U.S Pain Foundation

The First 48 Hours After a Fibromyalgia Flare Up | Living with Fibromyalgia (REPOST)

March 13, 2019 — Leave a comment

Yesterday I literally thought I was dying. Honestly, I haven’t experienced such a severe 24 hour fibromyalgia flare in a long time. It came on as soon as I woke up Tuesday morning and lasted literally until 10 AM today. I don’t have the words to describe the feeling but I can describe my process of recovery for the next two days.

No matter how positive you think, or how mindful you are, there is just no way to dispute the fact that chronic illness sucks. Backwards and forwards. In and out. Up and down. All around; fibro stinks. Some days you wake up feeling deceptively great ready to take on the world. Most days you lie in bed angry, exhausted, and barely able to move wondering what you could have possibly done the day before to feel like you were ran over by a semi-truck. You relish the good days but you also rue the good days since good days usually mean you’ve push your body too far. So you wake up the next day wishing the day before never happened.

You are constantly thinking ahead. Reshuffling your invisible spoons, rearranging your schedule, re-prioritizing what is most important to get done and what can be put off until a better day. Trying to mark one more item off your to do list before your body most certainly gives out on you. Then there’s the fibro fog and memory lapses. The jolts of pain. And the fatigue. Did I mention the fatigue? ( I might have forgotten). You don’t know unrelenting, indescribable, nonsensical fatigue unless you’ve lived with fibromyalgia. This post could go on and on but I’ll spare you. I think the point has been made.

And for those of you living with or knowing someone with a chronic pain condition, this post is written to help you better understand the emotional, mental, and physical toll that chronic pain takes on many of us living with an invisible chronic illness; specifically following a fibromyalgia flare.

Since my illness happens to be fibromyalgia this post is written from my personal perspective. But understand that many of these emotions, feelings, and perspectives are shared across different illnesses and it is my hope that by sharing just a glimpse of what is so often unsaid I’ll bring just a little more clarity on the complexities that come with living with a chronic illness.

For me though, what may be the worst part of living with fibromyalgia is the inconsistency of the illness. Even though I’ve lived with fibromyalgia for 7+ years; every day I learn something new. Each time I “flare” and feel increased surges of all my symptoms, it’s always like the first time since what causes today’s flare up might not be what caused the last one. You see these high tides of fatigue and pain are best known in the fibro world as a flare. What exactly is a fibro flare you ask? Thankfully I made a whole post about it.

What is a Fibro Flare?

Simply put :

“A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

You can learn more in my post here but what I most wanted to get across in this post is the emotional, mental, and physical pain that flares put on those of us living with chronic pain.

Guilt

Inevitably, flares hit us during the most inopportune times. Perhaps due to the subconscious stress of an impending big event, the physical toll of a long day, or even a sudden change in the weather the most common emotion that hits us during and after a flare is guilt. Guilt that we’ve had to cancel an important event. Guilt that we called into work again. Guilt that you let your friends or family down. The problem with guilt is that it is taxing to our already taxed systems. It is also insidious and has been one of the hardest emotions that I personally have had to learn how to manage.

Insecurity

Immediately after a flare; you begin to feel insecure. Questions like Did I push to far, can I begin again, should I go back to work, and can I handle my life begin to surface. It is easy to feel broken, embarrassed, and full of self-doubt. Sometimes I feel like I won’t survive another flare and I wonder how I’ve gotten this far. These feelings can linger for days after a flare has subsided.

Pain

Pain is a mainstay with fibromyalgia. Pain is always there even when it is managed by medication. Pain is unnatural to our bodies and sometimes it is hard to know exactly when flare pain begins and ends. Learning to exist day to day with extremely high levels of pain is something that those of us with fibromyalgia have learned to do very well. This constant pain is unnatural and can be worse immediately before or after a flare.

