Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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HIS and HER Fibromyalgia

I received an article to my Inbox this morning from newlifeoutlook│Fibromyalgia about men with FM:

Is Fibromyalgia in Men Different?

Fibromyalgia-in-Men-210x270Many people believe that fibromyalgia is a woman’s disease. In fact, men do get fibromyalgia, though not at the rate of occurrence seen in women. It is unknown why women suffer from it more often than men.

People with certain biological markers are predisposed to fibromyalgia. Fibro patients of both genders have been found to have a higher level of substance P, a neurotransmitter that signals pain. To make things worse, their level of serotonin is lower than average; this neurotransmitter is responsible for inhibiting pain. Genetics and hormones also have a role in bringing the disease out or making it worse. Women are more likely to experience more pain because estrogen reduces the pain threshold.  The heightened sensitivity to pain may be why the odds are greater for women to be diagnosed with fibromyalgia.

How Fibromyalgia Affects Men

Men often have less severe fibromyalgia symptoms than women do. They may not have as much pain and it will be in fewer places; they often don’t have the complaint of “hurting all over” like female fibromyalgia patients do. They also don’t experience as much fatigue. They do, however, experience many of the other conditions and symptoms that accompany fibro, including irritable bowel syndrome, chronic fatigue, difficulty sleeping and restless leg syndrome. Memory problems are apparent and it can become very difficult to concentrate at times.

Undiagnosed Fibromyalgia Cases in Men

There may be more cases of fibromyalgia in men then we know about, as men are less likely to go to the doctor than women. It is usually gender-based stereotyping that influences this trend – men are raised to think they should not admit to any weakness, that they shouldn’t complain of pain or discomfort lest they be viewed as less of a man. It is estimated that up to 20% of men with fibromyalgia are undiagnosed.

If you think you may have fibromyalgia, it is important to see a doctor as soon as possible. By putting it off, you put yourself more at risk of developing complications. This means your work could be affected as well as any hobbies and other important things in your life. You could also be putting your mental health as risk. Depression is a common ailment that crops up among men who delay getting an answer to their health problems. Work with your doctor to get the proper diagnosis and treatment. The sooner this is done, the better you will feel so that you can enjoy life again.

Managing Fibromyalgia

Fibromyalgia cannot be cured, but it can be managed. Medications can help control the symptoms and lifestyle changes can help in a big way. Being overweight can increase the pain and fatigue that accompanies fibromyalgia, so adding exercise to your daily regimen and eating better will help lessen these symptoms.

Resource: Web MD (How Fibromyalgia Affects Men)

Head clampBut I also remember writing about a study a while back…so I did a little search of my own blog and found Men Get Fibro, Too! from back in 2012 and (although all my picture links are missing) the post mentions an Israeli study from 2000 that found men with FM actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with FM.

I don’t know too many men with FM personally, so what do you think?

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At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

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Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

Related articles:

What’s the Deal with Fibromyalgia?

This piece has been re-blogged from ProHealth and authored by Sue Ingebretson (www.RebuildingWellness.com).

Have you ever been asked, “So, what’s the deal with fibromyalgia? What is fibro, really?”

When you’re asked, what do you say? Do you have a clear, concise spiel that gives the facts or a printed list with need-to-know bullet points?

Nope, I don’t either.

Sometimes when I’m asked, I’m in the middle of doing something else. It takes me a moment to switch gears into educator mode. Other times, I feel that the person asking the question doesn’t really want to know facts and figures. There’s more going on than what meets the eye.

Our answers about our personal health challenges really depend on who is asking. And, our answers change based on how they ask.

So, I have a suggestion for you.

Print out the following letter. Keep copies handy for the next time you’re asked questions about fibromyalgia in general, or even about your personal health challenges. This letter covers all the bases, yet gets some very important – and personal – points across in a non-technical and relatable way.

I hope you find it useful, and if so – please share!

You can download a printable copy of the letter HERE.

Fibromyalgia?  Because you asked…

Dear Concerned,

You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.

