Has Chronic Illness Made Me an Introvert?

For the first 37 years of my life, I was an extrovert. I thrived around other people, loved social events, and could talk for hours. When I took the Myers-Briggs personality test for my first job, I was squarely an ENFP (E for extrovert). During high school, college, and beyond, I saw myself as a party girl and loved being with people — the busier my social calendar, the better. Then, on March 2, 2002, I suddenly got sick, diagnosed a year later with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I still yearned for social interaction, but now, even being with my closest friends exhausted me.

Over the past 16 years, with the help of many different ME/CFS treatments, I have improved my overall condition and ability to function. Lately, though, I have noticed that I crave quiet solitude. I need to spend a certain amount of time home alone, or I begin to feel stressed and exhausted. Certainly, I still enjoy time with my friends. I love going out to dinner with my husband and another couple, attending my book group, or taking a short walk with my two closest friends and talking nonstop. But I can only manage a limited amount of social time each week. I often feel desperate for “alone time” without my family or friends around, and that can make me feel a bit guilty. Has chronic illness turned me into an introvert?

Introverts, Extroverts, and ME/CFS

Susan Cain, author of the best-selling book Quiet: The Power of Introverts in a World That Can’t Stop Talking (check out her TED talk), says that introverts and extroverts are defined by how you respond to stimulation — when do you feel most alive and most creative? That’s kind of a mixed bag for me because I do enjoy social interaction (in small doses) and being with friends does make me feel alive, but I am definitely more creative when I’m alone. I need quiet solitude to write – no noisy coffee shops for me!

I recently heard another definition that stopped me in my tracks and made the light bulb go on: it depends on how you get your energy and recharge. No contest there – I love my friends, but social interaction with me/cfs tires me out. I need my quiet alone time to recharge. Famed psychiatrist Carl Jung said there’s no such thing as a pure introvert or extrovert; everyone is on a spectrum. I have definitely moved from far to the extrovert side over to the introvert side now but still with some extrovert tendencies.

How Have Others Responded to This Change in Me?

Susan Cain explains that our world tends to favor extroverts and underestimate the value of introverts. In my own life, I have struggled with my family’s acceptance of this shift in my needs. Some family members are offended that I can only manage family gatherings in small doses. I explain that it’s not personal, it’s the same for time spent with my friends, and I quite literally need that quiet down time. With all my family living in other states, though, any family get-together is a marathon for me, often spanning many days. As you can imagine, this is exhausting for me and affects my me/cfs symptoms, overall health, and well-being, though that is not well understood by others.

What is My Life Like Now?

My tendency is to hibernate at home when I can now, but I do recognize that I enjoy time spent with friends or family, if I can properly limit it. So, I have goals to spend time with friends once a week, to stay in touch with far-flung family members, and to carve out time with my immediate family each week. I also have quiet time that helps to revive me built into each day, for reading, watching TV with my husband, and my necessary afternoon nap. I understand my limits, and I am very fortunate that my friends do, too.

If I have book group scheduled for Wednesday evening, I know I should spend the rest of that day at home and that I shouldn’t schedule anything else social on the days before and after. This means sometimes making tough choices, when I already have one social event scheduled and am invited to another. But I know I can’t do both, and I have gotten better at making those choices. My own personal barometer when I am struggling to decide whether to cancel something is how I feel after I make the decision. If I feel disappointed, then maybe I should still go, but often, when I finally decide to cancel, I feel only relief – then I know that I made the right choice.

I am almost never out of the house in the evenings (except for those occasional dinners or book groups), but my daytime calendar can easily become filled with doctor’s appointments (for myself and my elderly father-in-law), errands, and other obligations. I try very hard to leave at least two days – and preferably three – open each week. Those are the days that I stay home, work on writing projects, and recharge with that precious quiet solitude. Now that I’ve recognized how much I need it, it’s easier to make room for it.

At first, I struggled with this concept that I “switched sides” from extrovert to introvert. Much of my personal identity was wrapped up in being a social, outgoing person. I have realized, though, that it’s best to accept myself as I am now. I do still need a certain amount of social interaction, but I have learned that I can satisfy some of those extrovert needs through online interactions – from the recliner in my quiet house. And clearly, I am much happier, less stressed, and feel better when I make a conscious effort to restore my energy through solitude. Now, I have the best of both worlds!

This article was first published on ProHealth.com on October 8, 2018 and was updated on July 08, 2020.


Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book. 

Is Vitamin D Your Key to Unlocking a Healthy Immune System?

Vitamin D and the Immune System

You may have noticed that vitamin D has been in the news a lot lately. First came reports claiming vitamin D could help prevent coronavirus or at least significantly reduce symptom severity and mortality. Those reports were quickly followed by articles warning that there was no evidence to support such claims. Confused? Wondering what to believe?

The fact is that it’s simply too soon to have definitive answers. While some experts have observed that coronavirus patients who have sufficient vitamin D levels seem to fare much better, it’s still far too early to draw any conclusions.

Although we can’t yet say exactly what effect vitamin D may or may not have on the coronavirus specifically, what we can do is take a good look at how vitamin D supports our immune system in general, and what impact it has on our overall health.

Vitamin D and Your Immune System

Vitamin D is an important player in your body’s immune system, helping modulate both your innate and adaptive immune responses.

  • The innate immune response is your body’s first line of defense. It detects all foreign invaders such as viruses, bacteria, parasites and toxins, activating cells to attack and destroy the intruders.
  • The adaptive immune response is your body’s second line of defense. Triggered by the innate immune cells, the adaptive cells recognize the specific invader then multiply to fight it off and provide protection against its return.

Remarkably, in addition to activating immune cells to combat invaders, vitamin D also has been found to help regulate those cells and prevent them from becoming overactive and attacking healthy tissue, such as happens with autoimmune disorders.

Some additional evidence of vitamin D’s ability to support the immune system includes:

  • An article in the August 2011 issue of the Journal of Investigative Medicine, reported that a vitamin D deficiency is associated with increased susceptibility to infection.
  • In 2009, the National Institutes of Health warned that low vitamin D levels were associated with colds and flu, noting that “vitamin D may play a role in helping the immune system ward off respiratory diseases like the common cold.”
  • Vitamin D has been shown to enhance the expression of angiotensin-converting enzyme 2 (ACE2). A 2006 study found that increasing ACE2 activity may help protect against acute lung injury.

More Vitamin D Benefits

Prior to the pandemic, vitamin D was perhaps best known for its contribution to bone health. It plays an important role in your body’s ability to absorb calcium. When vitamin D levels are low, calcium concentrations are inadequate, leaving you more vulnerable to bone-related disorders. Additionally, vitamin D has a positive effect on other vitamins and minerals that support bone health, like magnesium, phosphorus and vitamin K.

Other vitamin D benefits include: support for the cardiovascular system, promotion of healthy blood sugar levels, mood improvement, skin health and help with memory, concentration and learning.

Are You at Risk for a Vitamin D Deficiency?

As it turns out, almost everyone is at risk of having a vitamin D deficiency. A 2009 epidemiological study found that an astounding 77% of Americans have insufficient levels of vitamin D. The numbers are even higher in Europe and higher still in the Middle East, where people have darker skin pigmentation and women especially tend to stay covered when outdoors.

Although virtually everyone has some risk, following are specific risk factors for a vitamin D deficiency:

  • Being over 50 – As you age, your skin cannot synthesize vitamin D as efficiently and your kidneys are less able to convert it to its active hormone form.
  • Limited sun exposure – If you’re homebound, wear clothing that covers most of your skin, or live in northern latitudes that get little sunlight part of the year, it’s unlikely that you get adequate amounts of vitamin D.
  • Wearing sunscreen – While wearing sunscreen or sunblock is recommended to prevent skin cancer, unfortunately, it also blocks the UVB rays your body needs to produce vitamin D naturally.
  • Having dark skin – The pigment melanin, which results in darker skin, also reduces the skin’s ability to produce vitamin D from exposure to sunlight.
  • Fat malabsorption disorders – Vitamin D is fat soluble and therefore requires some dietary fat in the gut for absorption. Some medical conditions associated with fat malabsorption include some forms of liver disease, cystic fibrosis and Crohn’s disease.
  • Tobacco smoking – Tobacco smoking is associated with significantly reduced vitamin D levels.
  • Obesity – Greater amounts of subcutaneous fat sequester more of the vitamin D and alter its release into the circulation.
  • Gastric bypass surgery – Part of the upper small intestine where vitamin D is absorbed is bypassed, which may lead to inadequate levels.