How Can You Help

This is just the surface of what happens after a person with chronic pain experiences a flare. If you are a caretaker, friend, or associate of somone living with an invisible illness it can be difficult to know how to help or what to do when your friend experiences a flare. You may feel helpless and not know what to do or say to best help. Come back on September 24th to learn how you can help.

To learn more about chronic pain and pain advocacy visit the U.S Pain Foundation

Four Herbs to Calm Anxiety | Guest Blog by Noor Najam

July 26, 2018 — Leave a comment

Hello there! Feeling anxious lately? You would do well to know that anxiety does not only represent itself as a feeling or a state of mind, anxiety has negative impacts on your body as well.

For example, your heartbeat gets faster and you sometimes lose your appetite as well. There are so many other effects of anxiety that make you unproductive and totally take away your motivation to do anything. So, the very first thing anyone will recommend is taking your anxiety medication but so many of us have problems with anxiety medication, right? It’s addictive, has so many unknown chemicals and let’s not even get into the side effects!

So for people like you and me, who shy away from medication, fresh and healthy food also comes to the rescue! In this case, it is herbs:

Chamomile

My personal favorite herb of all is chamomile. It works wonders for relieving your anxiety and de-stressing you all over. Sometimes when I cannot sleep at night because I am too busy fretting over small things, a small cup of chamomile tea with honey is all I need to fix myself and get back on my feet.

I understand some people cannot stand tea, so there’s no need to worry; there are many other ways to take in chamomile. For example, you can take chamomile herb supplements with your food. Chamomile essential oil is also easily available in the market so you can just use it as massage oil or in a body scrub!

Kava-kava

Chamomile is for people who suffer from small bouts of anxiety from time to time. Kava-kava is much stronger than chamomile when it comes to relieving anxiety. There has been a lot of research on this drug and studies have shown it to dull the effects of anxiety greatly.

There is one problem though, kava is said to be quite dangerous to the liver. So we recommend you do not take its supplements often and never consume it with alcohol or if you have any liver problems at all.

Passionflower

Passionflower is another somewhat mild herb that is said to relieve anxiety in people. It is said to have the same effect as some anti-anxiety drugs like diazepam or oxazepam. It is supposed to work slower than the medication, though.

The difference is in the side effects. Passionflower may cause slight drowsiness to the user but it can be overcome easily while anti-anxiety drugs are usually addictive and may harm the nervous system as well.

Lemon Balm

Lemon balm lies in the same category as passionflower and chamomile. It is said to have a fresh, lovely scent which helps in making you feel better as well. Lemon balm can also be taken as a supplement or consumed as a tea.

Ashwagandha

Ashwagandha is an Ayurveda herb that is being used in therapy for centuries now. In recent studies, it has also been found that ashwagandha supplements also improve the effects of anxiety in people. This herb also has minimal side effects and is quite safe for consumption.

About Noor

Noor Najam is a 22-year old student who loves to explore food delights and ever-growing new tastes of different regions. She likes to stay fit and make healthier food choices. She thinks she should have studied a culinary related bachelor’s degree instead of her current bachelors in Social Sciences. She regularly posts on https://pateeri.com/.

 

Dependence is Not Addiction | Living with Fibromyalgia

April 9, 2018 — 2 Comments

The war on opiods is real. Let me restate that” The war on opioids is real and those of us living with chronic pain conditions and invisible illness are at risk of losing essential medications that give us a quality of life.

The war on opioids is real

I say all this in acknowledgement of a real need to address “opioid abuse” and “substance use disorders” which are very real and claiming the lives of many individuals across the country. However, as someone living with chronic pain and a dependence on prescription opiioid medication to live a successful productive life, I cannot help but be fearful that the vilification and “war” on prescription opioid medication with broad sweeping generalizations is not only frightening by upsetting.

The purpose of this post is not to undercut the real need for legislative control and action around “substance use disorder” but to help dispel the myths and misunderstanding of the categorizations of prescription dependence vs illegal and prescription drug addiction (now known as substance use disorder).

