Lady Gaga - How she counteracts fibro... - Fibromyalgia Acti...

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Lady Gaga - How she counteracts fibromyalgia

JoseT profile image
105 Replies

Note: According to her, everyone's body and condition is different so you should always consult with your Dr.

1. Breakfast

It would usually involve some type of eggs or egg whites, a lot of vegetables, and sometimes Greek yogurt or different types of fruit, or healthy granola.

She also has to have coffee every day, and she’s a big fan of green tea.

2. Snacks

She varies her snacks with some sweet and some savory, like bittersweet chocolate or a squeeze pack of almond butter.

3. Hydration

She drinks a lot of tea, fresh coconut water, and fresh green juice with kale and spinach and celery and cucumbers, parsley, lemon.

4. Turmeric and ginger

Sometimes when she is not feeling great or felt run-down she takes hot drink with fresh turmeric, fresh ginger, lemongrass, to try to just calm her system.

5. Salads and Food

She definitely will always have a salad throughout the day, whether it's for lunch or dinner.

She goes for gluten-free or quinoa pasta, served with veggies, and grilled shrimp for protein.

Lady Gaga typically has a quinoa bowl with black beans, grilled shrimp, and lots of vegetables for lunch.

She likes to make sure her salads include veggies, whole grains, and protein.

She also likes Vietnamese food.

6. Fridge

Her fridge is filled with water, kombucha, some type of unsweetened ice tea, definitely Greek yogurt and almond butter or any type of nut butters, and lots of types of fruits and vegetables—kale, swiss chard, lemons, limes, ginger.

7. Strenght training and exercise

She does 35-minute strength training sessions five days a week.

Gaga's workouts impact the body head to toe and include bicycle crunches, seated Russian Twists, reverse crunches, and dumbbell side bends. Gaga also does skater lunges (for that booty), overhead dumbbell triceps extensions (for those arms), and lateral dumbbell raises (for her shoulders).

She trains her entire body, but she and really focus on doing resistance training that works her abdominal muscles.

She uses a "Gyrotoner" machine to increase range of motion, improve strength and movement efficiency.

In addition to strength training, Lady Gaga likes to ride horses. Riding actually requires excellent strength and balance, and it can be a good form of exercise. One advantage to horse riding is that it can help strengthen the pelvic floor, legs, and core.

8. Yoga and Pilates

She does yoga whenever she can, not just for the physical element but for the mental side as well.

Lady Gaga has done Pilates to help her chronic pain.

9. Mental health

She has taken certain medications to help her through tough times.

10. Ice/hot baths and infrared sauna for sore muscles

Ice bath for 5-10 min, hot bath for 20, then NormaTec compression suit packed with ice packs or she goes for infrared sauna.

"When my body goes into a spasm one thing I find really helps is infrared sauna. I've invested in one. They come in a large box form as well as a low coffin-like form and even some like electric blankets!.

In order to not overheat my system and cause more inflammation i follow this with either a VERY cold bath, ice bath (if u can stand it, it's worth it) or the most environmentally savvy way is to keep many reusable cold packs in the freezer ( or frozen peas' n carrots'!) and pack them around the body in all areas of pain. Hope this helps some of you, it helps me to keep doing my passion, job and the things I love even on days when I feel like I can't get out of bed".

11. Swimming

Gaga is also a fan of swimming and likes to do it before her shows.

12. Alternative medicine

To deal with her chronic pain and fibromyalgia, Gaga has used Eastern medicine and methods such as acupuncture and reiki healing.

13. Trascendental meditation

She says that Sometimes she is in a ton of pain, and after meditation, it goes away. She says "It’s amazing".

14. Exercise breaks

She listens to her body and takes a break from the tough workouts.

If she is in a lot of pain and deep stress, she might not do as hard of a workout, or She might not work out at all.

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105 Replies
desquinn profile image
desquinnPartner

Most of that advice is on a parallel with general good advice for fibro and people could adopt some of it into their own routines.

Eat as well as you can

Keep active (more rather than less)

Use heat and cold if it works for you

Listen to your body and do not overdo it

Pace

Take meds when needed

Arymretep profile image
Arymretep in reply to desquinn

I agree, especially, listen to your body

DodgeDhanda profile image
DodgeDhanda in reply to desquinn

Sage advice

Painny profile image
Painny

…I hasten to add that she has got plenty of money and is not on pip counting her pennies 😊🪴

Sparklingsunshine profile image
Sparklingsunshine in reply to Painny

And undoutedly has a doctor on speed dial and probably plenty of help that she pays for.

Painny profile image
Painny in reply to Sparklingsunshine

Spot on 😊🪴

DodgeDhanda profile image
DodgeDhanda in reply to Painny

Absolutely & she has a talent that afforded her to do that & if all of us won the lottery we could afford some of that but the one that seems cheap enough is the tumeic & ginger . I prefer veggies over salads as I can make a veggie currie that U can add ginger , tumeic , spices & lemon grass too.

Let's all win the lottery I say .

Painny profile image
Painny in reply to DodgeDhanda

well said, I use ginger as my medication 💊

biker888 profile image
biker888

Unlikely Lady Gaga has fibro , possible ME , but most likely suffers from exhaustion giving her life style , ie burning her candles both ends ! , and clearly she spends a small fortune on herself and her health , of which cannot be considered as reality for most people with disability , there are a number of reasons why this woman is unlikely to have fibro , ie, fibro affects all muscles and hearing , she would not be able to hit notes and hear tones etc , anyone who can sing well is very unlikely to have fibro , also even all the money in the world does not buy you the energy that she appears to have travelling around the world and still working in the music / dancing / acting industry etc etc

Alltheflowers profile image
Alltheflowers in reply to biker888

Although she no doubt has the best medical advisors at hand, I think it's a little unfair to say she doesn't have fibro unless you know her better than herself! And regards fibro affecting hearing ... well I've had it nearly 30 years and I can hear fine. As we all know, fibro can be a complex condition and we're all different - if she's doing stuff that works for her then good on her, she still has to work with the syndrome - that's what we all do everyday with fibro - do the things that help us through.

biker888 profile image
biker888 in reply to Alltheflowers

hear ! what your saying , but giving everything she does it does very much put into question if she does actually have fibro, she may have had some quack in Harley Street etc tell her she has it , there are potentially new ways of making a diagnosis via brain scan or may be soon blood tests , so we may find out in the near future if my doubts are substantiated

Char1-2 profile image
Char1-2 in reply to biker888

Christ. I find it really hard you are questioning whether someone has fibro because she’s not like us and has money and can perform on stage. Who are you to question her health diagnosis. People are starting to sound a little bitter about her having money and more help than us. And it’s not a nice to read.

