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FibroDaily…starring ME!!!
Recently, I was interviewed for FibroDaily’s Fibro Warrior of the Week. The post came out today and WOW! I sound great (even if I do say so myself!) You can see the interview HERE; or just read my copy and paste…
Our fourth FWOTW is nothing short of a triple fibro threat! Simone (aka FibroModem) does more to give back to the fibro community than just about anyone. Between blogging, creating her cartoon, running her online fibro awareness store, and promoting her Visible Army campaign, she hardly has time for flare ups! Most of all, we love her ability to find humor in fibro, make us laugh, so maybe we can even forget about it for a minute. -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Simone: I was born and bred in Melbourne, Victoria in Australia. I am single, live alone and I have Fibromyalgia. I was 40 before I had even heard about Fibromyalgia.
I used to work in hotels, on cruise ships and in casinos. Then I decided (at the age of 34) that this kind of work was not challenging enough so I spent 6 years working (in the ‘real’ world – Crown Casino) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.
I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver!)
For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.
Finally, with the help of my family, drugs and counseling – graduation!
I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!
Unlike many, I have NOT learned to manage this condition (don’t talk to me about pacing! I have too much to do!) so I am not working and I spend a lot of time on my couch sharing my thoughts and attempts at a life with my new friends on Facebook, Twitter and my blog: fibromodem.wordpress.com.
I love trying and learning new things – I really believe that I can do anything! So I try everything (and there’s the reason we won’t talk about pacing!) I love my nieces and nephews (and their parents) beyond anything I could ever imagine. I love my Mommy – who is the best and most supportive mother (and person) in the entire world. And I love being able to link up with people all over the world to support each other.
FD: When did you first suspect that something wasn’t right? What happened?
Simone: In about 2007, about halfway through my (mature-age) studies, I had (what I call) a major breakdown.
I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver).
For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.
With the help of my family, drugs and counseling – graduation! But I never got back to full throttle.
I was only able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA! I believe that the depressive episode was the beginning of my fibro onset.
FD: When were you diagnosed with Fibromyalgia?
Simone: November 2011.
FD: When you received your diagnosis, how did it affect you?
Simone: At the time, I let out a big sigh of relief – I finally had a diagnosis: I wasn’t crazy; but, little did I know that a diagnosis wasn’t going to lead to an immediate, successful treatment.
FD: Since then, how has your outlook on life changed?
Simone: I still believe that ‘it has to get better than this’ so I have not returned to my depression at all (knock on wood!). There just MUST be something out there in the whole wide world that can help – we just have to find it.
The part of fibro that I have appreciated is the time it has forced upon me: time to walk up the street and meet all the local shopkeepers, time to spend time with my nieces and nephews, time to try lots of new things.
FD: How does Fibro affect your day-to-day life?
Simone: I wake up – it feels like my body has melted into my mattress, so it is with great difficulty that I drag myself up and out of bed. Sometime during the night, the bones in my feet broke while I was sleeping (yes! that’s the only description I have for how my feet feel while I try to get them moving in the morning). And up. Head spinning. Need to wrench open door with two hands as power has not been fully restored to my wrists. Guess what? The bones in my hands (what’s the area between your wrists and your fingers called?) were in the same tragic accident as my feet.
Slowly, I move towards the kitchen for my medication, then to the couch – for about 2 hours – until my body catches up to the waking up process.
I no longer work as I cannot offer any reliability to an employer or clients but I have kept myself busy with my Facebook page, blog, Fibromyalgia Awareness Shop and Twitter. I have a continuing awareness project called the VISIBLE Army for all sufferers and supporters.
FD: What can’t you do anymore because of Fibro?
Simone: No more playing squash with my father; no more working; no more all day shopping trips; and, limited driving.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Simone: Lots and lots of things: many of us think we’re stuck – nothing is going to change, this is it, this is my life! But why? There are still so many things we can do – and, for those of us stuck at home, perhaps an opportunity to try something new.
