A Typical 24 Hours With Fibromyalgia

Three years ago, my doctor said the F-word… that’s right, fibromyalgia. I ignored her. But for the last year I have been in constant pain and I find it really hard to focus on anything other than finding pain relief or finding a new treatment that might actually make a difference. 

I haven’t really been writing about the pain. Everyone in my life knows that I have neck pain and headaches. Some people think it’s my back that hurts.

Even though we have all had pain and sore body parts, the fact is that anyone who hasn’t experienced non-stop widespread pain for weeks or months or years really has no idea what this experience has been like. 

I have felt that writing about it would end up being a whiny piece of writing about boo hoo, poor me, I hurt. Or that the intention behind writing it would be to seek sympathy. I also worry that I don’t know how to fully explain my experience in a short and concise way. I worried that it would get boring and repetitive and too long to read. 

I now think it is something that I need to do. I think I need to write about the physical pain and its emotional toll. 

I thought the easiest way to explain my experience would be to go through a typical 24 hours in a day in the life of me. 

It’s 9 p.m. and I’m laying on the couch with my fingers pressing into my neck and the base of my skull, trying to recreate what relieving treatment I have received. Trying to relieve some of the throbbing in my neck and sharp pounding in my head. I’ve somehow convinced myself that I have to stay up until 10. When 10 finally comes, I climb the stairs, get ready for bed, and collapse into what I’m hoping will be the most comfortable place in the house. It takes me several minutes and several attempts to reposition myself. Does my neck feel straight and aligned with my spine? If I move slightly to the right will the stabbing pain in my thigh stop? If I roll over will that relieve some of the pain on that hip? 

Thanks to the magic of sedatives, I fall asleep in a reasonable amount of time. Unfortunately, part of my illness is over-activity in my brain. Hello neurons, can you stop firing now please? I don’t reach a state of deep sleep, which is where rest and repair happens. Instead, I drift in and out of a light sleep, never getting adequate rest. I wake up several times and reposition my body trying to find the least painful position. 

Eventually, by about 4 or 5 in the morning, my body has been in bed too long. The pressure of my own body against the mattress is causing pain that I can no longer tolerate. So I get up, go to the bathroom, stretch a bit, and go back to bed for a few hours. My alarm goes off and I hit snooze. And often sleep past the time I had planned to get up. By 8 a.m. I normally can’t be laying down anymore. The pain has built up and my body is screaming at me.

woman climbing using hands and arms

But I know that up will be better. So I pull myself out of bed to begin my day. Every step towards the shower is painful because my body feels like it was beaten with a sledge hammer the day before. 

By the time I get to the kitchen, most of the stiffness is gone. My head is often less painful. And I’m left with that general yucky blech feeling you get when you have the flu. As I am getting ready for work, my body is yelling at me to pay attention to it. I have sharp aches in many different places.

The drive to work has its own challenges. The sharp stabbing in my right thigh makes gas and break hurt. And checking my blind spots before I turn means sending searing pain through my neck into my shoulders. 

When I finally get to work, climb out of the car, and walk into the building, I’m already exhausted and it’s only 8:30 in the morning. 

The work day is a battle between doing what I need to do work-wise and doing what I need to do for my mind and body. 

Throughout the day I take pauses to stretch, to rest, to do deep breathing, to meditate, to hydrate, to find a position that is both reasonable for working and for not making my pain level worse. 

I have to remember to be conscious of the position of my body and tension in my muscles at all times. My head has to be sitting in line with my spine and facing forward. I can’t look up, down, or to the sides for any extended time period or I will suffer greatly later. I have an easel at my desk so that I can write while not bending over. 

By lunch time, the ringing in my ears has gotten louder than comfortable. It feels like there is an earthquake behind my eyes. I still feel like I have the flu. My whole body aches. I’m having muscle spasms in different places. And suddenly it feels like there is too much stimuli. I want it dark and quiet. 

drawing of woman holding her jaw

Suddenly my jaw is aching and I realize I stopped paying attention and I was clenching my teeth trying to ignore the rest of my body. My eyes are burning and itchy again, but now they are watering, too. And I can’t think of what it was I was supposed to be doing. All morning I had been forgetting words or misusing words, mostly because my brain was too busy processing pain signals and being in a constant state of stress response.

Lunch is now over and it’s time to get back to work. Despite having “slept” for 10 hours the night before, I am overcome with a sudden and extreme fatigue attack. My body just shuts down. My eyelids want to close. I yawn and yawn and I’m convinced that I can’t make it to the end of the day. 

If I do manage to find a way to lay down in a dark corner for 15 minutes, my body decides it doesn’t want to cooperate with a rest after all. My legs start to feel weird … At first it feels like some thing is crawling around inside my legs. Up and down from feet to thighs. But then that thing, which I have named the Kremlars, seems to wake up all its friends and the kremlars start racing around inside my legs, wriggling and wiggling and causing so much pain and discomfort that I have to stand up and walk around to try to make the kremlars go back to sleep. 