How to Tell if You Have a Vitamin D Deficiency

The only way to know for sure if you are deficient in vitamin D is to have a blood test that measures serum 25(OH)D concentrations. 25(OH)D or 25-hydroxyvitamin D is a metabolite of vitamin D.

There is considerable disagreement among experts as to exactly what normal and ideal 25(OH)D levels should be. Though norms will vary between labs, the following chart will give you a general idea of what to look for:

25(OH)D Concentrations
(ng/ml stands for nanograms per milliliter)

Severely Deficient < 8 ng/ml
Deficient 8 – 19 ng/ml
Insufficient 20 – 29 ng/ml
Sufficient 30 – 49 ng/ml
Optimal 50 – 99 ng/ml
Excessive 100 – 150 ng/ml
Potentially toxic >150 ng/ml

 

Sources of Vitamin D

Sunlight – Vitamin D has long been called the “sunshine vitamin” because it is naturally produced when skin is exposed to sunlight’s UVB rays. In fact, exposure to sunlight is the only natural way to get sufficient amounts of vitamin D. That sounds simple enough, except that most people do not get enough exposure to sunlight on a regular, year-round basis to maintain optimum levels of vitamin D. Unless you live in a climate that is sunny most of the year, and you get at least 15 minutes of direct midday sunlight every day, there’s a good chance you’re not getting all the vitamin D your body needs.

Diet – Trying to get your vitamin D through food is not a good option because, with the exception of oily fish and fish-liver oil, vitamin D does not naturally occur in most foods. Some food items, like milk and other dairy products, orange juice, nut milks and breakfast cereals, have been fortified with small amounts of vitamin D. However, it is virtually impossible to get adequate amounts of vitamin D through your diet. For example, it would take 5 cans of tuna, 10 glasses of milk, or up to 17 cups of breakfast cereal to get just 1000 IU of vitamin D.

Supplementation – Because it can be difficult to regularly get adequate amounts of vitamin D from natural sources, for most people supplementation is the best and most practical solution. Vitamin D supplements are inexpensive and safe in reasonable doses.

Which Form of Vitamin D Is Best?

There are two main types of vitamin D – vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol). D3—the form your body naturally produces from sun exposure—is the one your body prefers because it is more easily absorbed and utilized. D2—made by irradiating yeast and other molds—is not nearly as effective because your body has to convert it to D3 before it can be used. In fact, D3 is estimated to be four times more effective in humans than D2.

How Much Vitamin D3 Should You Take?

There’s no simple answer to the question of how much vitamin D3 you should take. Recommended dosages vary significantly depending on who you ask. Plus there are a number of variables to consider. If you are currently deficient in vitamin D or have one or more risk factors, you may require a higher dose than someone who is just trying to maintain an already healthy vitamin D level.

In addition to differing opinions about recommended doses, there also continues to be a great deal of disagreement among medical professionals as to the maximum safe dosage. While some feel that the limit should be around 5,000 IU/day, other experts insist that doses up to 10,000 IU/day are safe.

One protocol successfully used by many clinicians for patients who are deficient in vitamin D is to take 50,000 IU/week for approximately three months or until your 25(OH)D levels are in the optimal range; then switch to a maintenance dose of 2,000 to 5,000 IU/day.

Of course, the best way to ensure you are taking the right dose of vitamin D for you is to have your 25(OH)D serum levels checked regularly—ideally every three months—at least until you reach and maintain an optimal level.

Summary

Whether or not vitamin D3 turns out to be helpful for the coronavirus, research clearly demonstrates that it is very beneficial for your immune system in general as well as having numerous other health benefits. Plus, it’s inexpensive and safe when taken responsibly, so there’s really no downside.


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.


Resources:

Saul L, Mair I, Ivens A, et al. 1,25-Dihydroxyvitamin D3 Restrains CD4 T Cell Priming Ability of CD11c Dendritic Cells by Upregulating Expression of CD31. Frontiers in Immunology, 2019; 10 doi: 10.3389/fimmu.2019.00600

Cui C, Xu P, Li G, et al. Vitamin D receptor activation regulates microglia polarization and oxidative stress in spontaneously hypertensive rats and angiotensin II-exposed microglial cells: Role of renin-angiotensin system. Redox Biol. 2019 Sep;26:101295. doi: 10.1016/j.redox.2019.101295.

Kuba K, Imai Y, Penninger JM. Angiotensin-converting enzyme 2 in lung diseases. Curr Opin Pharmacol. 2006 Jun; 6(3): 271–276. doi: 10.1016/j.coph.2006.03.001

Ginde AA, et al. Demographic Differences and Trends of Vitamin D Insufficiency in the US Population, 1988–2004. Arch Intern Med. 2009;169(6):626-632. doi:10.1001/archinternmed.2008.604

Feeling Alone with ME/CFS, Fibromyalgia or POTS? Why Finding a Connection Matters – A Tribute to a Leader of the Community

Chronic Fatigue Syndrome

It was about 4 years into severe illness, when pain had become more than just an issue during flare ups – it had become a daily occurrence.

What was causing all these symptoms?

Just when I had found a way to adjust to a new normal, a new symptom would pop up or the symptoms would worsen to once again make my life seem unbearable.

For years I had hopped from doctor to doctor asking about this flu-like illness that simply wouldn’t go away. No one gave me any answers that made sense. Something was wrong—what was it?

I felt so alone in the world. My life was reduced to existing and surviving. Nobody understood what I was going through, not even those closest to me.

My illness had become like a dark secret. Most people didn’t even know what I was going through. I chose not to tell most people, because I had no real answer for why I was sick or what was wrong with me. So most strangers and acquaintances didn’t have a clue, and given that I often looked well, it wasn’t hard to hide as long as I kept my appearances to short times during better days.

With friends, there was little point in talking about it. While there was genuine concern and caring at first, the conversation soon sounded like a broken record. They had no answers for me anyway, and as my suffering deepened, it became clear that they had no idea what I was really going through. Inevitably, when I had not spoken to them in a while, or the topic of the illness had not come up for some time, they treated me like a normal person and often showed no understanding or concessions for my misdemeanours such as cancelling at the last moment or being late.

The biggest frustration was not knowing what was wrong with me, or perhaps more accurately; not accepting it.

Given the nature of the early symptoms—the flare-ups of flu-like symptoms—I had taken to heart my first diagnosis: “It’s probably a virus. There are many viruses and we can’t diagnose them all, it will pass in time.”

But when weeks turned into months, months into years, and the list of symptoms kept growing, my reluctance to accept an answer also grew. After doctor hopping for a year or two and more tests than I can recall, I had also explored complimentary health care practitioners. I went from no answers to countless answers. Suddenly everything was wrong with me. But of course, none of the treatments made any lasting difference.

So yes, eventually a doctor had spoken to me about Chronic Fatigue Syndrome once. I say once, because that was the last time I saw him.

Chronic Fatigue Syndrome. I was much more than just fatigued! I felt like I was poisoned—infected. There was something really wrong. I had given this “fatigue syndrome” a cursory look, but nobody even knew what it was or what was causing it. That wasn’t me. I had a real illness!!!

Enter My Friend Google – I Am Not Alone!

I don’t remember exactly what pushed me to Google a deeper search into ME/CFS. Was it the pain? Was it a second diagnosis? It was probably simply the desperation of yet another week of misery, weird symptoms, sleepless nights and the loneliness at 3.30 a.m. as I stared at that all too familiar Google home page.

Stupid Chronic Fatigue Syndrome. What is that even supposed to be?

I don’t remember what I typed in, but after bouncing around the net for a short time, I came to a story that grabbed me.

It was about another man describing his journey and his symptoms. As I read it, I felt perhaps the biggest rollercoaster of emotions of my life. I literally felt my stomach lurch as he described the extensive list of symptoms that mirrored my own.

Even now more than a decade later, I find myself getting goosebumps remembering this moment as I write about it.

