By Brent Matsalla
for the Guardian Libery Voice
This article is reprinted with permission from Brent Matsalla.
Researchers are saying that taking supplements of vitamin D can reduce pain and offer a cost-effective compliment to other traditional medical treatments for fibromyalgia syndrome (FMS). Patients with FMS often experience very widespread chronic pain and fatigue and those studied with low levels of vitamin D have found some pain relief in taking the vitamin supplements.
Vitamin D Supplements help Fibromyalgia pain. Fibromyalgia sufferers may also experience occasional anxiety or depression, poor concentration, morning stiffness and sleep disorders. All the horrible symptoms of FMS can often reduce a patient’s quality of life. Often the symptoms can lead to a withdrawal from any social life to loss of employment or careers. A patient with FMS will often need ongoing physical therapy, cognitive behavioral therapy and multimodal therapies. Some will also go through temporary drug therapy and take meds such as: pregabaline, amitriptyline, and duloxetine. For those suffering with FMS, there is no cure known.
Study researcher and orthapaedist at Vienna’s Orthopaedic Hospital Speising, Dr. Florian Wepner, said that this study shows that Vitamin D supplements are an economical and safe treatment for FMS sufferers.
“Vitamin D supplementation may be regarded as a relatively safe and economical treatment for people with fibromyalgia.” – Dr. Florian Wepner
Dr. Wepner and other researchers discovered that patients often had low levels of calcifediol. Calcifediol is also known as 25-hydroxyvitamin D, 25-hydroxycholecalciferal, or calcidiol, and is produced in the liver by the enzyme cholecalciferal, or vitamin D3. The vitamin D3 is then converted by the liver to calcitriol which is an active form of vitamin D. Levels of calcifediol in a patient’s blood will offer the best indicator of the current level of vitamin D found in the patient. When the researchers found common low levels of calcifediol in patients with more severe pain and symptoms of fibromyalgia, they began to hypothesize that a vitamin D supplement might be of benefit by reducing the chronic pain that so many experienced.
“Low blood levels of calcifediol are especially common in patients with severe pain and fibromyalgia. But although the role of calcifediol in the perception of chronic pain is a widely discussed subject, we lack clear evidence of the role of vitamin D supplementation in fibromyalgia patients.” – Dr. Florian Wepner
Dr. Wepner then said that the researchers began a quest to determine whether raising the patient’s calcifediol levels would actually alleviate chronic pain and possibly cause an overall improvement in the patient’s condition.
The Natural Vitamin D study was a randomized and controlled trial of 30 women with FMS that had low serum calcifediol levels of below 32ng/ml. The group’s levels were monitored at five weeks, 13 weeks, and 25 weeks into the study, while the FMS group took vitamin D supplements for 20 weeks. The monitoring allowed the researchers to adjust the oral dosage in the group to help maintain levels of calcifediol between 32 and 48ng/ml. The patients would also be monitored for an additional 24 weeks after stopping the supplements.
After 24 weeks of finishing the supplements, patients reported a marked reduction in their chronic pain levels. The patients all showed a significant improvement in chronic pain reduction during the first part of the study when the patients began taking the supplements, while the pain levels in the study’s placebo group remained unchanged.
Overall the group taking the vitamin D supplements scored better on a fibromyalgia impact questionnaire with symptoms like chronic morning fatigue. However, there were not any significant improvements with the group’s anxiety or depression.
Dr. Wepner believes the data they presented looks very promising for vitamin D helping to reduce the chronic pain suffered by patients with more severe cases of fibromyalgia syndrome. Dr. Wepner advises FMS patients to have their calcifediol monitored regularly by their doctors especially in the winter season when the hours of sunshine are reduced.
In honor of National Fibromyalgia Awareness Day, I am proud to announce the release of Inspired Living with Fibromyalgia’s Fibro Living Digital Magazine!
The second issue of Fibro Living Features some wonderful articles and contributing authors including:
Turn Off Flight, Fight, Freeze
By Lars Clausen
found on page 8
From Quake to Aftershock
A True Story of Living, Surviving, and Thriving with Fibromyalgia
By Lisa Arrington
found on page 12
The Healing Potential of Crochet
By Katy Bradley
found on page 16
Poetry Corner: Poems Born From Living with Fibromyaalgia
Featured Poet: Micky Cocker
found on page 26
and so much more!
It’s your chance to read the magazine for FREE.
Click the link above to read the second issue or click here.
I Hope you Enjoy Our Second Issue!
As a person who has dealt with Fibromyalgia for over a decade, I have found the most recent Lyrica commercials to be disturbing and setting unrealistic expectations. The “Carnival” Lyrica ad showcases a mother with Fibromyalgia taking her daughter to a carnival where they play carnival games, ride the ferris wheel, and eat cotton candy.