Since being diagnosed, I have:
- Attended my first burlesque performance
- Attended my first hydrotherapy class
- Started my first Facebook page
- Attended my first Bowen therapy treatment
- Went to the Doggy beach for the first time
- Wrote my first Blog post
- Made my first video
- Opened my first Fibro awareness store
- Attended my first Pilates session
- Attended my first Yoga session
- Attended my first Tai Chi class
- Had my 2 year old nephew sleep over for the first time
- Produced my first cartoon character (FibroModem Girl)
- Published my first E-mag – LIVING WELL with FIBROMYALGIA
- Attended my first Shiatsu treatment
- Attended my first reflexology session
FD: What has been your experience with seeking medical treatment for Fibro?
Simone: The medical professionals, who I have seen, have been very helpful for diagnosis but are too ready to give up – the number of times I have heard ‘that’s all I can do for you’ can lead to depression! We NEED a young, motivated doctor – some-one who is still positive and wants to be the best! some-one who wants to discover new things, who wants to be published, who is willing to experiment with new things! It seems that the older the doctor, the more jaded he has become! We need a few “CHANGE THE WORLD” kind of doctors!
FD: How has Fibro affected your relationships, friends, family, partners?
Simone: I have become even closer to my Mommy AND I have been lucky enough to re-discover a friendship that means the world to me. BUT other than those two relationships, everyone else has disappeared – sad but true.
FD: What is the biggest challenge you face living with fibro?
Simone: Loneliness.
FD: What inspires you to keep on fighting?
Simone: Actually I don’t know – perhaps it is the nagging thought that ‘it has to get better than this!’
FD: What advice do you have for other people who are living with Fibro?
Simone: 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.
FD: Do you have a funny Fibro story you can share?
Simone: I find most things funny (mostly in a sad way) so I started a comic called FibroModem Girl – if you can’t laugh, you will only cry!
Need to laugh? See more FibroModem Girl.
Follow Simone on Twitter: @Fibromodem
Like Simone on Facebook: https://www.facebook.com/FMawareness2012
Check out FibroModem online:
FibroModem Blog
Fibromyalgia Awareness Shop
FibroModem Girl
Man Undiagnosed
More research is needed, particularly on why men who reported FM symptoms were less likely than women to receive a FM diagnosis, says lead author of a recent study, Ann Vincent, M.D., medical director of Mayo Clinic‘s Fibromyalgia and Chronic Fatigue Clinic. “Health care providers may not think of this diagnosis when face to face with a male patient with musculoskeletal pain and fatigue,” Dr. Vincent says. “These findings need to be explored further.”
Researchers focused on Olmsted County, Minn., home to the comprehensive medical records pool known as the Rochester Epidemiology Project, and used two methods to try to discover the number of people over age 21 with FM.
To the best of my knowledge, this is the first report of the rate at which FM is being diagnosed (or undiagnosed) in a community. This is also the first report of prevalence as assessed by the FM research survey criteria.
Firstly, they used the epidemiology project to identify just over 3,000 patients who looked like they might have FM: only a third had a documented FM diagnosis. That amounted to 1.1 per cent of the county’s population 21 and older.
In the second method, researchers randomly surveyed Olmsted County adults using the American College of Rheumatology‘s fibromyalgia research survey criteria. The criteria include the hallmarks of FM: widespread pain and tenderness, fatigue, feeling unrested after waking, problems with memory or thinking clearly and depression or anxiety, among other symptoms. Of the 830 who responded to the survey, 44, or 5.3 per cent, met those criteria, but only a dozen had been diagnosed with FM.
Based on the study’s findings, the researchers estimate that 6.4 per cent of people 21 and older in Olmsted County have FM—far more than have been officially diagnosed with it.
The study found that the discrepancy between the number of people reporting FM symptoms and the number actually diagnosed with the condition was greatest among men. Twenty times more men appeared to have FM based on their survey response than had been diagnosed, while three times more women reported FM symptoms than were diagnosed.
“It is important to diagnose fibromyalgia because we have effective treatments for the disorder,” says co-author Daniel Clauw, M.D., director of the University of Michigan Health System Chronic Pain & Fatigue Research Center. Do we?