What is Addiction

Psychology Today defines addiction as:

“An activity initially enjoyed by a person (eating, drinking, drug-taking, etc.), but with repeated use and higher amounts needed to achieve a similar ‘high’ that can become life-threatening for the person’s level of work and life responsibilities”.

Medical and substance abuse communities have found that there are neurochemical differences between a normal brain and an addict’s brain. There are even perceived differences between addiction versus the abuse of a substance.

Addiction can occur without physical dependence; consider cocaine or methamphetamine both have little outwardly apparent withdrawal syndrome but addiction to either can devastate lives. Non-substance addictions such as gambling, sex or internet also have no physical dependence. What is common to all these addictions is the unnatural cravings that prompt the compulsive behaviors. (National Alliance of Advocates for Buprenorphone Treatment)

Physical dependence can occur without addiction; this is the common experience of most chronic pain patients who are able to take their opioid medication as prescribed for pain but don’t develop the uncontrollable compulsion and loss of control. A desire to avoid withdrawal is not addiction. (National Alliance of Advocates for Buprenorphone Treatment)

Studies have shown that addiction can form in individuals through a combination of genetic makeup and poor social skills. This is why the offspring of addicts are prone to becoming addicts. One study showed that a child of a parent with a drug or alcohol addiction is eight times more likely to develop an addiction as well.

What is Dependence

‘Dependence’ is a term used to describe a person’s physical and psychological loss of control due to substance abuse. If a person uses many drugs and develops a physical dependence on these drugs, that person is usually described as dependent. That alone isn’t always an addiction, but it can accompany addiction. Today, medical experts refer to ‘dependence’ usually around a person’s constant drug and alcohol abuse. Conversely, chronically addictive behaviors like compulsive sex, constant gambling, and even non-stop Internet usage can be seen as an ‘addiction.’

Why Understanding the Difference Matters

According to recent reports; atleast 100 million people with chronic pain aren’t getting the relief they need and are seeking alternatives.

Because of some healthcare workers’ attitudes toward opioids and media coverage of the opioid epidemic, when patients bring up the fact that they live with pain, they’re looked at with skepticism, questioned relentlessly, second-guessed, and judged. This creates a conundrum for physicians that because they aren’t adequately trained to deal with chronic pain conditions or don’t believe in what the cannot see; create a disparity in how they prescribed opioid medication.

There can be an all or nothing approach to the prescription of pain killers with patients who for instance have a surgery having medication over prescribed. This creates a situation where leftover medication unintentionally getting into the hands of children or worse finding itself to the black market because it wasn’t safely stored or disposed of. On the flip side, chronic pain patients may be cut off from essential pain medication because that same physician that over prescribed to a surgery patient fears long term addiction in a chronic pain patient.

Representation Matters

In addition to these disparities, there’s not a lot in the media about chronic pain patients. Chronic pain is not visible therefore it is hard to fully comprehend how someone can live with vacillating debilitating pain. Additionally because the media is all about “juicy” attention grabbing rhetoric; speaking about opioid use in the context of addiction sells more headlines and is a more interesting story than highlighting the experiences of chronic pain patients. It’s all about addiction and people abusing their pills. But there are pain patients suffering long term and they can’t get any help from the medical community, many experts explain. “No one is willing to listen to them.”

Again there’s no question that the use of opioid medications in the United States is a dangerous and mounting problem. The statistics speak for themselves:

  • In 2015, opioid overdoses killed approximately 33,000 people, up from around 11,000 10 years prior.
  • Opioid abuse has been called the deadliest drug epidemic in U.S. history.

But the epidemic is driven primarily by illegal — not medical — abuse of prescription pills.

  • A study of over 135,000 opioid overdose victims found that just 13 percent were chronic pain patients.
Even when the numbers are put into the proper context, chronic pain patients bear an inflated burden of the backlash against opioid use, which was driven by the pharmaceutical industry in the 90s.

How to End the Myth

I take opioid medication every single day to function and live. I am not an addict.