After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.

To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.

Here’s what you need to know…

Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.

Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.

Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.

#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.

We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.

The most dominant symptoms that we do share, however, are:

  1. Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)
  2. Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)
  3. Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)
  4. Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.

There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.

While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day-to-day and while sometimes I feel some more than others, they’re all usually lurking under the surface.

I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.

Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.

#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:

  • A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),
  • A family history of immune system dysfunction and/or allergies.
  • Infection(s).
  • A traumatic physical event or injury (includes surgeries).
  • A traumatic stressful/emotional event.
  • Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).
  • Environmental exposures to toxins (both internal and external).
  • Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.
  • Dental issues.

Also, any number of the above factors can lead to:

  • Whole body inflammation.
  • Chronic yeast and candida issues.
  • Compromised adrenal, thyroid, and hormone regulation.

These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.

#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.

But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.

I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.

#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vice.

Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.

I’m not trying to be difficult.

I’m simply trying to share my feelings and experiences.

And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.

It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.

It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.

#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.

Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.

While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.

Which is exactly what I’m doing now.

I’m learning as I go.

One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:

Please don’t….

  • Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
  • Tell me how I should feel. That’s up to me.
  • Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
  • Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.

Please do….

  • Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
  • Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
  • Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
  • Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.

In summary:

  • Remember that my body may bruise like a tender peach, but my will is strong as iron.
  • What I’m really trying to say is that inside, I’m still the same me.
  • I’m just trying to find my way as best I can.
  • I’d love it if you’d come along with me on this unpredictable journey.

               Not behind me pushing,

               Not in front of me pulling,

               But beside me – guiding, encouraging, nurturing and supporting

Are you with me?

_________________________

Sue-IngebretsonSue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

HAPPY FIBRO-MAGIC AWARENESS DAY

Today is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases). Mr Hennessy was based in the US but understood that it needed to be
an International event.

May 12th was chosen as it coincided with the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

FN 3Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910. Even though Nightingale was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Her previous work, and that after she became ill, led to her being the first women to get the British Order of Merit.

Although the term, FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.

(Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain.”

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years, fibromyalgia was thought to be a psychiatric or psychosomatic disorder. 

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Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, this century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Until very recently, May 12 Awareness efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organisations, the awareness efforts have, for the most part, focused on only one of the illnesses. For example; this site, together with my Facebook page, Twitter and LinkedIn profile, as well as LIVING WELL with FIBROMYALGIA has been focused on Fibromyalgia (obviously!).

  • From the beginning in 1993, various ME/CFS organizations were behind the idea. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
  • Efforts by Fibromyalgia organizations took a little longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
  • In Canada, through the efforts of the then newly founded (June 1993) National ME/FM Action Network, May 12th has been an Awareness Day since 1994.
  • Some organizations have an International ME/CFS Awareness Day (May 12), others have a week still others, such as the newly formed European ME Alliance which includes 9 European countries, use the whole month of May.

Hopefully, one day this history of fibromyalgia will be just that – past history.

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • balfour1816 – Doctor William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Doctor Balfour described tender points.
  • 1904 – Sir William Gowers (right) coined the term fibrositis (literally meaning  inflammation of fibres) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Doctor Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association recognised fibromyalgia as a real physical condition.
  • pic 21990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neuro-hormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)

Share the (Thunder) Clap!

May12thMay 12th – International ME/CFS & FM Awareness Day is running this year’s Thunder Clap – an initiative in which I would be honoured if you chose to get involved.

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (and we have so the message will get out there whatever happens!), Thunderclap will share the same message on EVERY supporters’ Twitter, Tumblr and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook, Tumblr and Twitter that cannot be ignored!

For example:

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What is THIS Thunderclap?

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This is our day to raise awareness around the world. This year marks the 22nd anniversary. We are real people, with a real physical illness and we need to raise awareness. Awareness will ultimately translate to more funding, research and a solution.

The message will be published on every supporters’ Facebook page, Tumblr and/or Twitter feed WHEN we reach the goal number.