It’s now the end of the work day and I endure the soreness that driving causes and go home. Now it’s time to “do all the things.” Grocery shopping, cooking, cleaning, walking the dog, playing with the kitten, answering texts from people I’m convinced think I’m ignoring them, marking student work, lesson planning, choir practice, drawing, writing, relaxing… And doing all these things while feeling all of that pain I have already said I experience. 

It’s 9 p.m. again. And I’m curled up on the couch with a heating pad, a shiatsu machine, chamomile tea, my “blankie,” my TENS (transcutaneous electrical nerve stimulation) machine, crying and trying to make a list of the things that I am grateful for: love, friendship, sunshine, art, music, laughter, mojitos, that my kitten sleeps on me, cantaloupe, apples, babies laughing, hugs, really cold water, words, and so much more. 

Despite the aches and pains, despite my memory going wonky, despite my “good days” where the pain is there but tolerable… I think the hardest thing to deal with is not being able to live my life the way I want to. Not being able to do all the things I did before without planning in rest and recovery time. Not being able to do it all in one day. Not being able to go out with friends whenever I want to. Letting people down when I said I would do something. Knowing that this is lifelong. That I have to make big changes to my approach to life. And worrying constantly that I come across as an irresponsible, unreliable, lazy flake who doesn’t follow through with commitments.

drawing of woman pulling stomach up

That’s a typical day for me. I want to end this piece with something positive and inspiring. I want to be the person who people say “she did that in spite of…” but it’s not like that. I don’t have anything positive to say about fibromyalgia. All I can do is take care of myself and try to enjoy the small moments like a Sunday morning with a hot cuppa tea.


Elevated Levels of Childhood Adversity in Patients with Fibromyalgia and Chronic Widespread Pain

A recent study published in the European Journal of Pain found elevated levels of childhood adversity (CA) in female patients with fibromyalgia (FM) and chronic widespread pain (CWP).1 The impact of CA on reports of pain severity was most pronounced in women who developed the symptoms of post-traumatic stress disorder (PTSD).

“Results of this study suggest that the impact of childhood adversity (ie, whether such events have led to the development of PTSD symptoms), rather than the mere presence of such adversity, is of crucial importance in FM/CWP patients,” said Eline Coppens, MS, psychologist-psychotherapist at The Leuven Centre for Algology & Pain Management, University Hospitals Leuven, Belgium, and corresponding study investigator, in an email interview with Psychiatry Advisor.

The prevalence of childhood adversities was investigated in 3 groups of female patients — 154 patients with either FM or CWP, 83 patients with functional dyspepsia (FD), and 53 patients with achalasia. Coppens and colleagues recruited study participants from a tertiary care center for chronic pain at the University Hospitals Leuven, Belgium, between 2011 and 2014. In the FM/CWP group, the investigators also analyzed the association between childhood adversities, PTSD, and pain severity. CA, PTSD symptoms, and pain severity were assessed using self-report questionnaires.

Ms Coppens emphasized that “CA has been associated with increased vulnerability to medical symptoms in adulthood.”2

In the present study, “we found elevated levels of CA in FM/CWP patients (prevalence around 50%) compared to both healthy controls and patients with a chronic organic disease,” said Ms Coppens. She added, “In FM/CWP, we found no direct relationship between CA and pain severity. However, PTSD mediated the relationship between CA and pain severity in FM/CWP and FM/CWP patients were about 6 times more likely to report PTSD.”

At least one type of CA was reported in 49% of patients with FM/CWP, 39.7% of patients with FD, and 23.4% of patients with achalasia (P <.01). Sexual abuse, emotional abuse, and emotional neglect were more frequently reported by patients with FM/CWP than patients with achalasia. PTSD was associated with higher pain intensity in patients with FM/CWP.

“These results suggest that screening for PTSD symptoms should be an essential part of the assessment process in patients suffering from FM/CWP, so that patients can be referred for evidence-based treatment to mental health care specialists when appropriate,”3,4 emphasized Ms Coppens. She added that “semi-structured interviews such as the MINI [Mini International Neuropsychiatric Interview,5 or well-validated self-report questionnaires such as PTSD-ZIL,6 may be used for this purpose.”

“In the context of multidisciplinary treatment of FM/CWP, psychotherapeutic strategies need to focus on treatment of PTSD symptoms and on the possible impact of these symptoms on pain severity,” she concluded.