The single most important thing people can do is to listen to chronic pain patients and advocates when they share their life experience. To often people judge and stereotype based on what they think they know or narratives that they have seen. Everyone’s experience is different and the statistics show that most chronic pain patients are not addicts. Chronic pain patients should advocate for themselves and share their stories. The more we know the more we can understand to listen.

At a systemic level, in 2013, the American Psychological Association (APA) released the fifth edition of the DSM. In this edition, the definitions revolving around addiction were changed once again. The APA ditched both “substance abuse” and “substance dependence” in favor of “substance use disorder.”

Part of the reason for the change was the confusion surrounding the word ‘dependence.’ The hope is that defining an addiction as a substance use disorder was a more inclusive way to identify people who need help, but may not have a debilitating addiction.

Advocacy

I join the U.S Pain Foundation as a Pain Ambassador or spokesperson for issues and legislation surrounding chronic pain patients, advocacy, and showing everyday through my work with 540WMain Learning Academy and beyond the face of chronic pain. Each of us is different and unique. Laws and legislation have to reflect this diversity. While reform is absolutely necessary, some of the restrictions on opioids have unintentionally harmed legitimate patients who rely on opioids to manage their pain and use their medications appropriately. As a result, these individuals are left with their pain under-treated or untreated. A failure to treat pain appropriately, however, leads not only to unnecessary physical suffering, but also increased disability, lost productivity, depression and anxiety, and even suicide.

Says the U.S Pain Foundation:

“In order to effectively address the opioid epidemic, we must enact balanced reforms that consider the needs of both patients with pain and patients with substance use disorder. Balanced reforms include things like increased access to alternative treatment options (including complementary and integrative medicine and medical marijuana); prescription monitoring programs; abuse-deterrent formularies; increasing public awareness about safe medication disposal; better understanding of risk factors and appropriate screening for substance use disorder; and so on.” Read their full position statement.

To learn more chronic pain visit the U.S Pain Foundation

Sources: Addiction Center | The Recovery Village | Healthline | U.S Pain Foundation |(National Alliance of Advocates for Buprenorphone Treatment)

What Chronic Fatigue Feels Like | Living with Fibromyalgia

December 30, 2017 — 2 Comments

I’m writing this post during what will most likely be my last chronic fatigue flare of 2017. Even though I’ve lived with fibromyalgia and chronic fatigue (CFS) since 2010; every major flare seems like the first and even though mentally I handle them much better than I did in the past, it’s still difficult not to feel a surreal sense of death, doom, and despair.

It’s difficult not to feel a surreal sense of death, doom, and despair

The mental anguish and feeling that life simply cannot continue is what’s most difficult. Even though you know it will subside there’s always this feeling that maybe it won’t. This is what scares you the most.

Chronic fatigue is difficult to live with and live through but it is even more challenging to explain to others. It is so much more than just being tired, even more than being exhausted, and unless you’ve experienced it for yourself; you can never fully understand what it is like to live through an intense-severe chronic fatigue flare. Still it is my hope that through this post you might be understand the illness a little better and have an ounce more empathy for those of us living with these debilitating invisible illnesses.

What is Chronic Fatigue?

According to Medical News Today...Chronic fatigue syndrome (CFS or ME/CFS) is a condition of prolonged and severe tiredness or weariness. It is not relieved by rest and is not directly caused by other conditions. CFS is a syndrome of persistent incapacitating weakness or fatigue, accompanied by nonspecific symptoms, that lasts at least 6 months, and not attributable to any known cause.

To be diagnosed with this condition, tiredness must be severe enough to decrease an individual’s ability to participate in ordinary activities by 50 percent. Chronic fatigue syndrome is much more than just feeling tired often. People with CFS are so run down that it interferes with their lives and can make it hard to function at all.

What is A Chronic Fatigue Flare?