There was almost a thrill in seeing someone else describe exactly what I was going through. The details of his experience were uncannily like my own. It was gobsmacking how I had never heard anyone in my life have anything like what I was going through, yet here was this stranger with exactly the same symptoms. The way he described them made me certain this person shared my burden.

There was an elation. Why? Because I felt it was proof to all those doubting eyes I had come across over the years. Proof my experience was real. I knew it was real, but yet I still often felt like nobody really believed me for all those years.

I felt validated. I no longer felt alone in the world. I somehow had a connection with this stranger somewhere in the world.

But it also triggered fear.

There were other symptoms that I was only just starting to experience. Things that I had resisted noticing, like my extreme reaction to smells that had happened on several occasions.

And this story was of someone that had been sicker longer than me—much longer.

Validation, exhilaration, hope, disappointment, fear; my head was spinning.

The Impact of a Shared Burden

I remember just staring at the screen. No longer reading, not even thinking, just stunned.

So it was real. This Chronic Fatigue Syndrome was really what I had, not just some wastebasket diagnosis by my doctor who had run out of ideas.

I started my Google search again, looking at all the same pages I had seen long before describing ME/CFS. But while I had previously looked over them, I suddenly hung on every word. And it wasn’t good.

Everything I read made me feel hopeless. Neither my experience nor my counterpart’s experience suggested that I would be able to fix this and get my life back.

Talk about bittersweet.

It’s like years of confusion, fear, resistance and frustration had all come to this moment of acceptance.

But despite the mixed emotions, the fact that I was no longer alone in the world, had a profound impact on me. It was like the lens through which I viewed life had changed.

No longer was there that same edge when explaining myself to doctors. After all, I am not the only one experiencing this.

No longer was there that same loneliness when not even those closest to me didn’t understand my suffering and poor behaviour as I struggled to cope. After all, others walk the same path.

No longer was there that same level of uncertainty about how I could possibly face my future. After all, others had gone before me and managed somehow.

No longer did my heart feel quite as heavy.

Perhaps most importantly, I no longer felt lost. While not feeling uplifted about my future prospects, at least there was a level of acceptance that allowed me to move forward.

Cort Johnson

Cort Johnson

So who was my hero that changed how I saw the world that night, many years ago? It was Cort Johnson. I don’t remember the website where I saw him tell his story, but I remembered his name.

I imagine that article impacted many people like me. I did not meet another person experiencing ME/CFS, Fibromyalgia or POTS for many years after that fateful night. But many years later I came across Cort’s website HealthRising.

It’s always astounded me how a person experiencing this illness could possibly do as much as he has. The impact of his work in sharing an understanding of the illness, sharing our plight and sharing the research is nothing short of profound. His open-minded attitude and scientific analysis are amazing. I have had several doctors tell me that they read his articles and are “astounded by his ability to break down complex scientific research into something the layperson can understand.”

Every sport has their hero. Every community has their hero—their leader. For me and thousands, perhaps tens of thousands or more, that hero is Cort Johnson. Thank you for all you do for us, Cort.

From the Tahoe Outbreak to COVID-19, Dr. Peterson and Simmaron Take on the Coronavirus – and ME/CFS

Reprinted with the kind permission of Cort Johnson and Simmaron Research.

Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this outbreak. – Courtney Miller, President of Simmaron’s Board.

As Dr. Daniel Peterson watched an infectious disease outbreak bear down on his community like a freight train, his mind flashed back to a time, almost over 35 years ago, when a mysterious infectious event had sent scores of sick people to his office.

The pathogen in what became the infamous 1984 Incline Village outbreak, which helped to put chronic fatigue syndrome (ME/CFS) on the map, has never been definitively identified. The inability to identify it has had significant ramifications: the patients weren’t believed and the paltry CDC investigation chalked their symptoms up to hysteria.

Being able to identify the original pathogen could have changed much for those involved and for how the disease was portrayed. Decades later, some of those afflicted still remain ill with chronic fatigue syndrome (ME/CFS). Theirs and Dr. Peterson’s lives took a course change that no one could have anticipated.

Dr. Daniel Peterson

Since then Dr. Peterson focused specifically on the post-infectious cohort of ME/CFS patients. He was one of the few doctors to use Ampligen – an immune modulator – and introduced the use of the powerful antiviral Vistide to the field. He brought decades of experience dealing with post-infectious illnesses to the formation of the Simmaron Research Foundation ten years ago.

In the decade since, at the core of Dr. Peterson and Simmaron’s research has been a unique collaboration with Columbia University’s Center for Infection and Immunity (CII), led by Dr. Ian Lipkin. CII’s Dr. Mady Hornig is also a member of Simmaron’s Scientific Advisory Board.

Together, they have published 8 peer-reviewed manuscripts assessing the immune response across blood, spinal fluid and microbiota, identifying multiple subsets of ME/CFS and characterizing post-infectious immune patterns. The NIH’s current intramural study of ME/CFS focused on post-infectious patients is an overdue but pivotal, and it turns out timely, acknowledgment of the role of infection in triggering this chronic disease.

Thirty-five years after Tahoe’s CFS outbreak much has changed. We have technologies that can identify a pathogen almost in the blink of an eye. The identity of the SARS-CoV-2 virus hasn’t been in doubt since early January.

Some issues remain however. The low coronavirus testing capability in the North Tahoe region meant that even today many, probably most people infected with the virus, were not going to get tested – leaving them in anxious limbo, tying Dr. Peterson’s hands to some extent, and leaving a key question unanswered.

Catching it in the Act

That question involved ME/CFS. Peterson knew that COVID-19 – the illness associated with the SARS-CoV-2 virus – was likely to birth an immense ME/CFS cohort. This time the outbreak presented a unique opportunity to catch the process of coming down with ME/CFS in the act. It also presented an opportunity to educate a whole generation of doctors about post-infectious illnesses and ME/CFS.

That could only really happen, though, if Dr. Peterson and other doctors and researchers knew their patients had been infected with the coronavirus. COVID-19, after all, will be taken seriously. The common cold will not. It was critical, therefore, to get people tested.

Just as inadequate testing tied Peterson’s hands almost 40 years ago, shortages in vital test kit components were tying his hands today.

Solving the Testing Snafu

What to do? Dr. Peterson and the Simmaron Research Foundation had formed a strong connection with Coppe Labs – an FDA CLIA certified pathogen testing lab with high-complexity clinical testing status.  The founder of the lab, Dr. Konstance Knox, actually sits on the Simmaron Research Foundation’s Scientific Advisory Board. Dr. Knox has been testing ME/CFS patients for viral infection, reactivation and antibodies for decades.

Peterson, Simmaron staff, and Knox brainstormed. The nasopharyngeal swabs currently being used to identify the virus were available but the viral media they needed to be placed in was not.  But what about the urogenital swabs being used for some rapid polymerase chain reaction test (PCR) testing? They could be shipped frozen in saline to labs for testing.

An application for an Emergency Use Authorization (EUA) from the Food and Drug Administration to collect and test samples using that technique was granted. So was an application to provide an IgG antibody test.

Gunnar Gottschalk, PhD, Simmaron’s Clinical Research Director and emerging scientist trained by Dr. Peterson, Simmaron and Rush University, led the effort.

The supply chain crisis has severely hindered the nation’s COVID-19 testing capability. We repurposed materials and sought a creative solution which helped our collaborative team achieve FDA authorization rather quickly for both the PCR and the IgG antibody test. This ingenuity, along with the hard work of our research staff, places us in a position to be the leader for COVID-19 testing in Northern Nevada.

Over the past several weeks, over 500 people have been tested in the Tahoe area for the virus. Since getting approval, the Simmaron Research Foundation has been seeking local funding to allow it to test economically disadvantaged residents.

This Time It’s Different

This time it’s different.  Many of those sickened by the virus will not have to live in limbo. Doctors will be able to follow COVID-19 treatment guidelines knowing that their patients actually have COVID-19. Doctors will be able to treat patients and track their stages of recovery without being ostracized or looked down up. Simmaron can help elucidate the long term impacts of this virus and use that to inform our understanding of chronic ME/CFS.