‘Pain Course’ is recruiting adults living with chronic pain

The Centre for Pain Research at NUI Galway is currently recruiting people with chronic pain (pain that has lasted for 3 months or more) to take part in a trial of the ‘Pain Course’, a free online pain self-management programme. The study offers adults living with chronic pain the opportunity to avail of this eight-week Cognitive-Behavioural Therapy course, in the comfort of their own home.

The ‘Pain Course’ was developed by a team of experts at MacQuarie University in Sydney, Australia. The Centre for Pain Research at NUI Galway, in collaboration with the research team at MacQuarie University, is conducting a research trial of the ‘Pain Course’ with adults who experience chronic pain and live in Ireland.

As many people with chronic pain are unable to access specialist pain management services, this course provides people with a programme that teaches them about and how to manage chronic pain, with clinician telephone support, in their own home.

Living with chronic pain is very challenging and people affected by it can also struggle with anxiety and depression for very understandable reasons. Chronic pain can significantly disrupt a person’s life. The ‘Pain Course’ provides good information and teaches practical skills such as Thought Challenging, Activity Pacing, and Controlled Breathing, to help manage the impact of pain on a person’s day-to-day activities, feelings of well-being and overall quality of life.

A pilot study that examined the acceptability of the ‘Pain Course’ among a small group of adults with chronic pain in Ireland found that most participants reported a high level of satisfaction with the course. Increased understanding of their pain condition and Thought Challenging were identified as being particularly helpful features of the course. All participants found the programme to be worthwhile and would recommend it to others. Feedback was predominantly positive: “I have learned the basics about chronic pain.” “Having this information and using the skills delivered in the course, I find that I think about everything in a different way now.” “The course showed me that I am not alone.”

Catherine Navin, a clinical psychologist at NUI Galway who coordinates the study, said: “Over 1,000 Australians have completed the Pain Course with very encouraging results and we are hopeful that adults with chronic pain in Ireland will similarly benefit from this treatment.”

The study will take place over the coming months. General Practitioners, physiotherapists and psychologists are also encouraged to refer suitable people with chronic pain to the study.

Participants can register at: pain-research/current-studies

9 tips for anyone newly diagnosed with fibromyalgia

You’ve been given a fibromyalgia diagnosis. Now what?

I know you’ve felt like crap for months – maybe even years. You’ve probably shuffled from doctor-to-doctor, trying to figure out why you’re in pain all the time and can barely pull yourself out of bed. You may even be relieved that you finally have a diagnosis. I know I was when I was diagnosed in 2014.

But looking back at my own fibromyalgia journey, one quote comes to mind again and again: I wish I knew then what I know now. So, today I’m sharing what I wish someone had told me when I was first diagnosed. I hope it lessens someone else’s struggle.

Tip #1 Don’t blindly accept your diagnosis

My first advice to anyone newly diagnosed with fibromyalgia is to question your diagnosis. Fibro is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Are you sure he or she did that?

Too often physicians label someone with fibromyalgia because it’s the path of least resistance. They don’t know what’s wrong with you, and nothing obvious is showing up on your lab work, so it must be fibromyalgia, right?

But I would encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients have been misdiagnosed.

The implications of that are huge. That means millions of fibromyalgia sufferers are living with undiagnosed conditions, some of which are probably treatable!

Tip #2 Find a great doctor

I know some people live in localities where medical options are limited, but if you don’t fall into that category, please do not keep going to a doctor who disrespects you or isn’t capable or willing to help you.

I have heard so many physician horror stories over the years from my fellow fibro warriors – doctors who told them fibromyalgia doesn’t exist, who said it was all in their head, who overprescribed medications to the point of putting them in a drugged stupor, who told them they were just getting old or needed to lose weight.

If your physician has said or done any of the above things, then please find a new doctor (if you’re able)! Do not allow yourself to be abused! Do not allow your physician to invalidate your illness!

You are not making it up, and it is not all in your head. Never doubt that! Seek out a physician who believes in fibromyalgia, is highly knowledgeable about the complexities of this condition and is familiar with the latest research.

I will warn you: It’s hard to find a good fibro doctor. Expect to go from doctor-to-doctor for a while before you find the right one, but trust me, having the right doctor is worth the effort!

Tip #3 The “right doctor” probably isn’t your primary-care physician or rheumatologist

Medscape’s 2016 Physician Compensation Report found that doctors average around 15 minutes per patient visit. That’s barely long enough for the patient to rattle off their complaints and for the doctor to write a prescription to try to fix said complaints. That works if you’ve got something simple like the flu, but if you’re living with a complicated chronic illness like fibromyalgia, it’s just not going to cut it.

So, what’s the solution? Seek out medical providers who practice healthcare differently. I spent years going to various primary-care doctors and specialists. None of these doctors held the answers to helping me feel better from fibro. You know why? Because they all just looked at a piece of my health issues.

