Funny ☺But Sad 😓

This appeared on my Facebook feed so I reproduce, with permission (and some extra cartoons) for your (bitter-sweet) amusement

Top 10 Funny Living with Fibro Factors:

 

1. Hair dryers that look normal but actually weigh 3 tonnes when you go to dry your hair.

2. Having to allow extra time to cool off after showering because you’re now sweating bullets.

258. sleeping together

3. Sleeping under lots of blankets because you’re freezing but still needing the fan on because you are also too hot.

4. Thinking you were having a good day until you have to walk more than 8 steps and discover someone poured concrete into your legs when you weren’t looking

146. best exercise

 

304. smoke and mirrors

5. Trying not to get frustrated when people say “I thought you were getting better”…it’s a chronic condition, there is no better just good days, bad days and the ever dreaded flares.

6. Forgetting your children’s names…or why you came into the room…or how to drive…on brain fog days.

119. fibro fog

 

chronic comic 174

7. Trying to decide whether to be honest or just keep it simple when someone asks how you’re doing.

8. Mentally trying to weigh up if you are whinging too much about your fibro or not speaking up enough about what you are going through. Either way most people don’t understand.

85.second opinion

 

86. crawl into bed

9. Feeling exhausted all the time even when you get enough sleep OR not being able to sleep because pain is too much. Either way you’re still tired.

10. Knowing that you have to laugh at the absurdity of this condition because fibro has already stolen too many tears.

231. pleaSURES

 

100.1 pain in the ass

Doctor with Fibromyalgia Wishes People Understood

Reblogged from Weekly AmericaI'm A Doctor With Fibromyalgia. Here's What I Wish People Understood About It Hero Image

Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself.

This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women.

Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors:

1. Fibromyalgia is real and can be treated—but it requires a holistic approach.

Research on fibromyalgia has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it’s a “real” illness.

This changed in 2002, when a groundbreaking study showed abnormalities in how the brain processes pain in fibromyalgia. These brain-imaging studies gave the objective data to prove fibromyalgia was “real” and triggered a decade of intensive research resulting in three drugs approved by the FDA that dull pain signals.

Fibro fogBut those medications don’t treat the often more debilitating symptoms of fatigue and fuzzy thinking called “fibrofog.” To do that, doctors and patients have to be knowledgeable about different treatment options—especially holistic approaches such as making dietary changes to reduce inflammation or adding supplements to boost cellular energy production.

2. It’s no longer a complete mystery.

I often hear the myth repeated that “we don’t know what causes fibromyalgia.” Recent physician surveys reveal that most doctors still don’t know how to help their fibromyalgia patients—in spite of the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “perplexing,” “mysterious,” and “confusing.”

The TV commercials that say fibromyalgia is a condition of hyperactive pain nerves don’t tell the whole story. In fact, pain-processing problems are only the tip of the iceberg. A much bigger factor is a stress (or danger) response that has gone haywire and is constantly on “red alert,” leading to a chain reaction that results in fatigue, brain fog, and muscle pain.

The only way to get lasting improvement in all of these symptoms is to systematically address the negative effects on the body of a chronic hyperactive stress response. A chronically activated stress response wreaks havoc by preventing deep sleep and keeping muscles tense, leading to pain and tenderness; impairing digestion and energy production; and throwing hormones out of balance. It also ultimately causes the pain-sensing nerves to increase the volume of their signals.

3. Fibromyalgia is primarily a sleep disorder.

Unfortunately, many doctors, even sleep specialists, are not aware of the sleep issues that come with fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have demonstrated over and over that patients experience inadequate deep sleep that is frequently interrupted by “wakeful” brain waves. This deep-sleep starvation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the condition.

121. rise and shineTreating sleep is the key to treating fibromyalgia, and it’s where I see the most benefit in reducing pain, fatigue, and brain fog. Sleep must always be improved before any other treatment will work, so it’s vital to address this with your health care provider to treat hidden sleep problems like obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep.

4. Most doctors don’t know much about fibromyalgia—and it’s not their fault.

315. internet connectionFibromyalgia is an orphan disease that is not claimed by any specialty and instead awkwardly straddles the fields of rheumatology, neurology, sleep, and pain medicine. The majority of care falls to overwhelmed primary care doctors who don’t have time to go searching for new treatment ideas among the sea of medical publications. The big medical journals neglect fibromyalgia. In fact, since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical publication in the world.

Since the busy primary care provider does not have time to actively search out new treatments for fibromyalgia, research has to be brought to their attention in some other way—namely by their patients. So in my new book, The FibroManual, I included a health care provider guide with research-supported medical guidance for patients to bring to their doctor’s attention.

5. There is no cure for fibromyalgia, but there are effective treatments.

There is no cure for fibromyalgia—yet. But we don’t have cures for many chronic illnesses, like diabetes and high blood pressure. What we do have are effective treatments that manage those diseases well enough that they are minimally detrimental to one’s health. And powerful treatments for fibromyalgia are out there as well.

