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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Marbles, Spoons & the Whole Megillah

Have you tried to explain chronic fatigue syndrome and/or fibromyalgia to some-one who just doesn’t get it? How about to your kids?

marblesExplaining why you can’t do the things other moms and dads do is a challenge but Melinda Malott’s book How Many Marbles Do You Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome & Fibromyalgia provides a simple, easy to understand way to do that. How fabulous to finally be able to say to your child, “Here’s a book about what’s happening to me.” It’s a great way to explain ME/CFS or FM without overburdening your children with things they don’t need to know and probably won’t understand.

What is your story with ME/CFS?

MMMelinda: I became symptomatic in March 2006.  At the time, my son was 18 months old and my daughter was 3 ½.  My symptoms progressively got worse until May of 2009 I was reduced to the confines of my home almost exclusively for 2 years.  I have had some improvement.  My improvement coupled with a management strategy has really helped me.  I am still unable to work or do any physical exercise to speak of, but I lead a full life as a wife and mother of two.

Why did you choose to do a children’s book?

Melinda: I remember the day my children came into my bedroom and both started crying.  They thought I was dying. I was too sick to try to explain, and as the clouds dissipated I came up with the marble and jar analogy.  I had looked online for resources and there were NO books to be found for children.

How did you approach telling children about ME/CFS?  

Melinda: I have a bachelor’s degree in nursing and a Master’s degree in community health education, but my formal education did not prepare me to explain something as complex as CFS and fibromyalgia to young children.  I decided rather than try to explain something I couldn’t understand that it was best to try to help my children understand my limitations. Using a jar and some marbles I was able to say yes and no without having to say I was in pain, or I didn’t feel good or I was tired.  I could simply say I was out of marbles.  Don’t get me wrong, they know I have bad days. I just don’t feel the need to amplify that for them.  They see it first-hand.  The marbles and the jar lessen the notion of a momma who is suffering.

You can visit Melinda at her website.

This is the book we’ve been waiting for—a story for children of parents with Fibromyalgia or Chronic Fatigue Syndrome. In fact, I plan to buy a copy for all my loved ones, so they’ll better understand what my life is like. It all depends on how many marbles are in my jar each day—the perfect metaphor for explaining the unpredictability and the ups and downs of Fibromyalgia and CFS. At the end of the book, Malott writes “… a heart full of love beats a jar full of marbles any day.” Not only is this book informative and insightful, it’s a heart full of love in itself.

Toni Bernhard, the author of How to Be Sick

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Lab Rats Wanted

Are you willing to put your body on the line? Or might you be at the end of your tether and willing to try anything?

As it is beyond me to list EVERY research study on FM, here are all the studies that are currently recruiting in the top 6 countries where my blog is being read:

*** If you live in another country, visit ClinicalTrials.gov, then enter your country and ‘fibromyalgia’ in the search box…you never know what you might find ***

Australia

NIL

Canada

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

The Impact of Omega-3 Fatty Acid Supplements on Fibromyalgia Symptoms

Conditions: Fibromyalgia

Interventions: Dietary Supplement: Omega-3 (oil); Dietary Supplement: Fatty Acids (placebo)

Online Acceptance-based Behavioural Treatment for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Acceptance-based behavioural therapy;   Other: Will vary per participant

India

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: pregabalin

Israel

Prevalence of Fibromyalgia in Israel

Conditions: Fibromyalgia

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

Peripheral Arterial Tonometry (PAT) Evaluation of Sleep in Fibromyalgia

Conditions: Fibromyalgia

Interventions:

Study Assessing the Efficacy of Etoricoxib in Female Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: etoricoxib

Cognitive Dysfunction in Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions:

United Kingdom

NIL

United States of America

Observational Study of Control Participants for the MAPP Research Network

Conditions: Fibromyalgia; Irritable Bowel Syndrome; Chronic Fatigue Syndrome,

Interventions:

Pain and Stress Management for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Stress and Emotions; Behavioural: Thoughts and Behaviours; Behavioural: Brain and Body

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin

Combined Behavioural and Analgesic Trial for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Tramadol; Drug: Placebo; Behavioural: Cognitive Behaviour Therapy for FM; Behavioural: Health Education

Quetiapine Compared With Placebo in the Management of Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: quetiapine; Drug: Placebo

