Show 244: Q&A on Fibromyalgia, a ‘Kitchen-Sink’ Disorder?

Listen to the podcast or view the video now at http://www.UnderstandingAutoimmune.com/Fibro

The Autoimmune Hour welcomes back Dr. Dorothy Martin-Neville to share her insights on Fibromyalgia and the dilemma of a set of ‘kitchen-sink symptoms.’ Yup, that’s what I’m calling it. That’s what happens all too often when the doctor doesn’t know what else to label your symptoms… they take an easy route and do an ‘everything and the kitchen-sink’ label of Fibromyalgia, doing a disservice to real sufferers of Fibromyalgia.

SHARON: Why is fibromyalgia so hard to diagnose?

DR. DOROTHY: It’s hard to diagnose, I believe, because, one, you can’t see it with an MRI; you can’t see it with a CAT Scan; you can’t see it with x-rays. It is something that exists in the body.
Pain is real. It is physical. Yet, if the doctors can’t find a cause, they would want to believe that the pain is more emotionally caused, more emotionally based. Therefore, there’s nothing they can do about it because they don’t deal with emotions. So it’s just there. It’s this thing that they push in the corner. They don’t know what to do with it.

I’ve also spoken to an emergency room doctor and she’s telling me that many of her associates ─ herself included ─ have no clue what fibromyalgia is. Many years ago, rheumatoid arthritis and fibromyalgia were blended and nobody could tell the difference so many early fibromyalgia patients were just having rheumatoid arthritis.

At some point in time, the doctors developed an 18-point diagnostic scale so that there are 18 points starting at the top of the forehead down to either side of the brain and then down the spinal column to the hips and down the legs.

There are 18 points. If 16 of those that the doctor presses are considered acute and painful, you’re diagnosed with fibromyalgia. We now know that if you’ve got 16 out of 18 that are acute, we’re going to label it “fibromyalgia.”

So the doctors figured “I’ve got this understood. This is what fibromyalgia is. Even though I don’t understand it, I know how to identify it.”

Period. It’s simple. It’s easy. They’ve got it.

Just as with diabetes, we know you have diabetes. The delineation of particular disorders and diseases is very clear and distinct. However, with that put aside, we have these 18 points and you’ve got it. That’s okay.
Patients go into the emergency room and they will say, “My eyes are bothering me” or “My skin is itchy and it’s my fibromyalgia.”

A doctor can’t say “yes” or “no.” They have no clue because that is not at all what they have been told fibromyalgia is, and the patient insists “This is my fibromyalgia.”
Twenty minutes later, another patient comes in and says, “My feet are swollen and my knees hurt. That’s fibromyalgia.” Then, twenty minutes later, anyone patient comes in and says, “I’m feeling nauseous and I can’t eat. It’s fibromyalgia.”

So the doctors are throwing their hands up in the air and saying, “What’s fibromyalgia? We thought we knew what it was based on, as with every disorder and disease, a clear delineation: ‘This is what the symptoms are.’”
If all of those are symptoms of fibromyalgia, how does a doctor treat fibromyalgia?

SHARON: Great question!

DR. DOROTHY: Right! So they’re in this quandary of “I don’t know what to do because I don’t really know what it is.” And, unfortunately, especially now with certain online medical websites, a lot of patients are self-diagnosing. They self-diagnose with every kind of imaginable disease under the sun.

On the Internet, Facebook or someplace, they find out that somebody there has twelve different symptoms and they say, “I have those twelve. They must have fibromyalgia, too. Now, we can join together with fibromyalgia.”

And so, now, they’re reaffirming things that have nothing to do with fibromyalgia and throwing it into this bucket or this kitchen sink and saying, “All of these are symptoms of fibromyalgia.”
For me, they’re really unimportant. The important and unfortunate aspect of this is if you’re told that fibromyalgia is a chronically debilitating disorder that gets progressively worse, and I don’t believe that for a moment.

But if that’s what you’re told and you believe it and then you feel “My bad eyesight, why get it treated? It’s fibro. It’s going to get progressively worse. It’s chronic and nothing can be done for it.”

“Okay, so, now, I also have a bladder infection and that’s part of my fibro. Why bother getting it treated? I already know fibromyalgia can’t be treated and it’s going to be chronic and progressively worse.”
You have all of these other absolutely unrelated conditions that have nothing to do with fibromyalgia; and if you went to the doctor with that bladder infection, he or she would treat a bladder infection and you could be rid of it in a couple of days. If you have problems with your eyes and it’s not fibromyalgia, you would go to the eye doctor and have it treated.

But if it all gets thrown into the fibromyalgia package, you have permission to fall into this emotional state in which you give all of your power away to a disorder that doesn’t even exist in the context in which you see it.

SHARON: Wow! That’s very common with a lot of autoimmune conditions as well. I was having problems sleeping and I mentioned it to my rheumatologist and we had a discussion: Is that menopause? Is that stress? Is that my autoimmune condition?

And it was very eye-opening when she threw out all these other opportunities for someone who was having trouble sleeping and I went, wow, I have to get out of that mindset of everything going into that one label that has been put on me.

DR. DOROTHY: Right! Unfortunately, there’s far more understanding of many other autoimmune disorders than there is with fibro. I’m not saying complete understanding but more understanding.
With fibro, patients are really, as I see, more and more of this. I have my own Facebook page which is Curing Fibromyalgia but I also watch and listen and participate in many other pages. And I find it so sad that a vast majority of folks ─ certainly, thankfully, not all ─ are giving all of their power up. They are just ending up as victims sitting in a chair waiting to see what other symptoms fibromyalgia is going to develop as it takes over their lives.

SHARON: Thank you Dr. Dorothy, for sharing your wisdom.

Learn more about Dr. Dorothy and Fibromyalgia at http://curingfibromyalgia.com/ Use this link to view to video and listen to the complete podcast and then share this link with family and friends:  www.UnderstandingAutoimmune.com/Fibro

Everyone, join me next week for another brand new episode. Have a great week whatever your adventures.
Enjoy!

Add comment

Your email address will not be published.

Join The Courage Club

Join us in the Autoimmune Show's Courage Club, where we bring together top experts and courageous first-hand stories of those with autoimmune to bring you the latest insights about how to thrive regardless of your diagnosis.

Sign up below to be the first to find out about new shows, get the transcripts of previous shows, plus an immediate download of the helpful ebook ‘Five Things You Can Do Immediately That Will Help You Feel Better.’




About Your Host, Sharon Sayler

Your host, Sharon Sayler is a certified executive and wellness coach, communications trainer, public speaker, best selling author, and the founder of Competitive Edge Communications who specializes in teaching professionals critical nonverbal and body language skills including how to have those critical “tough” conversations. She teaches how to up-your-impact on the stage, in the boardroom, with clients, customers, team members and even how to deal with difficult people.

Now, she's taken those skills, her passion for clear and competent communication, her own experience dealing with a rare medical condition and her frustration with the medical community in understanding what it is like to have a chronic and complicated medical condition to teach others to become courageous self-advocates so they too can turn life transitions into triumphs. One way she spreads the word is through the podcast and videocast called The Autoimmune Show: Inspiring hope and help for those with autoimmune.

Thank you for visiting UnderstandingAutoimmune.com. Be sure and join the Courage Club here at UnderstandingAutoimmune.com

Aware of our potential to make a difference, we support:

Topics