When people ask me if I have recovered from fibromyalgia, I say, “Yes.” I’ve found ways to feel much better and minimize its impact on my life. Ultimately, I do still have fibromyalgia, and there is no magic bullet that completely eliminates all symptoms. It requires work, and I have learned that consistency in my self-care routine is essential to keeping my symptoms under control.

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How are You?

Hello. How are you?

chronic comic 174

No…really.

I’m asking. I don’t want to hear that you’re ‘fine’ because you’re being polite; because you think I don’t care; because you’re used to most people not caring. So…how are you? You can actually tell me in the comments below because I’m going to tell you how I’m feeling…

I am so sad (yes, I’m depressed and I constantly get angry comments here for referring to it as sadness…but that’s what it is to me – it’s a deep, deep pool of sadness that I cannot swim out from). It seems that, suddenly, the people who I have chosen to surround myself with, no longer care how (or even, if) I answer the ‘How are You?’ question.

And, the worst part is that they don’t have to ask. They all know me well enough to see that there is something very wrong…they are just choosing not to delve further.

My sadness comes from asking myself why – they’re sick of hearing about my woes? they want to have a life beyond the lounge-room? they no longer believe in my worth? they no longer care?

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International Day of Yoga

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Yoga is a 5,000-year-old physical, mental and spiritual practice, with its origin in India, which aims to transform both body and mind.

international-yoga-day-logo-300x429On December 11 in 2014, the United Nations General Assembly declared June 21 as the International Day of Yoga. The declaration came after the call for the adoption of 21 June as International Day of Yoga by Honourable Indian Prime Minister, Mr. Narendra Modi during his address to the UN General Assembly on September 27, 2014 wherein he stated: “Yoga is an invaluable gift of India’s ancient tradition. It embodies unity of mind and body; thought and action; restraint and fulfilment; harmony between man and nature; a holistic approach to health and well-being. It is not about exercise but to discover the sense of oneness with yourself, the world and the nature.” In suggesting June 21, which is the Summer Solstice, as the International Day of Yoga, Mr. Narendra Modi had said that, “the date is the longest day of the year in the Northern Hemisphere and has special significance in many parts of the world.”

Yogi and mystic, Sadhguru notes the importance of this day in the yogic tradition: “On the day of the summer solstice, Adiyogi [the first yogi] turned south and first set his eyes on the Saptarishis or Seven Sages, who were his first disciples to carry the science of yoga to many parts of the world. It is wonderful that June 21 marks this momentous event in the history of humanity.”

FYI: 175 nations, including USA, Canada and China co-sponsored the resolution. It had the highest number of co-sponsors ever for any UNGA Resolution of such a nature.

95. yogaWhat better reason to do you need to give yoga a try? Tomorrow?

As most of us know (whether we do it or not!), exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety. The key is to start slowly. Begin with stretching and low-impact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga can also be helpful. (Remember: prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.)

Now, yoga isn’t for everyone but exercise is! So why is exercise important for fibromyalgia?

  • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression.
  • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.
  • A study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)

What Are Other Benefits of Exercise for Those With Fibromyalgia?

chronic comic 163Regular exercise benefits people with fibromyalgia by doing the following:

  • burning calories and making weight control easier
  • giving range-of-motion to painful muscles and joints
  • improving a person’s outlook on life
  • improving quality of sleep
  • improving one’s sense of well-being
  • increasing aerobic capacity
  • improving cardiovascular health
  • increasing energy
  • placing the responsibility of healing in the hands of the patient
  • reducing anxiety levels and depression
  • relieving stress associated with a chronic disease
  • stimulating growth hormone secretion
  • stimulating the secretion of endorphins or “happy hormones”
  • strengthening bones
  • strengthening muscles
  • relieving pain

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Sometimes a Duck is…

So, it’s Winter in Australia – not as cold as some places but, still, too cold for me.

I have been suffering from intense pain in my rib-cage and chest. The aching and stabbing pain felt like I had broken and bruised ribs.

Bloody hell! I thought, it’s that awful costochondritis AGAIN!!!

For over a week, every morning I was waking up in extreme pain. It seemed to dissipate by the time it was bed-time. But then, it would all start again.

After a week of agony and really cold weather, I finally realised that I was sleeping all curled up, in the foetal position, and it was my own elbows causing all that pain!

Sometimes a duck is just a duck!

117. fibro duck

Related Posts:

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At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

invisible

Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

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A Drink to Your Good Health

I have previously written about the first study to examine the association between alcohol consumption, symptom severity, and quality of life of individuals with FM. 103. drug comboTreatment of FM is challenging because the drug therapies currently available are expensive and associated with numerous undesirable (understatement) side effects and addiction or tolerance issues. Despite undergoing drug treatment, patients are often left with unrelieved pain, restricted mobility, and reduced physical function.

63. vegetables(Unfortunately for some) Lifestyle interventions, including dietary modifications such as alcohol consumption, have gained popularity as explorations in symptom management.

