Fibromyalgia Fertile Flora

Having suffered more than usual with tummy issues for the past 8 weeks, I thought I would share this blog post from Ken Lassesen, writing for Health Rising:

(Ken Lassesen has recovered three times from chronic fatigue syndrome (ME/CFS).  In his gut series on ME/CFS/FM he provides his personal prescription for better health through gut flora manipulation. Please note that Ken is a patient, not a doctor; these blogs are for informational purposes only. Please consult with your physician before making changes to your treatment regimen. )

Fertile Flora: The Gut Microbiome and the Infection Connection in Chronic Fatigue Syndrome and Fibromyalgia

Before we look at correcting the microbiome, we should understand better what we are striving to do and why.

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Microbiome is the fancy new name for the gut and other bacterial systems that keeps us alive.  All microbiomes are not the same — in fact, the microbiome you have is connected strongly with your DNA and is actually more unique than your DNA. A recent study of identical twins found that they can be told apart by their microbiome and not by their DNA.

You have around 100 trillion bacteria according to a recent New York Times article which states:

Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their “old friends” — the microbial symbionts with whom we co-evolved.

Microbiome Under Attack?

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times have not been good for our gut flora. Our modern high carbohydrate and fat diets have been shown to negatively affect the gut microbiome but for increasing numbers of us the negative impact to our gut flora began long before junior had his first french fries.  Research indicates mothers actually pass important parts of their microbiome to their children as they move through the birth canal. Some researchers believe the higher rates of C-sections in the modern era maybe inadvertently contributing to the higher rates of allergy, asthma and autoimmune problems present.

Frequent antibiotic use may have snuffed out some good gut flora in many of us. Nor do we eat the array of probiotic saturated fermented foods our ancestors did.  Given all that it’s no surprise that the diversity of our gut flora compares poorly with those living in more traditional societies with their healthier, more varied diets and reduced C-section and  antibiotic use rates.

Micro in Name Only: Little Bugs With Big Impact

There is already abundant evidence that microflora can have system-wide effects and influence immune responses, brain development and behaviour (Williams, Hornig and Lipkin et. al).

Researchers are still figuring out how important gut flora is to our health but studies suggest the state of our gut can impact many areas, some of which are listed below:

  • inflammatory gastrointestinal disease – reduced levels of a helpful bacteria appear to set the stage for Crohn’s disease
  • cognition – specific bacterial families are associated with poor cognition and inflammation
  • obesity – certain bacteria that metabolize food more completely may increase the risk of obesity/weight) B12 levels (Lactobacillus Reuteri produces most of it)
  • autism – people with autism appear to have a unique gastrointestinal flora that has less variety than healthy individuals.

Autism provides an intriguing example of a dysfunctional gut (increased intestinal permeability, aberrant immune profiles, etc.)  possibly contributing to severe cognitive and emotional dysfunction. Hornig and Lipkin’s Center for Infection and Immunity recently published a study suggesting reduced levels of carbohydrate digesting enzymes may lead to high carbohydrate levels that foster the growth of unhealthy bacteria.  Indeed, RNA sequencing indicated an abnormal gut flora was present (decreased levels of Bacteroidetes, increased Firmicute/Bacteroidete ratio,  Firmicutes and Proteobacteria, and increased Betaproteobacteria.)

A CFIDS Association of America pilot study recently found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME/CFS. People with ME/CFS also may have deficits in the bacteria that produce B-vitamins in our guts.) These researchers believe changes like these could affect immune functioning, brain development and behaviour.

The Infection Connection

Could an infection have altered the gut flora permanently for some people with ME/CFS?

Could an infection have altered the gut flora permanently for some people with ME/CFS?

It turns out that most infections do temporarily change the microbiome which usually reverts to normal after the infection has passed. In approximately 4-8% of cases, though, this fails to happen and the microbiome remains in a new stable state.

That percentage is pretty close to the percentage of people who come down with a CFS-like state after flu-like infections. Researchers have examined immune, autonomic, endocrine functioning in people with ME:/CFS at the start of infection and afterwards with marginal success. Thus far, immune upregulation and increased symptoms during the early course of an infection and autonomic variables later on are the only unique factors found in people with infections who come down with ME/CFS.

