I Have the Same “Invisible Illness” as Lady Gaga

On September 12, 2017, Lady Gaga tweeted that the chronic pain she suffers from in her documentary Five Foot Two is a symptom of fibromyalgia. A week later, her publicist circulated a press release announcing the postponement of her European tour, which was scheduled to begin September 21st.

“I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring,” Gaga wrote in an Instagram post the same day.

Shockingly little is known about fibromyalgia and what causes it. Characterized by inexplicable pain and fatigue, it is often labelled an “invisible disease,” because there are no outwardly discernible symptoms. There is currently no cure. In the aftermath of Gaga’s announcement, Man Repeller reader Yael Palmon told me about her experience being diagnosed and living with fibromyalgia. Below is her as-told-to story. -Harling

Most people with fibromyalgia suffer for years until they get a diagnosis because nothing shows up on tests, nothing shows up on any scans. It is often a last-ditch diagnosis once everything else is ruled out. My journey was a little non-traditional. In October 2015, I got a migraine that lasted for five weeks. I had to drop out of school. I was like, “Oh, I’m just going to take a year off. It’s fine, it’s no big deal.” Then, three months later, the migraine came back. This time it lasted for nine months.

I was up to my ears in medical tests. I was in such an exaggerated state of pain that one day, in addition to the migraine, I just couldn’t move. The pain had just spread everywhere. That was what instigated my fibromyalgia diagnosis. The way my doctors explained it, the trauma of the migraine kind of freaked my body out to the point where I then developed fibromyalgia.

I hope Lady Gaga’s openness about her fibromyalgia diagnosis helps legitimize the suffering caused by the illness. Seeing someone who is so dedicated to her fans and so successful have to give so much up shows how serious and debilitating it really is. It meant a lot to me that she explicitly cited it as the reason she is cancelling her European tour.

Her candor is especially meaningful in the context of her new documentary, Five Foot Two. The narrative arc paints a picture of her being able to persevere through her pain flare-ups and still maintain this very intense pace and career. But her announcing the diagnosis and tour hiatus prior to the documentary release validates a lot of the sacrifices fibromyalgia sufferers have to make.

My life is totally different from the life I had before the illness. I was studying fashion at Parsons, I was living in New York, I was very active and independent. Now, I’m very much at the mercy of my body. Everything I do is dictated by my health, which can shift at any given moment, so I’m constantly checking in and asking myself how much I can do today, and then three hours later I ask myself the same thing. I take a lot of breaks. I can’t work a full-time job right now, so I’m just babysitting for a few hours almost every day. I spend a lot of time in bed, a lot of time watching TV.

I moved from New York to Israel when I got the diagnosis. A lot of my extended family and my boyfriend are here, and the pace of life is a lot slower. Public healthcare is also better. I’m paying the equivalent of $20 a month for the best public healthcare available here, and it covers quite a bit.

Exercise is one of the only things that is known to really help mitigate fibromyalgia symptoms, but when you’re in excruciating pain you obviously can’t exercise. It’s a catch-22. I have to rest constantly. I have a million pain creams. One time I layered three of them on simultaneously and it was one of the prouder moments of my life.

The medical community knows so little about the illness, so it’s a lot of trial and error. There are medicines you can take, but they can be very hit or miss. A lot of chronic illness patients use and rely on painkillers and opiates to get through the day, but they gave me such terrible side effects that I prefer not to take them unless it’s an emergency. Medical marijuana has helped a ton — I’ve was never a smoker but I’m a huge believer in it now.

A big struggle with fibromyalgia and many other chronic illnesses is that they are invisible illnesses. I look perfectly healthy to strangers. I have a fear of being asked to give up my seat on a bus for someone who looks more worthy. I was recently waiting in line at a very crowded place where seniors and mothers and other select people were able to skip the line and sit down but, as a totally healthy-looking young woman, they didn’t believe me when I asked for a seat. I’ve also been honked at lots of times when crossing the street too slowly.