Sparklingsunshine profile image
Sparklingsunshine in reply to Char1-2

Its not bitterness, its a valid observation. If you have a chronic illness or condition its going to be a lot easier to manage if you have lots of money, employ people to help you, good medical care, can afford to heat your house, eat healthily and exercise, pay for therapies and alternative treatments.

Which is not to say its peachy, it still sucks. But Gaga's experience of Fibro isnt going to be that of someone relying on the NHS, scared to put the heating on, living in a one bedroomed flat and surviving on benefits, is it?

biker888 profile image
biker888 in reply to Char1-2

well you seem a big fan of hers , so you may well be a bit blinkered ! , just throwing out my opinion so chill or don`t whinge , , think her shows and performing says it all , I have never met a " genuine " sufferer of fibro that can do a fraction of what she does , and she dosnt overcome this curse by way of her wealth

Char1-2 profile image
Char1-2 in reply to biker888

not everyone is the same! I’m not a big fan. I’m just aware she’s a human being and struggles like us. I’d never say someone didn’t have fibro because they manage it better. You seem bitter. Awful trait to have.

biker888 profile image
biker888 in reply to Char1-2

and pray tell why do you think im bitter , I was just giving my opinion in response to someone`s thread this morning ,

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to biker888

Just my opinion but I find your opinion of her diagnosis to be invalid, unscientific and unnecessary, friend.

Sparklingsunshine profile image
Sparklingsunshine in reply to Char1-2

For the record I like her as an artist and I applaud her positive acceptance messages. I dont begrudge her a penny of her wealth. She's worked hard and deserves every success.

But that still doesn't change the fact that her experience of living with Fibro, with all of her advantages, won't be the same as yours,mine or most people. That's just fact, not btterness.

Rather like when the Royal family have another baby you know they aren't going to be getting up in the night for feeds and nappy changes. So their experience of parenthood is very different to that of the vast majority.

Char1-2 profile image
Char1-2 in reply to Sparklingsunshine

100% agree she can cope better as we don’t have the advantages

desquinn profile image
desquinnPartner in reply to Char1-2

would say she has more options to cope better but if you cannot find the thing that helps then she is in the same boat as everyone else. There are not always answers out there for people.

Alltheflowers profile image
Alltheflowers in reply to biker888

When a test to say if you definitely have fibro does happen, then I'm sure she will be at the front of the queue - but I can't see that happening just yet - so she has to do what she can to get through like the rest of us. It's hard enough being diagnosed with fibro and trying to get people to understand. So when a fellow sufferer say's she doesn't have it because she can still perform, then that's unfair. We are all different - some still work everyday and some don't, some are in a lot of pain most of the time and some not so much, etc etc ... she has the money to get the best care and advice healthwise which I agree would be nice for us all, but we're not helping the cause of fibro if we say a fellow sufferer doesn't have it just because she has found ways to help her live the life she wants. I don't know much about Lady Gaga, but I wish her, like all sufferers of fibro, all the best in managing their sympoms.

biker888 profile image
biker888 in reply to Alltheflowers

Money can`t buy you happiness , neither can it buy you a full life if you have genuine fibro !

Alltheflowers profile image
Alltheflowers in reply to biker888

I agree with you there - money can't buy you happiness or a full life. That's why with all her wealth Lady Gaga still suffers as we do and does what she can to manage it. She's also got fibromyalgia more widely recognised which is a great thing, as it helps people become more aware, and hopefully more understanding!!

desquinn profile image
desquinnPartner in reply to Alltheflowers

not sure if she will be at the front of the queue as tests are not the be all and end all. They do not mean better treatment normally and do not cover 100% of people typically.

Alltheflowers profile image
Alltheflowers in reply to desquinn

I totally agree - tests are not the be all and end all - if only! Maybe I was basing that on what I would do - I'm not sure what Lady Gaga would do in reality and I shouldn't have assumed. But I would want to know if a test was available that was definite. I know not everyone would want to know , but I would, for my own piece of mind, as that's just how I am personally.

I know no test is going to stop the symptoms of fibro but if by some miracle they do come up with one, then at least it means we're finding out more about it.

desquinn profile image
desquinnPartner in reply to Alltheflowers

There is a company offering a test and people were selling it out. We do not have confidence in it. And advised people against it but they were eager even though it would make no change to their treatment. I can see the wish for validation but it is a tricky route.

Alltheflowers profile image
Alltheflowers in reply to desquinn

It is a tricky one I agree., but maybe in the future...

The best we can do at the minute is look after ourselves with self care and support each other - which thankfully does help a lot more.

Char1-2 profile image
Char1-2 in reply to Alltheflowers

agree. I get through work feeling sick in pain and complete exhausted and try and hide this all day. I get home and have to go to bed. She probably feels exhausted when off stage. A lot of us put on a act at work and around others and they don’t see how I’ll we are.

