Myth-Understood

I read this blog post from The Invisible F and was really impressed by the way the information was presented. I just HAD to re-blog:

nessie2Six Common Fibromyalgia Myths

WHICH OF THE FOLLOWING IS TRUE?

(A) NESSIE IS REAL

(B) FIBROMYALGIA IS REAL

*

Alarming doesn’t quite sum up some of the myths  people have about fibromyalgia – a condition that affects possibly 3-6 % of the world’s population.

I assure you, it is real. The pain is real. The debilitating chronic exhaustion is real. The insomnia is real. So is every other symptom that makes it a dreaded illness to contend with.

What is also real is the ignorance that people show towards it and us – the sufferers. Here are some of the common myths that people have about FMS.

Myth 1: It’s all in your mind.

Truth: Really? When people perpetuate these misconceptions they add to the stigma of  fibromyalgia as a figment of our imagination. We are not hypochondriacs. 20 years from now when science and medicine expose more about this baffling condition,  you’ll have to bite your tongue. Don’t be part of the problem, please.

Myth 2: You can cure yourself with…wait…don’t tell me, the acai berry! No wait! what was the  latest quick fix being advertised online?

Truth: There is no such thing as a quick fix. Most sufferers will tell you they’ve tried any and  everything, desperate for a solution, as well as spending years to and from specialist doctors, doing all manner of medical tests.

Myth 3: Some good ole exercise will fix yuh up!

Truth: This is one of those times when I have to once again go ‘really?’ I’m not saying  exercise doesn’t help but the notion that some doctors and people have that regular exercise will sort our problems is wrong. Most sufferers, including myself, CANNOT  manage proper exercise.

On a very good day, if I push myself I can manage 9  minutes of graded exercise with a break in between. Then I pay for it afterwards. Sometimes we can be in bed, sore and aching for says after exercise. Every sufferer is different of course. What I will say is routine stretching and physical movement (i.e. walking the dog or rushing to work) sometimes helps in decreasing the severity of  muscle pains. It doesn’t in any way affect my debilitating exhaustion as the doctor promised.

Myth 4: It’s another excuse for laziness

Truth: Firstly, let me say shame to all those who beguile the social welfare system by abusing the invisibility of fibromyalgia and other chronic pain illnesses. Such actions   are ignominious and hurt the REAL sufferers.

Secondly, to the sceptics, we are NOT lazy. Just because we look well it doesn’t mean we are not in pain or badly exhausted or dizzy or hurting from one of our myriad of symptoms. We might look normal but our bodies are functioning with defects and abnormalities in our  central nervous system. Take it for granted that the simplest of activities tire us immensely and can encourage flare ups. For me sometimes it is having a shower,  combing my hair or walking up a flight of stairs. Many of us fix steely facades on and we brave the day. We take care of families, we force our bodies to work…because we have to.  Our friends who cannot manage this and depend on social welfare, are no less courageous than we are. So judge us only if you can walk a mile in our shoes  damn it.

Myth 5: You just need to lose weight

Truth: If I got one pence for every time a fibromyalgia sufferer has complained about being  told this, I’d be well on my way. Certainly, as with any condition, having a healthy  weight contributes to the overall well-being of the individual. But to suggest to any    sufferer that their muscle pains and slew of other symptoms like migraines, irritable  bowel syndrome, insomnia and exhaustion would be remedied solely by weight loss, well… it is ludicrous.

Myth 6: You can live a normal life like everyone else

Truth: I wouldn’t call it a normal life, whatever normal is anyway. We TRY to live but with great difficulty. TRYING to live with chronic pain and unbearable exhaustion,  migraines, cognitive impairments etc makes it incredibly hard to focus on THE NOW.  And what is living if one cannot live in the present? And enjoy the beauty of now? Have you tried to think clearly or creatively when you have a bad migraine or pain? Well multiply that and imagine having to live with it everyday. We contend with something like this and I cannot call this normal. Also, please note comparing  other’s ailments to ours doesn’t reduce our suffering in any way. It serves no purpose.