Related articles
- Research Mad! (fibromodem.wordpress.com)
Chronic Discovery
Credit: Brigham and Women’s Hospital
This image, from a Brigham and Women’s Hospital study, shows the Default Mode Network in patients with chronic low back pain (cLBP) and in healthy subjects (CONTROLS) before and after manoeuvres which are painful for the cLBP but not for the CONTROLS.
Notice that after the manoeuvres, the cluster in the front of the brain is disrupted (it shows less colour) in the cLBP patients, but not in the CONTROLS. This supports the study finding that pain changes brain connectivity.
Scientists have long searched for a method to objectively measure pain and a new study from Brigham and Women’s Hospital advances that effort. The study appears in the January 2013 print edition of the journal Pain.
“While we need to be cautious in the interpretation of our results, this has the potential to be an exciting discovery for anyone who suffers from chronic pain,” said Marco Loggia, PhD, the lead author of the study and a researcher in the Pain Management Center at BWH and the Department of Radiology at Massachusetts General Hospital. “We showed that specific brain patterns appear to track the severity of pain reported by patients, and can predict who is more likely to experience a worsening of chronic back pain while performing manoeuvres designed to induce pain. If further research shows this metric is reliable, this is a step toward developing an objective scale for measuring pain in humans.”
Specifically, researchers studied 16 adults with chronic back pain and 16 adults without pain and used a brain imaging technique called arterial spin labelling to examine patterns of brain connectivity (that is, to examine how different brain regions interact). They found that when a patient moved in a way that increased their back pain, a network of brain regions called Default Mode Network exhibited changes in its connections. Regions within the network (such as the medial prefrontal cortex) became less connected with the rest of the network, whereas regions outside the network (such as the insula) became connected with this network. Some of these observations have been noted in previous studies of FM patients, which suggests these changes in brain connectivity might reflect a general feature of chronic pain, possibly common to different patient populations.
“This is the first study using arterial spin labelling to show common networking properties of the brain are affected by chronic pain,” said study author Ajay Wasan, MD, MSc, Director of the Section of Clinical Pain Research at BWH. “This novel research supports the use of arterial spin labelling as a tool to evaluate how the brain encodes and is affected by clinical pain, and the use of resting default mode network connectivity as a potential neuro-imaging biomarker for chronic pain perception.”
Related articles
- Discovery could eventually help diagnose and treat chronic pain (eurekalert.org)
- Why Do We Feel Pain? (everydayhealth.com)
- Default-Mode Network (dranilj1.wordpress.com)
A Different Pain in the Tummy
Just after writing my post last night, I began to feel some extreme pain in my new cannula position. Uh-oh!
Now, I jotted down notes about what happened last night (in really bad hand-writing). I’ll let you know why at the end but here are my contemporaneous notes:
- Dinner – 6pm
- Bing for My Nurse (MN) – tummy cannula hurting. Unknown Nurse (UN) arrives – MN is on dinner break: wait ‘til then? Sure, ok.
- Ketamine alarm goes off – empty bag. UN comes in, turns off alarm: will be back to change bag.
- Alarm goes off again. UN returns: right back with another nurse (Ketamine protocol)
- Alarm goes off again. UN changes bag. MN will still come in after her dinner break.
- Wait 15 minutes – pain increasing. No, it is not the drugs making me feel things!
- Bing for MN: no-one comes.
- Get up to go to nurse’s desk. MN and I return to room to check out site.
- Need to change cannula site. Try 4 different places before finding good vein.
- Ice tummy site as all swollen, inflamed and burning.
- Feels like site is being torn open. Very hot!
- Ask to see member of the pain team.
- Crying
- New Nurse (BN – Bitch Nurse) appears: Are you crying? Yes. Crying will make you feel worse. I know, but I hurt – I would like to see a member of my pain team. We have paged some-one, now stop crying!
- 8.30pm – ask BN for valium. Told to stop crying again.
- Between 10-10.30pm – Pain member arrives and prescribes antihistamine. Between BN and pain member, I feel like they think I am making up the pain; that I’m crazy but even I can see that my tummy is swollen, red, lumpy and burning hot.
- Midnight – ask for seroquil when vitals being taken
- 1.10am – BN changes bag without another nurse (protocols?)