What Can I do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter, Tumblr or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

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3. You can write a blog post to let all your followers know about the project.

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard!

These illnesses are real; the people are real; and they need help NOW!

With awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

 

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

The Bitch is Back (literally)

It’s 6.10am and I am amazed by how much pain I am in.

work_625175_7_flat,550x550,075,f_purple-painMainly, I am amazed because I forget, in between flares, about how bad these can actually be; how much we actually put up with. I don’t normally write when I feel like this because I really can’t be bothered…and, then when they’re over, it never feels like it could have been THAT bad…WRONG!

So here goes (from toes upwards): both my little toes feel like they are being squished by my shoes (like they are every time I wear any time I wear any kind of shoes) except I haven’t worn any shoes in 3 days!

Purple-Stiletto-Heels (1)The balls of my feet feel like they have spent at least 10 hours in a pair of stilettos partying – once again, I can’t remember the last time I wore a pair of heels. You know those Dr Scholl sandals with the funny nodules – those nodules are growing on the inside of my soles. And there’s a spot where I had a papilloma which is now growing up the inside of my calf muscle, despite being removed when I was twelve. Sounds so bizarre, right? Welcome to my central nervous system!

Every muscle in my calves has cramped up; and I have used every single technique that the physio at rehab taught me, applied every cream and ointment from my box of tricks…everything!

b27293cc-66ff-4474-89ba-f809cfb092ad-tmpMoving upwards (and you may want to miss this paragraph if you don’t like to share too much information): 10 days ago, I suffered an anal fissure due to constipation – yeah! fabulous! Since then, it has felt like my insides have been cramped up completely. I have been taking turns at both constipation and diarrhoea while having a very sore ass the entire time! Needless to say, I am too scared to leave the house, in case my insides should just decide to drop out! Hey! It could happen!

Now the wonderful ointment that the doctor gives you for this lovely and embarrassing condition has the possible (and very probable for us) side effects of headaches and dizziness. Ta Da! I’ve continued with non-stop headaches and dizziness.

greenhealth_07_pmsLet’s move to another orifice. My period is due tomorrow so during all of this I have been pre-menstrual. Aren’t you guys lucky that you don’t have to be anywhere near me at the moment!

You’ll be happy to know that my chest, shoulders and neck seem to fine right now so we can miss those…otherwise this could be one really long bitching session.

great make upThe pain in my cheek and jaw bones (I’m told it is a continuation of migraine pain) is not reacting to anti-inflammatories, or any other pain medication – bring on the Botox injections (and the possible addition of Botox to the PBS in March). And I have had a giant case of face leakage for the last 3 days – and no wonder when you read all of this crap, really.

One can’t help but feel sorry for oneself in this state.

Maybe a sleeping tablet will help and I’ll wake up feeling better?

Fibromyalgia Awareness – What YOU Can Do and Why

I’m really sick of sitting on the couch, too tired to do anything every day; and then, at 5.16 am (now), being unable to sleep. I need some help. I need somebody to come up with a better way to manage this condition. Better yet, I need someone to cure this condition. Really? You, too?

In fact, I am incensed enough to get back on my high horse and start another Fibromyalgia Awareness Campaign.

What you can do?

fibro 1

Weren’t you complaining about unexplained pain last week? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Haven't you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Haven’t you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I've been worried about how you're feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I’ve been worried about how you’re feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I know you've been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I know you’ve been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Got someone you're worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Got someone you’re worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Hey! This would explain why you have been feeling so tired all the time - Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Hey! This would explain why you’ve been feeling so tired all the time – Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Why we need to increase Fibromyalgia awareness

  1. (Most importantly) Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  2. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  3. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  4. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  5. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  6. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  7. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  8. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers will understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  9. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Sounds good, doesn’t it?
Please, let’s give it a try.