This time, if pandemic patients develop ME/CFS, doctors will know they did so not because of an unidentified, usually benign cold virus but because of COVID-19 – a fearsome pathogen we know can wreak havoc on many systems of the body. They won’t be able to sweep ME/CFS under the rug with claims of hysteria, depression or somatization like they did 35 years ago.

Knowing COVID-19 is involved is a potential game changer not just for the patients who have trouble recovering, and the doctors treating them, but for the field of ME/CFS itself. The opportunity exists for this disease to finally be taken seriously.

Finally, it shouldn’t pass notice that simply by taking center stage in the Northern Tahoe COVID-19 testing effort, the Simmaron Research Foundation – which is devoted to understanding and treating ME/CFS – is spreading the word on ME/CFS and publicly rooting it in the science of post-viral disease – something the world is likely soon to become all too familiar with.

To learn more about Simmaron Research’s COVID-19 testing effort:

Email: covid19@simmaron.com
Visit: simmaronresearch.com

To donate to Simmaron Research, visit: https://donatenow.networkforgood.org/SimmaronResearch


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10+ years. Find more of Cort’s and other bloggers’ work at Health Rising.

The 3 Words We Hate To Hear The Most: You Look Well

Illnesses like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), Fibromyalgia and Lyme disease are extremely hard to understand. In fact, even when you’re the one experiencing it, it’s hard to get sometimes. And they’re relatively invisible, partly because people that aren’t our nearest and dearest are probably only going to see us on our better days, or because we’ve saved our energy and sacrificed other activities in order to do what brings us into contact with them. I say “relatively invisible” because I know the people close to me can tell by looking at me that I’m having a bad day, they can even notice sometimes that I’m tiring before I’ve allowed that into my awareness. But even on these days, if I do come into contact with someone who I haven’t’ seen for a while, I’ll still get those dreaded three little words: “You look well.”

Living with ME/CFS, Fibromyalgia, and Lyme disease

So why do these comments bother us so much? There are so many levels.

First of all, I don’t know one person with this kind of illness who hasn’t experienced some disbelief from somebody important to their well-being at some time or other (whether it was a health professional or a family member). Not being believed when your life has been snatched away from you because of ill health is crushing! It’s hard enough to deal with a chronic illness that has no cure, without feeling judged for faking it somehow. We’re desperate to be understood because we’re desperate to find a way out of our suffering — we really just want our life back.

Then, when we come to terms with the illness we realize that life can’t be put on hold until we’re better. We start adapting, pacing, managing, in order to squeeze a little bit of life out of our day. We do things despite the pain, fatigue and brain fog that would have a healthy person resting up in bed. It’s not easy, but it’s our only life. We need some kind of recognition for the heroic nature of what we achieve, despite all obstacles. At the very least, we don’t want our challenges to be minimized, ignored or disbelieved.

When what we’re dealing with isn’t recognized and acknowledged, we can find ourselves pushed into doing things that could involve a very severe payback. When our limitations aren’t acknowledged and understood our “no” can be mistaken as a personal rejection. There are so many unpleasant consequences of being misunderstood, as if life isn’t hard enough!

“You look well.” Three little words with the power to immediately put us on edge. So how I deal with them?

First of all, let me share that, even though I am really quite well now comparatively, those three little words still push my button and make me feel irritated and uncomfortable. However, I’ve learned to accept it, recognize it, and then carefully choose how to respond, instead of my initial impulse to react defensively.

This has come up for me so many times that I’ve had to think it through carefully and plan my possible responses. Now, they’re very well practiced. It helps me to consider the following three questions before I respond:

1. What is the intention behind the comment?

What I’ve come to realize with a little bit of distance is that most people say these words because they are worried about you and relieved to think you might be doing well. Illness scares people, especially when it’s chronic. They say these words to reassure themselves. Their intention is positive, a simple form of flattery. For the majority of people those words have no more meaning than that.

2. What meaning am I adding?

Because of unfortunate experience, we can be quick to add the meaning: “They’re going to judge me,” or “They don’t believe I’m really ill.” I have to recognize that I am creating the meaning that is making me feel uncomfortable right now. I tell myself that whether or not somebody judges me says more about them than about me. I choose not to waste my energy worrying about what the kind of people that are going to judge me are going to think. I choose to take this interaction as new and fresh and not pollute it with meaning from all the people I have encountered in the past.

3. How important is it that this person understands?

I then consider how much I need this person to understand. Are there going to be any consequences for me if this person misunderstands? I could waste a lot of energy trying to help everyone understand when, in fact, many people are just going to choose not to. Instead, I focus on what I need in order to be able to stay as well as possible. I’ll communicate more fully about my true well-being only on a need to know basis.

My standard responses:

When my parents’ friends, who I only see occasionally, say “You look well,” I realize they are just looking for reassurance. It doesn’t harm me in any way to give them some attention, so I’ll respond with an elusive:

“Yes, I’m having a relatively good day today,” or perhaps “It’s not one of my best days today, but I’m not bad. Thank you!”

With colleagues at my old part-time job, I used a similar response, but I’d add something along the lines of, “It takes a lot of careful management to be well enough to work, but I enjoy coming here.”

Those who wanted to judge would still judge, but others would ask what was involved.

If it’s a good friend, who hasn’t seen me for a while, and I want them to understand where I’m at, I’ll let them know how I’m feeling and all the work I put into my self-help in order to have enough energy to spend some time with them. If somebody who I see regularly repeatedly irritates me with that statement, I may say something like:

“The people closest to me can tell from looking at me how unwell I am, but generally, this is an invisible illness. It can get frustrating to be told you’re looking well all the time when you’re feeling dreadful. I prefer being asked how I’m feeling.”

With my nearest and dearest:

Although my nearest and dearest are unlikely to use those three little words, there is a fine balancing act between needing to be understood and not wanting to burden them. I always try to balance being clear about the ways I might be suffering, with the fact that I’ve got lots of ways of coping, and that I consider myself to be doing an excellent job of managing it all. That way, when I have a day when it’s all too much, I can share that too, because I know that my nearest and dearest respect that I can cope most of the time, and that it’s OK to have a blip.

Managing your own thoughts

For me, coping with these three little words is much more to do with managing my own thoughts than what to say to people or what people might be thinking. I need to accept that not everybody is going to understand. I need to shake off the harm that has been done in the past by disbelief and misunderstanding, and allow each new interaction to be only about the now. I need to focus on my boundaries and what I need to communicate to people to get my needs met. It’s good to have one or two people with whom I can fully share what I’m going through; it feels good to be understood. But in general, to quote the wise and wonderful Wayne Dyer:

“What other people think of me is none of my business.”

This article was first published on ProHealth.com on November 13, 2018 and was updated on June 17, 2020.


Julie Holliday, ProHealth’s Inspirational Editor, is a holistic life coach and writer committed to helping people take back control from energy-limiting chronic illness to live a more relaxed, balanced and fulfilling life. Julie loves spending time in nature, growing her own vegetables and spends as much of her day as possible in a comfortable pair of yoga pants. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter, Facebook and Google+.

Learn How to Boost Your Immune System Naturally: Take the Free 10-Day Coronavirus Challenge

How to boost your immune system

Having a strong, healthy immune system has never been more important than it is now with the coronavirus threatening lives around the world. And for those of us who are high risk due to age and/or chronic illnesses, it’s even more essential that we do whatever we can to boost our immune systems. Because it’s a new virus and there’s not yet a vaccine, we’re left with only two things we can do to try to protect ourselves: (1) avoid exposure to the virus by following the recommended guidelines and (2) boost our immune systems to help fight off the virus if we do get exposed.

Learn How to Boost Your Immune System Naturally

In an effort to try to help protect people in general, but especially those of us who are most vulnerable to the virus due to compromised immune systems, Ashok Gupta has developed a 10-day program called the Coronavirus Challenge. The purpose of the program is to teach us how we can strengthen our immune systems naturally. And he is generously offering the program to everyone free of charge.

Ashok Gupta

Ashok Gupta

Gupta, a former ME/CFS patient and founder of the Gupta Program and clinic, has been helping people successfully recover from chronic illnesses like ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), fibromyalgia, MCS and Lyme disease for almost 20 years.