No one yet, however, has examined the most immune-rich substrate of all – the gut. I propose that an infection induced change of gut microflora – which do not revert to normal – plays a key role in chronic fatigue syndrome.

Your Microbiome is Unique to you — and So May Be Your ME/CFS/FM

If my hypothesis on the cause of ME/CFS/FM is correct (a stable dysfunction of your microbiome) then every patient will have a different variation of their unique microbiome! This means that your symptoms will be slightly different because your dysfunctional bacteria are slightly different. This actually goes one step further, the signalling chemicals from these bacteria interact uniquely with your DNA.

Getting a good idea of your gut composition, however, is difficult. Unfortunately currently available medical tests only characterize a small percentage of the species in our gut. Tests done at academic centres (not available at commercial labs) using PCR and DNA fragments are more accurate. Furthermore, many species (~ 80%) cannot be kept alive outside of the body which makes study very difficult.

A good review is at Aging of the Human Metaorganism: the Microbial Counterpart from which the diagram below comes from.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Altering Gut Flora: More Art Than Science

That means there’s more art to changing the gut flora than science.

On the plus side, it appears very possible – by effectively declaring war against the offending bacteria – and then aggressively repopulating it with good ones, to alter the gut flora. The disruption is not easy — before the arrival of antibiotics- a reset of the gut flora often began by inducing a gut infection (often cholera) to clear the slate, so to speak. Asking a MD to infect you  with cholera to treat CFS today , of course, would be met with complete disbelief ; at one time, it was conventional medical practice and was reportedly successful. (Then again who would have thought we’d be talking about faecal transplants or using worms to alter gut flora….)

To me, any change is better than resignation to the current state of health in CFS. The key items are:

  • Killing off bad species (may have collateral damage on the good species) – antibiotics, herbs, spices
  • Feeding the good species (so they start to dominate) – prebiotics, often FOS, but there are other things
  • Disruption of the new stability (so the old ones have a fighting chance)
  • Importing good species (a.k.a. probiotics of the appropriate type, fermented foods, raw milk and faecal transplants)
  • Starving the bad species (so there are less of them) – no gluten and no sugar diets are likely doing this

I believe the following approaches have the right general approach but may lack the fine-tuning needed for ME/CFS and other disorders. Early reports suggest that ME/CFS patients, for instance, may have a major drop in all E.Coli species but in Crohn’s Disease over 95% of the invasive species are E.Coli. With one, you want to encourage (healthy) E.Coli; with the other, you want to kill off (unhealthy) E.Coli — one treatment plan does not suit all conditions.

These approaches below are correct, I believe, that we should attempt to enhance our gut flora — but they have not evolved enough to address specific gut dysfunctions:

If you are doing any of the above,  I suggest that you keep doing them but consider adding a few modifications which I will be suggesting in my following posts that are specific to the microbiome shift that may be occurring in CFS (which is likely similar to that seen with IBS).

I have yet to see any reports of the above consistently resulting in remission of CFS  but I have seen reports of symptoms reduction. I believe they are likely part of the solution but are insufficient in themselves.

Ken Lassesen has a plan…

Ken Lassesen has a plan…

In his future posts, Ken will share his current understanding and experience in being an anarchist against this dysfunctional microbiome.

Morgan Freeman: Fibromyalgia Spokesperson?

Re-blogged from  Adrienne Dellwo, About.com Guide:

Why I Hope Morgan Freeman Becomes a Fibromyalgia Spokesman

Morgan Freeman, the much-lauded actor with the amazing voice, has fibromyalgia. It apparently first came out in an Esquire magazine article last July. Here’s the part of the article where it comes up:

Every so often [Morgan Freeman] grabs his left shoulder and winces. It hurts when he walks, when he sits still, when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life. Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn’t pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn’t like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It’s such a large gesture, so outside the general demeanor of the man, that it feels as if he’s acting.

