Fibromyalgia Community Leaders Discuss Gaga:Five Foot Two {with video}

Lady Gaga’s documentary, Gaga: Five Foot Two, has been discussed in various fibromyalgia support groups. The discussions range from elation to disappointed with comments to match it. Why is there varying emotions on this documentary and why is the fibromyalgia community taking it drastically different? A few fibromyalgia community leaders discuss Gaga: Five Foot Two during a recent live video. Here is the video along with the resources referenced during the video.

Gaga Five Foot Two discussion #ISFN #beingfibromom #GagaFiveFootTwo
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Fibromyalgia Community Leaders Discuss Gaga: Five Foot Two

In the days leading up to the Gaga:Five Foot Two premiere on Netflix (click here to read the summary and analysis of the documentary), a few of us from International Support Fibromyalgia Network (ISFN) decided to lead a discussion of it. Once all the details were worked out, we reached out to a few community leaders to join the conversation. We had a few technical issues, but Tami Stackelhouse joined me in the discussion. It was an informative conversation and I learned a lot thanks to Tami. Thank you to everyone who watched!

The video was hosted on the ISFN Facebook page, and is here in its entirety video. The resources mentioned in the video are listed below and the corresponding segment of the video is included.

 

Resources mentioned in the video

We had a long discussion (90 minutes!) and many topics were discussed. I’ve watched the video a few times, and broke it down into the following resources. I tried to do my best in breaking up the video to match the various topics (it’s sometimes a pain to watch an entire video just for one part – I understand that). If there was a section in the video and it’s not addressed here, please contact me.

 

Tami Stackelhouse, Fibromyalgia Coach

Tami is not just any fibromyalgia coach, she is THE Fibromyalgia Coach. She is the founder of the International Fibromyalgia Coaching Institute where individuals can take online self-paced classes to become a Certified Fibromyalgia Coach and Certified Fibromyalgia Advisor. On the site, you can learn what a fibromyalgia coach does and where to find one in your area (Find a fibro coach).

In addition to the fibromyalgia coach program, Tami has written two books (click on the links to download a free copy):

Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain

The Fibromyalgia Coach: Feel Better, Change Lives, and Find Your Best Job Ever

 

The part of the video about what a fibro coach does and how to find one:

 

The Fibro Diet Guide

With fibromyalgia, there are certain foods that will help symptoms. Likewise, there are foods that will aggravate symptoms. These foods make up the fibro diet and should be followed if you are looking to alleviate your fibromyalgia symptoms (particularly the stomach issues).

Here are the good, bad, and the ugly foods of fibromyalgia which includes an easy to read guide two printable charts to post in your kitchen for easy reference.

The part of the video about the fibro diet and speculating on what Lady Gaga eats:

The Fibro Diet: The good, the bad, and the ugly #FibroDiet #BeingFibroMom
created by Brandi Clevinger using the image from © Marilyn Barbone at www.stock.adobe.com

 

Invisible: The Film

Lady Gaga’s documentary is not about fibromyalgia, but Invisible: The Film IS a fibromyalgia documentary. Nick Demos, director of the film, works together with producer Pallavi Sastry and executive producer Megan Densmore to shed light on this invisible illness. The release date is still to be determined, but you can visit the Invisible: The Film website to read more about the film, see who’s on the crew team, get updates on the film, and even help with the post-production of the film. Be sure to visit them on Facebook, Instagram, and Twitter.

www.invisible-film.com/

 

Shane Schulz, Speaking to the Heart Radio Network

My good friend, Shane Schulz, owns Speaking to the Heart Radio Network and is the producer of several shows (including mine coming in October!). He also hosts a short video each morning to start your day in a positive way so you can take on life’s challenges as you are. Shane. So, if you need a little motivation to get your morning started, be sure to join him at 8 am EST, Monday – Friday on Facebook at Motivated Strength: ”

www.speakingtotheheart.org

 

Melissa Swanson, Fibro Warriors ~ Living Life

Melissa is the writer and creator of the blog, Fibro Warriors ~ Living Life. In addition to writing a blog, she is also a full time working mom and a published author. Her book, Ravyn’s Doll: How to Explain Fibromyalgia to Your Child, explains fibromyalgia in a way that a child can understand. You can find Ravyn’s Doll on Amazon.