Char1-2 profile image
Char1-2 in reply to Alltheflowers

100% no one should have to cope with fibro she’s still a person that feels pain like us. Obv just a bit luckier she has more help/money

Char1-2 profile image
Char1-2 in reply to biker888

she was abused by a producer and got pregnant by this at a young age this trauma set her fibro off. It has nothing to do with the shows and performing. Even though she has money she must still struggle and I wouldn’t wish fibro on anyone it’s very hard living with this. But she is a person like us at the end of the day. I do understand how people can mention she can’t afford all the help. I would love all the money in the word to use on medical/acupuncture ect to help me.

desquinn profile image
desquinnPartner in reply to biker888

I think like others you are viewing through the prism of your own experience, and it comes with a bias. I think my answer below is appropriate.

healthunlocked.com/fibromya...

sorry meant to add re your comment: "ie, fibro affects all muscles and hearing "

It actually does not. Pains in your muscles will be amplified by fibro or you may have pain there that has no physical cause. Fibro does not show up on biopsies. Also, hearing is not typically affected beyond the amplified sensitisation but not in all people and not in the same way and not all the time. Does not affect acuity and plenty of singers continue to perform with it.

biker888 profile image
biker888 in reply to desquinn

there`s so many people been diagnosed with fibro when they dont actually have it , some doctors diagnose to try and get some patients off their back , had a muscle biopsie 35 years ago , took a piece of muscle out of my thigh without any pain releif , just gave me something to bite on ! , yep dosnt show fibro , however fibro sufferers have thousands more nerve endings and this affects " all "the muscles throughout the body , that includes the throat muscles , this affects the voice and notes cannot be reached and certainly no consistency can be achieved , also tinnitus is prevalent with fibro , again this affects being able to sing , also remembering the words is not possible and having focus , she seems to manage all these aspects just fine which suggests that she aint got fibro ,

desquinn profile image
desquinnPartner in reply to biker888

the science does not support your view. Even the peripheral nerves in SFN does not support it.

biker888 profile image
biker888 in reply to desquinn

Science ! ha really , scientists can find a remedy for covid within a year of it kicking off, yet they still have no answer to fibro after many decades , muscles cramp up very easy as you should know , and that includes throat muscles used for singing , ive just belched out Roxanne by the Police that was on radio , can still kick out a tune but just not possible to achieve what I would wish or to continue singing in a power singing kind of way which Gaga does , just is not physically possible having fibro

desquinn profile image
desquinnPartner in reply to biker888

Dame Sarah Gilbert was working on the tech behind the vaccine for quite a while before covid and not just a year. Aids had so much attention and research on it but it still took decades to get to where we are now. It was also an accidental discovery in basic science that made the breakthrough happen.

Back to singing it is your experience that you are projecting through. Not everyone experiences what you do and fibro is about the CNS and its amplification and sensitisation rather than the physilogical effects on the body. Part of the difficulty with fibro is the lack of these physiological effects and metrics. The lack of inflammation that makes it so challenging when it presents like AI conditions.

But all of that aside, why do you need tear down someone else that is suffering. It does not benefit and has no relation to your situation. However, her contribution to awareness and her real-life struggle including cancelling concerts / tours shows the impact our condition can have to a wider audience. I would rather believe int he diagnosis of her medical professionals until there is high quality evidence to the contrary.

biker888 profile image
biker888 in reply to desquinn

Think it you Des that seems to think you have all the answers , if there is not some common denominators / traits to this illness then you need to question who has and who hasn`t got fibro , when it is able to make a definite diagnosis , be that a blood test or brain scan or another way , I think the fibro community are going to be in for a huge shock , and as you well know there are many scamming the system by claiming they have it in order to get benefits or comp pay outs , the latter of which has been well exploited by a certain solicitor Barr humbug !

I am not, repeat am not comparing others by my own issues so you really need to get that through your head , this site is not just for a shoulder for people , its also good to debate things , if they do not like something they read then throw away / dispose that thought , if like it then can make someone wiser , be that to do with drugs or some celeb who proclaims to have something they potentially don`t , and therefore misleading people .

desquinn profile image
desquinnPartner in reply to biker888

I have never said I have all the answers and perhaps in a position where with my knowledge and experience I can say it's not that or this. But I tend not to say it is definitely this unless I know it's that. More doubt and qualifiers. But that may come from attending conferences and speaking with experts regularly and hearing what they are certain about and also what they are not certain about.

I get what you are saying about this being a place to discuss things, but it is a support group and making categorical statements that fly against the evidence that exists then they will draw challenge. As I have said, I know of people with fibro who have run marathons, climbed large hills / mountains and all sorts of other things that are not typical for most people and thought to be out of reach for most with fibro. Because someone can do something it is not fair to say they do not have fibro.

I do not think it is ever right to say someone that has a medical diagnosis of fibro that they do not have fibro. I do agree blood tests will make this argument moot but not totally as it is normal that there are error rates with tests and people excluded who still have the condition. But there is no likely test in our near future so we will be waiting a while.

biker888 profile image
biker888 in reply to desquinn

I have simply challenged the fact that she may not have fibro , someone mentioned her this morning and I gave my opinion , yes its a kinda support group but its good to have free speech and explore issues that may be a bit taboo ,

like I say throw away what you don`t like and keep in mind what you do like , I must admit that I find it difficult to believe that people can run marathons etc , guess they must really have to pace themselves , doubt they are competing in any form or shape , certainly unlikely anyone can do a triathlon , I was mad about sport when young , wanted to be a pro golfer or cricketer etc but was always restricted despite being quite talented , obviously learnt why , but not until I reached 40 years of age !

I think a desirable test for fibro could be achieved sooner rather than later if it was more of an urgency , no one it seems in the scientific world is rushing to find a solution let alone a cure , only by genetic remapping in families will possibly stamp out fibro in future , but for us there aint no hope I fear

desquinn profile image
desquinnPartner in reply to biker888

I guess I would ask then what do you think fibro is? To me and the diagnostic criteria it is all over pain (being at 1-2 rather than 9-10 still counts), non-refreshing sleep, and the cognitive effects of that. That is it. It can be a lot more, but it can be just that.