Somedays by Lisa Fulham

Image

Somedays it’s easier

To believe the bad stuff

The cruel words

The harsh tones

 

Somedays the darkness is all I see

Light is but a distant memory

Hope only comes

In the form of hopelessness

 

Somedays my loudest screams

Are torn from me in silence

Words loose meaning

So I crawl into myself

 

Somedays my only option is to hide

Hide all the hurt I’m feeling inside

How can I expect others to understand

When I don’t understand myself

 

Somedays my inner turmoil

Brings me to my edge

The gravity of depression

Pulls me into a downward spiral

 

But somedays

The pain feels lessened

The voice of sorrow seems quieter

The darkness isn’t such a void

And my words begin to have meaning once more

 

Somedays I see a glimmer

Of who I used to be

I hear the echo of laughter

From times gone by

My smile tries to curl

The edge of my mouth

 

Somedays I know I need to talk

Find the root

Of where the darkness came from

Find the path

That leads to the light

 

Somedays I hold out my hand

And say the word that fears me most

Help

 

Those days I feel i’m at my weakest

 

These days I feel I’m the strongest I have ever been

The Ten Basic Rules to Dating with #Chronic Illness

Re-blogged from letsfeelbetter.com

The Ten Basic Rules to Dating with Chronic Illness

1. DO: Use Technology to Bypass First Date Anxiety 

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

My sister uses OkCupid so that men know she’s a 5’2 nudist with a penchant for folk songs. If men who are total assholes about nudism and folk songs see her profile proclaiming this both so boldly and so clearly: they don’t message her. Or they message her things like “PUT ON SOME CLOTHES, YOU HOMELESS HEATHEN” or “CAT STEVENS CAN SUCK IT, YOU HIPPIE.”

You may want to try a similar strategy. Whether you’re a profile on a dating site, or you’re chatting up a guy/girl on Facebook–make sure to drop the bomb before the first date. If they don’t want to go out with you after learning you have Crohn’s, Lupus, whatever–then that’s that. What’s my momma’s favorite word? NEXT!

Why is it good to break the news online or even over the phone? You have to be understanding of people when it comes to your chronic disease. Understand that their first reaction probably will be “what the fuck?” So allow them the courtesy of saying it (to themselves) in the privacy of their own bedroom while staring at their laptop. Give them a minute or two to process. Feel comforted in the fact that you can’t see their hands flittering over the keyboard trying to come up with a supportive/appropriate/charming response. And let them have the ability to untangle this information before you sit down to your first date. Hopefully, by this time they’ll have let it settle in their mind a bit and will be able to ask you some appropriate questions about how your disease affects your life.

2. DON’T: Be a Victim

“And then the doctor said I’d never be able to eat ice cream again!”

“And then the doctor said I’d never be able to eat ice cream again!”

The only thing more awkward than meeting your ex on a blind date-is having someone tell you something on a first date like “I have ass cancer,” and then having them STARE at you while a single, silent tear slips down their cheek.

Don’t be that girl. (or guy.)

People are going to follow your lead when it comes to the state of your disease. You’re frustrated about it. They’re frustrated about it. You’re sad about it–they’re sad about it. You’re cool about it? They’ll be cool about it. People can sense your uneasiness about your disease. If you haven’t come to terms with it yet and are still in a phase of mourning your old life–you probably aren’t ready to date anyway.You’ve got to love yourself–with or without the disease, if you’re going to expect someone new in your life to do the same.

Lead by example, and don’t walk around with a chip on your shoulder that you leave in plain view. I’m not saying you have to hug your fibromyalgia lovingly in your arms every night, but you at least have to be able to get through a flare in public without openly weeping.

3. DO: Highlight Your Best Assets

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Even in your Grand-dad’s clothes.

You’re still going to be just about as self-conscious as any other person is on a first date, so remember to play up your best assets. Maybe you’ve packed on a few prednisone pounds–it’s a great time to pull out the tight skirts to show that you no longer have a white-girl butt. Maybe you’ve got circles under your eyes so black you look like you just came from a football game–time to show your date just how sexy you can look in sunglasses.

