09.20.2017

Why Lady Gaga having fibromyalgia is both a blessing and curse for the fibromyalgia community

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This article was originally published on NationalPainReport.com. It is being republished here with permission from the editor. 

Last week, pop star Lady Gaga confirmed via Twitter she has fibromyalgia. The announcement came as part of the publicity for her upcoming documentary, Lady Gaga: Five Foot Two, debuting on Netflix on Sept. 22, in which she shares her life with chronic pain.

USA Today, People magazine, CBS News and other mainstream media immediately picked up on the announcement and published articles about Lady Gaga’s new diagnosis, likely reaching an audience of people who may have never heard of fibromyalgia. It’s a huge win for fibromyalgia warriors who have been struggling to be seen for decades.

Why Lady Gaga having fibromyalgia is both a blessing and curse for the fibro community | Fed Up with Fatigue

Without a doubt, having someone of Lady Gaga’s popularity who is publicly sharing her life of chronic pain is going to give a major boost to fibromyalgia awareness. It’s the equivalent of when Michael J. Fox announced he had Parkinson’s disease or when Magic Johnson went public with his HIV diagnosis. More people will now have a basic understanding of what fibromyalgia is.

It also lends more credibility to an illness that’s still considered by some to be a wastebasket diagnosis.

My hope is Lady Gaga’s documentary will give an accurate depiction of what it’s like to live with fibromyalgia. I so want her to be the ambassador we’ve needed for many years. Hopefully, too, she will be open to using some of her financial resources to fund future fibromyalgia research.

All that being said, her public acknowledgement of her diagnosis will likely be a doubled-edged sword. She will face the same scrutiny nearly all of us have. The truth is she doesn’t look sick. Not one bit. In fact, when she’s performing on stage, she looks downright fierce and unstoppable.

And therein lies the problem. Because she appears healthy, it will send a message to some that fibromyalgia is no big deal – that it must not be the debilitating condition so many of us claim it to be.

How many of our family members, friends and even doctors will watch Lady Gaga perform on the next music awards show and think, “Well, if she can move like that with fibromyalgia, why is my [wife, mother, friend, patient, etc.] claiming she can’t even get out of bed [or work or clean house or whatever activity that’s too difficult because of having fibromyalgia]? She must be making it up!”

We are in a situation where we desperately need more awareness for fibromyalgia so that it leads to better understanding, more research and ultimately effective treatments. But does Lady Gaga convey that as she tours the world and performs her choreographed dance moves night after night? I guess we will see.

Update: As you may have read, Lady Gaga was hospitalized in Brazil on Sept. 14 for severe pain and has postponed her European tour. Sadly, critics have already accused her of faking her illness. Please join me in sending healing thoughts to our fellow fibro warrior for a speedy recovery. I hope her doctors will be able to bring her flare under control as quickly as possible.

Now it’s your turn: What would be your best advice to Lady Gaga as she undergoes treatment for fibromyalgia? Do you think her diagnosis is good or bad for the fibro community in general? 

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Comments

  1. KathyTweety says:

    I’m sorry LG, but your money helps you with your pain. I have FMS, CFS, PI, and AS. lots of pain and fatigue. I do take Guaifenisin for my FMS and if helps me a great deal. I have been on it for at least 20 years now. I really do wish that more would try GUAI. If I didn’t I really wonder what shape I would be in now. I’m 69 years old and still try to as well as I can, but like most I pay for it afterwards. But I don’t want to give up yet.

    • I believe that Lady Gaga can bring awareness to this disease that millions are dealing with. I hope she uses her platform to help this cause. I use Kyani and it has helped in a matter of just a few weeks.

  2. Maureen says:

    Donna, Thank you for making us aware of Lady GaGa, her condition and her setback.
    Initially I said to myself…how does someone do all that she does and have FM?! She’s incredible!
    But obviously she has her ways and a team to help her along her way. I feel that it is a good thing that she has come forward re: her illness BUT I do hope that she continues to reveal her setbacks and sufferings for the world to understand just how she maintains her career with living with FM and that is not easy.
    I for one would love to know. She has to rest for long periods after her tours??
    I just went through Hurricane Irma here in Fla… I amazed myself that in spite of how my body was doing… I continued to force myself to do a lot of physical work to prep the house for several days and then clean up the damage afterwards all last week. I had to do what I had to do…but this week I am suffering greatly.
    I imagine that’s what Lady Gaga’s life is consistently like…but on a much bigger scale?!