The only success I’ve ever had at reducing my symptoms has been when I worked with doctors who practice functional medicine. Functional medicine doctors take a more systematic, whole-body approach to healthcare. They understand that symptoms do not happen in a vacuum. Our chronic pain, digestive troubles, migraines, exhaustion and the myriad of other fibro symptoms we experience are all linked and should be treated as such.

In functional medicine, the goal is to restore overall health, not just treat symptoms with the latest pharmaceuticals. Functional medicine practitioners tend to utilize many more tools, such as lifestyle modifications, natural supplements and alternative therapies, than traditional doctors. If I was diagnosed today, I would go directly to the Institute of Functional Medicine website and try to find a local functional medicine doctor versed in fibromyalgia.

I know other fibro sufferers who have had good results with naturopaths, osteopathic doctors and even chiropractors. These kinds of medical providers tend to be more open-minded. That’s important because there is no magic pill for fibromyalgia (see tip #4), and you need a physician who isn’t afraid to experiment with emerging treatments (see tip #8).

I’m not implying all traditional physicians are inept and slaves to the pharmaceutical industry, but I am saying you have a better chance of improving your outcome if you work with a doctor who takes a comprehensive, holistic approach to treatment.

Tip #4 There is no magic pill
In the year after my diagnosis, I tried several of the usual fibro drugs, but none of them helped. They either didn’t work or turned me into a zombie.

When I actually looked at the research trial results of the three drugs approved by the U.S. Food and Drug Administration for fibromyalgia – Cymbalta, Lyrica and Savella – it was quickly obvious why they didn’t work for me. The truth is they don’t work very well for most fibro sufferers. For example, only about one-third of patients taking Cymbalta report at least a 50 percent reduction in pain, and that’s the most effective drug of the three!

These drugs do help some fibromyalgia patients, and I don’t discourage anyone from trying them, but for most of us there is no magic pill.

Tip #5 It’s going to take more than drugs to feel better

While researching, I occasionally run across so-called success stories featuring people who have either recovered completely from fibromyalgia or are successfully minimizing their symptoms. While reading their stories, I’ve discovered a pattern: Every single one of them used multiple modalities to feel better.

Dietary changes are almost always mentioned. They gave up sugar and processed foods and eat a whole foods-based diet. Many of them went dairy, soy and gluten-free.

They majorly overhauled their lifestyle. They meditate or do yoga or tai chi to calm their overactive nervous system. They do gentle walking or aquatic exercise to stay active. They regularly spend time outdoors. They learn to pace themselves. They’ve become experts at stress management.

Sometimes they used prescription drugs, but those were only a small piece of their overall treatment plan. In short, they took a more natural, lifestyle-based approach to treatment.

Tip #6 Do your own research

We all know doctors are extremely busy, and most of them don’t have time to stay up-to-date on the latest research and treatments for all of the conditions they encounter in any given day. So, please don’t rely exclusively on them for your healing!

Here’s the harsh reality: The minute you walk out of that examination room, they’re onto the next patient. They probably won’t think about you again until they see your face at the next appointment.

So, it falls to you to become your best health advocate. Get on the Internet and do your own research! Seek out information about new treatments or therapies, and take those to your next doctor’s appointment for discussion. Be proactive in the management of your symptoms by making those important lifestyle changes mentioned in tip #5.

Become an expert in your chronic health condition! I learned early on that I was never going to feel better if I exclusively relied on my doctors for answers. They just don’t have the time or attention span for that.

Tip #7 Connect with others with fibromyalgia

Fibro can be a lonely, miserable condition. Friends and loved ones may commiserate with your pain, but the truth is no one ever truly gets fibromyalgia until they get it themselves.

But there’s one group of people who will always understand your suffering: your fellow fibro warriors! Make an effort to connect with others who have fibromyalgia through local and/or online support groups.

You will learn so much from your fellow warriors! Many of them have been in the trenches with fibromyalgia for decades, and they know better than anyone what works to knock down the pain or how to shorten a flare of symptoms. They also understand all of the emotional stuff that comes with living with an unpredictable, life-sucking chronic illness.

Bonus tip: Local support groups are a great source for finding the best fibro doctor in your community.

Tip #8 Explore emerging treatments

Early on in my diagnosis, I was much more rigid about only using research-proven treatments. However, it didn’t take me long to realize that fibromyalgia research is in its infancy, and there is no one-size-fits-all treatment approach. One of fibro’s great mysteries is that what works for one of us doesn’t necessarily work for the rest of us.

Because of that, I’ve become much more open-minded about treatment. In some ways, I’ve become my own guinea pig. I’m not afraid to try new treatments – after careful research and talking with my doctor, of course! Some of the most effective tools in my current fibro-fighting arsenal would be considered fringe treatments, but they work for me, and that’s what matters.