What other myths have you heard or had to debunk? Tell us so we can clear it up for them.

Gentle hugs :)

We Cope, Not Hope (results)

Disease as an adverse interruption of life is the prevalent interpretation of chronic pain conditions. But there are different ways to cope with pain, and there are different ways to regulate emotions associated with chronic diseases. Because most patients with chronic conditions are unable to ‘solve’ our persisting pain by ourselves (in terms of recovery or repair) and to find distance to negative emotions associated with pain, we have to find strategies to adapt to a long-lasting course of illness.

We have to find ways to maintain physical, emotional and spiritual health in spite of often long-lasting courses. Thus, our coping with chronic pain is an ongoing process which includes appraisals of stress, cognitive, behavioural, and emotional coping responses, and subsequent reappraisals of stress.

One of the most frequently used concept on adaptation strategies for patients with chronic pain diseases differentiates active and passive coping:

  • Active coping (i.e., problem solving, including collecting information and refocusing on the problem, or regulation of emotion by focusing attention on the emotional response aroused by the stressor) is associated with less pain, less depression, less functional impairment, and higher general self-efficacy;
  • Passive coping (i.e., avoidance and escape) is correlated with reports of greater depression, greater pain and flare-up activity, greater functional impairment, and lower general self-efficacy.

Although the importance of decreasing maladaptive and encouraging adaptive coping responses is emphasized by innovative treatment programs for chronic pain (if you can get in!), one nevertheless has to ask which adaptive coping strategies were of relevance for the patients.

I asked the same question of you: Which of the following coping strategies best describes the way you cope with your chronic pain?

The answers (so you don’t have to return to the poll) were:

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medication, follow advice of medical practitioners, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day)

The study, which started all of this, had 579 participants – we had 239 (not too bad). The study also asked demographic type questions but I decided not to make it too long a poll so we could have more answers.

From highest reliance to lowest here are the results from both the study and our poll:

results

We (as a group) seem to be much more aggressive, active participants in the search for sufficient condition management.

coping

Most study patients tended to externalize the process of disease management, i.e., the chronic pain disease was regarded as an adverse interruption of life, and patients called experts for help (i.e., medical doctors or therapists), and followed their advice or relied on the effects of prescribed remedies, which alone is a rather passive strategy. However, if you add (internal) cognitive-behavioural changes (i.e., patients may change distinct aspects of their life, try to become more consciously, healthy, physically fit, use distinct diets etc) or try to think positive (resolve cumbering situations of past, realize shelved dreams and wishes etc.) – both are active strategies.

In face of an insufficient manageability of chronic pain, some patients may call upon ‘more powerful’ external others (i.e., Trust in Divine Help), because the conventional resources of help seem to be (subjectively) exhausted.

In general, both groups relied on external powerful sources to control their disease (i.e., Trust in Medical Help; Search for Information and Alternative Help), but also on internal powers and virtues (i.e., Conscious Way of Living; Positive Attitudes).

In contrast, Trust in Divine Help as an external transcendent source and Reappraisal: Illness as Chance as an internal (cognitive) strategy were valued moderately.

Escape from Illness (which is not regarded as an adaptive coping strategy) was highly associated with depressive disorders.

The researchers came to the conclusion that to restore a sense of self-control over pain as well as the conviction that you are not necessarily disabled by disease and that pain is not necessarily a sign of damage is a major task in patient care. Changing negative/maladaptive illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.

Apart from effective pain management, a comprehensive approach is needed which enhances the psycho-spiritual well-being, i.e. self-awareness, coping and adjusting effectively with stress, relationships, sense of faith, sense of empowerment and confidence, and living with meaning and hope.