  3. I been sick for 17 yrs with Fibro. I was initially told not to move around much, blah blah. I finally took my health into my own hands. I work out every day now. I lift weights, power walk, swim, cycle. Yes, it sometimes,exhausts me, yes I’m in pain, but the more I work out the less the pain! Why was I lied too for so many years?
    So I understand Lady Gaga. No one would ever believe I have always been in so much pain, have trouble sleeping & am exhausted most of the time. Excercise has changed all that thogh for the better. And going Vegan was the very best thing I ever did for my health.

  4. Roxanne Moranty says:

    I pray that Lady G gets a very good doctor and friends who believe her. I’ve had FMS CFS for about 18 years and I still have difficulty with good care reaching out to various doctors. Seen so many specialists and no help. Last few years I have had issues swallowing and intestines that don’t work (have to do extraordinary things to go). I have psoriasis on my scalp. Allergies have gotten worse and asthma. They say Fibromyalgia is not a degenerative disease but it’s not the case for me and for which I’ve not gotten an adequate answer. I’ve lost strength in my legs and have fallen 3 times from May through July. I’m 54 years old. It’s hard when your peers are out with family and other friends, posting fun photos on Facebook and you can’t do nearly the same thing. I hope that having a woman, that has International following, can shine a light into this terrible disease and let the world see we need to do something big about it. God bless Lady G. and her efforts.

  5. I have fibromyalgia and Systemic Lupus Erythematosus so like Lady Gaha I am in pain all the time. The pain levels vary depending on if you’re having a “flare-up” and it’s these times that the pain is excruciating and no medications that you normally have give any relief. I end up bed bound and have to take the highest dose of my pain meds that I’ve been prescribed along with a sedative. When I’m not having a flare- I keep myself, my mind in particular to keep it off the pain, busy with reading, light physical activities, ancestry of my family, walking and playing with my dogs, gardening and other things that you enjoy. At night I take a prescribed pain medication so that I have enough pain relief to get to sleep. I also use an acupuncture pad under my back when initially getting into bed, sometimes a heat pack. Regular stretching of your muscles daily also helps even if it is painful when doing it. If you are having a bad day when you’re really fatigued and in pain, I just go to bed and generally find I sleep the day away snuggled up in the blankets. A healthly diet along with all this is also important.

  6. Lori Lynn says:

    Hello, I am very new to this issue. Recently 42 & diagnosed w/ hypermobile, arthritis of the neck, & all caused fibromyalgia. I have been in pain all my life and shoved to the side @ doctors and hospital visits. This maybe a great thing, my children have always called me supermom, which is amazing to me & lately I have been in bed from exhaustion and pain. We all need some relief as well as our families.

  7. Dagmar MacQueen says:

    I think it will raise awareness and understanding and hopefully attract the sort of funding that AIDS/HIV did. The only way we are going to get better help from this condition, that doesn’t show, is if all the health agencies around the globe and all the complementary health disciplines co-operate with knowledge and research. And that the medical powers that be give some priority After 10 years of this disease I personally yoyo between denial/hope/despair and then suffer shame for being self pitying and useless. I am lucky in that I am retired and have friends and family who understand. My heart goes out to those struggling with employment, benefits and child rearing on top. God have mercy on us all

  8. Ellen Saville says:

    I am really sorry that Lady GaGa has this illness. No one should have to live like this. I am 71 years old and have had it since my 30s. It has gotten progressively worse as the years go by. I think Lady Gaga might be able to get some real research done and maybe find the cause and then, if not a cure, then a better way of living with it and better acceptance. My concern is I have read about her having Fibro and she talks about the heat spa and the ice treatment and now she is in the hospital. I believe most of us cannot afford these kinds of treatments and I know nof no one who has been admitted to the hospital for Fibro. I know for me I have tried every medication made for Fibro and have had very bad results. I am now on Norco and find this seems to help me have some resemblance of life. Although the Chronic Fatigue keeps me down more than up. If I could offer Lady Gaga some advice it would be to fully accept your illness, encorporate it into your life and, most importantly, keep your sense of humor and listen to your body. If it says stop, then stop. I wish her the very best and pray that she will be a great Advocate for us.

  9. Constance says:

    Fluoroquinolone antibiotic toxicity, vitamin D deficiency, MTHFR polymorphisms, food sensitivities and autoimmune thyroid disease were/are contributing factors to my fibro symptoms. I do hope that she seeks a healthcare provider who will encourage her to dig for root causes and help guide lifestyle changes instead of simply prescribing drugs. None of the meds ever helped me without causing another problem. I do hope she finds the practical help and encouragement she needs from the fibro community. We all know what it feels like to be ill treated by people who do not understand (or care).

