Documentary with Lady Gaga

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Sagey

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Hi Guys,

I was just reading that Lady Gaga will have a documentary about herself and Fibro on September 22 on Netflix, just to let u know.
She said when she feels better she will start to bring more awareness and research about the disease,I hope.



Sagey
 

moe1959

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I heard she had to cancell because of (extreme pain )and needed to be with her Dr.s Right now. Well this was 2 days ago. I have to say thats the first time Ive heard fibro refered to extreme pain , mostly wide spread pain. The media sure has a way with words. I guess if it takes a STAR for peopleto believe, then so be it. I just wonder how they are DEALING
with HER symptoms. Good luck Lady Ga Ga, maybe you can make a diffrence.. grrrr.
 

Marvis

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There's also a documentary about Chronic Fatigue called Unrest that has been winning prizes at film festivals and should be getting out to some theatres in the states soon. It looks really powerful. Word is getting out about 'invisible illnesses'.
 

Maria22

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Hi all,
I was just reading about Lady Gaga.
It is sad for her as we all know, amd I'm sure she will follow through with her direction for more research down the road . This will be a huge hurdle for her to even be able to perform but I'm sure she will !!
Hugs to her, and all of Us !!
 

diamond

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My fibro is extreme pain as well as wide spread. I dont have netflix so i will be interested to hear from any of you guys who manage to watch the documentary.
 

Maria22

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I think most of us have wide spread pain that disables us. Some just have better coping stills because they have never given up .
Lady Gaga has extreme depression which hinders the most . I admire her for being so together and taking on this illness.
She will push forward like we are all trying to do to find better tools , meds, selfhelp groups that are supportive , kind , non judgmental, non comparing, and helpful.
It's hard enough trying to live with this on the outside world with limited support. Hopefully she takes some of the millions she's made and push it into research.
Too bad you don't have Netflix Diamond.
Maybe just goggle her and she'll utube something soon .
 

diamond

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Sorry but i cant agree some just have better coping skills....that's like saying some people dont try hard enough or given in. ..the kind of comments we have had whole threads devoted to on this forum about ....usually from non fibro sufferers who make us feel more rubbish than we already do.

I can barely stand long enough to brush my teeth many days and have no choice but to then lay on the bed to recover...my joints seize to point i cant continue and this can be just 2 or 3 laps of exercise around my living room or trying to make a simple snack in pain like someone knifed me or my bones would snap the joints get so rigid..its not something you can push through.... i have to stop and i have been the same for several years now....so its pretty extreme all the time unless i rest most of the day which i loathe.

Most days i do not have the strength or energy to sit in a chair for very long although i keep trying and can only use my laptop for a while before my energy is depleted to zero and my arms hands and shoulders seize and hurt too much they are useless for the remainder of the day and into the next couple of days and need ice or hot water bottles to try and manage the severe pain.

My fibro wasn't like this for 7 years but bad enough like so many life was a battle so i know the difference...i didn't suddenly loose my coping skills or give up...i used to be able to walk for maybe an hour many days with fibro and do all my housework by pacing and resting in 20 or 30 minute bursts.

I did not make my comment for sympathy just in response to Moe's surprise Fibro being described as extreme pain.

Acceptance we all have this illness to differing levels not just different ways of coping is also important and to support all levels on the spectrum.

Like you say kindness and being non judgemental goes a long way.

Some people have a huge array of add on symptoms like Interstitial cystitis vulvodynia daily migraines TMJ IBS facial pain tinnitus costochondritis and depression ..others may mainly have widespread body pain alone...or a mix..some have it all every day....not flares.

For some medication helps a little...some a lot ...some not at all.

I know from when you joined the forum cymbalta was a life saver for you so i pray one day i and others will find something that kicks in in the mornings to make the day more tolerable.

I would love to find a medication to help me be well enough to function much better or go back to work in my previous career.

Yes i will try and follow about Lady Gaga on utube or in the news or maybe some one might kindly update on this thread if they watch it.
 