As many studies will tell you, women’s pain is consistently taken less seriously by medical professionals, and the majority of fibromyalgia sufferers are women. I feel really lucky that none of my doctors have ever doubted me. I can’t even begin to imagine what it’s like to be in the amount of pain that we’re in and have someone tell you, “You’re absolutely not in pain. This isn’t real. It’s all in your head.” It was clear to me that Lady Gaga struggled with that stigma in the documentary when she calls herself pathetic for being in pain.

The most frustrating thing with fibromyalgia is that you can’t fix it. Sometimes you can you can manage it, sometimes it just goes away, but there’s no proven formula. Knowing that takes a huge mental toll. After being diagnosed with fibromyalgia, I felt like my identity had been taken away from me. I was very career-oriented, and pursuing that had been a huge part of my life since I was nine. It took me a long time to realize that my illness hasn’t erased that aspect of my personality — that there’s a difference between physically not being able to work hard and being a person who doesn’t work hard. I have a lot of guilt and self-doubt about that part of myself, but I’m still a hard-working person. That’s still part of my identity.

At the end of the day, I try my best to find the humor in what I’m experiencing. I have to try. Life is too absurd not to. I talk a lot about the ridiculous things that happen to me as a result of having fibromyalgia because sometimes they’re pretty funny — like, I had to get plastic silverware because normal silverware was too heavy! And one time, my boyfriend once had to brush my teeth for me because I couldn’t do it.

Sharing these moments has showed me the importance of social media for people with chronic illness. My healthy friends, as amazing as they are, struggle to find the humor in things so depressing — but fellow sufferers (we call ourselves spoonies) can. Having people to joke with and vent to who actually get it has helped me in so many ways. We don’t mean it as a “pity me” thing, we mean it as a “this is bonkers, you gotta laugh it” thing. That’s how we survive.

Follow Yael on Twitter at @migraineyael.

Photo by Kevin Mazur/Getty Images.

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  • Anna Artmann

    THANK YOU SO MUCH for this post! i have gone through almost the same thing – by now i have accumulated three invisible/mystery/unfixable debilitating diseases that completely changed my way of life and not just that, they also changed my identity – you put that so perfectly! and i´m totally on board with what you´re writing in those last two paragraphs – sometimes i feel like the only thing that makes me power through one of the rougher episodes is thinking it might turn into a hilarious story sometimes in the future.

    all the best to you, lady gaga and fellow sufferers out there!

  • Liza

    I also have fibromyalgia. And chronic fatigue, and SIBO, and mercury toxicity, and a whole host of other things that seem to be at the intersection of where modern life meets the cluelessness of “modern medicine.” It’s life changing, life-altering, and depressing as hell. I have less and less in common with the woman I used to be. (Some of that is good and some is awful.)

    Seeing Gaga in the doc get shots and her makeup done at the same time felt so familiar (except no one does my make-up for me.) If I had a dollar for every time someone tells me “well, you LOOK great!” then maybe I could afford to move to a country with better medical care.

    SO MANY WOMEN I know are going through similar things. It can’t be coincidence that it’s so prevalent among formerly hard-charging, 100-hour-a-week, rise-and-grind ladies, who still only get a fraction of a man’s pay while doing more housework and working hard to look the part. This shit has to stop.

    Take care of yourself, friends. Today.

    • Harling Ross

      Thanks for sharing this, Liza

    • Jolie

      Thank you for this. I also have chronic pain (not due to fibromyalgia, though my doctors are so incompetent that it might take years to get a diagnosis) and SIBO. Among other unexplainable, uncomfortable medical issues. I completely relate to not feeling at all like the person I was before – I feel like since this has happened, a brain fog has settled over me that makes me feel like my life/body isn’t even real. I feel so trapped.

      I agree that it can’t be a coincidence that so many women are going through this. Why are all the fatigued, chronic pain sufferers I know in my life women? And how the hell are we supposed to “relax” (everyone’s advice to me) when we have to think about keeping full-time jobs, paying rent, and keeping symptoms under control? All while having to exercise, stay “well”, etc. It’s so frustrating!!!