4. DON’T: TMI

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K. Thnx.

The details of your sensitive stomach. The current color of your snot. Your barely-healed laparoscopy scars. Save it for the honeymoon, kids.

5. DON’T: Lay Down the Law

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Yes, you need someone who won’t play games. You need someone who is going to be there for you ALL the time. You need someone reliable. You need someone understanding. You need, you need, you need–but slamming your fist down on the table every time you decree a new amendment on how you will be treated as a partner is not going to win you any suitors.

So take a step back. Remember that relationships are a two way street and you’ve got be willing to put out just as much as you need to take in. So why not start off this date making a mental list of how you’re going to improve their life? Partners of those with chronic illnesses are probably the closest things to super heroes. They put up with it all and know they won’t ever get as much PHYSICAL effort in return. But that doesn’t mean you can’t put in effort elsewhere. There are millions of things you can do for your partner–from helping them have better relationships with their family and friends, to teaching them about having career goals or handling money and investing, to being a solid parenting partner or emotional caregiver. You’re not the only one with problems, so start looking for places where you can apply yourself as the solution.

6. DON’T: Be a Hero

p6

It’s just a little blood…from my eyeballs. I’m good, let’s eat.

Rock climbing? Extreme roller coaster riding? Hot dog eating contests? These might not be the best first date activities for you if you have a chronic illness. You will probably fuck yourself up, big time. You will probably end the night in excruciating pain. You will probably end up puking in the back seat of his car.

Don’t pretend like you’re cool, and then turn around and dry heave into your handbag (I have mastered this by the way.) Don’t agree to go to a rock concert when you have a migraine and don’t agree to eat hibachi when you’re on an all-liquid diet. No good will come of this. Better to out yourself and your condition early and avoid the consequences. You can’t pretend forever–and Jesus, why would you want to???

7. DO: Laugh About It

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Because really–it is kind of funny. I mean whoever heard of someone sneaking in a stash of immodium in their bra to the prom? There are so many instances of hilarity when it comes to chronic illness–and if you don’t believe me, this is clearly the first post on this blog that you’ve read!

Take it from Numero Uno Klutz, Jennifer Laurence–fall on your ass and cry about it, you’ll lose the Oscar. Fall on your ass and laugh about it–you’ll be America’s Sweet Heart.

8. DON’T: Be Afraid of Rejection

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Because if you think you won’t need to be brave after the first date: you’re wrong. Relationships require all kinds of bravery. From braving that first kiss to braving the first argument. So be brave and remember that you (hopefully) don’t live in Antartica where there are only five men and you have to share them with all the other women in the tribe. If someone doesn’t want to be with you, there will be someone else. And better to be happy, searching for the right one–than miserable and feeling worse about yourself with the wrong one.

9. DO: Learn to Adapt and Be Okay With It

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Are you going to bail sometimes? Yes. Will you spend three hours on your hair then realize you need a nap? Probably. Is the world going to end? No. Sometimes you’ll want to do something with your significant other and it just won’t work out because your body is fighting back. Sure, the first few times it’s okay to be frustrated–embarrassed even, to fumble over your apologies and stress out that they’ll be upset.

As R.J always says, “We’ll adapt.” Plans change. And even though on the surface it might mess with your emotions and make for a less-than-great day–it doesn’t have to make for a less-than-great relationships. Life happens. You’re still allowed to love and be loved.

10. DON’T: Forget That You Can Be Loved

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Baby, it’s you–me, the beta blockers, the afternoon naps and ALL OF THE FLARES!

On the forum the other day, someone asked: “Who wants to be with a person that is chronically ill?” I stopped, thought and responded something that I still stand by:

You’re not just a person who is chronically ill. You are a person, and you happen to also be chronically ill. Don’t let your disease define your personality. You are so much more than an illness, and when you stop thinking of yourself in that box–others will too. Your illness will limit a lot of things in your life–but it doesn’t make you any less able to be loved. Not by a long shot.