So, she like someone from Seal team 6 can push beyond their limits in constant pain and achieve their objective and carry out their concert as long as they can have time to recuperate or pace afterwards. But they are still in pain, still tired and possibly need an auto queue or more practice than others to remember lyrics and queues.

It used to be the case that you or I would not be diagnosed with fibro as we were male and at the age I was diagnosed I was young. The stereotype was female and over 40 and if you did not fit the stereotype and/or had another condition that could explain the symptoms however incorrectly then you would not be diagnosed with it.

Stereotypes are not helpful in medicine and having a diagnosis of fibro helps improve clinical outcomes for people with fibro.

biker888 profile image
biker888 in reply to desquinn

thought I knew the worst that fibro could throw at me after 50 years of having it, that was until I was wrongly thrown in prison , there is no psychologist or physicist on the planet that could begin to begin to deal with or explain the mental and physical pain of which I suffered for a long period incarcerated and still suffering to a certain extent

desquinn profile image
desquinnPartner in reply to biker888

And I have every sympathy for what you have went through and as mentioned on the phone I hope you get what you need with your case.

Char1-2 profile image
Char1-2 in reply to biker888

you need a more positive outlook on life and to concentrate on your self rather than moaning and questioning other peoples health and whether they are as ill as you or not. It’s not healthy and helpful for your fibro! Makes me not want to come on these forums! Awful views!

biker888 profile image
biker888 in reply to Char1-2

dont think im the one moaning here , no one is forcing you to read my thread , take what you like and dismiss and throw away what you dont like , thats how to address the forum

Char1-2 profile image
Char1-2 in reply to biker888

how would you feel if I said your symptoms are different to mine. This means you don’t have fibro. Be annoyed would you!

biker888 profile image
biker888 in reply to desquinn

Tell me Des , what happens to all that money that get donated !

desquinn profile image
desquinnPartner in reply to biker888

guess that's a pointed remark but the accounts like for all registered charities are lodged at charity commission / companies' house. I can tell you from our P&L which I had behind me that shows that a lot of our costs like most charities are people and office costs. Last couple of months have seen us losing funds as donations are heading downwards with cost of living.

Needless to say, covid and current situation has made it challenging for charities and we have been conservative in our choices as a result given the charity only a number of years ago was close to not existing.

Our services however focus on getting info packs to people providing helplines and speaking to anyone that will listen about raising awareness of this condition. We also speak to individuals constantly as I did to yourself.

Once we work out how to provide it, we want to build on our existing benefits advice service by employing a benefits advisor to ensure that people are helped not only with benefits but anything that will help going through the cost-of-living crisis we are facing as well as advocating for our community.

Hope that helps with your question.

biker888 profile image
biker888 in reply to desquinn

Would a youtube site be a consideration Des , this would be a more engaging connection for sufferers and may get more people interested or better informed as to the condition , as you are aware im fighting discrimination by a judge , being disabled / being self represented are not lawful reasons for a judge to stem me from giving evidence in a British courtroom , things are snowballing , am in talks with Parliament , MP Glyn Davies raised concerns himself in regards of judges conduct to the public getting worse ,

I am making a very serious complaint against this judge , potentially an hate crime incident, am fighting to get the evidence from the court , they have pulled up the drawbridge and downed the shutters , have made it clear to them that their policy stating that the public are not entitled to a audio copy of the hearing is a mere document without a law attached to it , however I am requesting a copy under the freedom of information act 2000 and that its in the public interest regarding disability and that I need it for evidence for my complaint via the JCIO , so my request is by law and trumps their policy ! , have managed to get a full transcript which will be completed next week , but I want the audio to show how the judge also bullied me in real time amongst other gross behaviour , actually last week was anti bullying week come to think of it , police are trying to avoid investigating , made it clear to them that they investigated Boris and some of his team , and unless they class a judge above an ex prime minister then they must investigate this judge ! have faced discrimination in my life , never made a fuss as people dont understand our disability , but this , THIS was truly shameless unacceptable abuse

desquinn profile image
desquinnPartner in reply to biker888

Yes and we have been looking for volunteers to help with similar in regards to ideas and knowledge.

As to your situation you require specialist advice as I have said in our opinion

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to biker888

Please stop bullying others who already politely asked you to refrain from attacking us with your seemingly bottomless anger and negativity. If you don't already have a therapist to talk with, please be kind to yourself and find yourself a professional to help you.

biker888 profile image
biker888 in reply to LisaSnow

attacking / bullying who exactly ! I gave my opinion about Gaga and it was me who got attacked , so dont quite understand your angle snowflake

DoubleMalibu profile image
DoubleMalibu in reply to biker888

M.E can be extremely debilitating, I have learned to live with it for many many years and raised my children while suffering from it. Which has been no easy thing to do.

So your words appear rather flippant over suggesting she may have ‘possible M.E’.

I don’t know Lady Gaga’s story, whatever she has, as others have stated she has the available funds for any help or treatment she wants, which puts her in a completely different bracket to those of us that have limited funds and reliant on a failing NHS.

Just know M.E is debilitating, if you have had it as extreme as I have endured, since I was a teenager.

biker888 profile image
biker888 in reply to DoubleMalibu

I am not saying M.E is not also Brutal because of course it is , the point is that despite all her money there is nothing that can magically allow anyone with genuine fibro or indeed M.E to be able to achieve the activity that she manages to do

desquinn profile image
desquinnPartner in reply to biker888

So, what is the level of activity that a person with fibro is able to do in your eyes?