  • It really makes me wonder why so many people living with fibromyalgia are women. I had a friend and a family member who have it (both women). Do men ever get it? Are they just suffering through it, not getting it diagnosed (because “suck it up, you’re a man”)? Or is it like breast cancer, where the percentage of men who get it is minuscule?

    • Anastasia Danielson

      I have fibro myalgia along side bi polar disorder. At least you can see
      the crazies when I have an episode. FMS has changed my life. Like all the rest of us. I’ve lost friends who don’t understand how I can’t keep up with them like I used to. The meds for FMS interfered with the bi-polar meds.Opiates only help decrease the pain not fully giving total relief. We suffer. I was lucky in being diagnosed by the Cleveland Clinic on my first visit. But in the early 90’s little was known about the illness and there wasn’t much help for me even though I was seeing a specialist. I’ve met one man with FMS.
      My advice for all of us is respect your body’s limitations and take it one hour at a time

    • Tiffany Mouton

      I believe that hormones play a huge role in fibromyalgia symptoms. That is why there are so many women affected. I can tell you from personal experience, my pain/joint/body ache symptoms coincided with my hormonal fluctuations. Goes to show how woman are often not prioritized…so little is still known about female hormones even though we all have them & most of us suffer from some sort of hormonal issues in our life. Very little is know. Trust me, I have researched the topic looking for answers for years. Even my Gynecologist admits that they really don’t know much. She tells me to adjust my hormone replacement therapy myself. There are no levels to monitor, it is like a moving target. I will also say this, Fibromyalgia definitely has a stigma that people with Fibro are crazy. It is a sad generalization, but I see it first hand in my profession as a RN.

      • M Rae

        so interesting to hear your perspective with personal experience and as a medical professional. I recently listened to the ‘Bad medicine’ series of the podcast Freakonomics and they touch on the exclusion of minority and female populations in medical research…I was SHOCKED to learn that gender wasnt even a required variable in pharmaceutical testing until 2014. read that year again…2014. so virtually all research and testing done prior, was solely done on men. pharma-industry ‘justification’ being that the presence of hormonal cycles and reproductive organs make women more complex organisms..like, scientifically. which is just a whole other can of overwhelming worms. kudos for taking matters into your own hands.

  • Hazel

    I love articles like these. I have another invisible illness that has completely changed my life, independence, goals, etc. And being able to read about it here, in a community that is centered around common interests that we choose to have, instead of a common difficulty we have no control over, is so uplifting. Thank you for sharing your story, and stay strong!

    • Harling Ross

      That’s 110% the purpose we want MR’s community to serve. Thank you so much for reading and commenting.

  • GlitterPutty

    I too have fibro (about 6 years now… I am 44)… Along with chronic fatigue and SIBO and chronic migraines etc.. etc.. I have been told by multiple nurses and doctors to go “see a therapist” and one nurse even told me I was bi-polar… which… HELLO!! I am not. I do not take opiates any more (which I do not recommend), just stuff for my migraines and ibuprofen. Yoga, sex and herb has been a tremendous help.
    When all is said and done…. This stinking illness can suck my left big toe!
    (FYI… Men get it too. My good friend has it. He is in his late 50’s. Had it for 6 years.)

  • I just want to say thank you so much for speaking about this. I’m personally in the early days (first six to eight months) of being completely knocked out by this strange condition that leaves me completely exhausted at the smallest of exertions, excruciating chest and joint pain and headaches.

    Learning about what impact my predispositions to autoimmunity could be having on my body has been an incredibly murky process. And on top of not knowing what is happening to you physically, you begin to lose trust in all sense of your own discomfort. When I first became ill I would subject myself to an inner interrogation of the legitimacy of my symptoms – since no one could see them or measure them in a blood test, surely they mustn’t be real?

    What’s interesting to me throughout this whole process is how so much pain women are often experiencing is dismissed. To me, there is a bleedingly obvious intersectionalty between womens’ pain being reduced to a kind of emotional metaphor, the historical treatment of female specific conditions like “hysteria” and the statistic prevalence of women that suffer from autoimmune and inflammatory conditions compared to men.