I learn a ton from my fellow fibro warriors (see tip #7). They are an invaluable resource, and they’re often years ahead of researchers when it comes to natural or alternative treatments.

Tip #9 It’s up to you

A few days ago, someone in an online fibro support group said pain was her friend. Maybe I’m not spiritually evolved enough yet because I have no desire to get friendly with my pain.

But I do see chronic pain as a great teacher. In the wake of your diagnosis, you will learn so much about yourself, your loved ones and the medical community. Your strength will be tested – sometimes daily – and it will be up to you whether you handle that struggle with grace or despair.

Fibromyalgia will change you as a person. The choice is yours whether it’s for the better or worse, but you always have choice. Remember that.


Fibromyalgia Symptoms & Treatment

What is fibromyalgia?

Fibromyalgia (fye-bro-mye-AL-ja) is a disorder that causes aches and pain all over the body. People with fibromyalgia also have “tender points” throughout their bodies. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs that hurt when pressure is put on them.


What are the symptoms of fibromyalgia?

In addition to pain, people with fibromyalgia could also have:

  • Cognitive and memory problems (sometimes called “fibro fog”)
  • Trouble sleeping
  • Morning stiffness
  • Headaches
  • Irritable bowel syndrome
  • Painful menstrual periods
  • Numbness or tingling of hands and feet
  • Restless legs syndrome
  • Temperature sensitivity
  • Sensitivity to loud noises or bright lights


How common is fibromyalgia? Who is mainly affected?

Fibromyalgia affects as many as 5 million Americans ages 18 and older. Most people with fibromyalgia are women (about 80 – 90 percent). However, men and children also can have the disorder. Most people are diagnosed during middle age.

Fibromyalgia can occur by itself, but people with certain other diseases, such as rheumatoid arthritis, lupus, and other types of arthritis, may be more likely to have it. Individuals who have a close relative with fibromyalgia are more likely to develop it themselves.


What causes fibromyalgia?

The causes of fibromyalgia are not known. Researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to:

  • Having a family history of fibromyalgia
  • Being exposed to stressful or traumatic events, such as
    • Car accidents
    • Injuries to the body caused by performing the same action over and over again (called “repetitive” injuries)
    • Infections or illnesses
    • Being sent to war


How is fibromyalgia diagnosed?

People with fibromyalgia often see many doctors before being diagnosed. One reason for this may be that pain and fatige, the main symptoms of fibromyalgia, also are symptoms of many other conditions. Therefore, doctors often must rule out other possible causes of these symptoms before diagnosing fibromyalgia. Fibromyalgia cannot be found by a lab test.

A doctor who knows about fibromyalgia, however, can make a diagnosis based upon two criteria:

  1. A history of widespread pain lasting more than 3 months. Pain must be present in both the right and left sides of the body as well as above and below the waist.
  2. Presence of tender points. The body has 18 sites that are possible tender points. For fibromyalgia diagnosis a person must have 11 or more tender points. For a point to be “tender,” the patient must feel pain when pressure is put on the site. People who have fibromyalgia may feel pain at other sites, too, but those 18 sites on the body are used for diagnosis.

Your doctor may try to rule out other causes of your pain and fatigue. Testing for some of these things may make sense to you. For instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain. Testing for other conditions — such as lupus, multiple sclerosis, or sleep apnea — may make less sense to you. But fibromyalgia can mimic or even overlap many other conditions. Talk with your doctor. He or she can help you understand what each test is for and how each test is part of making a final diagnosis.


This Tea Heals Fibromyalgia, Rheumatoid Arthritis, Hashimoto’s, Multiple Sclerosis, And More…

Thyme has been popular for centuries, and it has been commonly used to treat various ailments, from flu to epileptic seizures.

During the middle ages, people mixed thyme with lavender in equal amounts and sprinkled on the floors of churches to get rid of any unwanted odors. Moreover, it has also been used to heal wounds and prevent infections, and it was applied crushed on the affected areas.

Its volatile essential oils are high in antiviral, anti-rheumatic, antiseptic, anti-parasitic, and anti-fungal properties.

Its regular use will lower the viral load in the body, so it is excellent in the case of lupus, tinnitus, chronic fatigue syndrome, multiple sclerosis, fibromyalgia, vertigo, Hashimoto’s thyroiditis, and rheumatoid arthritis. All you need to do to treat these conditions is to drink thyme tea every morning.

Thyme is high in vitamins and minerals, including iron, potassium, and calcium, all of which are extremely beneficial for proper red blood cell formation, blood pressure regulation, and distribution of antioxidants in the body. It is also abundant in folic acid, B-complex vitamins, vitamin A, and C.

It also contains various  bioflavonoids and volatile oils, including thymol, an essential oil with potent antioxidant properties.