Now, if you’re a skeptic like me, you may be wondering what the catch is. (There always seems to be a catch, right?) Let me assure you, I signed up for the challenge myself, and there really is no catch. You won’t get half way through and discover he’s trying to sell you something. He is genuinely trying to do what he can to help slow the spread of the virus by helping all of us boost our immune systems.

Although the Coronavirus Challenge is especially important for those of us with chronic illnesses, it is also very beneficial for otherwise healthy individuals who just want to make sure their immune systems are as strong as possible to protect themselves. In fact, the program has received enthusiastic approval from at least one celebrity. Oscar-nominated actress and Bond girl Naomie Harris said, “I’ve taken the pledge and have been following Ashok’s Coronavirus Challenge and I’ve learned so much about how we can all boost our immune systems against the virus, it’s great! I’ve been sharing it with everyone I know.”

The Coronavirus Challenge and the MEND Protocol

The Coronavirus Challenge is a series of 10 videos based on Gupta’s MEND protocol, a unique blend of mind and body techniques designed to strengthen the immune system against viral invaders like COVID-19 based on hundreds of research studies, which are listed in the challenge program.

M = Mind

Throughout this pandemic, we’ve been bombarded with scary, negative news around the clock. This kind of ongoing stress can lead to fear, anxiety and depression, all of which can compromise our immune systems. Gupta teaches us how to use meditation to train our minds to be calm and anxiety-free, which studies have shown can boost the effectiveness of our immune systems and reduce the chances of contracting a virus by as much as 50%. Additionally, he provides several free guided meditations on his website as well as other practical tips on how to reduce anxiety during the pandemic.

E = Energize the Body

Physical movement is an important part of strengthening our immune systems because it increases the levels of antibodies in our mucus membranes and improves the flow of fluids through our lymphatic system, which helps clear bacteria, viruses and toxins from our bodies. However, if you have a chronic illness it’s also essential that you know and respect your limitations when it comes to physical activity. When I spoke to him about this article, Gupta specifically asked me to stress this fact and encourage those with a chronic illness to be very careful about pacing themselves.

N = Night-time Routine and Sleep

Numerous studies have shown the importance of sleep when it comes to fighting off viruses. Both the duration and quality of sleep matter when we’re trying to build and maintain a strong immune system. Why? Because it is during sleep that our immune systems are rejuvenated. Unfortunately, getting quality sleep can be challenging for many of us with chronic illnesses. Gupta shares 10 tips that can help improve the quality and duration of our sleep.

D = Diet

Did you know that even some small dietary changes may reduce your chances of getting any virus by 50% or more? We often don’t realize the huge impact what we eat has on our immune systems. Actually, the foods in your pantry and refrigerator can be better medicine than anything you have in your medicine cabinet. In the diet segment, Gupta shares which foods interfere with our immune systems and which foods boost our immune systems.

The videos are high quality, beautifully done and enjoyable to watch. Another benefit of signing up for the Coronavirus Challenge is you will have access to the Facebook forum where you can interact with others who are also working to strengthen their immune systems

For more information about the Coronavirus Challenge or to sign up, go to https://www.thecoronaviruschallenge.com/

The Gupta Program – A Powerful Neuroplasticity Program for Chronic Illnesses

In addition to the Coronavirus Challenge, Gupta offers a much more in-depth program for people with ME/CFS, fibromyalgia, MCS, Lyme disease or other chronic illnesses. The Gupta Program Brain RetrainingTM is a powerful neuroplasticity program through which thousands of people with these illnesses have gotten their lives back.

Neuroplasticity is the brain’s ability to form new neural connections and adapt or compensate for injury, disease or other life changes that may occur. Scientists have found that the brain can actually be retrained and regain its natural ability to heal the body. Gupta emphasizes that he definitely is not saying these illnesses are in the mind; rather he says they are in the brain (neurological not psychological), which means that they are normally out of someone’s control.

Gupta, who suffered from ME/CFS himself, managed to fully recover using the brain-retraining techniques he now teaches, and he has made it his life-long mission to help others recover as well. In his description of the program on his website, he says:

My 20 years of research combined with the latest findings about “neuroplasticity” lead me to believe these conditions are ultimately caused by abnormalities in brain function, which can be reversed using revolutionary “brain retraining” techniques. Despite what people may say, many people do recover successfully from these conditions, and the Gupta Program triggers the body’s natural ability to heal itself.

There is of course a fee for this much more extensive program, however, he offers a 28-day free trial to allow you to get a feel for how the program works and whether it is right for you. Additionally, he offers a one-year Money Back Guarantee with no questions asked, so there’s really nothing to lose if you think this might be right for you.

For more information, visit https://www.guptaprogram.com/

(ProHealth users get 15% off for the rest of the year using code PROHEALTH.)


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.

A New Look at 4 Old Drugs That May Be Effective Fibromyalgia Treatments

Fibromyalgia Treatment Possibilities

It’s been more than a decade since the U.S. Food and Drug Administration (FDA) has approved any new pharmaceutical treatments for fibromyalgia. While there are at least four new fibromyalgia drugs in the pipeline, it could take years before any of these are available to patients.

In the meantime, the fibromyalgia community desperately needs relief from their daily pain and other symptoms! Fortunately, there are a few researchers who are looking for ways to repurpose older drugs for fibromyalgia.

4 Old Drugs That May Be Effective Fibromyalgia Treatments

These drugs will likely never be the subject of big clinical trials because there’s little profit to be made given their age. However, that doesn’t mean they aren’t effective.

In fact, all of the pharmaceuticals mentioned below perform just as well or better than the three drugs currently approved by the FDA to treat fibromyalgia. But since none of these drugs are considered first-line treatments for fibromyalgia, it does take both an open-minded doctor and patient to give them a try.

Ketamine

FDA approved: 1970

Original use: Surgical anesthesia

A growing number of pain clinics are now offering ketamine infusions for chronic conditions like fibromyalgia, but do they actually work? Early research suggests they may – at least temporarily.

In a small Swedish study, 11 fibromyalgia patients were randomly selected to receive either a low-dose ketamine infusion or a placebo infusion. Eight of those patients experienced at least 50% less pain using ketamine.

“There was a significant reduction in pain intensity with the ketamine infusion compared to the saline infusion during and 20-80 minutes after the test period,” reads a research review. “There was a decrease in tenderness and increased endurance.”

Two additional small studies carried out by some of the same researchers verified that ketamine is effective at reducing fibromyalgia pain. Altogether, 57% of the fibromyalgia patients in these three studies experienced at least a 50% reduction in pain from ketamine infusions.

That finding mirrors what I’ve heard from my readers at Prohealth.com and FedUpwithFatigue.com. Anecdotally, ketamine seems to work really well for fibromyalgia pain, but unfortunately the relief doesn’t last. The pain-relieving benefits of ketamine infusions tend to wear off within a few days or weeks, requiring the ongoing expense of another infusion.

But if someone has the disposable income and seeks temporary relief from their pain, ketamine infusions could definitely be an option.

Another alternative is taking ketamine in pill form.

“The use of oral ketamine for [the] treatment of fibromyalgia has not been widely studied; however, one study reported clinically meaningful responses in a small number of patients,” reads this review.

(Read more: Ketamine infusions for chronic pain | A systematic review and meta-analysis of randomized controlled trials)

Memantine

FDA approved: 2003

Original use: Alzheimer’s disease

Sometimes the brain fog caused by fibromyalgia literally can feel like early-stage dementia so it isn’t surprising that an Alzheimer’s drug might be helpful in treating fibro.

Memantine is frequently used for moderate-to-severe Alzheimer’s disease, but two small Spanish studies have shown it may benefit those with fibromyalgia, too. In 2014, researchers from the University of Zarogoza reported memantine significantly reduced fibromyalgia pain when administered to 63 patients at a dosage of 20 mg per day.

Five years later, a second study involving some of the same University of Zarogoza researchers found memantine improved cognitive function, depression and illness severity among 10 fibromyalgia patients.

So how does an Alzheimer’s drug improve fibromyalgia symptoms? Patients with fibromyalgia and Alzheimer’s both have been found to have elevated levels of the neurotransmitter glutamate in the brain. Excess glutamate also is associated with increased pain. Memantine works by preventing glutamate from adhering to brain receptors, thereby reducing fibromyalgia symptoms.