    Probably from no one else other than myself, I felt caught in my own metaphorical snake pit – the more I couldn’t deny my symptoms as real and debilitating as they are, I still feel like I’m taking a massive risk when speaking with every practitioner of being labelled a hypochondriac, anxious, stressed, otherwise healthy young woman.

    Conversations like these about invisible conditions are slowly coming out of the woodwork, and will be incredibly powerful in being able to explain a kind suffering (because this whole mire IS suffering) that medicine and language have not yet been able to articulate.

    • Bonnie Rhymingbj

      Olivia, you are a very bright woman and you express yourself eloquently. You will be able to reverse your symptoms if you want to, and get your life back. There are thousands of women on the http://www.fibromyalgiatreatment.com support group, run by the manager of Dr. R. Paul St. Amand’s Marina Delray, CA office. Dr. St. Amand has FMS himself, as do his 3 daughters. But the doctor, his daughters and all of his patients are on what he calls The Guaifenesin Protocol.
      I am on it also. I have been doing it for 10 years. It reversed my symptoms. I am so grateful to him for that. And the protocol was approved by my physician, who used to prescribe Hydrocodone for my pain.

      Please, please go to the website mentioned above, and then get ahold of the book What Your Doctor May Not Tell You About Fibromyalgia. It describes the protocol along with Dr. St. Amand’s theory on why you have FMS. As you read it you will recognize yourself in his description of his many patients and their symptoms. I wept as I finished his chapter describing all those symptoms. There was my mother, my daughter, my aunts, my brother and myself in his descriptions.

      He walks you through, in detail, what he has his patients do to get well. It is mainly one little over the counter pill taken twice a day. And he has about 10,000 patients, all of which have FMS and Chronic Fatigue Syndrome.

      And join the support group described on the site. No one will try to sell you anything, there is no discussion about anything but the protocol. The women on the support group site will teach you how to get well.

  • Bonnie Rhymingbj

    There are many thousands of people on a protocol created by Dr. R. Paul St. Amand, the author of the book “What Your Doctor May Not Tell You About Fibromyalgia”. Dr. St. Armand, Assistant Clinical Professor of Medicine, Harbor UCLA, is in private practice in Marina Delray, California. The practice takes a myriad of health insurances including Medicare. I am 73 years old and have been on the doctor’s protocol for over 10 years.

    Fortunately, by following his protocol, I have reversed my symptoms that plagued me for over 21 years.
    The protocol can be done on your own as long as your physician allows you to take the simple, over
    -the-counter medication that is needed to reverse the symptoms. You may have the medication in your medicine cabinet right now, and not even realize it.

    I inherited fibromyalgia from my mother and I passed it on to my daughter. Ten years ago I ached everywhere and suffered from fatigue and mental fog along with at least 30 other symptoms. I began to reverse those symptoms a few months after starting the doctor’s protocol.

    I have been a Fibromyalgia support group leader several times over the last 10 years.Thanks to the doctor, his little paperback book, and a support group, focusing on how to do the protocol properly, I have helped a number of other women reverse the symptoms as well. The support group site is http://www.fibromyalgiatreatment.com and it is run by some of the most amazing women in the world, who take the time to teach thousands of women in the group how to do the protocol properly, and charge nothing for their help.

    • dorarod

      I too have fibromyalia n suffering so much everyday. This has rob me from enjoying life like I use too. Days go by n can’t even walk nor have the desire to do nothing nor see no one. I’m in bed n lying on the floor til it wears down. It’s so sad n depressing . My doctor says there’s nothing to do but, live my life around it. So, I will get worse as the years go by. HELP .

  • jessica marie

    When I was in college, I took a belly dancing class, just for fun. My instructor was probably in her late forties or early fifties and seemed so fit. I was really surprised when she cancelled our class one night because of her fibromyalgia pain. When our class got together again the following week, she said belly dance was one of the only ways she managed the pain because it gave her greater control over (and awareness of) her body. She encouraged our class to anyone with fibromyalgia we to try practicing mindful boss movements in the form of belly dance, Tai chi, yoga, or whatever body-conscious activity they enjoyed and were physically able to do. So that’s what I’m doing, please consider it, even if it seems counterintuitive.