“It’s the fibromyalgia,” he says when asked. “Up and down the arm. That’s where it gets so bad. Excruciating.” ~by Tom Chiarella, Esquire

3. Morgan FreemanAccording to the Facebook page for ProHealth (a site that sells supplements and also provides a lot of great information,) a large fibromyalgia organisation has approached Mr. Freeman about being a spokesperson. Some people have apparently said they don’t think he should be, with the reasons being that he’s a man, and that because he’s still so active that it would make people think we were capable of much more that we are.

I have two things to say about that. #1: both of those “problems” are rubbish. #2: it would be a huge boon for all of us if he accepted.

Before I go into why, though, I will say this. As someone who talks about her health for a living, I completely understand if he’s reluctant to do so. It changes the way people see you, and it forces you to put extremely personal information out for public consumption. Anyone who’s ever blogged or used social media knows how nasty the public can be, and it’s exponentially worse for celebrities. (However, I have to say that my readers here are amazing – I almost never have to deal with nastiness, so thank you for that!)

OK, back to the two points above…

“He’s a man,” and “He’s too active.”

  1.  Yes, he’s a man, and 90% of the people diagnosed with fibromyalgia are women. It’s true that he’s not representative of the majority. Here’s the thing, though – while we may not like it, it’s a fact that the general public takes men more seriously. Part of the condition’s image problem is that it’s perceived as an “old woman’s illness.” If a famous, well-respected man steps up and says he has it, it’ll shatter the stereotype and do us a world of good.
  2. Yes, he’s still quite active, and many of us are bedridden or nearly so, and even a lot of us who’ve made huge improvements still can’t do a fraction of what he does. In that way, again, he’s not representative of the majority. However, in the article he talks about having to give up activities he loves, and then there’s this great quote: “There is a point to changes like these. I have to move on to other things, to other conceptions of myself.” No, he’s not bedridden – but he understands the loss and change of chronic illness. Besides, can we have an effective spokesperson who can’t make it to the set for a shoot, or travel to speaking engagements? Not likely.

It Would be a Huge Boon

The obvious comparison is Michael J. Fox and the tremendous difference he’s made for Parkinson’s disease research and awareness. Also, who hasn’t heard of Jerry’s Kids? And tennis great Venus Williams raised awareness of Sjogren’s syndrome just by announcing that she has it and being open about it in interviews.

A celebrity spokesperson with an illness can make headlines and have an impact like nothing else. Morgan Freeman isn’t just any celebrity, either – he’s a long-time A-lister whose face and voice are instantly recognizable. He’s intelligent, likable, and credible. He shatters some stereotypes just by having fibromyalgia, and more by having a great attitude about life in spite of it.

Imagine this scenario: a medical convention plans to have multiple seminars on fibromyalgia. Would your doctor attend? Do you think he/she would be more likely to attend if Morgan Freeman was speaking? Would his presence make the turnout better at an Awareness Day event? I’m thinking … yeah.

A personal plea now to Mr. Freeman:

While I understand and respect that it’s a difficult thing to do, I sincerely hope that you will become a fibromyalgia spokesman. Millions of us live not just with the pain, the exhaustion, the crippling fibro fog – but with disbelief in our illness. Husbands tell wives to get off their lazy butts and do something. Friends tell us we’d feel better if we’d just go to the gym. Doctors roll their eyes at us and regard us as whiners. We’re in desperate need of a strong, credible voice like yours telling people that this condition is real, that it’s devastating, and that we need a lot more than a little time on the treadmill to get better.

Mr. Freeman, we need a voice like yours to call for more research. We need to understand what fibromyalgia does to our bodies so that we can treat it more effectively, and so that we can possibly begin to prevent it in our children.

Your voice and your example could help inspire the millions of people who don’t know how to find a new concept of themselves, or, worse yet, have a negative concept of who they are because of this illness.

Please, Mr. Freemen – lend your voice to this fight.

Sex, Pain and Fibromyalgia

Whether we know it or not, every day we weigh up the pros and cons of doing our every-day activities: if I vacuum the house now, will I have enough energy later to prepare dinner? Is it worth the pain I am going to feel tomorrow to go to that party tonight? Do I really need to go to the supermarket today or is there something in the freezer? Every day, our heads do these calculations just so we can make it to the next day…

Here’s one that only you guys are going to understand…remember the guy that I was banned from seeing? (Yes, it was quite a long time ago) The mutual ‘friend’ who did the banning hasn’t spoken to either of us since then, so we decided we should keep in contact.

pin up 4Long story, short: after 5 months of umm-ing and ah-ing, I had sex!!!

