Men and Fibromyalgia. It is real, underdiagnosed, and undertreated.

Episode 15 - Men & Fibromyalgia. It is real. Underdiagnosed and undertreated.
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Although fibromyalgia affects more women, about 10% of fibromyalgia patients are men. I think it is underreported and underdiagnosed.
This episode covers how fibromyalgia symptoms differ in men and women. Then we will discuss the impact of Fibro on men's lives, relationships, and interactions with their healthcare providers.
Often, feelings of shame, embarrassment, and unworthiness drive the lack of seeking help and treatment. This is so far from the truth. Men are worthy of feeling better, and many treatment options can help.

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Disclaimer: This podcast provides information only and does not provide any medical or psychological services or advice. None of the content on this podcast prevents, cures, or treats any mental or medical condition.

Transcript

episode #15 Full transcript. 

Today we are switching gears a little, and I am doing a special topic per request of my clinic's partner, Dr. Charles Moore, who asked me to discuss how fibromyalgia affects men. He estimates that he diagnoses about one man with fibro on average per week. 

Of course, all rheumatologists diagnose and treat men with fibromyalgia. 

I still remember my first male patient with fibro when I was doing my rheumatology training at the Mayo Clinic, and he had some of the most severe symptoms of fibromyalgia I've seen. Years before, this man was in a terrible accident and later developed fibro that, with time, progressed and was quite disabling. His symptoms were unrecognized because he was a man, and he was left undiagnosed for years. It was disheartening to see this grown man cry in my office. 

Although fibromyalgia affects more women, about 10% of fibromyalgia patients are men. I think it is underreported and underdiagnosed. Per one study, twenty times more men appeared to have fibromyalgia based on their survey response than had been diagnosed, while three times more women reported fibromyalgia symptoms than were diagnosed. 

I think there are many reasons for such a difference. Some conditions are more common in females, not only fibromyalgia, but migraines, IBS, thyroid, and autoimmune conditions, for example. Women also have a lower pain threshold and resilience to stressors. Hormones play a role, as well as the general nervous system makeup. 

According to one study by the Cleveland Clinic, close to 60 %of men don't regularly see a doctor, going only when they are seriously ill. I've been told by many male patients' wives, who said to me that they had to drag their husbands to see the doctor. I worked in the VA or Veterans Affairs Emergency Department for years, and I can tell you some stories. I mean, men are tough, but veterans? Tougher! 

The survey also found that only three in five men get annual physicals, and nearly half of the 500 men surveyed said their health is simply something they don't talk about. Only 7 % reported talking about their health - meaning the other 93% do not. 

Also 

• 72 %of men said they would rather be doing household chores, like cleaning toilets, than going to the doctor.
• 65 %of respondents said they avoid going to the doctor as long as possible.
• 20 %admitted they aren't always honest with their doctors about their health.

So no wonder men also die sooner, live with more years of bad health, and have higher suicide rates. 

So, in the past, fibro diagnosis required tender point count, where doctors would check 18 specific spots on a person's body to see how many of them were painful when pressed firmly. At least 11 of these 18 points had to test positive for tenderness to diagnose someone with fibromyalgia officially. Though the criteria changed and tender points alone are no longer used to diagnose fibromyalgia, women, in general, tend to have more tender points than men. So if your doctor is still checking for tender points for the diagnosis, your fibro may be missed. Some studies also show that men also have less "all over pain" - again, a common way doctors describe fibro. So you may have fibro without pain all over and no tender points on the exam. 

Our general societal belief is that a man needs to seem strong and "tough it out." men may feel they're "not supposed to complain about pain," they have to be stoic, which may delay or prevent a diagnosis of fibromyalgia.

So here is the dilemma in diagnosing men with fibro. If men don't talk about their health and symptoms, if they don't go see their doctor, and when they finally get to see one - they are less likely to be diagnosed with fibromyalgia because they are not tender all over on exam. Also, it is often assumed that fibro is a girl-only disease, so many doctors don't even consider it. 

Well, listen up, men - if you listen to this podcast. Or probably women, who are more likely to listen to podcasts and see doctors... so please listen and tell the men in your lives. 

Fibro is real. Male Fibro is real. There is no doubt. 

If the United States military, the VA, gives disability benefits based on the diagnosis of fibromyalgia -it must be real, right? No doubt it is real, and men can have this diagnosis. 

So we are going to cover how fibromyalgia symptoms differ in men and women. Then we will discuss the impact of fibro on men's lives, relationships, and interactions with their healthcare providers. 