    • Bonnie Rhymingbj

      You are right. Exercise helps reduce the symptoms of FMS. But some people are so far gone they can not get out of bed or walk to the end of their block. They need The Guaifenesin protocol found at http://www.fibromyalgiatreatment.com

  • cecilrahn

    Crying, as I’ve never read something so succinct and honest describing chronic/invisible pain. I lost a traditional high school experience due to chronic migraines and have yet to start college due to continuing health problems, and a severe lack of confidence in my ability to succeed due to the loss of such a vital time in my personal development. Thank you so much for sharing this story and making chronic pain sufferers feel heard and understood.

    • MaeMel

      I also have Chronic Daily Migraines and lost my entire HS experience. I don’t know how much this will help you, but just know it gets better. I’m currently set to graduate nursing school in the spring, even with daily migraines and non-stop background headache pain. Know you have to do what’s right for you and your body, but don’t let that stop you from being happy! It’s so great to feel understanding from a group of young women. Thank you for your honesty and openness in discussing a topic most people shy away from! We are strong!

      • cecilrahn

        My mom is a nurse, so I am well aware that you work your ass off, and am incredibly proud that you have persevered through the pain. Go out there and kick ass, your empathy with your patients will take you so far.

  • Maria

    My name is Maria. I am from Madrid, Spain and my life changed completely when I discovered Psicoanalysis. On 2010 I was devasted, my body was full of pains (real pains not in my head) and as a human being I was destroyed… One friend of mine that just had divorced told me that she was into psicoanalysis and she was with a lot of suffering because of her divorce but feeling fine, calm and better than ever. I had tried every single theraphy you could imagine to mitigate my pains and nothing worked. So I decided I had very little to loose trying another one, this time was Psicoanalysis, I thought that therapy was only for intellectuals like Woody Allen or very smart people but I decided to give it a chance and after 6 years I can say it is the best i did. My pains started to relieved (no pains at all now), my life started to have a meaning, my maternity started to be something more than just having 2 gorgeus kids, I started to being and the best to understand why so many pains, why so much suffering. Because what i have clear now is that everything is for a reason. Casualty does not mean anything to me. My body was destroyed because inside I was destroyed. So simple and it took me so many years to realize.
    I hope this can help others as my beloved friend helped me when she told me about Psicoanalysis. Thanks. Maria

  • Ciccollina

    Thank you for sharing your story and I’m so sorry you have to suffer through this. Big hugs.

  • I don’t suffer from fibromyalgia, but am autistic and experience a host of difficulties from sensitivities and executive dysfunction, in addition to a chronic injury and low blood pressure, which can make things tricky. I feel the same way about riding the subway and interacting in public when I’m having a hard time; I haven’t been asked to give up a seat yet, but I’m always afraid when I’m having a bad day and just trying to crawl back home that someone is going to think I look fine, make me stand up, and I’ll faint or fall, or the effort will exhaust me to the point that I need to take the next few days to recover.

    Similarly, it’s frustrating having a bunch of friends who do things at what I see as superhuman speeds. Everyone is in New York and really successful and when I talk about any difficulties I have getting my daily work or chores done or wonder how they do everything, their advice is something along the lines of ‘just buckle down and do it.’ Which, if I’m in such a haze that I can’t remember how to wash dishes, is not going to help.

    • Jolie

      I know exactly how you feel, especially on the subway! Commuting has become something that gives me extreme anxiety because I know on my worst days, when I’m in so much pain or so fatigued that I can’t stand for longer than a few minutes, I won’t be able to get a seat on the subway if I need one. People have asked me to get up from seats before and now my answer is always something along the lines of “I’m sorry, I have chronic back pain and it’s really hard for me to ride standing up.” I don’t care what anyone thinks.