Furthermore, it has powerful cancer preventive properties, as it is rich in terpenoids such as rosmarinic and ursolic acids. Studies have shown that the regular intake of thyme raises the amount of DHA (docosahexaenoic acid, an omega-3 fatty acid) in the kidney, brain, and heart cell membranes.

The essential oils in thyme have strong expectorant and bronchial antispasmodic properties and are thus excellent in the treatment and prevention of:

  • gingivitis
  • laryngitis
  • asthma
  • throat infections
  • acute and chronic bronchitis
  • sore throats
  • coughs
  • inflammation of the mouth


8 Extraordinary Things You Need to Know About People With Chronic Illness

For those who do not have a chronic illness, I am going to share eight extraordinary things about people with chronic illness that you need to know. May this list encourage you to understand their plight and their incredible passion to live despite their struggling. May it open a new perspective for you to consider. May it help you understand what they endure. May it inspire you to appreciate the people in your life who have chronic illness — and tell them how much you admire them.

For those who are reading this list and you live a life of chronic illness —

This one’s for you.

1. People with chronic illness have a profound strength to manage life while in pain.

They have a relentless will to live, so they must dive deep into their reservoir of strength to mine more of it every single day they are faced with the challenges of their pain. They don’t give up, despite the debilitating symptoms they experience. They push through and grab hold of what they can to find fulfillment in every day. This type of endurance and perseverance proves to be an ongoing battle that can result in profound fortitude.

Reach out to them and acknowledge their incredible strength, would you?

2. People with chronic illness tend to have an astute awareness of other people’s pain.

Because they have endured their own difficult road of affliction, they may be more in tune to the people around them. They can have extraordinary empathy and compassion for others and a deep understanding of adversity and hardship, so they can truly appreciate someone else’s struggles. When someone is hurting, they are often the first to respond and console because they know the significance of having support.

3. People with chronic illness may have a unique perspective on life.

They are constantly challenged to find meaning and fulfillment within their own limitations, and they may celebrate simple things that others take for granted. They can have an exceptional admiration for life experiences, because they often live within the confines of their captivity — unable to live an active life. They may learn to look for the gifts in every day with great vigilance.

Reach out to them and tell them how you are inspired by their perspective, would you?

4. People with chronic illness often don’t tell people when they are struggling.

Because they are sick so often, they may not want to burden others regularly. They might struggle alone because they hate to make people feel uncomfortable or obligated in any way. Many times, you might notice they disappear for a time – they could miss regular events, social activities, or friends and family gatherings. This is often when they are trying to manage their symptoms and are too sick to do much else. Their disappearance sometimes goes unnoticed. This is quite possibly the hardest part of being chronically ill. They desperately want to join you.

5. People with chronic illness live a secret life of struggling.

They may not look sick at all, but underneath their appearance there is a person fighting fiercely to be well. They may fall apart as soon as they get home, after keeping the facade for hours wherever they were. They may have taken enough medicine just to get them through the day. They may mask their pain with smiles so others won’t notice their struggling. They likely don’t want to be seen as sick all the time, so they may try hard to present themselves as “OK”… and often, they are not.

Reach out to them and ask them how they’re really doing. Then listen, with empathy and love, would you?

6. People with chronic illness need you to check on them.

They often feel uncomfortable reaching out for help or support because they may feel people have more important things to do. Many are sure people are tired of hearing about their sickness/disease, so they stop telling their family and friends about their struggles. They hate what they are enduring, and wish things were different.

Reach out to them and assure them you are not tired of hearing about their struggles (and genuinely mean it). Ask them how you can help them, would you?

7. People with chronic illness can fail to follow through on commitments.

While they want so desperately to live a full life connecting with others and showing up when they say they will, people with chronic illness don’t have the privilege of knowing how they will feel each and every day. They may wish they could be more predictable, but their illness controls the outcome. If they fail you, please understand that they are more disappointed than you could ever be. They have to live with the anguish of letting you down on top of the physical pain they endure. All they have is hopeful intention and often it is met with utter defeat.

Reach out to them and tell them you absolutely understand and ask to reschedule for when they are feeling better, would you?

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

While most of the world and the people in it operate on performance and productivity, many people who have chronic illness cannot measure their worth in this way. Some days, they may feel they are of no value because they couldn’t do anything productive besides manage their illness. They can feel useless and insignificant to the world around them. They must learn to love themselves without expectations, and you must, too.

Reach out to them and tell them how valuable they are, just as they are, would you?

People who endure long-suffering are in all of our lives. Let’s make sure we walk alongside them with the love and support they deserve.

Who has chronic illness in your life?

Make sure you reach out, and tell them they are something special, would you?

Christine’s book “Help and Hope While You’re Healing” can be found on Amazon.