So what are the risk factors of developing fibro in men? Actually, aside from gender, very similar risk factors to women, with major being chronic pain due to any other condition, a close relative with fibro – like your sister or mother, for example, sleep issues - this is a big one - sleep apnea. Obstructive sleep apnea (OSA) is far more common in males than females and is a common fibro trigger. Chronic or persistent stress, trauma, injury, PTSD. Obesity. 

Here is a scenario I've seen in my practice in several patients. 

A male patient in his 40s or 50s, with years of preceding stress, often overweight, caretaker, father, and a workaholic. He had trauma such as a work accident, car accident, medical complication or painful procedure, a stressful event of some sort, like a divorce or loss of a spouse or a child; injury often needed hospitalization or surgery; followed by a lengthy rehabilitation, loss of function, and maybe even a loss of employment. Anxiety and depression often either preceded the triggering event or developed later. Sleep is disturbed. So the initial injury or surgery healed, but the pain persisted and, over time, evolved to more widespread, persistent pain that may come and go, have a good and bad day pattern initially, but later likely to progress to the constant pain by the time it is diagnosed. Men tell me they have bad and worse days, almost never good days. 

I often hear men tell me - they have an explanation for everything, of course, I am in pain - I had an injury, surgery, trauma, etc.; I can't do anything about it. I am stiff because I don't move. I gained weight because I stress-eat or eat out of boredom, I don't go anywhere, and I can't exercise because of pain... Now I am depressed because I can't work. I have anxiety because I cannot support my family. I worry too much or have sleep apnea, so I don't sleep, and I am too tired to think clearly. And this runaround, mental work of explaining symptoms in their head, not telling the family or doctors they hurt may go on for years. 

At work, they don't complain - because they look fine, they look like nothing is wrong, they have to be strong, expected to perform. At home - they don't want their wives or mothers to worry.  

But underneath all of this are often feelings of shame, embarrassment, and unworthiness that may drive the lack of diagnosis and treatment.

Now, keep in mind there are fewer studies about men with fibromyalgia. But in general, symptom-wise - men have fewer symptoms than women, yet they are more impactful. They tend to feel less exhausted and less pain in fewer places. It's much less common for men to hurt all over. They still have pain but may or may not be all over. They may or may not have the tender points, like women, but I had men in my clinic that felt tender when I touched them during their exam. Men have a higher pain threshold. As with women, the longer they have had fibro, the more pain and tenderness they usually have. 

Men do not have IBS or irritable bowel syndrome as often- they may or may not, but women almost universally have bowel issues. Often though, they can dismiss upset stomach, bloating, or constipation to something they've eaten. But in general, I see IBS more often with women. 

In one study, the top symptoms reported by men with fibro are 97% depression, followed by 76.9% widespread pain/tender points, and tiredness and sleep disturbances 75%. 

Many complain of the effect of fibro on their mood - especially anger issues and increased irritability. This is understandable - when women have depression, there feel/act more sad and are likely to appear sad or express sadness. Men, on the other hand, maybe more angry, irritable and aggressive when they have depression. They may be suppressing their feelings more cry less, but deep inside, they may feel sad and depressed; they appear quieter, more reserved, laugh less. 

Feeling tired or exhausted and fibro fog or inability to concentrate are common. A salesperson who did numbers in his head now has to use a calculator to just add simple digits. Another patient quit his job because he could not remember procedures he used for years and felt embarrassed 

Overall, men with fibro report more severe symptoms than women with decreased physical function and lower quality of life. I suspect it is likely due to a delay in the diagnosis and treatment. The longer men put off seeing the doctor, the more they put themselves at risk of developing worsening symptoms and complications that can affect their work, hobbies, and relationships. And it's not just fibro, but other chronic diseases as well like diabetes and high blood pressure. 

So we talked about the triggers, the symptoms, and the diagnosis. 

Now let's talk about the impact of fibro on the quality of life. 

I see in my clinic what I also read in the literature. 

Men's identity is more tied to their ability to work than women's. Women tend to wear many different hats and identities; men often find self-worth or value in their job. Fibro pain can interfere with job performance. People aren't nearly as sympathetic toward men with fibromyalgia at work. Men told me that their jobs often require them to 'suck it up and deal with the pain.'" Or they have to work regardless of how they feel; they are the breadwinner. So not seeing a doctor or being treated provided the illusion that everything is OK and they can continue to work. 

They don't look sick - so it's not real. Many of my patients tell me, both women and men, that their family, co-workers, or friends, don't believe that fibro is real or ask them to shake it off, just get it over with. 