      And you’re so right about people in NYC seeming like they can do and have it all. I have friends that have amazing jobs, hobbies, success stories, and somehow still find time to spend with friends and loved ones. I used to be able to do it too. Now I find myself staying in, laying in bed, trying to concentrate on something simple like reading a book and just going to sleep because I can’t. I don’t have motivation or will to do any chores. I’m sorry you are going through this too. 🙁

  • Dani

    Thank you so much for sharing this. I’ve had fibromyalgia (layered with a fantastic number of other mental and physical ailments) since I was 16, and for a few years it took everything from me: school, work, theater, even reading. I couldn’t even sing for a long time, and that’s one of the only things that gives me comfort some days. I was told over and over again that I was exaggerating or faking it completely for attention. It was a “phase,” or I was lazy, or I was just dramatic. I ended a five-year friendship when she told me, “The only reason you’re still sick is because you don’t want to get better”; in retrospect, it was a toxic, abusive relationship for the full-run, but that remains the most hurtful thing she ever said to me.

    I’m 24 now, and the people in my life are supportive and understanding, but it hasn’t gotten easier. My job is incredibly physically demanding, which limits my activity outside it. I’m training a service animal right now, and I’m worried about how we may be treated because I “look so healthy.” Every day is a battle, but I’m hoping with more people (especially prominent figures like Gaga) being open about their lives and conditions, the world will become a little more understanding of what we live with, and maybe a little easier to live in.

  • Laura Moreno-Davis

    I am in the process of getting diagnosed. I suffer from Osteoarthritis and other chronic back pain but for the past 5-6 months I’ve been in constant debilitating pain. I already deal with other chronic stuff – asthma, IBS/gastritis, etc. But, EVERYTHING hurts… I’ve got the chronic fatigue and many other symptoms nonstop 24/7. It’s affecting my life a great deal and I just want an official diagnosis for closure sake. Thanks for this article and helping connect me to a whole new community of #warriordivas.

  • Holland Kennedy

    Loved this.. I have Sjrogren’s Syndrome, another invisible autoimmune disease, (and after reading about your 5 week migraine I’m wondering if fibromyalgia is a possibility :/ ) but I totally relate to being at the mercy of your own body. I’m 20 years old and I just know I do not have the same amount of energy as some of my peers. I feel like a little old lady a lot of the time. I’m so grateful for my SO for understanding when fatigue, achiness, or anxiety takes over. Because it is so real. Yes, we gotta laugh about it. Stay strong girlfriend

  • Martine Heyes Smith

    I wrote this just the other day…on a “bad” The kind of day when you just can’t anymore but your body follows you.
    “I decided that I wouldn’t give up and by body didn’t agree.
    I told myself to keep on going that People depended on me
    Try as I might, this pain I try to fight. Which one of us has the upper hand when the result is an ongoing darkening night?
    Who knows the why of this plight that I face day and thru the night?
    Some may question if it’s real – to them I say for you to feel one minute of what I face as reality – the way of life I knew it did steal from me.
    Not one moment do I wish on thee to be the reality of me.
    A cure I pray but I might just take one hour not one day I ask to be the me I used to be.” Martine
    Thank you for helping me copes today. God Bless You

  • gfy

    I hesitate to share my comment here about what has helped me, both because it might be dismissed or eye-rolled as an oughties fad, and because it is a truly radical solution, but… going on a %100 live food diet (80/10/10 specifically) has helped me soooo much. A radical transition based upon a radical solution. Just offering that up for whoever might be desperate enough to try it. Give it a month, or even better, do one of the retreats given by Dr. Doug Graham. It is not going to be everyone’s cup of tea but it works for me.

    • Lindsey Murphy

      So like a raw vegan diet? Is that what a live food diet is?

  • 張民傑

    I am so sorry for all you and Lady Gaga suffering from fibromyalgia.