Due to prior commitments, she was unable to join the discussion via video. However, she did share her thoughts regarding Lady Gaga’s documentary in her article Born This Way: Me & Lady Gaga.

 

Fibromyalgia and Pregnancy

Pregnancy can be tricky, but with fibromyalgia it can be a little more challenging. During the documentary, Lady Gaga expresses her want of children, but concerned about what they may do to her hips. This is understanding since pregnancy can cause the hips to spread and Lady Gaga broke her hip in 2012. There are a few ways to approach pregnancy, and Tami elaborates on this subject. She also shares her personal decision about having children.

The part of the video where we discuss pregnancy and how Lady Gaga talks about having kids:

 

Trigger Points vs. Tender Points

Lady Gaga is seen giving trigger point injections during a visit to her physician. Trigger points and tender points (both prevalent in fibromyalgia) can be easily confused, so Tami discusses the differences between the two. Tami shared an article called Myofascial Trigger Points and Chronic Pain when I contacted her for resources on the topic.

The part of the video about trigger points versus tender points:

 

Trigger Point Injections

Trigger point injections are often used to relieve pain in certain trigger points. Here is an article about The Basics of Trigger Point Injections for Headache and Migraine.

The part of the video about trigger point injections:

 

Float Tanks

One of the more talked about alternative methods to relieving pain is the float tank. These tanks are designed for a person to float in a tank full of water devoid of light and sound. The science behind is pretty interesting and some have said it is helpful in managing pain. Read more about Floating Away: The Science of Sensory Deprivation Therapy.

 

The part of the video about a float tanks:

 

Sensory Overload and Fibromyalgia: The Connection between sensory sensitivity and pain #BeingFibroMom #sensorysensitivity
image created by Brandi, Being Fibro Mom, using the image from © vadymvdrobot

 

Questions and answers with Devin Starlanyl

Devin Starlanyl, a prominent leader in the fibromyalgia community and has been recognized as the individual that lead the path for the fibromyalgia community, was asked to participate in the discussion. She was unable to participate in the discussion, but answered questions posed to her by Rick, an admin and co-leader for Men with Fibromyalgia.

Who is Devin Starlanyl?

From the back of Devin’s book Fibromyalgia & Chronic Myofascial Pain: A Survival Manual  (second edition):

Devin Starlanyl specializes in education in the field of fibromyalgia and chronic myofascial pain. She is the past director of the Fibromyalgia and Chronic Myofascial Pain Institute and serves as facilitator for the FMS and CMP support group at a local hospital. A consultant and clinical researcher who assists FMS/CMP patients through FIBROM-L listserv, and Internet support group, Devin also maintains a comprehensive website about FMS and CMP. She is the coauthor of the first edition of Fibromyalgia & Chronic Myofascial Pain Syndrome and author of  The Fibromyalgia Advocate, and as someone with both conditions, writes as one who understands “from the inside”.

 

After viewing the documentary, what affects do you think Lady Gaga and other celebrities who come out as having a diagnosis of fibromyalgia or other chronic pain conditions has not only on those communities and the general population that have no actual understanding of these conditions?