So take all the information above and multiply it times one hundred and you essentially have what a CFS flare is. “A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different time frames for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

When I’m in a fare I can literally sleep for 10-14 hours on end without let up. My entire body is weighed down and the entire experience is quite frightening. Imagine that someone has drugged you against your will and no matter how hard you try you simply cannot wake up.

Imagine that someone has drugged you against your will and no matter how hard you try you simply cannot wake up.

These sleep spells can last a few days, several days, or several weeks. Usually the sleep will let up slightly during the day to allow you to use the bathroom or maybe eat a bowl of cereal but for the most part any activity that requires any type of extensive brain or physical work

  • Cooking
  • Taking a shower
  • Doing laundry

are completely out of the question. At its worst, even getting out of the bed can literally takes hours upon hours. Other symptoms can include:

  • Internal fevers
  • Chills
  • Sweating spells
  • Muscle spasms
  • Nausea and more

But the #1 symptom is the exhaustion. Endless mind numbing exhaustion.

Getting out of the bed can literally takes hours upon hours.

So you seen CFS is no laughing matter. It is a real, tangible, debilitating illness that so far has o cure. I wouldn’t wish it on my worst enemy and I pray for the day that it will be a thing of the past. Until then I share my experiences, spread awareness, and take one day, one flare at a time.

To learn more about chronic fatigue click here

Source: Medical News Today

What Is A Fibromyalgia Flare? | Living with Fibromyalgia (REPOST)

December 28, 2017 — 4 Comments

The second most common question that people living with fibromyalgia (or any chronic invisible illness for that matter) get asked next to What is Fibromyalgia is What is a Fibromyalgia Flare?

If you know someone living with this illness then you’ve probably heard them tell you on one occasion or another that they are experiencing a “flare up”. Trying to articulate what you mean by a “flare” is perhaps one of the hardest things to do mainly because “flares” look so different for each person.

Surprisingly, attempting to explain a flare is just as difficult as trying to understand a flare and it is for this reason that so many of us living with the illness avoid discussing our symptoms altogether.

However, education, awareness, and knowledge are important when dealing with any chronic illness- fibromyalgia or otherwise and it is only through explaining that we help all people grasp the truly omnipresent nature of chronic invisible illness and help everyone to better understand what we live with day in and day out.

It is only through explaining that we help all people grasp the truly omnipresent nature of chronic invisible illness and help everyone to better understand what we live with day in and day out.

To put it succinctly “Talking about our disease is the only way we can get the support, empathy, and understanding that we need from caretakers, health care providers, family and the greater public.

That being said, the article below (taken from Arthritis.org) provides the easiest and most succinct explanation of fibromyalgia “flares” and I hope that everyone reading it can understand just alittle bit better what those of us living with the chronic illness experience each and every day.

What Is a fibromyalgia Flare courtesy Arthritis.org

While a person with fibromyalgia might experience certain symptoms on a regular basis, when symptoms worsen or happen more frequently for a period of time, it is called a flare.

“A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

Symptoms of fibromyalgia include:

  • Widespread muscle pain
  • Fatigue that makes completing daily activities difficult
  • Stiffness, especially in the morning or after a long period of inactivity
  • Cognitive difficulties, also known as fibro fog, including problems with memory, concentration and organization
  • Emotional issues, such as anxiety, sadness or depression
  • Sleep problems, such as taking a long time to fall or sleep, frequent waking or waking up and still not feeling rested

While these are common symptoms among people with fibromyalgia, everyone experiences flares differently.

“People with fibromyalgia do not all experience flares the same way,” Dr. Clauw says. “A good way to explain it is that every person with fibromyalgia has their Achilles heel – their ‘thing’ that really gives them trouble. When their fibromyalgia worsens, that particular thing really gets bad.”

A person’s predominant symptoms during a flare can change over time.

