It’s a Very #Fibro Christmas Sing-a-Long

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84. maxine_stressOn the first day of Christmas, FIBRO gave to me:
A bout of Anxiety

 

On the second day of Christmas, FIBRO gave to me:
Two New Trigger Points
and A bout of Anxiety

 

On the third day of Christmas, FIBRO gave to me:
Three Days of Heartburn
Two New Trigger Points
A bout of Anxiety

 

223. fibro

On the fourth day of Christmas, FIBRO gave to me:
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the fifth day of 86. crawl into bedChristmas, FIBRO gave to me:
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the sixth day of Christmas, FIBRO gave to me:
74. prescriptionsSix Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

 

 

On the seventh day of Christmas, FIBRO gave to me:
68. HatSeven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

 

 

On the eighth day of Christmas, FIBRO gave to me:
205. centredTotal Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the ninth day of Christmas, FIBRO gave to me:
292.FM LovesongNine Painful Cuddles
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the tenth day of Christmas, FIBRO gave to me:
Paresthesia in my (ten) Fingers
Nine Painful Cuddles203. acupuncture
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the eleventh day of Christmas, FIBRO gave to me:
Eleven ‘New Cures’ proffered
Paresthesia in my (ten) Fingers
Nine Painful Cuddlesxmas
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the twelfth day of Christmas, FIBRO gave to me:
Twelve Judgmental Relatives
Eleven ‘New Cures’ proffered
Paresthesia in my (ten) Fingers
Nine Painful Cuddles
Total Disequilibrium
Seven Tension Headaches
Six Medications124. indifferent friends
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

How Many do You do?

Q. What do talking, showering, and doing laundry have in common?

A. They’re all activities that seem simple to most people, but can be thoroughly exhausting for us.

TheMighty.com partnered with the National Fibromyalgia Association to discover what everyday activities we engage in (or don’t engage in) because of fibromyalgia. How many do you do? Got any to add?

  1. “Not showering every day or keeping up with laundry. People see widget 5me as lazy but in reality, I’m prioritizing what I can do each day. Otherwise I’d be out for a month. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks.”
  2. “I keep a lot of my curtains closed and the brightness on devices on lowest; when I’m having a flare light hurts me so much. My smell and hearing are too sensitive. Repetitive noises are agony to me.”
  3. “Napping. I hate sleeping during the day. I feel miserable when I nap, but if I don’t lie down, I will fall down. Some of my friends love to nap and envy me when I tell them I spent the afternoon in bed. To me, though, napping is just one more way my life is not my own now.”
  4. I clench my jaw really tightly when in pain (probably just looks like I’m pulling weird faces!). Also people think I’m strange for not drinking alcohol, but it reacts with my meds and a hangover feels a million times worse!”
  5. “I rub my hands a lot and sometimes my feet. Most people don’t think this is anything more than self-comfort. The reality is, the weakness and pain in my hands, arms and legs is something I deal with every day.”
  6. “This weekend I was at a wedding. Most people at my table were dancing and were trying to tell me to join them. They don’t know I was bravely smiling through the pain and that it was a two-hour battle just to get dressed up and show up. There was no strength left for dancing.”
  7. “Google-Earth-ing everywhere I have to go (or am considering going) and have never been before to assess if the building would have stairs (inside and out) and a parking spot nearby.”
  8. “I wear a lot of fuzzy socks because I have cold feet issues. Having fibromyalgia means when I get cold my pain gets elevated even worse. Ugg boots are also helpful because they are soft and warm.”
  9. “Avoiding family gatherings as much as possible. I come from a very big and loud family who likes to hug. I’m surrounded by all of them and the kids are running a round and everyone is talking laughing and having a good time. No one realizes how huge that sensory overload is for me.”
  10. “A prime example is ‘test-driving’ chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by various people on all shifts, so they get moved around and swapped for each other pretty often. When I’m working in that area, I sit in each chair for a few seconds to see which one is going to cause me the least amount of pain throughout the day (the chairs are identical, but some are older/used more than others). People who don’t know I have fibro may find it odd or humorous, but I think even people who do know seem to find it ‘amusing’ at times.”
  11. 119-fibro-fog“I’m soon to be 27 and have the memory of a goldfish. I mix up words and stutter so bad. People don’t realize I have fibromyalgia and this is why I do this.”
  12. “Taking a deep breath as I reach the entrance door at work, putting a massive smile on my face. Chest out, shoulders back… keeping on my ‘I’m OK’ face until I crumble back into my car at the end of the shift.”
  13. “I really don’t talk much because I have fibro fog and find it hard to carry on a conversation. So this sometimes makes me appear disinterested in others, but that isn’t the case at all. I find it hard to find the words to say.”
  14. “When I have to stand for more than a couple of minutes I rock back and forth to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control.”
  15. Giving up my social life. I go to work, and I come home. That’s all I can manage to do. I have to choose between going to church, family activities, and meeting with friends over rest. And lately, rest wins.”
  16. “Sometimes I’m having a really bad flare and can’t get out. Rather than admitting my weakness, I say the kids are sick or something, so no harm, no foul. It makes me uncomfortable admitting it, and it makes them feel even more uncomfortable/angry/disappointed, etc.”
  17. “I walk out of work when my shift ends and drive right home. I don’t say goodbye to anyone because if we end up chatting it’ll be even longer until I get to lounge at home and rest.”
  18. “Turning down TVs and radios when people come in the room. The noise sensitivity makes sounds get louder the more there are different sounds. Each added person, instead of making it harder to hear something, amplifies the sounds.”
  19. “When you take an extra day off work from a holiday weekend. It’s not to just play around and be lazy. It takes me days to recover from travel, from cooking the Thanksgiving turkey, from Christmas shopping, even from just sitting in an uncomfortable chair eating a holiday meal with family and friends.”
  20. “In college, people don’t realize I always tell them, ‘I have to go to the bathroom, be right up with you guys’ because I don’t want anyone looking at me me while I slowly climb my painful way upstairs. So I always make up an excuse to be the last one to go up, and alone.”
  21. “I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.”
  22. “I take a few minutes every so often when I’m out, like when I go to the bathroom or pop to the kitchen, and just sit and gather myself. Allow myself to feel the exhaustion and pain then breathe and go back in.”