It had been a rather long time between drinks so there was lots of preparations to do: clean the house, change my sheets, prepare supper, waxing, hair-cut, etc, etc. I couldn’t eat anything all day as I have been struggling with major IBS issues and we really wouldn’t want THAT happening!

He had warned me prior that it had been a while for him, too, so there would probably be a need for (at least!) a second act.

Without going into too much detail:

ACT ONE

Candy Shop……….chorus
https://www.youtube.com/watch?v=SRcnnId15BA&w=500

Fever……….FibroModem
https://www.youtube.com/watch?v=IP0VpKCaGvM&w=500

Crazy………..Him
https://www.youtube.com/watch?v=IP0VpKCaGvM94&w=500

Pump It……….FibroModem and Him
https://www.youtube.com/watch?v=ZaI2IlHwmgQ&w=500

Not Fair……….FibroModem
https://www.youtube.com/watch?v=JbeMw7D2Y7Y&w=500

domAnd with that, he fell asleep…and not a light sleep! I let him rest for an hour then tried to wake him up: a light touch, kissing, tickling, pull the blankets off – I even grabbed a gag gift (cat’o’nine tails) and whipped his butt…he didn’t move!

Talk about disappointment!

And then came the consequences…the next day began with me waking with the inevitable head and face ache. I tried to move from my bed and my skin hurt. I landed on my feet which, once again, felt swollen and broken despite there being no visible problem. My stomach and chest was cramping so I lay on my couch with a heat pack all day.

So weighing up the pros and cons, was it worth it?

Stupid, Bloody Pain!

From sleeping, to concentrating on a task, to simply enjoying ourselves, pain has the ability to affect us in so (too) many ways.

work_625175_7_flat,550x550,075,f_purple-painOur cognitive and pain problems appear to be associated with a sluggish autonomic nervous system (ANS).  Despite being ‘on’ most of the time, our ANS seems to take an Ambien when faced with stress. Reduced ANS functioning during activity and increased ANS activity when resting are both associated with increased pain.

According to a Spanish study, people with FM took longer to do math tests than the healthy controls.  Reduced ‘mental speed’ may not seem like a big deal but it turns out that rapid information processing is critical to carrying out more complex cognitive tasks. In fact, problems in this critical area are assumed, the authors noted, to be a ‘global indicator of neurobiological damage’.

But those same FM patients were no more error prone than the healthy controls. This suggests that their particular deficits were in working memory and executive functioning.

But very unsettling is that the tests indicated people with FM were not good at learning new tasks:  in the 2-minute arithmetic test most people (as they get acquainted with the test) improve during the second minute of the test. The FM patients improved slightly whereas the healthy controls improved greatly, suggesting, as the authors put it, that the FM patients had ‘limited adaptivity to new situations’.

Purple_Kiss_by_Forgotten_PainPain was the major contributor to the reduced performance seen on some cognitive tests for people with FM. The degree of pain reported was strongly (and negatively) associated with performance on the cognitive test – the less pain a person was in the better they tended to do and vice-versa. Patients on opiates – presumably because of the pain reducing effects – tended to better on the tests than patients not on opiates.

High levels of pain impair working memory and ‘executive functioning’ in people with FM. Studies indicating that pain increases activity in parts of the brain used to carry out tasks (prefrontal cortex, anterior cingulate) suggest what pain sufferers intuitively feel; that people in pain require enormous mental resources  to screen out pain enough for them to focus on a task.

Simply being in pain gives your ability to think a hit.

Where Have I Been?

So, I’ve been MIA (Missing In Action)…why?