  10. Mary Batham says:

    Yes when I’m to do something I love or is a must my adrenalin spikes like someone going to battle. After awhile I crash I fold in on myself and suffer from all kinds of pain. Yes if you can afford specialized massage therapists other costly treatments that help yes we all could go farther. Well she can and good for her! Get out fight do what you Love. We all have to learn how to use what is available. Unfair of course but as long as self serving ceo’s look at only profit it will never be fair. We all have our battles. My own family doesn’t get it completely. But they will. Go Lady GaGa and fight your battles the best way you can

  11. I have learned by experience during my 16 years with Fibro that each person with it has a varying degree of food and/or chemical sensitivities that make the pain much worse. For example, aged cheeses, pickled foods and MSG among others are triggers for Fibro migraines. And scented body products can trigger worse pain. And some Fibro folks also have Fatigue or Chronic Fatigue Syndrome and others don’t. Or some have other pre-existing illness or PTSD that may, together with Fibro, really sack someone in bed. These are the types of variances the public needs to understand.

  12. Diane Kay says:

    My advice would be to give ketoprofen a try. The over-the-counter name is ORUDIS (12.5mg), but I don’t know if it’s available over the counter anymore. Either 50mg or 75mg twice a day. It really helps – – far more than any other NSAID and it is Not Addictive.

  13. Robin Jordan says:

    I truly believe this will help. I just hope she makes it clear she does work through pain.

  14. Dear Lady Gaga,

    Peace, love, and light to you. As a writer, activist, trauma survivor, feminist, inflammatory arthritis and #fibrowarrior I have run the gamut of functionality, discrimination, obstacles, treatments, secrecy, advocacy, hopes, fight, despair … to currently disability and acceptance … The last ten years of my life have been long and very painful but mostly successful and fulfilling. Most recently aging and rheumatoid factor positivity with spine involvement has further complicated and worsened it. The thing that has helped me most overall is knowledge, sharing, pain meds with muscle relaxers, rhizotimies, plaquenil, aromatherapy, essential oils, clean eating, warm pool, steam rooms, sauna, flexible and gentle physical therapy meditation, community, ice and heat, and pacing. No magic cure yet. Learning to live and celebrate small victories when even last year I could do so much more has been a daily exercise.

    I first learned of this disease when a new friend had it in 2003. I had no no idea it was in my future. My heart goes out to you. Like me and all of us here we have worked really hard for the lives we have built and the unfairness of the toll it takes is not lost on any of us. The only wisdom I have gained is learn gradually and as often as necessary to do things differently and love your temple deeply while choosing your company carefully.

  15. Rosanna Perrigo says:

    I too believe it can be a double edge sword with those that are so visible such as Lady Gaga speaking out. Those of us in the know, can speak from experience…. We each walk our own journey. Lady Gaga has many resources that many of us do not have at our disposal. My hospital never would consider hospitalization for fibro pain. It’s a quick morphin shot and addios. I wish all the best to Lady Gaga and to ALL my fellow fibro warriors. May we all one day have freedom from this cage we all live in.

  16. Connie C says:

    I would not wish this illness on Gaga or anyone. I myself wonder how she can perform at such an intensity every night on tour? Is she pumped full of pain meds? How does she do it? Pushing through, in my world, means running two errands in one day! I fear this may be a double edged sword. Yolanda Foster had all the financial resources to heal herself of Lyme disease. Lady Gaga may, because of her resources, be able to heal as well. I feel we’ll all be left here, struggling, as we don’t have their resources. I wish her the best and healing blessings. I pray she will find relief as quickly as possible.

  17. When I first heard the news my first thought was “How the heck can she perform like that with Fibro? I have a hard enough time trying to work part time and keep up with my work around the house!” First of all she is younger than me, I am 45 and each year things get tougher. Also, with her money she can afford the best medical care, diet, daily massages, housekeeping services etc. My family still does not fully understand the magnitude this disease has on my life and what it feels like to be in pain all the time at varying degrees. I hope her documentary really shows the world how debilitating and frustrating this disease really is for those of us who suffer with it and not backfire on us.