Further studies are required (of course!), particularly longitudinal studies to measure changes in the weighting of adaptive coping strategies and interpretations of disease with respect to pain intensity, and comprehensive intervention programs.

lrg_Ornamental_Divider__Englische_Linie

F.Y.I. – The utilization of the different adaptive coping strategies did not significantly differ with respect to gender, while the educational level had a small impact on Trust in Medical Help, which was the highest in patients with a lower educational level. Age had a significant impact on Trust in Divine Help, Trust in Medical Help and Conscious Way of Living. The duration of the condition had no significant impact on the adaptive coping strategies.

An obvious result showed that patients from the outpatient clinic had significantly higher scores for Trust in Medical Help and Escape from Illness than patients from the rehabilitation clinic or patients attending the mind-body program, and were also in Search for Information and Alternative Help. This may indicate higher need for external help.

 

Chronic Counsel

Fibromyalgia is a chronic condition. A chronic condition is a medical condition that will last a long time – perhaps forever. Some chronic conditions get worse over time, some may improve with treatment, and some may remain dormant until an acute flare-up.

The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

  • Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.
  • Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
  • Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.
  • Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.
  • Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.
  • Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

  • Be honest – all I want to know is that you are here and that you care about me.
  • Be there for me in any way you can.
  • Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.
  • Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.
  • Let me know that I can always talk to you – even if it’s just a vent session.
  • Always listen when I am frustrated – chronic illnesses are VERY frustrating.
  • Be there if I need help, but also encourage me when I want to do it myself.
  • Remind me, every now and then, that I am coping well.
  • Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.
  • Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.
  • Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)
  • Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.
  • Offer to help research, if I want your help.
  • Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.
  • Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.
  • Offer to take me to the doctor and take notes for them.
  • Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.
  • Advocate for me.

DO NOT:

  • Don’t tell me how I “should” feel – Unless you have my illness, you do not know.
  • Don’t presume you know what’s wrong with me.
  • Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.
  • Don’t discuss worst-case-scenarios unless I bring it up first.
  • Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.
  • Don’t criticise me for whining on a rough day.
  • Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.
  • Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.
  • Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.
  • Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.
  • Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!
  • Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”
  • Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.
  • Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.
  • Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)

Related articles

Sore Pink Bits?

One in four women suffer from chronic vulvar pain at some point in their lifetime, according to the National Volvodynia Association.

AND women with chronic vulvar pain, or vulvodynia, are at a substantially increased risk for other chronic pain conditions, according to a University of Michigan Health System study published in Obstetrics & Gynecology (just in case sore pink bits weren’t enough!)

The new research reveals that women suffering from this painful vaginal condition have between a two and three times more likelihood of having other chronic pain conditions, including FM.

Vulvodynia is chronic vulvar pain that consists of burning, stinging, soreness, or rawness in the area at the opening of the vagina. To date, it has no identified cause, although a genetic component or nerve injury may be the culprit. The pain can be so severe that it makes exercise, intercourse and even sitting unbearable. The condition may occur for months, but can last for years.

“Chronic pain conditions like these can seriously hamper quality of life and it’s imperative that we understand the commonality among them,” says lead author Barbara D. Reed, a professor of family medicine at the U-M Medical School. “Chronic pain is starting to get a lot more attention, with more research being done on all of these disorders, as well as combinations of these disorders. I think the identification and treatment of these conditions will continue to improve.” (Yippee! – but there are huge numbers of these conditions; we need to get FM out ‘there’ so we can be first on the list!)

“Women who have these disorders often see physicians but are not given a diagnosis or are given an erroneous diagnosis and continue to suffer without being treated properly,” Reed says. “Until their symptoms have a name, it can be really discouraging because patients begin thinking it’s all in their head.

Millions of people have chronic pain. This report stresses the need to further study relationships between these types of disorders to help understand common patterns and shared features.

Reality of Chronic Pain is Unbearable

“Pain is Australia’s third most costly health problem and arguably the developed world’s largest ‘undiscovered’ health priority.”

– Professor Michael Cousins AM, Chair National Pain Strategy

***I am using Australian statistics as this is what I have access to at the moment. I would think it was safe to assume that the numbers are similar throughout most developed countries.