Find it hard to fathom the motive she or her health professionals would have for faking her story. Alternatively with the same logic that she has access to the high quality of professionals that her money and privilege allows that she is being so badly diagnosed or treated. My head spins at trying to fathom the logic that can make this work.

biker888 profile image
biker888 in reply to desquinn

called attention seeking Des, as you well know everything is a drama with the majority of performing arty farty people , also she should not be exhibiting her lifestyle regarding all her expensive pampering remedies to the general public when she knows full well that most fibro sufferers cannot possibly follow her regime

I find it fascinating that a prima donna / music industry celeb can have everyone concerned and warming to her and believing everything she says , yet someone who no one knows from Adam can offer some streetwise wisdom and advice yet gets shot down , knout stranger than folk , especially folk with fibro :)

desquinn profile image
desquinnPartner in reply to biker888

All sorts of judgement. Good forbid she wanted to highlight to the general public how a disenfranchised community suffers with their condition.

I have no reason to disbelieve her account and cancelling concerts and tour gives credence. But your same logic is what has others being disbelieved for benefits and blue badge spaces.

biker888 profile image
biker888 in reply to desquinn

she is prob most likely to knackered to go on stage sometimes due to changing her mental clothes & makeup , your out of line comparing my criticism of Lady blarr blarr with someone using blue badge space , no logic in your reasoning Des

DoubleMalibu profile image
DoubleMalibu in reply to biker888

Biker888 I understand your last message completely, it often feels some well known people in life or ‘arty farty’ as you say! seem to attention seek & can do fellow sufferers an injustice by stating they are suffering from something, yet it doesn’t seem to impact their life like the rest of us, they still seemingly have a full on life, which would floor most of us with Fibromyalgia or M.E.

I have to rest days before an event & days after, so how she can perform & travel the world, it would feel like she has a lot of help in her life to enable her to do that, who knows, who cares!

I don’t know Gaga’s story, but there’s a well known UK actress claims to have M.E then Lymes, then something else!yet claims she’s making a come back.

I can’t keep up with her claims and yet she has energy to pose & post endless ‘poorly’ selfies, self promotion selfies, she’s exhausting!

Can’t be doing with any of them, including Gaga, stay in my own lane and do what I can to get through a very painful and now restricted life, while raising my children the best way I can.

Hope you’re finding your own way to cope with your health. Forgot Gaga & others, focus on you.

Best wishes

biker888 profile image
biker888 in reply to DoubleMalibu

Ta for the kindish words , I simply gave an opinion and I was swarmed upon , and then im told that im being aggressive and bullish , guess that I have no credo and wont be going on that tripe programme that Hancock has seemingly hijacked so nobody gives a stuff about my comment , will be getting out of here though given that it is I who has been facing aggression and bullish behaviour from a few blinkered members , think some feel that Lady blarr blarr is an inspiration to them and everything she does or says is solid , guess thats the world we live in today , yep agree with you , shall erase this issue from my mind and continue to focus upon fighting against the truly gross and exceptional discrimination of my disability that left me recently partly traumatised by a judge

Kind regards

HealthAnxietyGuy profile image
HealthAnxietyGuy in reply to biker888

When I read she had fibro, I doubted it because having fibro she wouldn't be able to do as much as she does. I had to be off work for 2.5 years and a few months here and there prior as well, and almost went on permanent disability for fibro/ME. I understand everyone's body is different, but fibro is no joke. She might have a much milder case or something.

biker888 profile image
biker888 in reply to HealthAnxietyGuy

hi , yep agree with you that its unlikely she has fibro or M.E , most likely exhaustion from burning her candles both ends so to speak , as we know for many decades now , many people have been mentally burning out from modern day pressures , we are no longer just hunters and gatherers ! , so many things to juggle and tackle in the developed world , think social media is actually silently without us realising eroding our sanity , we are slowly but surely becoming slaves to technology and the worlds powerful and rich ,

erm , now what shall I have for dinner ! oh yep , shall hunt & gather my ready meal from the cupboard and pop it in that thing called a microwave :)

Vixen04 profile image
Vixen04 in reply to biker888

With all due respect you have no idea what you are talking about. Watch her documentary and you will see exactly what she goes through. Yes she has the money to have a doctor visit when needed and also has a Physiotherapist when on tour and you will can see her crying due to the pain. Good for her that she takes care of her body in order to continue doing the work that she loves. That doesn’t mean sha hasn’t got fibromyalgia, it means she’s a strong woman mentally who won’t give in to the central nervous system disease that we can’t control but she maintains a Positive Mental Attitude when she can. Her job and financial stays have absolutely nothing to do with her health and it’s offensive to hear such nonsense from another fibromyalgia sufferer. Shame on you.

biker888 profile image
biker888 in reply to Vixen04

Well Vixen , that has told me ! , she must have fibro then if you and others say so , and that she must be so much more mentally tough than me because she is a woman !,

BlueTofu profile image
BlueTofu

Hard to believe she can do all that exercise with fibromyalgia?. Or endure the hot/cold bath.

Char1-2 profile image
Char1-2 in reply to BlueTofu

everyone is different. She probably has more time in the day to catch up on sleep, therapy, massages, acupuncture, meditation, all the best doctors. So feels better than us to exercise. At the end of the day we have to move to feel better even if in the worse pin in the world like we’re in. Sitting all day will make us feel more in pain x

BlueTofu profile image
BlueTofu in reply to Char1-2

It's just I'm described as having 'mild' fibromyalgia and can just about do stretching and a short walk. Maybe her fibromyalgia isn't in active stage at the moment.

desquinn profile image
desquinnPartner in reply to BlueTofu

We are a very diverse community with some able to run marathons, work full time jobs to not holding down a job or being confined to their bed, and eery point in between.

Going back to basics, Fibro is widespread pain, non-refreshing sleep, and cognitive issues. These do not mean you cannot work or run-in pain and in fact they are nothing to do with what anyone is able to do.

I hate these conversations and lady gaga, and celebs are a magnet for them. When you hear of someone in a blue badge spot being victimised by a pensioner for misusing the disabled bay.... this is the same lashing out at the less fortunate and punching down.