Shared reading could help to ease chronic pain

Chronic pain affects millions of people in the United States, and it can severely interfere with everyday functioning. However, recent research suggests a new treatment strategy for the condition: shared reading.
Researchers suggest that shared reading could be better than CBT for alleviating chronic pain.

Shared reading is an interactive reading experience in which small groups of people gather to read short stories, poetry, and other literature aloud.

By using literature that triggers memories of experiences throughout life – such as childhood and relationships – researchers have found that shared reading might be a more effective strategy to help alleviate chronic pain than cognitive behavioral therapy (CBT).

Study leader Dr. Josie Billington, from the Centre for Research into Reading, Literature and Society at the University of Liverpool in the United Kingdom, and colleagues recently reported their results in the journal Medical Humanities.

Chronic pain – defined as any form of pain that lasts for at least 12 weeks – is estimated to affect around 100 million people in the U.S.

Low back pain, severe headache or migraine, and neck pain are the most common forms of pain, with back pain being the leading cause of disability in the U.S.

While there are a number of medications that can help with chronic pain management, they are not always effective. Patients are increasingly turning to non-pharmacological strategies, such as CBT, to help alleviate pain.

CBT is a form of talk therapy that aims to change the way people think and behave in order to better manage mental and physical issues. Studies have shown that the technique may be effective for chronic pain, but the results can be short-lived.

Shared reading ‘could be an alternative to CBT’ for chronic pain

For their research, Billington and colleagues wanted to compare shared reading with CBT for chronic pain, since shared reading is often used to help ease the symptoms of other chronic conditions, such as dementia.

Participants with severe chronic pain were recruited to the study. Some subjects completed 5 weeks of CBT, and parallel to this, the remaining subjects completed 22 weeks of shared reading. After 5 weeks, participants who completed CBT joined the shared reading group.

The shared reading strategy incorporated literature that was designed to prompt memories of relationships, family members, work, and other experiences that arise throughout a lifetime, as opposed to CBT, which focused on a single point in time at which the patient was affected by chronic pain.

Subjects were required to report pain severity and emotions before and after each intervention, and they also kept a diary, where they recorded their pain and emotions twice daily.

While CBT helped participants to “manage” their emotions using organized methods, the researchers found that shared reading helped patients to address painful emotions that might be contributing to their chronic pain.

Furthermore, the researchers found that pain severity and mood improved for up to 2 days following shared reading.

“Our study indicated that shared reading could potentially be an alternative to CBT in bringing into conscious awareness areas of emotional pain otherwise passively suffered by chronic pain patients.

The encouragement of greater confrontation and tolerance of emotional difficulty that sharing reading provides makes it valuable as a longer-term follow-up or adjunct to CBT’s concentration on short-term management of emotion.”

Dr. Josie Billington

While the findings show promise for shared reading as an alternative non-pharmacological approach for chronic pain management, the team says that further studies with larger sample sizes are warranted.


8 Home Remedies to Relieve Fibromyalgia

Fibromyalgia is a chronic condition also known as fibrositis. It is characterized by pain that is widespread. The condition is more common in women than men. The exact reason for the disease has not been determined. The possible causes of the disease are hormonal disturbances, brain or spinal cord trauma, viral infections, disturbed sleep patterns, stress, genetics, etc. There is no definitive treatment for fibromyalgia, but symptoms can be relieved with some treatment.

The symptoms of fibrositis can be relieved by using some home remedies. Here are some of the remedies you can use.

1. Ginger

Ginger is an excellent remedy for relieving pain and inflammation. There are a variety of ways in which you can consume ginger. You can include ginger in your daily meals or drink ginger tea. You can also make the mixture by mashing a piece of ginger, boil it in water and drink it twice a day.  If you want to add a little taste, then you can always add a little salt. Ginger can do wonders for people suffering from this condition.

2. Eat Anti-Inflammatory Nutrients

Inflammation is the cause of a lot of health problems. It can also cause pain in the muscles. You can relieve the pain by paying attention to your diet. Diet can have an enormous effect on living a pain-free life. There are certain food products such as red onion, green teas, broccoli, black teas, tomato, etc. that contain antioxidants, such as quercetin, which are useful in reducing inflammation.

The foods containing high levels of omega-3 fats are also good for naturally reducing inflammation. If you are using fish oil, then make sure that you buy the best quality oil because it will have a higher level of oxidants and lower mercury levels.

3. Camphor

Camphor helps in relieving pain because it can tighten the muscles. Reducing the pain helps in increasing the efficiency of the body. You can use the camphor oil and apply it on the muscles to reduce pain, or you can eat it in the form of coriander. You can consume it by including it in your meals.

4. Eat the Right Vegetables

Vegetables are highly nutritious, and they can also help in relieving symptoms of fibrosis. You should never forget to include green vegetables in your diet. Vegetables are an excellent choice for strengthening bones and muscles. You should increase the intake of pumpkins as well. Make green salads an essential part of meals, and you can always use lemon juice to make it tasty.