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vickythecat

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Some just have better coping stills because they have never given up .

I also had difficulty reading this sentence. I don't want to attack anyone, or create any negativity. I'd like to think that you did not mean it the way you wrote it.

I think we can all agree on this forum that fibromyalgia can be very different for everyone and it is never ever about being weak.

We are, in fact, among the strongest humans on this planet. We have to fight this illness every single minute, every single hour, every single day, week, month, year for the rest of our lives. On top of all of that, what we go through is invisible to the rest of the world. That definitely makes us experts in coping - on good days and on bad days.

Back to the topic; I also hope Lady Gaga will invest some of her millions into research and support as well.

I saw the trailer and am curious what the needle therapy was. Or whatever it was, it was such a short clip in a doctor's office. I also don't have Netflix, so does anyone happen to know what she was having done?
 

Tipnatee N

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To me as you know I admire both of you Diamond and Vickythecat the most in here actually. And even though from many comments and posts I shared here might sometime sounding like I have it figured out, you guys know very well that I'm not, I'm very far from it. I can barely move inch by inch each day . I don't actually stand when I cook, I stroll on a rolling chair and sometime with a cane on the side in case a sudden blur vision or lost balance from the chair it self which happen far too often I still have bumps and bruises everywhere and still very scare . I can't stay away too far from bathroom and most of the time I'm on the bed constantly try to find comfort positions, or literally dragging my self on the floor if I happen to tripped over from sudden vertigo. On my very good day my body felt like being hit by a bus when I woke up, my Knees felt always on fire , i shake like a leaf when I locked my knee to stand still, from my neck down to my back felt like electric burning shock everytime I leaning forward my spine felt like there's a sharp wire wrapping around my body all the way from top to bottom even inside my back bones and rip cages those sharp wire kept on pulling and cutting deep in to it i can almost hear it it my ears that painful creaking and cracking sounds still ringing in my ears along with my screams. I choked so often from it I secretly wish if I could just drop dead now would be a good time. Feeling like bugs crawling under my skull or skin is a norm to me, my face aches and eyes always in so much puressure pains from lights, Humidity, sounds I constantly literally living in darkness. I always waken up Dracula style thanks to my sleep paralysis. (Thank god I still like garlic). My heart felt like I'm constantly jumping off a cliff it felt like I'm having a heart attack every hour . I believe the word "better coping skill " can also applied as the ability to still constantly living with it , with strong enough mind to live till tomorrow. Knowing what to do to survive just a day an hour even just a little minute longer that it will pass or will finally or hopefully get some sleep to fight another day. That advices given to one who does not know can be a life saving from suicidal or completely sanity. That is what I believe is a coping skill that should keep on sharing, encouraging ,supporting ,living, and just simply being human to one another. I don't think Maria22 meant any harm by it , I often made mistake saying things that came out horribly wrong before. I hopefully I'm right about this for once. No? :sad:
 

diamond

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Oh wow Tipnatee i sooo admire you as you suffer so terribly yet keep going...keep trying....this is beyond normal coping...you are a hero.

Some people do have fibro to a greater degree of that im sure..so far from not coping so well ...i truly believe they cope brilliantly simply fighting to live the next minute or hour ...day after day month after month with no or little respite.

My idea of heaven is if i lay completely still with my hwbs and ice and get the pain tolerable by doing this for a part of the day enough i can watch a TV show and concentrate enough to enjoy it...or emailing a friend or my partner holding my hand so i have human contact and his stories of whats going on in the outside world even if its the price of petrol ( gas) keep me slightly connected to the outside world....and for these things i am grateful.

For others heaven with fibro might be a hike or a few hours out socialising or a drive out in the car...but they to will most likely pay later to varying degrees.

We are all coping and not giving up in our own way.

I don't want to hurt Maria22 feelings at all....maybe i took offence too easily on behalf of those who definitely do keep trying and coping in almost inhumane levels of suffering and loss of any degree of previous normal activities to cling to.
 