Several studies have examined the association between alcohol consumption and chronic pain conditions. In one study, regular weekly or daily alcohol consumption was shown to be a significant protective factor for the development of chronic pain. Two studies have also shown that moderate alcohol consumption correlates with a reduced risk of rheumatoid arthritis .

In this current study, researchers are the first to examine the association between alcohol consumption and FM symptom severity and quality of life. Among the 946 adult FM patients (94 % women, mean age of 49 years old) reporting low or moderate alcohol consumption (≤3 or >3 to 7 drinks per week), there was lower FM symptom severity and better quality-of-life scores compared with those who reported no alcohol consumption. However, these associations were not observed in patients who were heavy drinkers (>7 drinks per week) compared with non-drinkers. Drinkers had higher education, less unemployment, lower body mass index, and lower frequency of opioid use than non-drinkers. Thus, their analyses were adjusted for these potential confounders.

133. well behaved womenBecause alcohol consumption consists of complex behaviours that intersect with many social, economic, psychological, and demographic factors, disentangling this complex web of relationships is a challenge. Interestingly, after exploring possible mechanisms for their findings, the researchers speculated that alcohol consumption may reduce FM symptoms and improve quality of life by mediating psychological benefits and stress relief or by promoting factors associated with social integration. Another possible mechanism proposed is central nervous mediation via the modulating gamma-aminobutyric acid (GABA) system. Behavioural and pharmacological therapies that modulate or mimic the effects of GABA production can be promising for FM treatment.

This initial exploration into the relationships between alcohol consumption, symptom severity, and quality of life for FM has posed a number of questions that need to be answered by future studies with stronger study designs. There are limitations associated with cross-sectional study design: information bias is not uncommon in cross-sectional studies providing data on both exposure and outcome variables from questionnaires – questionnaires are administered at the same time in a cross-sectional study and rely on respondent recall, the measurement errors of exposure (ie, alcohol consumption) may be dependent on the measurement errors of the outcomes (ie, quality of life or FM symptoms). Where such dependent bias occurs, the association between exposure and outcome is likely to be inflated. This basically means that these preliminary results should not be used as grounds for advising patients to drink alcohol (Bummer!).

70. never aloneThis research sheds new light on plausible hypotheses and mechanisms to consider in future methodologically rigorous studies to improve the well-being of individuals with FM, but does not give us immediate relief.

Time is of the Essence

“Next Tuesday, we’re going shopping,” says my Mommy.

Monday arrives and I haven’t forgotten that we are going shopping on Monday; I just haven’t realised that it IS Monday.

One of my big problems is keeping track of time, especially dates. Birthdays and special events creep up on me and catch me unprepared all the time. I know when things are supposed to happen. I hear when some-one tells me about something. I also know how long it is supposed to take me to get ready to leave the house – I really hate being late, but I can’t seem to get a handle on this particular issue.

Like Adrienne Dellwo has said:

The farther out something is planned, the worse it seems to be. It’s like my brain files it under the heading “months away” and then never updates it to “next week.” If something is set for tomorrow or a week from Thursday, I do pretty well. Those things apparently go into the “really soon” file and stay more on the radar.

There’s a learning disability called dyscalculia – a learning disability that deals with math. It is similar to dysphasia, which includes those word-finding difficulties so many of us have. Dyscalculia not only impairs math and number abilities (forgetting concepts, transposing numbers), it also involves:

  • Difficulties with time: inability to remember schedules, keep track of time, or remember a sequence of events.
  • Spacial problems: impaired direction sense and memory of how things are laid out, leading to frequently getting lost or becoming disoriented.
  • Difficulty sight-reading music or learning instrument fingerings.
  • Inability to remember names.

72. manufacturers warrantyResearch shows that dyscalculia involves dysfunction in a specific part of the brain – all of the above problems stem from the same cause. It means that this is ONE problem only; and not a whole lot of unrelated issues being attributed to FM.

This doesn’t necessarily make me feel better after being at the casino last week and not being able to work out the action on the Craps table (I was a Craps dealer/supervisor for 14 years!)

Dyscalculia can occur as the result of some types of brain injury, in which case the proper term is acalculia (or Acquired Dyscalculia), to distinguish it from dyscalculia which is of innate, genetic or developmental origin.

Dyscalculia isn’t something you can take a pill for – it’s something you have to live with. Scientists have yet to understand the causes of dyscalculia. 119-fibro-fogThey have been investigating in several domains including short-term memory being disturbed or reduced, making it difficult to remember calculations (Does this sound like Fibro Fog to you?) I haven’t found any scientific research that says that FM causes Dyscalculia (if you do, please share it with all of us!) but it certainly makes it worse.

The good news(?) is that it is a recognised learning disability, just like dyslexia or dysphasia. If it causes problems for you at work/school, you can talk to your boss/teacher about having this learning disability without having to disclose that you have FM, or trying to explain brain fog.