So men would often feel not being respected by co-workers, family, and health care providers due to the questioning of their pain, they shut down, withdraw and that also may lead to the delay in diagnosis.

 It builds up resentment and leads to more irritability and anger. 

In my clinic, many men with fibro accepted the fact that they would never recover. They gave up. They tell me "I am broken" and have an "I can't be fixed" mentality. It's almost like there are only two possibilities - denial - living like everything is OK, vs. it's all over, nothing can be done now, why bother. Often, I see that patients' self-reflection changed due to pain; they don't see themselves as before, are not as productive, and don't provide as before to their families or participate or advance at their careers. 

Again, often there are feelings of shame, embarrassment, and unworthiness that drive the lack of seeking help and treatment. This is so far from the truth, they are worthy of feeling better, and there are many treatment options that can help. You are not broken. You have never been broken or damaged. You need to heal your nervous system take care of yourself.

So what can we do to help men with fibro? 

I would say #1, set up a relationship with your doctor. Let your primary care get to know you. Speak up about your symptoms - don't downplay it, don't explain your symptoms, or justify them. You may have old pain from an injury and have fibro. Your sleep apnea and being overweight may cause your exhaustion, or your sleep apnea can be the condition that triggered the development of fibro. Irritability and anger at work could be symptoms of burnout or depression; left untreated, it will worsen the fibro symptoms and lower your quality of life. 

Also, be aware of addictions. Numbing physical pain and emotional distress with drugs and alcohol are so common. If you struggle with addiction, it may be due to self-medication of chronic pain, including fibro pain. When I see someone with addiction, I ask "What happened to you"… addiction is a symptom of pain, physical or psychological; it's only glamorous in Hollywood. 

I want you to take a pause and think. Just simple awareness that fibro exists can be the 1st step toward its diagnosis. Knowing that you are not alone, that many, many other men struggle just like you. It is knowing that you are not broken and so worthy of feeling better. 

Other things you can do. Look at your nutrition and vitamin levels. Many of my fibro patients also have underlying nutritional deficiencies and, even while being obese, are malnourished. Many consume too many comfort foods because they feel sluggish and eat for comfort. 

Many are very low on vitamin D, with vitamin D deficiency symptoms contributing to body pain tiredness. Also, many men and women drink a lot of soft drinks, often with caffeine, with hopes to be more alert, but not only it contribute to obesity, poor sleep, but also poor absorption of nutrients and vitamins. 

Also, treating depression, anxiety and PTSD is extremely important. Mental health affects physical health. Working with a therapist, addressing the issues not only of depression, but low self-esteem, relationships, sexual health maybe scary at first, but so worth it. There are many male therapists available to help – many specialize in trauma, relationships, addiction, sexual difficulties. 

Also, consider working with a life coach. Life coaching is goal-oriented and future-oriented. Look for the well-trained coach, for example, certified by the Life Coach School. Life coaching can help with weight loss, processing emotions, goal setting, etc. It can be a start if you are afraid to start working with a therapist, but it does not replace therapy. 

If you were diagnosed with fibro, it means that you likely had several years if not a decade, of suffering, and you need a team to get you up. You need all the help you can get. What got you here will not get you there, where you want to go. You cannot continue doing the same thing and expect a different result. 

I often give my male patients an analogy that most can relate. Care for your health as you care for your car. Think of yourself as one expensive vehicle - whatever brand you like - Mercedes or Jeep, Corvette or Lamborghini - whatever your dream car is. Men tend to care for the cars better than their health - they wash it, polish the hood, check the oil and the tire pressure, get the tune-up done, and whatever repairs - they know if the car is making noise, they better check it out, the delay may cause a transmission problem or an expensive engine repair. They will never drive a car with a nail in their tire - well, they will not get far with that. 

The point is. Logically, men know that the car will last longer if they care for it, prophylactically do routine maintenance, and fix problems as quickly as they come up. They don't wait until the check engine light is on, or the engine doesn't start, or the oil is on empty to start caring for the car.

So why don't you start thinking of your health from the same perspective? The same thing applies to your health. Go for a physical, tell your mechanics ahem doctor your symptoms, don't pretend everything is well. The sooner you find and correct the problem, the better the outcome will be - and you will likely save some money! Drink water, eat better, quality oil helps the engine running, quality food will keep you going.

Oh, and listen to the women or other significant people in your life! Sooner! Like starting today... They love and care for you. And they want to see you become an antique show-stopper, not a rusty clunker.