I am one of those "lightly affected" by fibro relatively. It has just stolen my career, my social life, my wish to travel the world and live in another country. But I am lucky and besides my previous words I am not bitter. But I have had "you must not have fibro" comments on here and elsewhere. But, I have also received a lot from fibro that I am also grateful for.

The phrase and not aimed at anyone in particular but it feels very appropriate is

Random person: "You do not look ill....."

Me: "Well, you do not look ignorant"

Char1-2 profile image
Char1-2 in reply to desquinn

100%

BlueTofu profile image
BlueTofu in reply to desquinn

Ouch! I'm not belittling her or anyone else's experience. I do things in pain, too. I don't look like I'm in pain, because it's just always there. My therapist said said to me "I don't see you (being) in pain" So I told her where I had it at that moment! I don't like celebrity reports which go through the media, so you don't know first hand from the person themselves. I don't want to continue discussing her because of that.

desquinn profile image
desquinnPartner in reply to BlueTofu

Sorry my comments were not aimed at you or anyone in particular, but your post is where i started with my angst offload :) It is a common subject and topic over the years and viewing through our own condition is so easy to do for a lot of people.

Vixen04 profile image
Vixen04 in reply to desquinn

Thank goodness for a well reasoned reply. I am sick to death of being a liar due to my disability badge and I also find, as you say, that the ignorance In people (including those with fibro!), never ceases to amaze me but makes me very angry and defensive about fibro. Educate yourself people and get to know exactly what fibro is and how we come to have this horrible condition and most importantly, support one another rather than bringing others down. Who knows what trauma she went through to get the condition.

Gooddaysagain profile image
Gooddaysagain in reply to desquinn

Thank you, Desquinn, for your patient, humble and generous response. I read the original email thinking how nice it was that someone had taken the time to send us an excerpt of some info from a person who had found a diet, therapy and treatments that had helped her and may be of help to some of us. (Frankly, the thought of ice baths made my nerves screech!) I switched to a high protein diet as we need protein to make the amino acids that help repair, and prevent further, damage to our pain pathways. Eggs are reasonably priced and so quick and simple to cook that I can be out of bed long enough, even on the worst days, to beat some into warmed tomato juice.I must admit to some confusion as to why the person's name made such a big impact on the conversation.

Then again, I only lost some friends, my career, my home, my love of travel, my joy in writing, my ability to walk to places I can see from my window and any feeling I bring of use to anyone. BUT, thankfully, the only muscle that seems to be left whole and free of pain, is my heart - soft as that sounds!

I feed the birds outside my bedroom and the cats and I love watching them. I send out the ' Ho'oponopono' blessing whenever I can, as one way I believe I can be of use to my community .

Then, whenever I have saved up enough energy, I give my few - and REALLY lovely - friends, as many hugs as we can take.

No matter how much we've been hurt - and are hurting - PLEASE leave a chink in your heart for love to creep in and let you heal.

Thank you, Desquin. I feel honoured for having met you here, today.

Namaste (i.e. The Divine in me greets the Divine in You)

Dee

P.S. I was so moved by your patient support of us all, that I forgot I had an grocery delivery this morning. Poor driver was met at the door by a bedraggled, confused, sobbing female - smiling at him!

P.P.S. The "simple" Ho'oponnopo Blessing is 4 lines: "I love you, I'm sorry, Please forgive me, Thank you", which can be repeated as a mantra. Because I found this too 'easy' , which stopped me feeling the words as I stopped thinking about them, I added a couple of 'verses'

I love you,

I'm sorry,

Please forgive me,

Thank you.

I love you,

I forgive you,

I set you free.

I love you,

I'm sorry,

Please forgive me,

Thank you.

I am loved,

I am forgiven,

I am set free.

Thank you!

Sparklingsunshine profile image
Sparklingsunshine in reply to BlueTofu

My experience of Fibro is mine fluctuates. I've had it a long time, I was diagnosed in 2008 but spent several years before that with symptoms, from my mid 20's onwards. A set of symptoms but no idea they were linked.

I had 7 really bad years with it, then from 2015 following a concerted effort to lose weight and get more active I had 6 really good years,not symptom free by any means. But it was manageable and I remained Fibro medication free.

But this last year I've had symptoms creeping back and indeed brand new ones. I dont know if thats normal for Fibro but my understanding is it can go into remission, and conversely flare up again That may not be the case for others however. I dont know if mine will calm down again and if the symptoms I've had this year are Fibro related or not.

BlueTofu profile image
BlueTofu in reply to Sparklingsunshine

I hope your symptoms will improve again. Take Care

Sparklingsunshine profile image
Sparklingsunshine in reply to BlueTofu

Thank you. I hope so but will have to take what comes. As we all do😒

biker888 profile image
biker888 in reply to BlueTofu

or may be she does not actually have fibro ! some how don`t think she will be first in line to have a test when a definite test becomes available

BlueTofu profile image
BlueTofu

Maybe she had trauma induced pain that fortunately was help by the treatment she had and a doctor used the Fibromyalgia tag as a ' we don't know what it is or how to treat it'

desquinn profile image
desquinnPartner

Putting this here and not to anyone in particular. But disbelieving others with a diagnosis of fibro is the same mistreatment that we faced for decades from medical professionals. If this is your view of others with fibro then we are back to that time of fibro being a made-up condition.

I have fought against this view since being diagnosed and being involved with the charity which is pretty much the same month. There will be people that have been misdiagnosed with fibro and have ME, MS or cancer. It is the nature of statistics and people being human that there will be mistakes. But by the same token there are those yet to be diagnosed and those diagnosed with other conditions that actually have fibro.

But you would not go to a support group and call people out for not having fibro as their fibro is not like yours. Rather than tearing others down, give support and build the community up. I love helping someone with polymyalgia and getting them out of our community and onto the support they need. But they are still in pain, still lost part of thier life to suffering. Help, do not hinder!