One in three Australians lives with chronic pain,1 a condition which they say is poorly understood, and which has led one in five to consider suicide.2

The new statistics, contained in a special Pfizer Health Report, highlight the need for the federal and state governments to implement the National Pain Strategy, said Coralie Wales, President of Chronic Pain Australia in early 2010.

The National Pain Strategy (NPS) was the key outcome of the National Pain Summit held at Parliament House, Canberra, in March 2010.

Australia was the first country in the world to develop a national framework for the treatment and management of pain. Via this framework, Australia is developing a coordinated approach to health policy reform.

“Australians need access to an improved network of pain management options, which is what the National Pain Strategy focuses on,” says Ms Wales. “These figures show chronic pain is a very real and debilitating issue for many Australians, as well as the families, friends, employers and others who are associated with people in pain. It is time we took more coordinated action to relieve the suffering associated with chronic pain.”

According to the Pfizer Health Report on Chronic Pain:

  • 29% of Australians say they experience chronic pain.3  Women (31%) are more likely to experience chronic pain than men (26%).4
  • 5% of Australians with chronic pain have attempted to commit suicide because of their pain5  and a further 20% have thought about suicide.6
  • Chronic pain is reported across all age groups ranging from 19% of people aged 18-29, to 29% of those aged 66 and over.7
  • Among those who experience chronic pain, 47% say it is the result of a diagnosed condition such as arthritis, an inflammatory condition, multiple sclerosis or cancer.8
  • Forty per cent (40%) of people in pain say chronic pain has followed from a life event such as an operation or accident-related illness.9
  • 13% of people in pain report there is no identified medical reason for their pain.10

Ms Wales notes, “Pain is real even when there is no medical explanation. The biggest issue for some people living with chronic pain is that others often don’t believe their pain is real. When the person suffers compromised social outcomes as a result of their pain being seen as invalid, the person is experiencing ‘stigma’.”

“It is extremely sad that some people consider ending their life as a result of a combination of the pain, the isolation, the stigma associated with the condition and unsuccessful pain management. As a community we need to ensure people with chronic pain get more support to help them continue on with their lives.

“The National Pain Strategy provides clear guidance on how this can be achieved. The first step is recognising chronic pain as a separate condition so healthcare professionals can give it the time and attention it deserves.”

Dr Chris Hayes, Pain Medicine Specialist and Director of Hunter Integrated Pain Service, John Hunter Hospital says that recent research has profoundly changed our understanding of why pain persists and the best management approach. Medicines may be helpful in managing pain, particularly when included as part of a multi-modal strategy.

“There is an urgent need for education of both healthcare professionals and the broader community so that new understandings can be translated into practical support and co-ordinated management for people in pain,” Dr Hayes said.

“As the number of Australians suffering from chronic illnesses such as cancer, arthritis and inflammatory conditions rise so too will the incidence of chronic pain. Managing pain has much in common with the management of other chronic conditions. Medical treatments help to a certain extent but overall the benefits are relatively modest. The greater gains come from a broader “lifestyle” approach. This includes a focus on nutrition, activity, thoughts and the deeper story around the condition. Providing people in pain with the support required to work through these issues is a key part of the challenge in an overloaded health system.”

The research also found that only 16% of Australians are satisfied with how their pain is managed.11 “Living with pain isn’t easy,” Ms Wales added. “Navigating the health system can be challenging and the experience can be lonely. However, with the right support and pain management approach, chronic pain can be made more manageable.”

The NPS has attracted global interest, particularly in the USA, Canada and Europe.

References

[1] Stollznow Research for Pfizer Australia: Chronic Pain, April 2010, 10.

[2] Ibid, 42

[3] Ibid, 10

[4] Ibid.

[5] Ibid, 43.

[6] Ibid, 42.

[7] Ibid, 10.

[8] Ibid, 11.

[9] Ibid.

[10] Ibid.

[11] Ibid, 25.