5. Drink More Liquids

The liquids made up of blended vegetables should also be a part of your diet, as it helps get rid of toxins. It cleans the body and helps in getting rid of any elements that may cause inflammation.

6. Invest Time in Exercising and Meditation

Stress and anxiety can exacerbate fibrosis, so it is important that you stay happy and relaxed. You can help in relaxing your mind by doing yoga and meditation. They are the best ways for dealing with symptoms such as fatigue, poor sleep, anxiety, poor memory, stiffness, depression and poor balance. Dedicating just a few minutes to yoga and meditation can make life easier for you.

7. Epsom Salt

You can also relieve pain by soaking the body in epsom salt. It is magnesium sulphate and, by immersing the body in it, it lets the body absorb magnesium. One causes of fibromyalgia may be due to a deficiency in magnesium. The epsom salt bath is the best way of relaxing muscles and relieving pain. You should do it at least three times a year, and you only need to soak the body for twenty minutes.

8. Massage

Massage therapy is an excellent way of keeping the body relaxed and improving the movement of joints. It is good for getting rid of stress, and it helps relieve pain. The massages most beneficial for fibrosis are manual lymph drainage therapy. You should seek a massage therapist who has experience dealing with people suffering from fibromyalgia.



Complex regional pain syndrome: a long overlooked condition

Complex regional pain syndrome (CRPS) is a debilitating condition that affects the limbs and can be induced by trauma or surgery. An article recently published in Burns & Trauma provides a comprehensive summary of this little known condition and gives an update on recent progress in treatment.

CRPS image full
Complex regional pain syndrome (CRPS) is a debilitating condition that has been studied since it was first described by Weir Mitchell in the 1860s. During the civil war, he had keenly observed a pattern of clinical signs and symptoms with much consistency, and termed it, rather innovatively, causalgia.

This is a condition, which we had come across in our formative years in medical school, but only recently did we see patients with this condition. Often, physicians found it difficult to characterize, which led to a late diagnosis. Furthermore, explaining to patients about the diagnosis proved equally challenging. In both instances, the ever-changing terminology and nosology of CRPS played a huge role.

Due to the multi- factorial nature of this condition, animal models that can simulate the disease process are lacking.

Over the years, the complex nature of CRPS has proved an enormous challenge for clinicians and researchers alike. Since the turn of the millennium, only two randomized, placebo-controlled trials have been conducted in the United States, both of which have demonstrated disappointing results. Due to the multi- factorial nature of this condition, animal models that can simulate the disease process are lacking, which is further compounded by our limited understanding of the mechanisms involved.

This has hindered the development of new therapies, leading clinicians to adopt a trial and error approach towards managing this syndrome. Hence, most studies evaluating novel approaches have been restricted to case series or small pilot studies. The recent declaration by the United States Food and Drug Administration of CRPS as an official disease has given us renewed hope, as this has been a catalyst for new drug development.

Recently, an article entitled “Complex Regional Pain Syndrome: A Recent Update” was published in Burns & Trauma, which provides a comprehensive summary of the latest developments in our understanding of CRPS. CRPS is now classified as Type I, which occurs due to noxious event in a disproportionate way in the absence of nerve injury. Meanwhile, Type II is characterized by a burning pain with features of allodynia and hyperpathia in the presence of nerve injury. Type I is more common, and can be attributed to differences in ethnic and socio-economic background.

Over the years, physicians have managed CRPS with physiotherapy and proper diet to alleviate the symptoms. Given the chronic pain the patients experience, many often seek psychiatric appointments to cope with the pain, and avoid long-term anxiety disorders. From a preventative perspective, the use of anti-oxidants is recommended by expert opinion. From our interactions with these patients, it became more evident that handling complications is as important as managing CRPS. A good example is the onset of osteoporosis, which compounds the pain these patients already experience and complicates both the diagnosis and treatment.

Given the chronic pain the patients experience, many often seek psychiatric appointments to cope with the pain.

Unraveling the complex pathophysiology of this condition enables us to develop better treatment methods. Although there has yet to be a successful treatment for CRPS to date, years of research have provided us with many valuable lessons and our understanding of this condition continues to grow. As with any pain-related condition, the patients are very diverse, in their presentation, underlying pathophysiology as well as their response to therapies employed. Hence, future work is still required to elucidate the subgroups of patients who would benefit the most from currently available treatment.

Given the complex nature of this syndrome, it is unlikely that targeting a specific mechanism will be effective. As with other chronic disorders, the future of CRPS treatment may lie in combination therapy and studies investigating this will be necessary. We hope that this update will serve its purpose well in updating the readers of the latest work on CRPS, and enable them to make informed decisions in their clinical approach.