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

If You Poison Us, Do We Not Die?

industries_health_research and development_ Tarantula venom could provide relief from Irritable Bowel Syndrome_bannerTARANTULA venom is being used to help develop pain relief medications for people suffering from Irritable Bowel Syndrome.

Researchers from The University of Adelaide in South Australia found that a specific peptide in the spider venom could be used to understand how people sense pain. Two toxins were found to specifically target Nav 1.1, a voltage-gated sodium channel in the nervous system to initiate the electrical impulses that signal pain.

Associate Professor Stuart Brierley said the study demonstrated that Nav 1.1 contributed to mechanical, but not thermal, pain signalling.

“Using the highly specific peptide in the spider toxin we were able to work out how pain nerve fibres signal in a healthy situation and also in chronic abdominal pain such as what you see in Irritable Bowel Syndrome (IBS),” Assoc Prof Brierley said.

“We found that the spider toxin was able to cause a lot more pain in the IBS state than what it was in the healthy state. It’s important to note that because of the studies we should be able to develop treatments for IBS based pain – blockers for Nav 1.1 that only target the peripheral and don’t go to the central nervous system.”

106. cure #1

The causes of IBS are still unknown but it affects about 10 per cent of people globally (and lots of FMS patients). Chronic abdominal pain is the predominant symptom of IBS.

Assoc Prof Brierley said that until recently there had not been much research into the role of the Nav 1.1 channel subtype on the peripheral nervous system.

“Over a long period of time we were able to work out that one particular compound was in the venom that you could isolate, separate out and acted on this Nav 1.1 channel,” he said. “It gave us a highly specific and highly selective tool to look at its role in pain.”

Many nociceptors or pain sensing nerve fibres use Nav channels to initiate the electrical impulses that signal pain. Although the study focused on the peripheral nervous system, the findings also pose potential implications for central nervous system diseases such as epilepsy (and FMS)

The study was a collaboration between the University of Adelaide, Flinders University, South Australian Health and Medical Research Institute (SAHMRI), the University of Queensland, The University of California, John Hopkins University and the Medical College of Wisconsin. It was published in Nature last week.

take it

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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Did the Earth Move for You, Too?

According to recent study findings by Anthony S. Kaleth, PhD, associate professor at the School of Physical Education and Tourism Management, Indiana University-Purdue University Indianapolis, whole-body vibration exercise effectively reduced the severity of pain in patients with fibromyalgia.

146. best exerciseBUT it is not entirely clear whether these improvements were the result of added vibration or just the effects of being more active.

24 women with FM were randomly assigned to either 8 weeks of twice-weekly, lower-body, progressive-resistance exercise with whole-body vibration or an attention control group. Whole-body vibration involved patients standing, sitting or laying on a vibrating platform to induce alternating muscle contraction and relaxation.

Patients were assessed at baseline and at 8-week follow-up for fibromyalgia-related physical function, pain severity and muscle strength.

The researchers found a significant improvement in pain severity among patients in the whole-body vibration group compared with controls, but the magnitude of muscular strength improvement was not different between groups.

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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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Foggy with a Chance of Rain

We experience a complicated mix of symptoms (just ask all those doctors we visit), the most frequent of which are an overwhelming feeling of fatigue (this is my personal favourite!) and pain.

For those new to FM, one of its hallmarks can be very scary – Fibro Fog

119. fibro fog

Fibro fog is a complete and utter lack of energy (even after a full night’s sleep) that causes an inability to focus or concentrate. This exhaustion makes it difficult to exert mental or physical energy for anything.  Fibro fog is a real cognitive impairment that makes simple tasks, such as remembering names or following directions, difficult if not impossible. There are, however, a few ways to help that don’t involve medications (because sometimes it’s those medications that make the fog worse!)

  • Pace yourself. Don’t pile on too many tasks for each day, and the ones that must get done should be scheduled for your “best” time of day. If the fog lifts more in the morning, schedule important meetings or other tasks early.
  • Develop a routine. This gives a predictable structure to the day so there is less need for remembering what is supposed to happen when.
  • journal picKeep it simple. Write lists, take notes, and utilize a personal planner. Keep your space organized and clutter-free, and deal with any paper (mail, bills, etc.) as soon as you get it to stay organized.
  • Get physical. People with FM report that physical activity relieves the painful symptoms, and research shows that moderate daily activity eases symptoms of depression and encourages better sleep.
  • Control your stress. There is a strong link between stress and chronic pain; practice deep breathing, visualization, and other meditative techniques to deal with or plan for stressful situations!

There are some new online brain-training sites such as Lumosity that have shown some promise in helping people develop concentration, flexibility in thinking, and otherwise increasing the neuroplasticity of the brain. These are free or low-cost, easy to try, and may help lift the fog over time.

For families of FM patients, it is important to understand that fibro fog is real. Be supportive and help to keep schedules reasonable and stress to a minimum. Participate in physical activity with your loved one, and help them to remember important events. The more stress you can alleviate, the better off everyone will be!