(Read more: Alzheimer’s drug shows promise for treating fibromyalgia pain)

Metformin

FDA approved: 1995

Original use: Type 2 diabetes

One of the biggest fibromyalgia-related news stories during 2019 was a University of Texas study that proposed using metformin, a popular type 2 diabetes drug, as a fibro treatment.

That study has since been retracted by the journal that published it, but the results still hint at a possible link between blood hemoglobin A1c levels and fibromyalgia pain. As part of the study, patients were given 500 mg of metformin twice a day in combination with “standard treatment” of either an antidepressant (amitriptyline, duloxetine or milnacipran) or an anticonvulsant (gabapentin or pregabalin).

“The subgroup of patients who had undergone pharmacological treatment of [insulin resistance] with metformin, in combination with the [standard treatment], experienced a dramatic decrease in pain scores,” reads the study. “Response to metformin plus [standard treatment] was followed by complete resolution of pain in eight of 16 patients who had been treated with metformin, a degree of improvement never observed before in such a large proportion of fibromyalgia patients subjected to any available treatment.

“In contrast, patients treated with [standard treatment] alone improved, but complete resolution of pain was generally not observed,” the study continues. “Interestingly, some patients responded only to metformin and not to [standard treatment] with [antidepressants] or membrane stabilizing agents.”

Although this study was small, the results are definitely promising! After years of reading fibromyalgia research, I believe this is the first time I’ve ever seen a study claim 100% pain relief, so the results definitely caught my attention. Hopefully, the researchers behind the study can fix the issues that caused their work to be retracted and repeat their finding with a new trial.

Low-dose naltrexone

FDA approved: 1984

Original use: Alcohol and drug dependence

Low-dose naltrexone (LDN) is the dark horse of the fibromyalgia community. Very few patients and doctors know about it, and yet I frequently hear from persons with fibromyalgia who say LDN has changed their lives for the better.

An opioid receptor antagonist, naltrexone has been used to treat alcohol and drug dependence since the 1980s at full doses of 50 mg or higher.

At low doses of 1-9 mg, however, “it is hypothesized that [LDN] causes [a] transient blockade of opioid receptors centrally resulting in a rebound of endorphin function which may attenuate pain in fibromyalgia,” reads a 2018 University of Southern California study.

In 2009, then Stanford University researcher Jarred Younger, Ph.D., conducted the first clinical trial of LDN as a fibromyalgia treatment. While the study only involved 10 patients, LDN “reduced fibromyalgia symptoms in the entire cohort, with a greater than 30% reduction of symptoms over placebo,” reads the study. “Side effects (including insomnia and vivid dreams) were rare and described as minor and transient.”

A second, slightly larger Stanford study involving 31 fibromyalgia patients confirmed the results of the initial pilot study.

Since then, a growing number of people are successfully treating their fibro pain with LDN. Anecdotally, I am continually amazed by how well LDN works in some fibromyalgia patients. It’s not unusual for me to hear LDN users say “it’s given my life back to me.”

(Read more: Review of therapeutic utilization of low dose naltrexone)

Now it’s your turn: Have you tried ketamine, memantine, metformin or low-dose naltrexone as a fibromyalgia treatment? Share your experience in the comments below!


Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.


References:

Sörensen J, Bengtsson A, Bäckman E, Henriksson KG, Bengtsson M. Pain Analysis in Patients With Fibromyalgia. Effects of Intravenous Morphine, Lidocaine, and Ketamine. Scand J Rheumatol. 1995;24(6):360-5. doi: 10.3109/03009749509095181.

Littlejohn G, Guymer E. Modulation of NMDA Receptor Activity in Fibromyalgia. Biomedicines. 2017 Jun; 5(2): 15. doi: 10.3390/biomedicines5020015.

Orhurhu V, Orhurhu MS, Bhatia A, Cohen SP. Ketamine Infusions for Chronic Pain: A Systematic Review and Meta-analysis of Randomized Controlled Trials. Anesth Analg. 2019 Jul;129(1):241-254. doi: 10.1213/ANE.0000000000004185.

Olivan-Blázquez B, et al. Efficacy of Memantine in the Treatment of Fibromyalgia: A Double-Blind, Randomised, Controlled Trial With 6-month Follow-Up. Pain. 2014 Dec;155(12):2517-25. doi: 10.1016/j.pain.2014.09.004.

Fayed N, et al. Changes in Metabolites after Treatment with Memantine in Fibromyalgia. A Double‐Blind Randomized Controlled Trial with Magnetic Resonance Spectroscopy with a 6‐month Follow‐up. CNS Neurosci Ther. 2014 Nov; 20(11): 999–1007. doi: 10.1111/cns.12314.

Pappolla MA, et al. Is insulin resistance the cause of fibromyalgia? A preliminary report. PLoS One. 2019; 14(5): e0216079. doi: 10.1371/journal.pone.0216079.

The PLOS ONE Editors (2019) Retraction: Is insulin resistance the cause of fibromyalgia? A preliminary report. PLoS ONE 14(12): e0226174. https://doi.org/10.1371/journal.pone.0226174.

Metyas S, Chen CL, Yeter K, Solyman J, Arkfeld DG. Low Dose Naltrexone in the Treatment of Fibromyalgia. Curr Rheumatol Rev. 2018;14(2):177-180. doi: 10.2174/1573397113666170321120329.

Younger J, Mackey S. Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study. Pain Med. 2009 May–Jun; 10(4): 663–672. doi: 10.1111/j.1526-4637.2009.00613.x.

Younger J, Noor N, McCue R, Mackey S. Low‐dose naltrexone for the treatment of fibromyalgia: Findings of a small, randomized, double‐blind, placebo‐controlled, counterbalanced, crossover trial assessing daily pain levels. Arthritis Rheum. 2013 Feb;65(2):529-38. doi: 10.1002/art.37734.

Toljan K, Vrooman B. Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization. Med Sci (Basel). 2018 Dec; 6(4): 82. doi: 10.3390/medsci6040082.

10 Ways to Prove that Fibromyalgia Is a Real and Serious Disease

Reprinted with the kind permission of Cort Johnson and HealthRising.org.

Doctors sloughing you off? Friends don’t understand what you’re dealing with? Studies finding problems with the pain producing parts of the central nervous system in fibromyalgia (FM) date back well over ten years. They indicate that FM is a biological disease, yet the questions about how real or serious it is still persist in parts of the medical community and the public.

The fact that so many websites still feel compelled to emphasize that yes, fibromyalgia actually is a real condition indicate that the FM field itself and people with this disease still, at times, struggle against outmoded stereotypes.

In its very title, a 2016 scientific Journal article, “Not the Last Word: Fibromyalgia is Real“, made it clear the controversy over FM in the scientific community lingered. In 2017, Medical News Today asserted that the #1 FM myth in the public arena was that somehow it’s not real. The Cleveland Clinic gave its take on the fibromyalgia reality question that year, as well, and just last year, VeryWell Health felt it was time to once again ask: “Is Fibromyalgia Real?“.

It’s frustrating to have to battle ignorance as well as a difficult disease. To help out with that, here are ten reasons, all based on scientific studies, which you can use to convince skeptics in your circle (including your doctor) that FM is not only a real disease but a serious one to boot.

#1. Very Painful!

The third myth that Medical News Today pointed out was that “the pain (in FM) is minimal and does not affect daily life”.

Oh contraire. Studies indicate that fibromyalgia is actually one of the more painful diseases there are. A large North American study which contrasted the pain levels in juvenile FM patients with those of young people with other rheumatic diseases found it was no contest: pain levels were significantly higher, and functioning and well-being levels were significantly lower in the kids with FM.

One website that cites seven distinct kinds of pain found in FM indicates what a pain artist the disease is. It’s not easy, after all, for a single disease to produce seven distinct kinds of pain, but if you really want to know about pain, you have to go to FM patients themselves. Check out some of their descriptions of pain:

  • “blood vessels feel like they’re on fire”
  • “It feels as if someone is blowing up a balloon in my head and it’s about to explode”
  • “pain that’s like fire ants are swarming through my veins and biting, along the way spreading their venom and pure burning inflammation”
  • “I feel as if I have been thrown off the Empire State Building with resulting crushed bones and then had my entire body roasted by a blowtorch and then submerged in subarctic water”
  • “someone spread finely crushed glass into all my muscles (and then I moved)”
  • “it feels like an army of thugs is belting me continuously with baseball bats”
  • “like little bugs are taking little tiny bites into my nerves and muscle fibers”.