Triggers for fibromyalgia Flares

One of the best ways to prevent a flare is to determine what might be causing it in the first place. These causes are called triggers. Like symptoms, triggers for fibromyalgia vary by person, but they can include:

  • Physical or psychological stress
  • Temperature and/weather changes
  • Hormonal changes
  • Traveling and/or changes in schedule
  • Changes in treatment
  • Diet
  • Poor sleep

“We know that any type of stress – not just psychological, but also physical, immune or anything that disrupts the body’s normal routine – can trigger a flare,” Dr. Clauw says. “Anything from a motor vehicle accident to surgery or another type of stressful life event can cause a worsening of symptoms. Flares can also be caused by behavioral triggers such as not sleeping well, suddenly stopping exercise or overdoing it on activity.”

Some flares are unavoidable, and certain triggers are beyond your control. You can try to identify what aggravates your fibromyalgia symptoms by keeping a log of your activities, what you eat, how you sleep and how all of those factors influence your symptoms. After logging these factors for several weeks, you might be able to see a pattern. This will help you know how to better manage the inputs that might trigger a flare.

To learn more click here

For the entire month of November, the blog will feature articles, features and information that is relented to chronic pain, invisible illness, and rare diseases in celebration of the U.S Pain Foundation’s annual KNOWvember campaign.

Source: Arthritis.org (article) The Vanguard Clinic (image)

 

 

The First 48 Hours After a Fibromyalgia Flare Up | Living with Fibromyalgia

September 18, 2017 — Leave a comment

Living with fibromyalgia sucks! There I said it…

But it is worth re-typing…

Living with fibromyalgia sucks

No matter how positive you think, or how mindful you are, there is just no way to dispute the fact that the illness sucks. Backwards and forwards. In and out. Up and down. All around; fibro stinks. Some days you wake up feeling deceptively great ready to take on the world. Most days you lie in bed angry, exhausted, and barely able to move wondering what you could have possibly done the day before to feel like you were ran over by a semi-truck.

You relish the good days but you also rue the good days since good days usually mean you’ve push your body too far. So you wake up the next day wishing the day before never happened.

You are constantly thinking ahead. Reshuffling your invisible spoons, rearranging your schedule, re-prioritizing what is most important to get done and what can be put off until a better day. Trying to mark one more item off your to do list before your body most certainly gives out on you. Then there’s the fibro fog and memory lapses. The jolts of pain. And the fatigue. Did I mention the fatigue? ( I might have forgotten). You don’t know unrelenting, indescribable, nonsensical fatigue unless you’ve lived with fibromyalgia. This post could go on and on but I’ll spare you. I think the point has been made.

September is Pain Awareness Month

And for those of you living with or knowing someone with a chronic pain condition, this post is written to help you better understand the emotional, mental, and physical toll that chronic pain takes on many of us living with an invisible chronic illness; specifically following a fibromyalgia flare.

Since my illness happens to be fibromyalgia this post is written from my personal perspective. But understand that many of these emotions, feelings, and perspectives are shared across different illnesses and it is my hope that by sharing just a glimpse of what is so often unsaid I’ll bring just a little more clarity on the complexities that come with living with a chronic illness.

For me though, what may be the worst part of living with fibromyalgia is the inconsistency of the illness. Even though I’ve lived with fibromyalgia for 7+ years; every day I learn something new. Each time I “flare” and feel increased surges of all my symptoms, it’s always like the first time since what causes today’s flare up might not be what caused the last one. You see these high tides of fatigue and pain are best known in the fibro world as a flare. What exactly is a fibro flare you ask? Thankfully I made a whole post about it.

What is a Fibro Flare?

Simply put :

“A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

You can learn more in my post here but what I most wanted to get across in this post is the emotional, mental, and physical pain that flares put on those of us living with chronic pain.

Guilt

Inevitably, flares hit us during the most inopportune times. Perhaps due to the subconscious stress of an impending big event, the physical toll of a long day, or even a sudden change in the weather the most common emotion that hits us during and after a flare is guilt. Guilt that we’ve had to cancel an important event. Guilt that we called into work again. Guilt that you let your friends or family down. The problem with guilt is that it is taxing to our already taxed systems. It is also insidious and has been one of the hardest emotions that I personally have had to learn how to manage.