- 2.30am – ask for another valium
- 4am – BN takes vitals – hoping to just get through the night. Have never felt this kind of pain before.
- 7am – BN changes bag, still without another nurse!
- 8am – Morning nurse takes vitals – Yippee! I survived!
Now the main reason I wrote all of this down was because I seriously thought something major was wrong with me and that I was being held prisoner in my hospital room. I could have called Mommy to take me away but where were we going to go? A hospital?
Supposedly, I had an allergic reaction – it could have been to the dressings, the cannula or the ketamine – and 24 hours later, I am still in pain (but much less, thank you). Just like I would never complain to a waitress before I had completed my meal (she might spit in my food!), I didn’t complain or make a scene but, needless to say, I have written an appropriate complaint to the hospital management.
Gotta say – so far, I would NEVER, EVER do this again!
Related articles
- Treading Murky Waters (fibromodem.wordpress.com)
- Abracadabra! And the Pain has Disappeared? (fibromodem.wordpress.com)
Umm…What Exactly are Tender Points?
Tender points are one of the major characteristics of FM (along with all those others like widespread deep muscle pain, fatigue, and depression).
Tender points are pain points or localized areas of tenderness around joints, but not the joints themselves. These tender points hurt when pressed with a finger. Tender points are often not deep areas of pain. Instead, they are superficial areas seemingly under the surface of the skin, such as the area over the elbow or shoulder.
The actual size of the point of most tenderness is usually very small, about the size of the tip of your thumb. These areas are much more sensitive than other nearby areas. In fact, pressure on one of the tender points with a finger will cause pain that makes the person flinch or pull back. Tender points are scattered over the neck, back, chest, elbows, hips, buttocks, and knees.
The cause of these pressure points is not known. Even though it feels like these areas are inflamed, researchers have not found particular signs of inflammation when examining the tissue. What is known is that the locations of tender points are not random. They occur in predictable places on the body. That means many people with FM experience similar symptoms with tender points.
There are 18 tender points important for the diagnosis of FM (see illustration below).
These tender points are located at various places on your body. To get a medical diagnosis of FM, 11 of 18 tender point sites must be painful when pressed. In addition, the symptom of widespread pain must have been present for three months.
Your doctor can test the painful tender points during an examination. Yet even with tender points, you need to tell your doctor about the exact pain you feel in those areas. You also need to tell the doctor about your other symptoms, such as deep muscle pain, fatigue, sleep problems, depression, irritable bowel syndrome, and more. It is often best you maintain a symptom diary/log and take it with you to your doctor (see Improving Patient-Doctor Communication)
If you don’t explain all your symptoms fully to your doctor, the doctor will not be able to effectively(?) treat the FM. As a result, you won’t get any relief from the chronic pain and other symptoms.
When a doctor tests tender points for pain, he or she will also check “control” points or other non-tender points on your body to make sure you don’t react to these as well. Some physicians use a special instrument called a ‘doximeter’ or ‘dolorimeter’ to apply just the right amount of pressure on tender points.
Pain management for tender points with FM involves a multifaceted treatment program that employs both conventional and alternative therapies. While the reason is not entirely clear, FM pain and fatigue sometimes respond to low doses of antidepressants. However, the treatment forFM and tender points involves medications, daily stress management, exercise, hydrotherapy using heat and ice, and rest. Other remedies for symptoms may also be used.
Related articles
- Hi Ho! Hi Ho! Off to the Doc We Go! (fibromodem.wordpress.com)
- A Magic Pill? Not! (fibromodem.wordpress.com)
Obsessed with Poo!
After another uncomfortable visit to the toilet, I decided to Google ‘Focal Nodular Hyperplasia’ and ‘IBS.’ I found absolutely nothing that linked the two but I did find another study that shows that nearly all patients with Irritable Bowel Syndrome and Diarrhea (IBS-D) actually have a different condition!
It was found that patients thought to have IBS-D – a condition which affects up to 15 per cent of the US population (35 million Americans (US study so US statistics – I’m sure the figures apply to other countries, too)) – may in fact have a different condition altogether.
This was the largest study to date and indicates that doctors may use IBS-D as a blanket diagnosis, rather than cite a collection of separate medical conditions.