    Fibromyalgia is not always so typical as ACR description. its always many of sub type,In my experience there are over 10 percent female (age between 20 to 80)suffered from sub type of fibromyalgia ,symptoms such as headache,migraine,dizziness,neck stiffness,frozen shoulder even extend to forearm,low back pain,upper back pain,bilateral low abdominal pain ,lower abdominal pain sometimes the pain will extend to thigh even lower leg ,and foot,numbness of extremities,chest distress,palpitation,epigastric pain,bloating,constipation,diarrhea,general malaise,insomnia,urine frequency even urinary incontinence,dry eyes,…….for more 10 years even more…all image and scan, lab test are normal, every doctor:orthopedist,rehabilitation,cardiologist,gastroenterogist,neurologist,gynecologist, all say :you are normal. at last you are introduced to psychologist,your children and husband cannot understand what the situation is.

    I know its real,lt is miserable no body can understand unless they are suffering.

    1976 Dr P.K.Hench used the term fibromyalgia described chronic widespread pain the above symptoms can anchored a name.since 1976 till now.

    no exact cause,no exact diagnosis,no exact treatment.

    I am a family physician and gynecologist in Taiwan Kaoshium Ciao Tou,

    I have being treated hundreds of sub type of fibromyalgia the symptoms above for a few years,the improve rate about 70 percent to 90 percent. Patient’s satisfaction rate are over 80 percent; even to 100 percent.

    God bless you. praise the Lord..
    Dr. Min jei chang 30th Sep.2017 In Taiwan .ROC

  • Meredythe Clark

    i have had fms for 25yrs, i have run the gantlet!! got diagnosed fairly early in my case, but most of the treatments, were counter productive, excersice?lolol!! male doctors love to say this!!, they think we are just hormonal, or imagining the pain. it has gone from being psychological, but in recent yrs, it has been seen as nuero physiological. the biggest pain on top of all the symptoms is that people do not think you are ill, and they whisper, and laugh, and trauma of any kind will cause a flare!! so after 25 yrs with the same company, i could not take it any more!!!the brain processes all pain the same, and i didn’t respond to the normal run of drugs, i take ibuprofen, i take an anti anxiety drug, i take an antidepressant a high bp drug, and a rx for something i don’t remember anymore just that the hi bp drug leeches it out of your body and you have to replace it, or you could have a stroke? i used to read all the info about any drug, i don’t recommend it you get maniacal and anxiety. so i am still in pain, the meds made it more tolerable but doesn’t cure it , and if i flare nothing helps just gotta bear it till it subsides, one of the things that helped me was a help book about fms, some of the things helped if only in my head!! good luck ladies!! hugs!!

  • Jeanie

    I don’t have much to offer except if anyone is interested, there’s a trainer online that also has fibromyalgia who offers some advice on workout with fibromyalgia. His site is eatrunlift.me. I’ve gotten a few of their ebooks, but I believe they also do online training where it’s more personalized. I’m thinking someone might be interested in a trainer that knows what you’re going through. I’ve had times where my knees are inflamed and in a lot of pain due to chronic injury but it’s not obviously visible either. I have friends laugh or get annoyed as if I’m being a “princess” or they don’t believe my warnings and are too rough with me during school physical activity and cause my knee cap to twist and pop in and out. So, I can relate on a small scale. I imagine having fibromyalgia is like that but exponentially worse and more constant.