From “In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms“.

That sounds pretty real to me. It’s just the beginning of the story, though.

#2. Central Sensitization Disorder Means Widespread Pain and Trouble

Fibromyalgia has been called the prototypical central sensitization disorder, but what does that mean? It turns out that it means a lot of trouble. The fact that major pain producing pathways in the nervous system have gone on hyper-alert means the pain for FM patients isn’t confined to their hand or their arm or their leg – it’s widespread. In fact, the 2010 criteria for FM require that people with FM experience widespread pain.

Plus, the pain pathways in the spinal cords and brains of FM patients can become so hypersensitive to stimuli that even a touch, a bright light, or an innocuous odor can produce pain.

Unfortunately, it’s not just pain that’s widespread…

#3. Widespread Symptoms Mean Trouble Virtually Everywhere

Pain is the just beginning of the many issues that people with FM typically face.  FM also produces high rates of fatigue and problems with sleep and cognition. While the physical manifestations of the disease outweigh the psychological ones,  depression and anxiety may be present as well.

So, besides experiencing widespread pain, a typical person with FM feels sleep-deprived, fatigued, experiences difficulty thinking and may be dealing with depression or anxiety. Still think FM is a nothing disease?

#4. Quality of Life Often Severely Impacted

Studies indicate that even by the standards of the medical profession, people with FM are having a tough time.  A review of dozens of studies found that FM had a similar or greater impact on both the physical and mental health of people with FM, when compared to people with rheumatoid arthritis, osteoarthritis, osteoporosis, systemic lupus erythematosus, myofascial pain syndrome, primary Sjögren’s syndrome, and others.

Another study found lower health-related quality of life scores in FM than in people with rheumatoid arthritis and spondyloarthritis, and a 2018 study found that fibromyalgia impacts a person’s quality of life as severely as does multiple sclerosis. That paper stated: “FM is a disorder that ‘in itself’ can have a devastating impact on an individual’s life.”  

If you haven’t gotten by now that FM is a real and serious disease, I don’t know what it’s going to take, but there’s more.

#5. Can Be Quite Disabling

It’s difficult to understand how a “fake” disease could produce disability. A bit of fatigue, some discomfort, worry and anxiety – yes – but high rates of unemployment and/or disability? No.

Fibromyalgia does, though. A 325-person study found that over 50% of FM patients were either on sick leave or not working and that 23% had some degree of permanent work disability pension. In a study of the costs of chronic pain in the European Union, FM was found to produce the highest unemployment rate the most disability claims, and the most days absent from work of any pain condition.

That’s pretty bad, but it doesn’t get any better. It turns out that FM is a challenging disease to treat as well.

#6. Not Easy To Treat

If a treatment works, you’re going to keep taking it, right? The fact that three FDA-approved drugs for fibromyalgia exist might seem like a cause for celebration, but no one should think FM patients are on easy street. Far from it.

The truth is that the drugs approved for FM work well in only a relatively small subset of patients. A large year-long Israeli study (n=@4,000 patients) found that less than 30% of people with FM filled their prescriptions twice and less than 10% were described as very adherent.

A study of juvenile FM patients over time found that youngsters’ sense of well-being tended to remain the same over time or worsen, and concluded that “the symptoms of juvenile pediatric fibromyalgia syndrome remained persistent and disabling for many patients.” In a survey, less than half of Canadian rheumatologists agreed that any of the current treatments for FM were effective.

While treatment programs can certainly help fibromyalgia patients, their outcomes tend to be modest. One recent review, “What You Can Do for Your Fibromyalgia Patient“, advocated a “multifaceted, long-term strategy” that was focused not on relieving pain but on simply making a person with FM more functional.

High rates of widespread pain, hypersensitivity to stimuli, fatigue, sleep and cognition problems, low quality of life, often disabling, difficult to treat: how much worse could it get? How about a tendency to come attached with other diseases as well?

#7. High Comorbid Disease Rate

It turns out that because FM likes to cluster with other diseases, people with FM often face other health problems as well. Check out the long (but probably not complete) list of other diseases that FM patients have an increased risk of picking up somewhere along the line.

They include: chronic fatigue syndrome, migraines and headaches, irritable bowel syndrome, temporomandibular joint syndrome, adult attention deficit hyperactivity disorder (ADHD), vulvodynia, interstitial cystitis.

#8. Fibromyalgia Makes Other Diseases Worse

Then there’s the flip side of the coin: people with chronic pain conditions have an increased risk of coming down with fibromyalgia. That’s called “secondary fibromyalgia” and when that happens – watch out!

One large study of people with rheumatic disorders found that having FM as well as another rheumatic disorders “had a remarkable impact on the severity of symptoms“.  The impact was so large that the authors reported that FM essentially took over, with FM now becoming the patients’ main concern.

The same generally held true for migraine. Migraine patients with FM had worse headaches, suffered from more disability, had more problems with depression, and the risk of suicide was increased compared than people with migraine only.

The economic impact appears to be equally large with the medical costs of rheumatoid arthritis patients with FM nearly double (@ $19,000/year) that of RA patients without FM (@ $10,000/year) – which brings up economics.

#9. High Economic Costs

Given that fibromyalgia is believed to affect from 4-10 million people in the U.S, the economic costs it imposes are, not surprisingly, large.

One review, “The Iceberg Nature of Fibromyalgia Burden: The Clinical and Economic Aspects”, reports that the clinical and economic costs of FM are comparable to such major and well-known diseases as diabetes, hypertension and osteoarthritis. It states that the mean annual direct medical costs of FM range from US $2,274 to $9,573 or more. That doesn’t include costs due to lost productivity and disability which could be 3-4x’s higher.

#10. Ignorant Doctors Make Everything Worse

We’ve established that FM is bear of a disease, but what makes everything worse, and what can make every a visit to the doctor like tiptoeing through a minefield, are doctors who don’t get it, and don’t want to hear about it.

Good and caring doctors are certainly out there, but rheumatologists, in particular, are notorious for their aversion for treating fibromyalgia patients. A recent Canadian survey indicated that many doctors don’t even know how to diagnose FM.

“In general, the results are unsurprising and reflect the lack of knowledge about this common pain condition. Many patients who are referred to me with chronic pain problems are wrongly diagnosed with fibromyalgia or are wrongly diagnosed as not having fibromyalgia.”

Another stated:

“I think most physicians are aware of fibromyalgia, although many still don’t believe in it and communicate this [lack of belief] to their patients.

A survey of Canadian rheumatologists found that 30% believed FM was a psychosocial – not a medical – condition, and only 27% believed FM could get so bad as to stop someone from working. Despite the fact that FM falls under their specialty, half of them stated they would refuse consultations with FM patients. Given that most rheumatologists apparently threw the survey in the trash (42% response rate), this was probably a significant undercount.

Conclusion

By all markers – symptom severity, the multiple symptoms the disease produces, quality of life measures, disability, its many comorbid diseases, economic impact, etc. – fibromyalgia is clearly a real and serious disorder that has the ability to impact virtually every area of one’s life.

Many doctors, unfortunately, choose to ignore the evidence before them. It’s not just doctors, however. Everyone – patients, doctors, researchers – would be helped by a better understanding of this disease. Unfortunately, the largest medical funder in the world, the National Institutes of Health, apparently doesn’t believe FM is a serious disorder either: it spends about $12 a year per patient in FM research – one of the lowest ratios of any disease.


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

A Message for Chronic Illness Superheroes

In honor of May 12th Awareness Day, I dedicate this to all of the Superheroes.

What does it mean to be a Superhero?

Wikipedia defines a superhero, in part, as the following:

A superhero is a type of heroic character, possessing supernatural or superhuman powers, who is dedicated to fighting the evil of their universe, and usually battling supervillains.

Living with all the pain, the exhaustion and over 200 miserable symptoms 24/7 — 365 days a year, many times we only see our weaknesses. We see what we can’t do and what we’re missing out on. Living with these numerous symptoms could certainly be considered to require superhuman powers.