I have been slowly weaning off my Lyrica (see posts below for previous updates) to see if we can find something else that will allow me to feel less pain but with less side effects.

dose last

And I have finally made it to Week 6…

No! I do not feel miraculously better – in fact, I feel horrible. I didn’t realise what the Lyrica had been protecting me from (although it didn’t feel like much at the time). Let’s work from the head down:

  • No respite from the permanent headache
  • Very lazy right eye
  • Cheekbones growing out of my face
  • (Even more) increased sound sensitivity
  • Everything smells pungeant
  • Sensitive teeth
  • Itchy face
  • Aching neck and shoulders
  • Swollen-feeling wrists and hands (without swelling)
  • Costochondritis
  • Stomach cramps
  • Acid reflux
  • Diarrhea (whether I eat or not!)
  • Taut calf muscles
  • Swollen-feeling ankles and feet (without swelling)
  • Inability to remain asleep
  • No inner temperature control

Sounds like everybody else, right? But it seems that the Lyrica had reduced the impact of some of that. I just hadn’t realised how much. But the Lyrica also brought complete and utter fog.

And now I’m back at square 1; ready to start again, in a couple of weeks, to see if we can find a more effective medication regime, that will still allow me to think like a normal person!

Related Reading:

Working With Fibromyalgia

I’m lucky(?) enough to have received a disability support pension and have the (financial and emotional) support of my mother but not everyone is so fortunate. Many of you have to deal with the added challenges of going to work (and I really don’t know how you  can do it – so huge kudos to you!)

While any job can be stressful, when you add in FM, it can almost be intolerable. Luckily, Dr Steven Yen from EverythingFibromyalgia.com has a few ideas about how to make your office environment friendlier to your symptoms.

1.)  Take Your Seat:  Many things can be done to make sitting more comfortable. There are a variety of seat cushions that help support your back, and there are even seat cushions that have heat and massage!  Consider swapping out your office chair for an exercise ball for short intervals during the day. Many FM patients find this soothing, and it will also help strengthen your core and help correct some physical problems that contribute to FM pain.  

2.)  Plant Your Feet Firmly on the Ground: You need to ensure you have good posture when you sit. Poor posture can cause structural issues that exacerbate the pain of FM.  Also, be mindful of your footwear.  For people who stand all day, that last point was a “ no-brainer.” Unfortunately, many women in office environments think that because they aren’t standing wearing high heels won’t affect them… this is not true.  When you have Fibro, you have a higher sensitivity to foot pain. If you absolutely must wear high shoes, make sure you have a comfortable pair with arch support at your desk to slip into during the day.  Many people find the simple act of changing shoes a mental and physical refresher. office-furniture-removal

3.)  Take Stretching Breaks: Once an hour take a small break, at your desk, to do a simple stretching activity.  Something as simple as gently stretching your head from side-to-side will get your blood flowing, and help combat fatigue and Fibro-Fog. Also, get up and walk while you can.

4.)  Pay Attention to the Temperature: Always dress in light layers, always bring a sweater, and always have some kind of heat source (i.e. hand warmer) at your disposal. Often, businesses keep their buildings unreasonably cold, even in the summer, and that can cause Fibro to flare.

5.)  Get Ergonomic: Did you know there are even ergonomically designed pens that help with wrist and hand pain? While there are many items on the market that can make your workday less painful,  something as simple as lowering your monitor can cause dry eyes and neck pain.  Speak with an Occupational Therapist, or even your doctor, about simple, cost-free tips. For Example, don’t hold the phone with your shoulder! It causes neck spasms! Hold the phone with your hands… You will thank me!

6.)  Talk to HR- You need to be your best advocate. You need to take care of yourself, and asking for ideas to help you be the most productive employee you can be, is not a sign of weakness.  There are a lot of accommodations you may not even be aware are available to you. Please, save the following link- it is from the Job Accommodation Network, and it outlines what may be done within the workplace. http://askjan.org/media/Fibro.html

Ideally, if a job were causing you physical and emotional distress, you would be able to find a new position or take a reduction in hours. Unfortunately, not all of us can do this.

Many people are scared about job security and don’t want to rock the boat; however, you need to take care of your needs, and never feel guilty about it!  By taking a proactive approach to your work environment, you are empowering yourself.

Finding your inner power is inspiring, and helps you heal!!

10 Reasons To Increase Fibromyalgia Awareness

Yesterday, I re-blogged an article asking us not to leave the promotion of FM awareness to only one day – May 12th…Today, I wanted to remind you of why:

    1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
    2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
    3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
    4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
    5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
    6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
    7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
    8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
    9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
    10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

‘Til Next Year?