Devin: I didn’t get to see the documentary. I only watched every trailer I could see, and parts of other movies. I am not sure that she HAS fibro but am relatively sure that she has chronic myofascial pain and dysfunction, and may have fibro as well causing hyperalgesia, although she showed no signs of allodynia. I think that any celebrity who has a condition helps to put it in the lens of the public, and make it more real to them, and to doctors and to the patients, who feel validated by having a celebrity share something with them.  I am very concerned that she considered herself “pathetic” and was “embarrassed” at her health state. Her family apparently has a history of autoimmune illnesses. I’d certainly want to look for co-existing conditions, besides the chronic myofascial pain and dysfunction. Fibro doesn’t cause one-sided pain.  I’d like to know how that started in relation to the hip fracture. She may indeed have fibro, but she most probably has chronic myofascial pain and dysfunction. That she enjoys the noise and crowds doesn’t mesh with fibro allodynia, although she has been [diagnosed] with fibro. She mentioned spasms up and down her body. That is not fibro, but could be myofascial trigger point cascades. Or something else. But not fibro. Although she may have that as well.  It just isn’t causing the symptoms that she mentioned, but may be amplifying them.  Again, she mentioned extreme muscle aches. Bloating, Not fibro, but maybe TrPs, and maybe other things as well. Leaky Gut, etc. Don’t know what her diet is like, or her eating and sleeping hygiene.   Again, fibro is not going to cause the muscle spasms she mentioned, but latent TrPs can. I am enthusiastic that she wants to raise awareness but does she understand what she has? Do her doctors?  She may indeed have fibro, but the cause of the pain is not fibro., Her symptoms that she mentioned were not fibro. But I didn’t see the video so I could be missing a lot/  She mentioned feeling like there was a rope in her leg and around 1st rib and shoulder and neck and head.  Contracted muscles?  Taut bands?  Kinetic chains of contracted muscles?

 

As both a medical profession that has treated fibromyalgia and other chronic pain conditions, as well as coping with those conditions personally, you have mentioned that fibromyalgia is generally the result of perpetuating conditions or factors.  Would cases like Lady Gaga, where she is actively receiving treatments that help her continue to do the work she does, be something that can also be made readily available for lower income people who are also afflicted with these conditions?

Devin: Again, much of what I saw was indicative of myofascial trigger points and lack of restorative sleep. Even one of the people in the group mentioned that she could see the trigger point perpetuating factors. I could see the facial asymmetry (eyes, ear height) , which changed from movie clip to movie clip.  Lady Gaga mentioned face pain. No wonder.  She probably has TrPs all over, and active ones on the right side. .  It was difficult because she rarely has un-posed photos, but those high heels are terrible for trigger points. I’d like to check her calves for contractures—actually every muscle, especially on the right side. I’d like to spend a few hours listening to her, getting a good medical history. And trying to figure out the perpetuating factors, and finding out what has been tried and what has not.  Lady Gaga mentioned extreme headaches, and I bet she has quite a few trigger points contributing to or causing them. I think I could see signs of possible upper traps TrPs. The noise that surrounds her has to be awful. But she craves it. That is something to be noted.  The fatigue could be due to nonrestorative sleep, and I hope she is getting a good in-lab sleep study with attention not to just possible sleep apnea but to sleep architecture.  

Is she really receiving help she needs to continue the work she does? It looks as though she might have been getting (autologous ?) stem cell prolotherapy with that  “blood spinning”.. That shortens tissues. If the tissues are functionally lax due to rotation of the muscles due to trigger points, that is not going to help and in fact may worsen the muscle tightness.  What are they injecting into her?  She mentioned using ice packs. That helps with trigger points, especially with nerve entrapment and attachment points, but not fibro. I also wonder if she is dehydrated. How much water does she drink, and how much dehydrating fluids such as alcohol and coffee?  Did her broken hip start this, or did she have trigger points and other problems before?   

 

When a celebrity of her caliber and talent, that lead an active lifestyle, come out as having fibromyalgia, lupus, lyme, RA, or other chronic pain conditions, what effect can that have on the general population that are struggling to receive disability due to a reduced quality of life and the inability to produce a livable wage? 

Devin: It can vary. Again, it in some way validates the patients with that disease. WE don’t; know when the fibro, if that is what it is, developed, nor how well it was treated, nor what was covered with pain meds, alcohol, etc.  What we do know is that she was unable to continue her frenetic pace. And if you know one fibro patient, you know ONE fibro patient. Everyone is different. Again, it is going to be realized that she considers herself pathetic and embarrassed that she is in this state. Not good. But nobody else in my Facebook group caught that. It is the combination of pain sources such as TrPs, CRPS, arthritis, cancer, etc., PLUS the amplifying effect of fibro, that causes disability. And maybe her perpetuating factors for the trigger points can be eliminated. Some of us, such as those with Ehlers-Danlos Syndrome, Barrett’s esophagus, or other painful trigger point-inducing illness are not so lucky. Neither do we have hot and cold running masseuses etc. And the inability to treat and eliminate the perpetuating factors. Lady Gaga’s hovering medical team have not been able to keep her working at the horrendous pace she was working.  We don’t know what she really has. And most people with fibro don’t know what combination of illnesses thy have either.