  18. Jen Stafford says:

    I truly am sorry to hear about Lady GaGa’s diagnosis, fibro is awful. She’s such a strong woman, if you’ve ever seen her perform, she’s an athlete. The fact that fibro took her down to the point the she needed hospitalization shows how debilitating fibro is. Constant pain is absolutely draining, anyone who denies fibromyalgia’s existence is an idiot. There is not enough research done on fibro, maybe GaGa’s diagnosis will bring this disease out of the shadows. Healing wishes for her recovery from this flare.

  19. Donna G. says:

    She’s got enough money, maybe she can find some REAL answers that will help all of us.

  20. Suzanne says:

    Ms. Gaga was hopefully born in a time where this dis-ease will be more understood. However, in saying that and fast approaching my sixth decade, where I have been this way most my life, I still get the inquiring looks from those who claim I am making excuses or malingering just by saying Fibromyalgia. When I wince in pain on the job, I tell folk I have arthritis and leave it at that. Metaphorically, I’m a soldier. I can’t wait to be officially retired. Yes on my good days, like Gaga, I can be fierce, run, jump and dance like there was no tomorrow but when tomorrow comes watch out! Anyone who suffers have to find their own path; what works best for their body, lots of learning, reading, watching others. Learn to be still, but most of all enjoy the good days and be grateful for all your blessings. Cheers!

  21. E Booysen says:

    One always feel sorry to hear if anyone has fibro. I’ve had it for 27 years. The last years was downhill at a very fast pace. Very bad, very severe. The fatigue at times unbearable. There is hope! I still have bad flare ups, but LDN truly gave me such better quality of life. You learn to cope with all the struggles, but to find much relief in pain is wonderful. I do a lot to eat what I know is best for me and avoid the rest, I use very good supplements and try to take a walk from time to time, because most exercise I can’t do because of a serious car accident long ago. I am still teaching though it is very hard to keep up with it. It give meaning to my life. After many years I find only this to keep me going.

  22. Hi Donna,
    I sooo appreciate your articles – thanks for all the work you do. You are a blessing to so many people!
    My prayers go out for Lady Gaga. That she can find much needed relief and that people stop being jerks to her by accusing her of faking her illness.
    In one of her tweets she talked about using infrared sauna for relief, so I want to I want to share some advice for pain relief that relates to that. It’s about using a special type of fiber called celliant fiber, that was developed to help athletes recover more quickly from injuries. It turns heat from your body into infrared light energy. Many studies have been done that show this is beneficial to healing. You can check out celliant technology at celliant dot com. It’s used in many products, such as sportswear, socks, sheets, pillow covers and even a mattress. Adidas uses it in sportswear.
    I’m a fellow fibro warrior and want to share that I purchased a Bear Mattress (which uses celliant technology) I am not affiliated with any company. From the very first night, I noticed a big difference in my pain levels and endurance during the day, before pain becomes too much to bear. My recovery each night is greater than at any time before and I sleep better too.
    We were away from home for a week and my fibro symptoms went right back to being incapacitating when I couldn’t sleep on the mattress. When we returned home, once again, from the very first night I got better.
    So I believe that celliant technology would be a boon to many people who suffer from fibromyalgia. The difference it has made to me has been significant. I am much more functional and able to accomplish more during the day. It’s not a cure all. But, as you know too, anything that lowers your pain levels is a huge boost to making life better.

  23. Aidan says:

    I believe in time she will be told she has Ehlers Danlos Syndrome type 3 Hypermobility & possible crossover multiple types like so many others have now…

  24. Bonnie Hammond says:

    Hi- I have tried all the drugs suggested for FMS (diagnosed over 20 yrs ago.) and the only thing they did for me was make me tired and sleepy no matter what time of day I took them. But I can honestly say the only thing that helps me is swimming and exercising in a pool. Not particularly water aerobics but exercise specifically designed for FMS. I usually spend about 30 – 45 minutes excersing and then 30 min.swimming. Then hot tub if they have one. This is truly the only thing that actually helped me stay mobile. Hope this helps.

  25. My first comment would be I am so sorry about your diagnosis. If you need advice, or a shoulder to lean on, call me- I am a fibro warrior of 20 years. Just as you have been a warrior for the LGBTQ society, please be a Monster Warrior for Fibro! We need a voice so badly. Because I have seen so many ridiculed over and over by the medical community & society alike, I have suffered in silence for 20 years (and I am a medical professional!)
    May you remain strong and brave and healthy.
    Forever a Fan

  26. Lady Gaga is in my prayers. This is a horrible illness. Judgements, and isolation. You ARE NOT ALONE!

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