So another International Fibromyalgia Awareness Day has passed…time to recover and take a breath – but what then? Are you going to wait until next year to promote awareness of FM?

From Fibro Daily:

purple-warrior-sandy-prenziThe efforts of Fibromyalgia Awareness Day shouldn’t be relegated to May 12th. Instead, they should infuse the whole calendar with the Fibro Warrior Spirit.

So short of storming the castle and scribbling all over accessible calendars, how do you infuse that Fibro Warrior Spirit into the days beyond May 12th?

French-castle-purpleWell, really…you should storm the castle.

Think of the castle as all the entities that resist Fibromyalgia, rolled into one, then storm it with your charm, determination, and wit. Organize the non-Fibro castle with a ferocity that makes a knight take notice! After all, this is your health we’re talking about. Your life. Don’t play proper!

tAG_129661Play strategically, with a smile. A Fibro Warrior smile.

By doing so, you’ll invoke change.

Ways to Strategically Invoke the Fibro Warrior Spirit:

1. Develop a social media presence.

Start a Facebook page and Twitter account that focuses on raising Fibro Awareness. Ask people you know or who are on your personal page to like and follow the cause, then spread the word.

To develop a strong following, you must consistently post relevant posts. The internet is FULL of these, so start researching and posting! A Fibro Warrior searches every nook and cranny for “bootie”.

My awareness campaign32. Start a Fibromyalgia group in your community.

Again, social media is going to play a huge part in this effort because you will organize meetings via the social media sites. Even if only one person responds to your meeting request posts, forge ahead!

To prepare for this meeting, take paper, pens, and highlighters for those who might not feel comfortable using technology to take notes. A Fibro Warrior always carries supplies.

Why do you need to take notes?

Because you are going to brainstorm ideas about how to publicize Fibro Awareness in your community and to do so, you need to keep that arch enemy Fibro Fog at bay.

A good way to start publicizing is by giving free Fibromyalgia presentations at local meeting spaces, such as the YMCA. Make a list of those types of places. Make sure to include:

  • gyms
  • spas
  • yoga studios

Focusing on beauty and health businesses makes sense, as their clientele are more attuned to wellness. Also, such businesses tend to be frequented by women, which is your target audience as more women are diagnosed with Fibromyalgia than men. However, don’t forget the men! Their pain remains severely unacknowledged.

At the very least, all presentations should feature an explanation on the history, diagnosis, and research of Fibromyalgia.

3. After brainstorming, approach local businesses about using their space to give a presentation on Fibromyalgia.

That means you also need to:

  • Ask if the business is willing to hang flyers prior to the event.My awareness campaign2
  • Ask the owners/employees/fitness instructors to make an announcement before each class/session they lead.
  • Make sure to network the right way! You want to let the public know when a business has helped your efforts. That means you should give them a public thanks by mentioning them on social media and in promotional materials.
  • Hit up as many businesses as possible to reach as many people as possible. You can use your Fibromyalgia group to divvy up presentation responsibilities—i.e., one person does the approaching, one does the presenting, one handles the promotions.

A victorious Fibro Warrior knows how to delegate and appreciate.

4. Use every endeavor—meetings, presentations, and interviews—to further the cause.

Make a sign-in sheet and request that people leave their name and Facebook/Twitter info. Prominently display your own contact info so people can like you on Facebook or follow you on Twitter.

Once you have the contact info, add them to your friends and keep them informed of all you are doing. The more people you tell, the more people will share.

Consider this info collection your Fibro Warrior battle cry.

5. Learn to write a press release. You can easily research this online.

After building substantial support and giving a few presentations, send out a press release about upcoming presentations to:

  • local TV station
  • local radio stations
  • Fibro websites and podcasts

Local media personalities are always looking for positive stories about the community. In the press release, include all the online success you have had plus the presentations you’ve given. Mention that you’d love to share more about your Fibro Warrior efforts over an interview.

If they say no, don’t let them off so easily. Contact them again, at a later date. A Fibro Warrior always keeps the target in sight.

