May 12th is coming up, and this is an important day for me not just because it’s Mother’s Day, my Dad’s birthday, and two years since we lost our precious Janma, but because it’s also Fibromyalgia Awareness Day. Because of this, I wanted to take some time to explain what fibromyalgia is to those of you that don’t have a completely clear idea, share some advice on how to understand someone with a chronic illness, and explain why spreading awareness about fibromyalgia is so important.
Fibromyalgia is often described as any of the following: an auto-immune disorder, a pain and fatigue disorder, a musculoskeletal system disorder, a disability, and a jerk. It is all of these things.
Fibromyalgia is a diagnosis that is made based on exclusion, so it is given when no other medical explanation for a person’s pain can be found. FM is defined by its tender points, which are 11-18 localized areas in the body that become incredibly painful as if badly bruised when touched. Many patients with fibromyalgia experience much greater pain than this, though, on a daily basis, and can feel sharp stabbing pain in most parts of their body. Some people experience this kind of pain literally throughout their entire body, 24 hours a day, every day of their lives.
This is a great picture someone made about where the 11-18 tender points for the diagnosis of fibromyalgia are, compared to where the tender points actually are in people with FM:
Many people with FM also develop allodynia, which is a pain due to stimulus that does not normally provoke pain. So, when things that should not cause pain, for some reason do. As an example, imagine someone brushing a feather along your arm, and then imagine that instead of it feeling like a feather it feels like a blow torch. This is what allodynia feels like.
Many people with FM have sensitivities to cold weather, because it can make their pain worse, and also frequently experience migraines, and as a result can be sensitive to noise and light. Almost all people living with fibromyalgia experience chronic fatigue on a regular basis, if not every day. For some, fatigue can be more debilitating than pain. Insomnia is also common among people with fibromyalgia, as are other unexplained neurological problems like tremors and visual snow.
It’s also common for patients to develop “fibro fog”, which is actually a cognitive dysfunction / impairment, causing difficulty with concentration, trouble processing information, an inability to pay attention to more than one thing, distraction and confusion, disorganised thinking and memory problems.
means we have cognitive dysfunction / impairment, causing us to have difficulty concentrating, trouble with processing information, an inability to pay attention to more than one thing, are easily distracted and confused, disorganised thinking and most noticeably memory problems. means we have cognitive dysfunction / impairment, causing us to have difficulty concentrating, trouble with processing information, an inability to pay attention to more than one thing, are easily distracted and confused, disorganised thinking and most noticeably memory problems. means we have cognitive dysfunction / impairment, causing us to have difficulty concentrating, trouble with processing information, an inability to pay attention to more than one thing, are easily distracted and confused, disorganised thinking and most noticeably memory problems.
Many people with fibromyalgia experience problems with their ears, nose, and throat, ranging from constant ringing in their ears, to chronically congested sinuses, to a chronic sore throat, and some people with FM experience all three of these things. Food allergies and complications are common among people with fibromyalgia too.
There is no known cause of FM. Most studies done on fibromyalgia are aimed at finding a neurological cause, but some studies suggest that fibromyalgia is caused by interactions between both the neurological system and the immune system that are not yet understood. Spreading knowledge about the need to understand the underlying cause, or causes, of fibromyalgia, is vital to ultimately discovering more effective treatments for people with FM.
I learnt some quite alarming statistics from a girl I know through Tumblr, who also has FM. She says: “The suicide rate for people with FM is 10 times higher than the general population. 27% of people with fibromyalgia have both clinical depression and FM. This means that a person with fibromyalgia is only 3 times more likely to develop clinical depression than a person without FM, yet 10 times more likely to kill themselves. There is a huge discrepancy between these numbers that leads me to believe that people with FM are not necessarily committing suicide because they are depressed, but because they are denied any form of adequate pain management and this is the only way out of the excruciating pain that they live with day in and day out. Keep in mind that pain is literally a form of torture. Studies show that fibromyalgia is not fatal, but at what risk is there no risk to fibromyalgia? When the suicide rate for people with FM is 10 times higher than that of the general population, this, to me, makes fibromyalgia a fatal disease.”
I recently read an article on “How to Understand Someone with Chronic Pain”, and will share with you a few little insights:
- Recognise the difference between “happiness” and “healthy” – chronic pain sufferers have experienced pain consistently from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.
- Chronic pain sufferers spend the majority of their day in considerable pain – they may be unable to enjoy things they used to enjoy, causing them to feel as if they are stuck inside a body they have little or no control over.
- Recall a time when you experienced pain, then multiply the intensity and attempt to imagine the pain present twenty-four hours, every day, without relief.
- Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain, they are. They are merely coping, sounding happy and trying to look normal.
- Look for the signs: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts.
- Understand and respect the chronic pain sufferer’s physical limitations. Being able to stand up for 10 minutes doesn’t necessarily mean that they can stand up for 20 minutes, or give a repeat performance tomorrow. They may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes. This is one of the hardest and most frustrating components of chronic pain.
- Pep talk can be aggravating, demoralizing and patronising. Do not say things such as: “But you did it before!” or “Oh, come on, I know you can do this!”
- “Getting out and doing things” does not make the pain vanish. Telling them they need to exercise or do things to “get their mind off it” may frustrate them to tears, and is not correct advice, especially if you’re not medically trained and haven’t got a clue. If they were capable of doing these things at all, or all of the time, they would.
- Admit when you don’t have the answers – there is no harm in saying “I don’t know” and then offering to find things out.
- Do not undermine their ability to cope – be patient, and don’t attempt to invoke guilty thoughts in them.
- Do not attempt to compare the flu or a sore back to their pain. They too have had both of these things also, and they are not the same, not one little bit.
- Try to remember how very lucky you are, to be able to do all of the things you do.
- Do not suggest alternative treatments – they’ve already thought of it.
- Chronic pain wreaks havoc on the body and the mind, it is exhausting and exasperating and those who suffer are trying to look and act normal and are doing their best to cope. Accept them just as they are.
- Be helpful – the chronic pain sufferer depends a great deal on people who are not sick for support.
- Remember – “There is strong, and then there is chronic illness strong.”
People with fibromyalgia need your help. Knowledge is power, and the more people that know about what fibromyalgia is and how it affects those who have it, the closer we get to finding effective treatments for fibromyalgia.
Below is a list of articles and blog posts written by me and other bloggers, about fibromyalgia. I would appreciate it if you could please take the time to read one or more of articles before May 12th and educate yourself about fibromyalgia. On May 12th please share something you’ve learned about fibromyalgia with one other person, or if you have a facebook, tumblr or twitter account please post one or more of these articles to your page.
Purple is the colour that represents fibromyalgia, so if it’s not an inconvenience, please wear something purple on May 12th even if it’s just earrings, socks, or a pin. If you do wear something purple, I would love it if you sent me a photo of yourself (or of you with your family or friends) in purple so that I can post it to my blog.
Here is a link to a piece written by said Tumblr friend, which made me cry with familiarity:
Why the Current Treatment for Fibromyalgia is Failing:
These are blog posts by other people with fibromyalgia or other chronic illnesses that accurately and powerfully describe what it is like to live with fibromyalgia:
The Spoon Theory:
An Open Letter to Peers, Authority Figures, and Other Assorted Ablests:
This is my personal take on Living with Fibromyalgia:
Thank you all for taking the time to read this, and please remember to mark your calendars for Fibromyalgia Awareness Day. Educate yourselves about the truth about fibromyalgia, and on May 12th help stop the spread of ignorance about FM by sharing your knowledge with others.