 

Several Facebook pages focused on the chronic pain conditions have had mixed emotions regarding the documentary.  Keeping in mind that this documentary led up to and ends with the Super Bowl performance, it does not truly address the current severity of her health issues.  Would you say that Lady Gaga and other celebrities do help to put faces to the conditions we face that receive very limited funding for research and come under scrutiny as being drug seekers in an attempt to regain a better quality of life?

Devin: Generally, yes. The CNN clip mentioned fibromyalgia is a musculoskeletal disease. It is not. It is central nervous system–brain and spinal cord. Somebody needs to clue them in on chronic myofascial pan and dysfunction.  We need to get our people, the ones we have trained, to these sites and get them answering questions and spreading the word about fibro and correcting this sort of misunderstanding. It can be an opening to education—for the public, for medical professionals, and for patients.

 

As both a medical professional and author of some of the books that many consider to be our best advocate or the first books they read regarding fibromyalgia and myofascial pain disorders, what do you think we can do to help bring more awareness and funding to these conditions as well as unite a majority of the Facebook communities to create a stronger voice?

Devin: I plan to update my website, with handouts for every specialty. There is no medical curriculum, so I am creating a medically referenced one that patients can hand to their doctor’s teachers, dentists, etc. and use to educate them. That will take all my time, plus the Facebook group.  I’m not good at the funding issue. I don’t even sell my own books. My job is to provide research-backed content and to teach anybody who will hold still long enough, and send them on to teach others. I just need to make that time to update and enlarge the website. I think Facebook is a good conduit for that education, which is why I have the group, but it does eat up a phenomenal amount of time. I also have a rather huge email correspondence, and some letters as well. Each one teach one. Or many. I and see that in my own Facebook. I have people who have been with me for 20+ years. They are picking up the perpetuating factors in Lady Gaga’s documentary. They are commenting in other groups.  We need to empower people, and give them hope. We can do this. I am now getting people coming into the group with the dx of chronic myofascial pain. That would not have happened even 5 years ago. Some still think everything is fibro. Fibro is bad enough. Far too many medical professionals are content to label patients and throw pills at them. And the pharmaceutical companies are glad to oblige. It isn’t that simple. We need team medicine clinics (Such as the Freda Clinic) that will treat the patient, and the cause of the symptoms. That will take reeducating the medical care system in the principles of interactive diagnoses rather than differential diagnosis, because we have more than fibro. We have pain generators. We need help to find them all. We need to re-educate the legal system, and the insurance companies, because their “diagnostic codes” are insurance and billing descriptions, and not diagnoses. We need to enable doctors and other professionals who do TrP injections, dry needling, nutrition counseling, etc. And we need to teach medical professionals that ANY patient who comes in with chronic pain and chronic fatigue MUST have a good in-lab polysomnography, and it is NOT just for sleep apnea but for sleep architecture and other sleep dysfunctions. We need to find the CAUSES of the pain and fatigue and other symptoms. In short, we need to change the way chronic pain-and chronic pain patients—are treated.

 

Other comment from Devin

I think that Lady Gaga needs to re-educate her muscles, and make lifestyle changes including slowing down the horrendous schedule and demands she makes on her body and mind. Her self-esteem may be based on her physical appeal and ability to shock and do “her thing”. She needs to learn that she is more than that, and she needn’t feel pathetic and embarrassed by having a chronic pain condition. That sends a very bad message.

 

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guidecreated by Brandi Clevinger using the image from © saschanti at www.stock.adobe.com

Brandi

Hi, I’m Brandi, the writer and creator of Being Fibro Mom and My Fibro Journal. Aside from my work on Being Fibro Mom, I run a group called Fibro Parenting on Facebook. I've been writing for the Fibromyalgia Magazine since 2016 and recently became the Secretary and Fibro & Families program director for International Support Fibromyalgia Network. Facebook-+-Twitter-+-Instagram

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