6. Fight for Fibromyalgia legislation on a city, state, and national level.

(For USA) Check out government websites to see if the ones you are focusing on have released any proclamations about recognizing Fibromyalgia.

Also, a very handy map can be found at http://fmcpaware.org/resolutions-and-proclamations?sid=640

If you click on a state, it will reveal what fibromyalgia legislation the state has passed.

If your city/state doesn’t have any, it’s time to start:

  •  writing letters
  • writing emails
  • making phones calls

to government officials. You can find their names via search engines and government websites. Include any press releases and media coverage you have received. Politicians like numbers (surprise!) If you are making a positive wave in their community, they’ll want to hitch a ride.

Remain diligent on follow-through with the politicians you contact. So many efforts fail because of a lack of follow-through. Just because a contact don’t respond right away doesn’t equate to wasted efforts. You just have to outlast the politicians’ determination to ignore. Don’t get used to being ignored. Fibro Warriors stand tall and proud even in the face of adversity!

7. Breathe. Laugh. Live.

In order to succeed as a Fibro Warrior, you must live your life to the fullest.

Don’t let Fibromyalgia prevent you from doing that.

Enjoy a hot bath. A massage. Eat a luxurious meal. Nap. Spend time with family and friends. Work. Do yoga.

By pursuing activities outside of the Fibromyalgia realm, you will actually strengthen the Fibromyalgia realm. That’s because you’ll see it with a refreshed, renewed vision.

Remember: You are a Fibro Warrior, so invoke and change. Some people don’t even think you exist, but those people don’t know what’s about to hit them.

Purple_Warrior_by_AjarnNog

Hidden Pain or Thick Fog?

Now, I get it.

When I was first diagnosed, my doctor put me on Lyrica immediately; and then, it was steadily increased. If you’ve been reading this blog, you’ll know that I’m weaning off it. (If you’re not up to date, check Whatever…Nothing!) Well, I’m up to Week 4: I’m pissed off, short-tempered and in pain.

doses

It has even ruined the best part of my week: my shiatsu massage.

Last week’s massage was fabulous. This week, however, was another story; and, as I said at the beginning, now I understand how some of you can’t stand a massage.

pain 1pain 2The same place (no idea what it’s called) was incredibly sensitive but it got to the stage where if Peter touched my shoulder, that spot hurt; if he touched my arm, that spot hurt; if he touched my knee, (you guessed it) that spot hurt.

pain 3pain 4In fact, by the time the hour was up, if Peter touched anything, that spot hurt!

pain 5

Why the hell am I doing this to myself?

Well, the good news is that the Fibro Fog has lifted. So tell me, which would you prefer: the pain or the fog?

FINALLY…

Canadian researchers have released the first set of guidelines to help doctors diagnose and manage Fibromyalgia.

The evidence-based guidelines are the first national set in the English-speaking western world, said Dr John Pereira, a co-author of the guidelines from the University of Calgary’s faculty of medicine and a physician at the Calgary Chronic Pain Centre.

“For many years health-care professionals dismissed fibromyalgia as a non-existent condition. And more recently, while people have accepted that perhaps it does exist, still patients were told there was nothing that could be done for them,” Pereira said.

“In these guidelines we have clearly listed how to diagnose this condition and how to treat it effectively. So while there’s no cure for fibromyalgia, there are now good treatments that patients can consider.”

Main-Picture-Licensed-With-CaptionBecause of the prevalence of the condition, the guidelines recommend that primary care physicians take over the diagnosis and management role that has often been left to specialists.

The guidelines suggest a multi-modal treatment such as exercise, cognitive-behavioural therapy, education, self-management and relaxation techniques as well as medications that target a patient’s most bothersome symptoms: pain being the most serious.

The goal of treatment is to improve symptoms and “optimize function,” according to the guidelines. There is no one ideal treatment, although the guidelines say management should be tailored to each patient’s symptoms.

“Currently, there is no cure for fibromyalgia, but the guidelines set out the most appropriate management strategy,” said rheumatologist Dr Mary-Ann Fitzcharles, a corresponding author from the Research Institute of the McGill University Health Centre.

So, wherever you are in the world, perhaps this is something you can show your doctor/s to help establish your treatment plan.