According to the study, 98 per cent of participants were found to have a diagnosis different from the initial presentation of IBS-D. This study refutes the existence of IBS-D as a single medical entity and implies that this diagnosis is simply a catch-all diagnosis. The findings also revealed that 68 per cent of the participants actually had conditions related to treatable (that means that 68 per cent of us could actually feel better!) bile acid induced diarrhea as a result of gallbladder dysfunction.
A dysfunctional gallbladder that produces an abnormal amount of bile causing chronic diarrhea can be very treatable, as opposed to IBS, for which physicians and patients often search for treatment to alleviate the discomfort, often to no avail.
According to the study, once patients were accurately diagnosed, 98 per cent experienced a favourable response (that is, the elimination of urgency and incontinence for at least three months). Wouldn’t that be nice? The end of a lifetime of discomfort, unease and frustration!
“The results of this study demonstrate quite convincingly that many patients may needlessly be going through the physical and emotional pain of IBS and functional diarrhea when, in reality, they may be afflicted with something else that is easily treatable,” said Saad F. Habba, M.D., gastroenterologist at Overlook Hospital and the study author.
Test results
- 41 per cent were found to have Habba Syndrome (a relatively new entity relating dysfunctional gallbladder with chronic diarrhea , which is successfully treated with bile acid binding agents);
- 23 per cent of the study subjects were diagnosed with post cholecystectomy diarrhea;
- 8 per cent had lactose intolerance; and
- 7 per cent had microscopic colitis.
Doesn’t quite add up to the 98 per cent – but it still shows that there is some hope!
Related articles
- And It All Comes Back to the Poo! (fibromodem.wordpress.com)
- IBS Affects from 10% to 15% of the U.S. Population, Says the International Foundation for Functional Gastrointestinal Disorders (prweb.com)
Live(r)ly Noises
Today is MRI (Magnetic resonance imaging) day.
I received a phone call, from the place where it is all happening, telling me that, because the MRI is on my liver, I am not permitted to be sedated via IV, although I am permitted to have an oral sedative. (It seems that I have to be awake enough to breathe in when they tell me.)
An MRI is a scan used for a medical imaging procedure. It uses a magnetic field and radio waves to take pictures inside the body. It is especially helpful to collect pictures of soft tissue such as organs and muscles that don’t show up on x-ray examinations. It is especially loud, too.
That is why I needed to be sedated – I can’t handle the noise. The term for this is “misophonia,” where sounds can cause severe reactions in people. For me it is the clicking of heels on pavement, a lawn mower, too many people talking at once, humming of a motor or heating system, a baby crying, the car radio when I enter a car…the list is endless. 
Even more alarming is an unexpected loud noise, such as a motorcycle or firecrackers. I realise that most people can find many of these sounds alarming, but for those with misophonia, the auditory nervous system is in overdrive. I believe that those of us with a hyper-aroused nervous system suffer universally from anxiety and not only do we experience a visceral response to violence, but to anything that startles or is grating to the ears and can raise our anxiety level.
Dr Aage Moller, the neuroscientist at the University of Texas who specializes in the auditory nervous system, believes there is “no known effective treatment”. Dr Moller “believes the condition is hard-wired, like right, or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound”.
My strategy (perhaps the only one) is to fill my day with lovely sounds that bring about joy instead of irrational fear, such as certain music, and listen to people who have soothing voices; but, tomorrow, I’m not going to have a choice.
So, half an hour before this MRI, I have been told to take 5 of my Valium by my GP. I think I’ll take a Panadeine Forte, too, for just in case.
How an MRI works
The MRI scan consists of a table that slides into a large cylinder. Inside the cylinder is a magnet that, when operated, creates a powerful magnetic field.
Soft tissue contains water molecules and the magnetic field acts upon microscopic substances (called protons) found in water. The magnetised protons in the soft tissue send out an echo in response to the MRI scan’s radio waves. A computer then organises these echoes into images.
The MRI scan operator (radiographer) will take cross-sectional images of my body from almost every angle.
And then I wait ‘til Monday to find out if a part of my liver goes the way of my gallbladder.