Cyclobenzaprine Extended Release (ER) for Fibromyalgia

Conditions: Fibromyalgia; Pain; Sleep; Fatigue

Interventions: Drug: cyclobenzaprine ER (AMRIX); Drug: placebo

Tai Chi and Aerobic Exercise for Fibromyalgia (FMEx)

Conditions: Fibromyalgia

Interventions: Behavioural: Lower frequency, shorter period of Tai Chi; Behavioural: Higher frequency, shorter period of Tai Chi; Behavioural: Shorter frequency, longer period of Tai Chi; Behavioural: Higher frequency, longer period of Tai Chi; Behavioural: Aerobic Exercise Training

Effects of Direct Transcranial Current Stimulation on Central Neural Pain Processing in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Procedure: Transcranial Direct Current Stimulation (tDCS)

Lifestyle Physical Activity to Reduce Pain and Fatigue in Adults With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Lifestyle physical activity (LPA); Behavioural: Fibromyalgia education

Neurotropin to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Neurotropin

Effect of Milnacipran on Pain in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Neurotropin

Investigation of Avacen Thermal Exchange System for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Device: AVACEN Thermal Exchange System

Phase 2 Study of TD-9855 to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: TD-9855 Group 1; Drug: TD-9855 Group 2; Drug: Placebo

Cymbalta for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine

Effects of Milnacipran on Widespread Mechanical and Thermal Hyperalgesia of Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions: Drug: Milnacipran

Qigong Exercise May Benefit Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Intervention Group; Behavioural: Placebo Comparator: Control Group

Effect of Temperature on Pain and Brown Adipose Activity in Fibromyalgia

Conditions: Fibromyalgia, Pain

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

The Pathogenesis of Idiopathic Dry Eyes

Conditions: Dry Eye, Fibromyalgia

Interventions:

Evaluation and Diagnosis of People With Pain and Fatigue Syndromes

Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy

Interventions:

The Functional Neuroanatomy of Catastrophizing: an fMRI Study

Conditions: Fibromyalgia

Interventions: Behavioural: Cognitive Behavioural Therapy; Behavioural: Education

A Placebo-Controlled Trial of Pregabalin (Lyrica) for Irritable Bowel Syndrome

Conditions: Irritable Bowel Syndrome

Interventions: Drug: Pregabalin (Lyrica); Drug: Placebo

 

 

Ribose Aids Fibromyalgia

 

According to Dr Jacob Teitelbaum, D-ribose provides the key building block for producing the ‘energy molecule’ adenosine triphosphate (ATP) in every cell.

In a recent multicentre study led by Dr Teitelbaum, D-ribose supplementation improved energy levels, sleep, mental clarity, pain relief and well-being in patients suffering from fibromyalgia

This open-label, unblinded study included 257 patients in 53 US clinics with a diagnosis of CFS and FM. All subjects were given D-ribose (as Corvalen™ from Bioenergy), a naturally occurring pentose carbohydrate, 5 g t.i.d. for three weeks.

In the 203 patients who completed the trial, D-ribose treatment led to both statistically and clinically highly important average improvements in all categories:

  • 61.3-percent increase in energy
  • 37-percent increase in overall well being
  • 29.3-percnet improvement in sleep
  • 30-percent improvement in mental clarity
  • 15.6-percent decrease in pain

Improvement began in the first week of treatment, and continued to increase at the end of the three weeks of treatment. The D-ribose was well tolerated.

These findings confirmed results of an earlier pilot study published in the Journal of Alternative and Complementary Medicine, involving 36 patients from a single medical centre, who took D-ribose for an average of 25 days. Approximately 66 percent of patients experienced significant improvement while on D-ribose, with an average increase in energy of 45 percent and an average improvement in overall well-being of 30 percent.

“Our hypothesis all along has been that giving D-ribose to people with chronic fatigue syndrome and fibromyalgia will jump-start their mitochondrial energy furnaces,” said Dr Teitelbaum. “We’re pleased that the larger multicentre trial corroborated our earlier study, showing the same benefits for fibromyalgia and chronic fatigue syndrome patients from multiple locations.”

 

Fibro Fog – Feels Like Early Dementia

Having trouble explaining Fibro Fog to some-one else – or they just don’t believe you?
Sometimes all it takes is another person to describe it:

Fibro – A Greater Impact than Cancer!

Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.

The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.

As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.

The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.

The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.

The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.

Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.

 

***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.