Sparklingsunshine profile image
Sparklingsunshine in reply to desquinn

I thought for a long time I might have had MS and not fibro. My neighbour has MS and there's a lot of overlap between the conditions. I started geting some weird neuro symptoms last year and was able to get a brain scan. Which showed mine is definitely not MS. Sometimes I still wonder if I dont have Fibro but something else.

desquinn profile image
desquinnPartner in reply to Sparklingsunshine

I think most people will go through this doubting phase over the years. I thought I had cancer or MS in 2007 prior to my fibro diagnosis. But since then, every year and symptom has reinforced the initial diagnosis of fibro.

But there may be stratification within our condition and there may be subtypes or variations as we know more. We have learned a lot since brain scans in 2000s but much work still to be done.

Sparklingsunshine profile image
Sparklingsunshine in reply to desquinn

I guess that the lack of a definitive test doesn't help. I have underactive thyroid, diagnosed 2020, and thats a yes you have it, no you don't scenario. A blood test lets you know if your thyroid is failing or has given up. But Fibro has no such test and whilst its the best fit for my symptoms, you can't help wondering sometimes if they've got it wrong.

desquinn profile image
desquinnPartner in reply to Sparklingsunshine

but as you are active on the TUK forum you know that the test is not perfect as none tend to be. I will welcome a fibro test for the social and political as well as the research impact it will have. It will help clinically but probably not therapeutically at least initially :(

Sparklingsunshine profile image
Sparklingsunshine in reply to desquinn

No but it would good if a test did come out as then it if turns out you dont have Fibro then you can look at other avenues. I hoped when I got diagnosed with hypothyroid it would turn out to be that that was causing my symptoms.

I've long had a strong suspicion my thyroid was struggling as my levels were always very high in range for years. I've also heard that several doctors speculated that low thyroid levels, particularly T3 can very much mimic many Fibro symptoms. So it was a reasonable assumption. And it could be that in certain people they dont have Fibro, but thyroid problems.

However in my case being on thyroid replacement therapy has helped with certain things like crushing fatigue but certainly hasn't been the magic bullet I'd hoped for.

Char1-2 profile image
Char1-2 in reply to desquinn

I had 10 years of pain and feeling rock bottom seeing awful doctors tht didn’t understand was awful and o ly last three years learnt it’s fibro. Still struggle now and have dropped many days at work. But worst is people that don’t understand or believe.

Vixen04 profile image
Vixen04 in reply to desquinn

Thank goodness there are others like me who are able to show respect and support to fellow sufferers as opposed to bring them down. I replied to an earlier post saying the exavt same thing!

biker888 profile image
biker888 in reply to desquinn

And yet here you are on this site giving out advice left right and centre like your Dr Quinn or something , not really appropriate given you most likely do not have any medical qualifications ! , note that I did not say that Gaga did not have fibro if you read my thread properly , I simply stated that it was unlikely

desquinn profile image
desquinnPartner in reply to biker888

Sometimes people can disagree but really no need to personalise it. I believe I am either signposting to info, passing on info from our advisory board / publications and in the case where it can be construed as advice it is very general and not individualised.

The majority of your comments have strongly inferred that she cannot have it due to her activity levels. You do not seem to accept that there are people with fibro in constant low-level pain, that are not refreshed by sleep and crucially not as badly off as you. She may or may not be one of these people. It may be that she is pacing very well or would rather accomplish things while in pain as opposed retreat into her bed and remain in pain. People are different. Fibro is different.

It also does not read well that you are possibly victim blaming her for her apparent sexual assault. Again, not stating it but any tabloid reader can catch the inference. My point with this is not to attack you but that with the limited energy we have better to spend that on support rather than tearing others down. Who does it benefit to call into doubt her condition, cause or anything to do with her.

I celebrate the effect she; Morgan freeman, Kirsty Young, Brianna Keilar and Sinead O'Connor and others have done to raise awareness in the general public about our condition.

Sparklingsunshine profile image
Sparklingsunshine in reply to desquinn

Look at the paralympians, many in wheelchairs or with missing limbs or sensory impairments, accomplishing amazing things. No one suggests they aren't genuinely disabled, because they can run, ski or compete in multi events. There are degrees of incapacitation. Not everyone with Fibro is bed bound.

DodgeDhanda profile image
DodgeDhanda

Wow that is an amazing read , just unable to afford lots of the things but it seems eastern foods & meds both natural & manufactured too. Very interesting.

Hazel_Angelstar profile image
Hazel_AngelstarAdministrator

Late to this conversation - but I often share my own fibro journey.

I suffered for 12 years before diagnosis (2005) - was told I had various types of arthritis, as well as it was 'all in my head' before my gp eventually said I had fibromyalgia. By this point, I had given up working, rarely went out socially, was using a wheelchair as I could not walk etc

Having a diagnosis meant that I knew what I was dealing with, and could start to educate myself. I had 5+ years of crash and burn, while I tried every possible treatment I could - looking for the elusive cure.

2010 I became involved with FMA UK, and learned even more about the condition and more importantly the importance of finding not so much a treatment plan - but a self management plan. I live with a chronic health condition that currently has no cure or effective treatment, but that does not mean I cannot manage it enough to live my life and function on a daily basis.

I was fortunate to find a medication combination that took the edge off enough to let me do things like return to work part time, and also know my body enough to be able to manage symptoms the majority of the time.

Now, lady gaga (and every other person who has fibromyalgia) has a completely different life to me, and will use different treatments and techniques to manage their symptoms. I possibly do some things that other people with fibro would think impossible (I recently started a tap dancing based exercise class) but because we are different and do different things, does not mean that our fibro is any less or more than another person's.