The commercial itself is sweet and heartwarming, but it is also extremely unrealistic for many people with Fibromyalgia. Lyrica is one of only three pain medications approved by the Food and Drug Administration to treat Fibromyalgia. Many people have had good results with Lyrica in that it can calm the nerves and reduce pain. A few people have outstanding results with Lyrica and probably could go to the carnival and then pay for it for a week after.
My experience with Lyrica was initially that it was a miracle drug that enabled me to do so much more, including spending more time with my children. But then the side effects started and I got worse, much worse. Years later, I no longer take Lyrica and am able to live life again without it, but at the time Lyrica really did help me for a while. In fact, there were days that I actually could have gone to the carnival and did; I just was not able to move for days afterwards.
So what is my beef with the Lyrica commercials? Well, I simply want them to be a little more realistic for Fibromyalgia patients. It is not a cure, nor does it alleviate all symptoms, but it does help many people mitigate the nerve pain with side effects that seem to affect everyone differently.
Commercials literally reach millions of people every day and this commercial is spreading a consciousness about Fibromyalgia that is overdramatized to the good side. If everyone with Fibromyalgia really got that much better from taking the pill, don’t you think we would all take it? Unfortunately, what I have seen as the result of the commercial is the mentality of “If you want to get better just take the Lyrica pill on tv, it fixes everything” and “why aren’t you doing as well as the people on tv? You take that pill don’t you?”
That said, because Fibromyalgia affects everyone so differently and because if I had not experienced such strong side effects, I personally would still be taking Lyrica, I cannot completely slam the commercials or the medication. I just want to see a different portrayal.
A woman named Amanda Matos has a petition requesting Pfizer (the manufacturer of Lyrica) to do the following:
1.) Make Lyrica advertisements realistic, if you have any advertisements at all
2.) Modify Lyrica so that the side effects are not worse than the disease
3.) Invest more money and time into research, to find better treatments for fibromyalgia.
I personally agree with these three requests. If you do too, please consider signing the petition at http://tinyurl.com/pfizer-lyrica-petition.
Do you think the Lyrica “Carnival” commercial is unrealistic?
According to a Mayo Clinic study, young and middle-aged Fibromyalgia patients report worse symptoms and a poorer quality of life than older patients. The suggestion is that the syndrome may be experienced differently for people in different age groups.
Although all people in the study with Fibromyalgia reported lower quality of life than the average person of their age in the United States, the younger people actually had lower scores in mental and physical health than the older ones.
These seems incredibly counter-intuitive and backwards to me. Age has always played a factor, but I always though the opposite. In general, people as they age have more health problems, so it seemed like the symptoms for Fibromyalgia would follow the same pattern, but for some reason it didn’t.
I don’t know. More research needs to be done of course, but I suspect it has to do with the cultural differences in the way younger people have been raised versus older people. I also suspect that it is in part due to the changes in diet from generation to generation. Fifty years ago, fast food was not as prevalent as it is today, nor was processed food in general. However, younger people today often eat these foods as part of their normal diet.
I believe that ultimately these findings are going to lead to a better understanding of Fibromyalgia and treatment options. Perhaps the reason some treatments work so well for some people and not others is as simple as your age. If that is the case, then it is possible the treatments could change drastically and be more individualized and maybe even work better for everyone!
Today, I’m sharing a slideshow of some Fibromyalgia books that I have found helpful or interesting or simply inspiring.
Many of you are aware that I took a lot of time compiling a list of 200+ Symptoms of Fibromyalgia and Co-existing conditions. If you haven’t seen the list and would like to check it out, feel free to click here. One of the symptoms listed is “occasional dyslexia.” This symptom is up for discussion today.
Recently, one of my wonderful readers emailed me to let me know that the term “occasional dyslexia” is offensive to the people who have dyslexia, because actual dyslexia is constant and doesn’t go away.” No one has occasional dyslexia, you either have dyslexia or not.” I appreciate the fact that she took the time to let me know and I even understand the distinction and agree!
I am struggling to figure out what to say instead to describe a very difficult symptom of Fibromyalgia that is so similar to dyslexia though. Out of respect for my reader and for everyone else with dyslexia, I have changed the symptom on the blog post to read “139. Dyslexia-type symptoms occasionally.”
I haven’t changed it in the PDF yet though, because I’m not sure this is the best wording for it either. I am looking for input on the best wording for this symptom, because I do not want to minimize the struggle someone who has dyslexia in anyway, but I also don’t want to minimize a symptom that many people with Fibro have experienced including myself.
So today, I want to explore the symptom a bit and see what you suggest for expressing this very real, common, and frustrating symptom of Fibromyalgia.