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Tipnatee N

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Oh wow talking about ice!! I just now came out from completely submerged in ice bath my bf prepared for me cause my skin was burning up today I can see day light stars :confused:. Although my head hurt from the freezed but at least my ear stop ringing or hearing things that wasn't there . Last night I swear I was hearing children praying song , turns out it was my electric fan. Diamond, you are like a pillar for me here and I think of you daily of how hard you getting by each day, it helping me holding on just a bit longer. When I was in the competitive sports in high school I used to do imaginary training after I get all the race courses and practiced down. I guess I was unknowingly using it unconsciously in order to escape the mind crushing pains I'm experiencing. I was double in music and art majors in collage so I often imaginary my hypes of pains sensitivity as the melodies on the music sheet that I'm imagining playing on my piano. I can fight an push my pains tolerance towards the last page and it kept getting louder and bigger then I hear the highest note playing at the totureous heart raging tune, then scaling down to the grand finale. As the ice numbing my ear lobes I claps for my self for the successful piece of music ended, then slowly standing up imagining taking a bow while screaming on top of my lung shivering, grabbed a towel and plopping out from the ice tub as quickly as I can. Those adrenaline is suddenly turning my radio in the highest volume to the song by Dropped kicked Murphy " I'm Shipping Up to Boston " :shock: :twisted:
Now I need a drink :mrgreen:

I don't know any heaven right now but if I have to imagine it I think it would look like I was drowning in a tub full of lidocaine lol. I'm still far farrr from hero, as far I know you are much more of it than me. The hero should be the one who beat the fibromyalgia completely. But isn't it the true delicious greatest victorious goal?
 
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Marvis

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I think we have to be really careful not to take offence at what we write to each other. We're all functioning in a state of brain fog - where things don't always come out right, we forget words, our fingers don't always type quite what ours brains want us to. Sometimes I find it takes a bit to decipher what people mean in their writing. Also, we're all at different stages with our fibro and we all know that at the earlier stages most of still think there are 'cures' or ways of doing things right or wrong that will 'fix' things. Maria's sentence was just that - a sentence - that could have meant many things depending on the greater context of her thoughts at that moment.
 

Tipnatee N

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I think we have to be really careful not to take offence at what we write to each other. We're all functioning in a state of brain fog - where things don't always come out right, we forget words, our fingers don't always type quite what ours brains want us to. Sometimes I find it takes a bit to decipher what people mean in their writing. Also, we're all at different stages with our fibro and we all know that at the earlier stages most of still think there are 'cures' or ways of doing things right or wrong that will 'fix' things. Maria's sentence was just that - a sentence - that could have meant many things depending on the greater context of her thoughts at that moment.

I lost count of how many time I must have said things that must had been so weird to others or ended up offended others so greatly without knowing, most the result was far so shocking with their returned reaction it left me incredibly baffled! Unable to understand what did, or how did I do so wrong ? . Then in my head appeared with looping thoughts trying to fix the situation in my head , but couldn't fathom it. Should I get angry for being misunderstood ? Or should I apologize but how?? It's so confusing my head spinning out of control. :confused: Then when I finally understood the situation it was incredibly not what I expected. :shock: like a big huge pile of misunderstanding and the unfortunate choice of words in the unfortunate frame of mind.
 
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Marvis

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I know, right?!!! I used to be so good with words. Now I sound drunk, keep forgetting words, keep forgetting what I'm saying. I keep thinking people are going to think I'm a closet drinker ... so need to stop worrying about what people think lol.

And, Diamond, just so you don't think I'm wagging my finger,I too get easily offended. Had someone mention their fibro was healed with essential oils. Wanted to go over there and dump those oils on her head. P***ed me off!!!!!!!!
 

Tipnatee N

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Had someone mention their fibro was healed with essential oils. Wanted to go over there and dump those oils on her head. P***ed me off!!!!!!!!

Oh no! :shock: ( hiding my clove , eucalyptus , and lemongrass oil behind my back) .. I will try my best to remember not to ever mention that when you are around ever :neutral:
 
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