Sparklingsunshine profile image
Sparklingsunshine in reply to Hazel_Angelstar

Well said. I'm fairly active. I love exercise, always have and its really important for my mental health. Plus as I also have hypermobility syndrome as well as Fibro I find exercise helps with stiffness, circulation and general fitness.

I have to pace myself and not go crazy but I'm lucky I can do it. Someone else I know who has Fibro is in a wheelchair and really struggles. So same condition but very different experience.

Alltheflowers profile image
Alltheflowers

Her personality is not for us to question - we are talking about fibro and whether she has it. I just wish her the best.

Alltheflowers profile image
Alltheflowers

I will leave you to your own opinion on which I very much disagree. This is a forum for support - I will leave it there.

Char1-2 profile image
Char1-2 in reply to Alltheflowers

we’ll said! X

it really is a shame that this is true. I don’t have anyone I can talk to in “real life” really without them either not understanding or me feeling like a burden (more a reflection on me!). My only post here had to be closed/locked and I haven’t wanted to post anything since 🤷🏻‍♀️

desquinn profile image
desquinnPartner in reply to

sorry that our locking of the previous thread has left you not sure about posting. Please do post and if anyone jumps on the thread with an unsupportive line of replies then please report it and we will have a look.

Above all this is to be a supportive group.

desquinn profile image
desquinnPartner

I have tidied up some of the replies on here and will contact some users about some posts that are against the group's rules.

But please remember to report comments that stray away from being supportive or break the groups rules. That lets the team have a look.

Alternatively we will have to close down the thread which we would like to avoid.

Rob-Fibro profile image
Rob-Fibro

An interesting post. Everyone manages fibro in different ways. I believe its a stress reactor in the brain that flicks once the body has become worn out for a prolonged period or from a stressful event/lifestyle. No matter what you do it cannot be flicked back and we learn a different way of life. The brain switches to enhance the pain receptors so we cannot go back to that chronic stress in our brain so protect us.

As for people coping differently I for one see that in people I know everyday with it.

Social, economic as well as many other factors can impact our experiments that work for us. Lady Gaga has the money to try everything available whilst most of us don’t - on the balance of probabilities she will probably find solutions to help her quicker than the average in no way does this mean she doesn’t have fibromyalgia.

This is just my opinion no offence to anyone is intended.

biker888 profile image
biker888 in reply to Rob-Fibro

If we compare our brain with say an ECU brain in a vehicle , once an ECU is damaged by a short or something it is basically unable to repair or reset , its as if our brain is continuing to tell the body / nervous system that there is a fault , this is triggering an imbalance in the chemical activity hence the nervous system is playing havoc with every entire part of our bodies, agree there`s no reset button , and we can`t change the brain like an ECU , the Genetic trait within the fibro population is inhibiting any reversal , only genetic modification will possibly stamp out this illness , which is hopefully being worked on by scientists

JoseT profile image
JoseT in reply to biker888

but why some people has total remission of their pain for even few months? (i personally know cases) or why some women dont experience almost any symptom during their pregnancy? I dont think you need a genetic modification to treat this illness, probably the answer is easier than that. Hopefully Science finds it out soon.

biker888 profile image
biker888 in reply to JoseT

wasn`t aware of remissions or the pregnancy strange affairs , think fibro is as mysterious as life itself !

Sparklingsunshine profile image
Sparklingsunshine in reply to biker888

I had several years of reduced Fibro symptoms. Mine coincided with menopause, maybe for some its hormonal. Its got worse again this last year.

Rob-Fibro profile image
Rob-Fibro in reply to biker888

A very interesting response so thank you. I can concur with several of your points. I think people do sometimes have better days but I think a combination of fi-night factors occur on the better days almost like right place right time right day so can be hard to replicate. Again just my humble opinion

biker888 profile image
biker888

hello there , yep def hormones play a part in pain levels , fibro sufferers are deficient in hormones , I know that much , also know many women with fibro have had Hysterectomies thinking that was the problem only to find that the drastic surgery did not make much if any difference , clearly theres concerns in taking hormone replacement , ive considered in the past trying pills or injections that body builders tend to use , I have learnt that males can use a female drug called clomifene to boost testosterone , personally just no confidence in taking anything as feel it would just add toxins to the body , and we have way to much toxicity as it is which ibs is a main factor , if your having hormone treatment may be worth unless you already have, having a chat with your gp to see if there`s options,

desquinn profile image
desquinnPartner in reply to biker888

The problem with definitive statements is they are interpreted (as they should be) as applying to all of the community. Correlation is not causation. The is evidence that those that suffer ACEs are more likely to have fibro and there is more than anecdotal evidence for this.

Keeping across the science and studies is challenging but possible. Hormones have been investigated as a cause especially given the previous female stereotype. But it being a major player is not borne out but for some that are deficient or out of balance then it may play a part. Someone whose general health is out of whack due to lacking in a vitamin like D for example will then more likely to have worse fibro. The remission in pregnancy is well known but lacking in data and again hormones are an easy go to.

Your ECU example is not too bad but nociplastic pain is still a new field, but the brains neuroplasticity does offer hope, and some do have positive change through pharma and non-pharma interventions.

Fibro is complex and the treatments still have a long way to go. But in your comments and in particular in this post you appear to be characterising fibro as more defined condition than it is. Stereotypes of people constantly in high levels of pain, being female, older and having 200+ symptoms are not everyone within our community. Casting out those that do fit your model are not helpful.

I think you would not consider myself having fibro due to your opinion on Lady Gaga. I am fine with others having that view as I trust clinical opinions and experience. But there are newly diagnosed that will not benefit from: don't take meds, you cannot work, you cannot exercise, and you cannot have fibro with low levels of pain or absent what clinically are considered non-core symptoms. This paints people outside the community as if it is some guarded members club. It is not and treating it as such is not helpful.

desquinn profile image
desquinnPartner

Locking this post as it has run its course.

The ability to reply to this post has been turned off.

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