Not everyone could to this. Let’s be truthful — we know people in our lives who have criticized us, yet can’t bear to have a headache, a cold, etc.

As Wikipedia defines it, we fight the evil of our universe minute to minute — relentlessly. We battle the supervillains of fibromyalgia, ME/CFS, MCS, Lyme disease, lupus, or other invisible illnesses every moment. These many supervillains are around us all the time, keeping us on our toes in our fight for freedom.

You are true heroes — those of a unique kind — unseen by others in the world — hidden in the shadows, just like any superhero.

Allow this truth to wash over you, fill you, hold you, bind you. Know your battle may be unseen, yet your super powers are still at work within you. Our type of illness is chronic, meaning all the time, every second of every day, and this alone, gives us the right to claim we possess supernatural powers.

When you feel weak, when you feel unseen, uncared for, missing from life — take a moment to look at the super powers you possess and take hold of the superheroes you truly are.

In all of this, we are united in battle, united in spirit, and united in our hearts — to rise another day and fight the good fight — knowing we’re not alone because we’re joined by the many chronic illness superheroes of this world.


Clarissa Shepherd is founder of the uplifting Fellow Travelers: Support and Chat (ME/CFS/FM) online Facebook support group and author of the book of natural healing: Find Your Way: A Guide to Healing While Living With Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia. (Europe book link: http://www.amazon.co.uk/Find-Your-Way-Clarissa-Shepherd/dp/1439244928/ref=sr_1_1_title_0_main?s=books&ie=UTF8&qid=1337393118&sr=1-1)

Spring: When Everything Turns Green, Including Smoothies

Green smoothies

Spring has finally arrived, bringing with it an opportunity for vibrant health. During this time of nature’s renewal, would you like to learn about a fun and healthy way to detox, re-energize and renew your own body? If so, green smoothies may be just what you’re looking for. They’re delicious, versatile and packed with health benefits.

If you’ve never tried a green smoothie, you’re in for a treat. Discover how something that tastes so good can still be so healthy. And find out how easy it is to fit them into your life and make them part of your regular wellness routine.

What Makes Green Smoothies So Special?

Green smoothies are a quick, convenient and tasty way of including a variety of healthy, immune-boosting foods like fruits and vegetables into your diet. Nutrient-rich and packed with vitamins, antioxidants and minerals, these smoothies are filled with fiber and easily digested.

Including fiber in your diet daily is super important because it sweeps waste and toxins from the digestive tract, helps to support regular elimination, and keeps you full between meals. A 2018 article in Mayo Clinic noted that a high fiber diet may diminish the risk of heart disease, diabetes and obesity. According to the authors, “Women should try to eat at least 21 to 25 grams of fiber a day, while men should aim for 30 to 38 grams a day.” Diets abundant in fruits and vegetables can reduce the risk of heart disease and stroke, lower blood pressure and inhibit certain types of cancer.

Enjoying leafy greens and fruits can help keep you satiated and may even result in shedding unwanted pounds because the natural sugar in fruit can help curb your cravings for sweets and processed foods.

Common Green Smoothies Ingredients and Why They’re So Healthy

  • Green smoothie recipesLeafy Greens — Dark leafy greens such as spinach, kale, Swiss chard and beet greens are high in vitamins, minerals, and antioxidants. Rich in potassium, folate, magnesium and calcium, leafy greens are also high in fiber. All greens contain their own unique plant alkaloids and we need a variety, so it’s important to rotate the greens you use in your smoothie recipes.
  • Bananas —Bananas are rich in  potassium, a critical mineral for heart health. Potassium helps balance excess sodium levels and guard against high blood pressure. Bananas are high in fiber and contain magnesium, vitamin C and vitamin B6 (good for brain health). According to the USDA, bananas contain 12.23 grams of sugar. That may initially cause concern, especially for people with diabetes. However, unripened bananas are filled with “resistant starch” that is slowly absorbed in the small intestine without causing spikes in blood sugar. Additionally, bananas are healing and soothing to the intestinal tract.
  • Flaxseed/chia seeds — Ground chia and flaxseeds are known as “superfoods.” These tiny seeds are packed with fiber, protein and Omega-3 and Omega- 6 (heart healthy) fatty acids.
  • Fruits and berries  — Fruit has been labeled nature’s perfect food. It’s low in sodium and loaded with vitamins and minerals, antioxidants, fiber and folate. Fruit supplies quick energy minus the crash you may experience from consuming processed foods. Eating fruit daily helps reduce the risk of many diseases.

Ingredients That Supply Additional Immune Support

These days we’re all looking for ways to boost our immune system. Stress, poor diet, and lack of sleep are all factors that can hinder how well we fight off diseases. We need the full force of our immune system to combat all of the daily threats we face.

Although green smoothies are already good for supporting the immune system, you can also add “power shots” of immune-boosting extras to your smoothies, such as fresh ginger, green tea and citrus fruits high in vitamin C. Another option is to sprinkle on immunity-boosting herbs and spices like cinnamon, turmeric, ginger, and garlic. These herbs and spices can also be crushed and blended right into the smoothie.

4 Easy Ways to Fit Green Smoothies into Your Day — Plus Delicious Smoothie Recipes

1. As A Meal Replacement

With the addition of a high-quality protein powder, green smoothies will provide you with adequate calories and fuel to replace any meal of the day. You can start or end your day with a smoothie. Here’s a quick and easy breakfast smoothie recipe:

Banana Berry Smoothie

2 handfuls baby spinach

1 cup water

2 tablespoons ground flaxseeds or chia seeds

1 medium banana

1 cup frozen blueberries

1 scoop protein powder such as ProHealth’s ImmunPlex™ Undenatured Whey Protein

Optional: Stevia sweetener

In a high-speed blender, combine spinach and water. Blend well until greens dissolve. Add remaining ingredients and continue blending until creamy. Add more liquid for desired consistency. Serve immediately.

Note:  You can make a double batch and store the remainder in an airtight mason jar for another meal or snack later in the day.

2. Fueling on the go

Pack a smoothie as part of a healthy work lunch. Sip on a smoothie while you’re out running errands or store some in your cooler for outings and picnics. Green smoothies are a healthy snack the whole family can enjoy. If you’re out exercising and need to rehydrate and replace lost electrolytes, a green smoothie is a quick way to do that, too. They travel well as long as they are kept chilled.

3. As a Strategic Appetizer

When dining out or attending a party or outing anywhere healthy food choices may be limited, have a smoothie before leaving home. You’ll take the edge off your hunger and supply some quick nutrients and hydration. The fiber from flaxseed and fruit will help keep you full and less likely to make unhealthy choices.

You can still celebrate your evening out with some of your favorite foods knowing you started with a strategic appetizer. You might even consider hosting a happy hour and serving smoothies in place of alcoholic drinks.

4. As a Dessert Replacement

Drink your dessert instead of indulging in high-calorie cakes, pies, and cookies. Here’s a smoothie to enjoy in place of dessert or any time you need a quick pick me up. The cherries in this recipe are packed with antioxidants, potassium, and anti-inflammatory properties. The avocado provides high fiber, vitamins, minerals and Omega-3 fatty acids.

Cherry Delight

1 medium banana

1 cup frozen, pitted cherries

2 handfuls mixed greens of your choice

2 tablespoons ground flaxseeds or chia seeds

1/2 ripe medium avocado

1 1/2 cups unsweetened nut milk

1 scoop chocolate protein powder such as RAW Organic Protein-Chocolate Cacao (sold by Prohealth)

Optional: Stevia sweetener

In a high-speed blender, combine mixed greens and nut milk. Blend well until greens dissolve. Add remaining ingredients and continue blending until creamy. Add more liquid for desired consistency.

Hopefully, this has given you some guidance and new ideas on how to enjoy green smoothies in a variety of different ways. Green smoothies are a simple way to maintain a healthy lifestyle, detox and thrive at any age.


Monica is a nurse and health writer with a special interest in natural health and wellness. You can connect with her on Twitter https://twitter.com/writegirl67

 

 

 


Resources:

Chart of high-fiber foods. Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948. November 17, 2018

Food Data Central. USDA. https://fdc.nal.usda.gov/fdc-app.html#/food-details/786652/nutrients. April 1, 2020.