalgia for the same time as you now, I UNDERSTAND. I know that doesnt make it any better... but i promise you... i feel exactly the same.
Something that ive started to do more recently is look at things a bit differently..
For example:
I used to (quite rightly) be green with envy that my mates could go out on the lash and get absolutely trollied. and I couldnt.
Now I attend for one drink and return home. yeah... its not the greatest but i can say "i achieved something in doing that.... im not out of the group"

Its an ongoing battle.. and i pray one day there is a cure.
I have a blog which you're welcome to read: fibrowhat.tumblr.com
and im on twitter - @slooong. there are so many great tweeters out there with fibro that give me help which i can recommend.
Id seriously consider changing your doctor to someone who understands. For the first 18 months i had a doctor whom did exactly as you stated.. um - you've got a pulse and ur blood test are fine.. whats your issue? THERE ARE doctors out there who are great.
Dont give up my lovely. I know why you feel that, and Hell.. i've felt like it too. but ending things is a permanent reslution to something that is tempory (although a chronic) problem.
Try and get refered to: http://www.fmsclinic.co.uk/
Give me a shout.. sometimes it helps to talk to someone in the same boat.

BIGGEST CUDDLE IN THE WORLD.

xxxxx
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samueljames
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So... I just wrote a long reply... and it vanished... FUMING!!!
haha

Anyway sweety...
I understand what you're going through 100% because I too have fibromyalgia. Its tough, its cruddy and do you know what? Its totally okay to feel how you're feeling.
It sounds to me as though you are in the same prediciament i was 6 months ago. My doctor was (unknown to me at the time) useless at dealing with fibro, and randomly my doctor went away on holiday so I had to see someone else... who was like a breath of fresh air. there was understanding and support and for the first time ever... i didnt feel i was wasting someones time. Do you know what i mean?

I have a blog - fibrowhat.tumblr.com.
I'm also on twitter @slooong
im here and i care.. even if you just want to moan and cry

there is a great NHS hospital in london that deals with fibromyalgia and can make some minor edits and changes to medication that can make a huge difference. (www.fmsclinic.co.uk)

If you haven't already CBT training can make a huge difference. Keep harrasing your doctor until you get it. You are entitled to it.

Rememeber the more you dwell on how ill we are (and you are quite within your rights to do so) you run the risk of bringing yourself down. These days rather than looking at what im not able to do... i focus on the achievements ive made that day that i wouldnt have been able to do say 6 months ago. Yesterday I was able to do a full day at work. And for me? That was a huge step.


Remember ending it all, whilst at the time you feel it might be justified, its a permement end to a tempory, although chronic problem.

I beg of you.... please get in contact, there is help out there for you.. and i care. i promise you... I REALLY CARE ABOUT YOU. Your a fellow spoonie (google spoon theory) and we gotta stick together.

`It gets better' may be overused..but hun, its true


IM HERE - WORLDS HUGEST HUG.


Sam
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samueljames
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#5
Report 7 years ago
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So... I just wrote a long reply... and it vanished... FUMING!!!
haha

Anyway sweety...
I understand what you're going through 100% because I too have fibromyalgia. Its tough, its cruddy and do you know what? Its totally okay to feel how you're feeling.
It sounds to me as though you are in the same prediciament i was 6 months ago. My doctor was (unknown to me at the time) useless at dealing with fibro, and randomly my doctor went away on holiday so I had to see someone else... who was like a breath of fresh air. there was understanding and support and for the first time ever... i didnt feel i was wasting someones time. Do you know what i mean?

I have a blog - fibrowhat.tumblr.com.
I'm also on twitter @slooong
im here and i care.. even if you just want to moan and cry

there is a great NHS hospital in london that deals with fibromyalgia and can make some minor edits and changes to medication that can make a huge difference. (www.fmsclinic.co.uk)

If you haven't already CBT training can make a huge difference. Keep harrasing your doctor until you get it. You are entitled to it.

Rememeber the more you dwell on how ill we are (and you are quite within your rights to do so) you run the risk of bringing yourself down. These days rather than looking at what im not able to do... i focus on the achievements ive made that day that i wouldnt have been able to do say 6 months ago. Yesterday I was able to do a full day at work. And for me? That was a huge step.


Remember ending it all, whilst at the time you feel it might be justified, its a permement end to a tempory, although chronic problem.

I beg of you.... please get in contact, there is help out there for you.. and i care. i promise you... I REALLY CARE ABOUT YOU. Your a fellow spoonie (google spoon theory) and we gotta stick together.

`It gets better' may be overused..but hun, its true


IM HERE - WORLDS HUGEST HUG.


Sam
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