Let’s start with the learning difficulty called dyslexia. Dyslexia is a developmental reading disorder that makes learning to read, write, spell, and sometimes speak difficult. It is a genetic problem and is NOT caused by any physical problem like eyesight, hearing, low intelligence, poor teaching, or emotional disturbances (although of course someone can have dyslexia and one or more of these other issues as well). Dyslexia cannot be cured and does not go away, but appropriate teaching can help people with dyslexia reach their full potential.
Difficulties with letters, words, reading, writing for Fibro
The symptom formerly called “occasional dyslexia” for Fibromyalgia mirrors some of the same characteristics of dyslexia like transposing letters, difficulty reading, and mixing up letters when looking at them or when writing. This symptom is believed to be a part of the “brain fog” or cognitive issues many people with Fibromyalgia deal with on a daily basis. The big difference between actual dyslexia and the symptom people with Fibromyalgia have is that it goes away for people with Fibromyalgia and simply doesn’t occur all of the time.
For people with Fibromyalgia, the brain is sending confused messages, making translating words or writing or reading difficult. Some theories as to what may cause the specific issue with words include lack of sleep, pain, brain fog, brain wiring, depression, underperforming thyroid, and side effect of medications.
A few studies, nothing conclusive though
There are also some people who have Fibromyalgia and dyslexia. According to one informal study, about 9% of people with Fibromyalgia also have actual dyslexia. Some research is being done to determine if they are interrelated.
A few small studies confirm that fibro fog and the cognitive dysfunction that comes with it is real and not just memory loss due to getting older. One study found that people with Fibromyalgia scored below average when asked to recall words from a list. Additionally, many scientists believe that pain is a contributing factor when it comes to memory problems and other issues including brain fog and dyslexia-like symptoms.
How should I word the symptom?
So I ask, what would be a better way to describe this symptom? I’ve considered “acquired dyslexia,” “symptoms mirroring dyslexia” and “dyslexia-type symptoms occasionally”.
What do you recommend?
“Autism/ADHD/Dyslexia and Brain Wiring…Fibromyalgia and Brain Wiring??” Women and Fibromyalgia. N.p., n.d. Web. 26 Mar. 2014. <http://womenandfibromyalgia.com/2010/02/07/autismadhddyslexia-and-brain-wiring-fibromyalgia-and-brain-wiring/>.
“Can Fibromyalgia Affect My Memory?” - Mental Effects of Fibromyalgia. Sharecare, n.d. Web. 25 Mar. 2014. <http://www.sharecare.com/health/fibromyalgia-mental-effects/fibromyalgia-affect-memory>.
“Review: Could Fibromyalgia Cause Dyslexia?” Could Fibromyalgia Cause Dyslexia (Developmental Reading Disorder). EHealthme, n.d. Web. 25 Mar. 2014. <http://www.ehealthme.com/cs/fibromyalgia/dyslexia>.
When I was first diagnosed with Fibromyalgia and for many years after, I experienced a gamut of emotions ranging from being angry at myself and my body, feeling completely out of control of everything, and feeling exceptionally dissatisfied with life. I felt like I’d been dealt a really bad hand in a poker game that I wasn’t even aware that I was playing.
I was struggling against the diagnosis, struggling against the changes my mind, body and spirit were going through, struggling against my self-worth, and struggling against my life. I struggled and fought against everything and everything that I thought I wanted was just out of reach. I resented the ease with which others seemed to obtain their dreams.
These emotions and this struggle became a part of every aspect of my life: financially, emotionally, mentally, physically, relationships, and career – all were affected my attitude.
- Financially – I grappled with money issues and could not ever seem to make enough to even cover the bills, much less have fun. Then, I would spend money on things that I could have done without, because I felt so deprived.
- Emotionally – I never felt truly happy; I was drained, constantly discontent, and unable to come to terms with past turmoil.
- Mentally – I was anxious and stressed; unable to focus or find solutions.
- Physically- My body was failing me in every way and the symptoms just kept piling up: more pain, more brain fog, more frustration, more heart issues, more digestive issues, more weight gain, and more fatigue.
- Relationships – My relationships with my friends, family, and spouse at the time were barely in existence. I was unable to connect with others in a meaningful way or even simply enjoy the moment, because I was so focused on how bad I felt and how horrible it all was for me.
- Career- I was unable to hang onto a job, much less really focus on a career. I struggled to find my life’s calling and often thought I should just give up. After all, who am I to do anything career-wise, when I could not even get out of bed or function like a normal human being?
The more I struggled, the more I ignored, the more I downplayed my emotions and difficulties, the more unhappy, angry, and discontent I felt.
In hindsight, I realize that I was far too focused on getting things right for a “future” happiness, contentment, joy that would somehow miraculously appear when I made the right changes to my career, fixed my health, improved relationships, started a new relationship, made more money, or whatever was on my mind at the moment.