  • Debra Parker

    20 yrs ago after 5 yrs of living in silence with this excruciating pain (I don’t get sick, it’ll get better, I’m tough) I finally got diagnosed with fms. But back then nobody believed in it least of all me. However, I went through the only treatment plan then which was antidepressants. I didn’t know I was very chemical sensitive, everything sensitive & every drug laid me out on the floor for a week. This was all following ross river, glandular fever and barmah forest virus. I know how much pain I was in then but never made the connection. I feel stupid. I also had 3 car accidents. I was hit hard but I thought they had just affected me badly for a week. Now I have arthritis in my neck & my c4 and c5 stuck in my spinal chord, there is a lot of degeneration. But then there’s all the rest. As I discovered each I thought I had finally found out what was wrong with me but alas they are yet more symptoms not the real deal. After the medical merry go round I had the bed merry go round, couldn’t sleep on any of them. I had no idea there were so many chemicals in beds & no idea I was so allergic to chemicals, then the house merry go round, had become so chemically sensitive I couldn’t live with the paint on the walls or the floorboards, I ended up homeless for 5 yrs because of, many many expensive environmental doctors later & I discovered myself with U.S. tests, then my doctors had to get off their ass & test to confirm I have addisons disease, thyroid problems, liver & kidneys dysfunctional, many many toxicities, calcium is 1875% of what it should be in my tissues so no surprise I have osteoporosis, 2 yrs ago I found out I have lyme, 3 forms of mycoplasma, SIBO, molds, still the barmah forest, & many toxicities. Everyone has walked out on me. Nobody believed in it back then, barely anybody now. I have certainly changed, a shadow of the person I once was. The sensitivities is a big problem. I can’t go anywhere with anyone, even the beach & its plants, carpets, shampoos, washing powder etc. My life is only TV & pain. I have been very proactive in trying to find out what is going on, spent decades on meditation & personal growth in the absence of a diagnosis. But it seems all pointless when there is no cure. Some think lyme is the real problem. I can’t even get anyone to see me about my neck. I’ve been on morphine for 2 decades. I’ve lost my whole adult life to pain waking from a drug induced sleep at 3 am every morning screaming in pain. My life before this wasn’t that great. I also had a rough childhood or no childhood but that is nothing in comparison to this. There is no future.

  • Slee

    Please check out this site. It is for chronic illness and has cured many. https://www.curablehealth.com/

  • Meredythe Clark


  • Jack

    My fibro went down 65%-75% since I started swimming 3 times a week (it’s magical for muscles and nerves), and started an “alkaline diet” (very, very important). The only medecine I take is Laroxyl 40mg.

  • Thank you for this post. I have fibromyalgia and Ulcerative colitis, only diagnosed 2 years ago with fibro and 8 with UC. I am currently in and starting to come out of a 27-day flare-up. At the time, Lady Gaga came out with this Tweet, I understood how she felt, but only having had a 3-day flare-up at that point, I didn’t really get it until now. I had to laugh at a few of the things that you said, about layering pain creams and using plastic utensils. I remember a time recently when I was at Olive Garden with some friends and all of a sudden I couldn’t pick up the fork. My friends supported me and I think they believed me, but I get it. I really get it. As a fellow blogger, I haven’t been posting lately and felt so guilty to my readers. Ironically I just posted about why I’d been MIA, today, which is how I found this post. Thanks again for bringing this silent condition to light. Hugs to you and I’m proud to be a spoonie, (I had no idea that was a thing!) xx


  • Chris Gravgaard

    Did you know its a sign of mercury poisoning, there is a cure, and its called chelation.
    This is a crazy condition, but people out there are getting heal by removing toxic metals from amalgam vaccines etc.
    Wish you all the best.

  • Jana

    I am not a doctor, but i believe that all “invisible” illness such CFS, fibro, sjogren are caused by overcome borreliosis or similar infection

  • GooseWellington

    I strongly encourage anybody with chronic illnesses to research TMS/Mindbody Medicine. TMS Wiki, and the books The Great Pain Deception and The Mindbody Prescription are all great places to start, as is the app Curable, which is modeled after pain programs like the one Mayo Clinic charges tens of thousands of dollars for.

    There are emotional ties to many illnesses, that can cause neuropathways in the brain to hold onto temporary symptoms. The successes are mostly anecdotal, currently, but there are a LOT of them, and several promising studies in the works.

    People are very quick to write it off, but it has helped me rid myself completely of several “incurable” issues, like interstitial cystitis, skin issues, random aches and pains, and MANY others. I can now can turn off random ailments when they happen, by following the program.

    If you have chronic issues and believe in the mind-body connection even a little bit, you really have no reason not to explore it.

  • GooseWellington

    Look into the TMS/Mindbody approach and Dr Howard Schubiner, in particular. I’m serious, there are droves of success stories and promising new studies – I have personally found a lot of success with it for other “incurable” illnesses.