Insecurity

Immediately after a flare; you begin to feel insecure. Questions like Did I push to far, can I begin again, should I go back to work, and can I handle my life begin to surface. It is easy to feel broken, embarrassed, and full of self-doubt. Sometimes I feel like I won’t survive another flare and I wonder how I’ve gotten this far. These feelings can linger for days after a flare has subsided.

Pain

Pain is a mainstay with fibromyalgia. Pain is always there even when it is managed by medication. Pain is unnatural to our bodies and sometimes it is hard to know exactly when flare pain begins and ends. Learning to exist day to day with extremely high levels of pain is something that those of us with fibromyalgia have learned to do very well. This constant pain is unnatural and can be worse immediately before or after a flare.

How Can You Help

This is just the surface of what happens after a person with chronic pain experiences a flare. If you are a caretaker, friend, or associate of somone living with an invisible illness it can be difficult to know how to help or what to do when your friend experiences a flare. You may feel helpless and not know what to do or say to best help.  Come back on September 24th to learn how you can help.

To learn more about chronic pain and pain advocacy visit the U.S Pain Foundation

I Have A Disability | Living with Fibromyalgia

January 19, 2017 — 1 Comment

I have a disability

There I said it! Despite the fact that I’ve lived with fibromyalgia for nearly 8 years writing let alone saying the words above is no easy feat. Our society has placed such negative stigma and stereotype around the word that owning this statement has taken me years. Nearly a decade to be exact.

The word disability itself is a source or much debate, spectacle, confusion and frustration. Inwardly and outwardly expressing the fact when the very definition of the word is a source of elusion is just half the battle. The fact that I and so many others  look “normal” on the outside makes it an even harder pill to swallow and even harder to truly and fully accept.

By definition a disability is:

is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these, and that substantially affects a person’s life activities. A disability may be present from birth or occur during a person’s lifetime.

The World Health Organization defines it as:

An umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives”

The very definition is complex. So one can only imagine what those of us living with a disability go through mentally, physically, and emotionally when trying to come to terms with the fact that chronic pain, lupus, fibromyalgia (and many others) are not just illnesses or diseases but a true disability. Adding to the complexity is the fact that my impairment of fibromyalgia ebbs and flows. I’m impaired but not quite enough to meet the government standard. My impairment is invisible and on the outside on many days I look completely normal. This fact is the most frustrating part.  Those of us with invisible impairments are often unable to get the understanding and compassion that the world or society gives to those with physical- visibleimpairments.

I am by no means saying that I wish I had a visible disability. I am grateful and thankful for what I am able to do and fully understand that fibromyalgia is not by any means the worst illness or disability to have. I can do many many things that many other people are not able to do. But I also cannot do many things. By societal standards my days are not normal. The ebb and flow of my disability make it such that maintaining a standard or normal job isn’t an option. The vacillating nature of my disability means that on many days I can go without a problem and then suddenly for due to no fault of my own I can be rendered bedridden for days or weeks. Every single aspect of my entire being from my thoughts, actions, steps, are impacted all the time by my disability. It consumes my entire existence and there aren’t enough words to describe what life is like. Sometimes I need a cane to walk, sometimes I can run; and then I can’t.

Everyone and anyone living with any disability be it physical, mental, or emotional understands that there is no one way to make everyone fully understand. The stigma in our society is thick and equally frustrating whether someone’s disability can be seen or not.

Personal ownership and understanding is just as complicated for the survivor as it is for the family, friends, and world. But the first step to understanding is acceptance and awareness. Whether you can see my pain or not or feel the effects accepting that no matter what you see me do I am a person living with a disability. People first language helps. Reading helps. Listening helps. Accepting helps.

It’s taken me eight years to accept, admit, and own that I have a disability. This is not bad or good nor is it an excuse. It just is and I am grateful to finally finally be able to say these words to myself and to the world.

Photo credit: Disability Arts Online