There is one decision that I made that changed the way I deal with Fibromyalgia and life that helped put these emotions to rest and allowed me to start being happy, joyful, and open to abundance right now, in the present moment, the vast majority of the time…
Can you guess what it is?
I accepted that I couldn’t change the diagnosis of Fibromyalgia, but I could start taking small steps towards improving. I took the time to appreciate what I could do. I rebuilt my self-esteem slowly. I figured out what I could do to help others and focus less on myself. I ended a toxic relationship. I began taking better care of myself. All of these things helped in the journey to becoming PRESENT in the present.
All of these things were important to becoming happier, more abundant, and joyful, BUT the ONE thing that really changed everything for me was simply GRATITUDE! I started each morning thinking of what I was grateful for. I looked for inspiration around me and was grateful. I ended each day with thoughts about what I was grateful for.
When my days were difficult and all I accomplished was going to the bathroom and brushing my teeth, I thanked the universe for allowing me to do that and was grateful. When I could bake a batch of cookies with my daughter (and that was the only fun thing I could do for weeks), I was grateful for it. Over time, I began to be able to do more and more. Instead of symptoms increasing, my gratitude increased.
Today, I am grateful for having Fibromyalgia. It has helped me become a better, stronger, more caring person who is genuinely focused on the parts of life that matter most. I find myself feeling grateful for everything, the breath in my lungs, the rain, the snow, the sun, the flowers, the weeds, the time spent with my daughters, the career, the family, the real friends, and so much more.
I am grateful for challenges and I am grateful for the pain. Fibromyalgia helped slow me down and focus on what really matters in life. I am grateful for each moment and see the beauty and wonder everywhere in the world around me. I appreciate the days when my body and mind allow me to simply live. I find nearly everyone around me to be amazing creatures with so many wonderful gifts and talents. I see the beauty and strength within me and around me.
Being filled with gratitude was the first major change that I made in my life to truly manage Fibromyalgia and it has been the ONE CHOICE that has helped lead me towards improving all aspects of my life. Gratitude is deeper than simply saying thank you. It is opening yourself up to truly appreciate everything in life, the good, the bad and the ugly, to the very depths of your soul.
Healing every aspect of my life will take time and will be a journey that continually unfolds. I am still human and have negative emotions. I don’t always feel gratitude every moment of the day, but now if I step back for a moment and think about it, I can always find something to be grateful for in my life, in the world around me, in the amazing people everywhere.
Something deep within me has shifted and I believe it is due to gratitude that I am able to see my life so much clearly and live with a level of hope and joy in this very moment.
Some moments pass by quickly while others drag on. It feels like it’s been mere minutes that I have been away from the Inspired Living with Fibromyalgia blog, but in truth I have neglected the blog more than a little over the past few months.
Life is simply so easy to slip off into doing other things like working on my book, putting together the second edition of the Fibro Living digital magazine, working with clients, and posting on Facebook (and other social media-but mostly Facebook).
I’ve also put a lot of time and energy into healing – not just from Fibromyalgia, but also from a car accident in December of 2013. But it is past time to really step back into the blog, which was my starting point and the foundation that supports everything else I do.
For April 2014, I am going to participate in TWO blogging challenges with the hopes that I will get back into the habit of sharing my thoughts, experiences, information, and news about Fibro, about coping with symptoms, about some symptoms more in depth, and put together some new graphics as well!
The two challenges are the:
Ultimate Blog Challenge
the Simple Blogging Network
If you are a blogger and want to participate also, I highly recommend them both and would love to see you there! Both of the challenges are FREE of charge and I’ve met some great people at them in the past. I always learn a lot and hope you do too!
For the wonderful new people I hope to meet through the challenges, this blog is about not only coping but thriving with a chronic pain syndrome called Fibromyalgia. Fibromyalgia affects millions of people and can be extremely debilitating. The symptoms go far beyond pain as well and can include cognitive issues and extreme fatigue and much more.
I’ve been fortunate enough to learn some great ways of coping, so that I can live what I consider an Inspired Life (one filled primarily with joy and excitement and dreams) and try to help others, though I often end up more than a little stretched in multiple directions a bit like a rubber band about to shoot into orbit.
My hope is that everyone with or without Fibromyalgia will be willing to learn more and share information and offer hope and healing, in the form of inspiration and information. for the sake of the millions of wonderful people suffering with the symptoms of Fibromyalgia.
Although the overall theme of my blog is about Fibromyalgia, it is also about living an abundant and inspiring life which speaks to many people who are interested in improving their quality of life.
Whether you have Fibro or not, you are welcome here! Just please be respectful of the people in varying stages of coping with a difficult chronic illness. This is a place to grow and learn.
HealClick has just opened their proverbial online doors to the public, all they need is you. Join HealClick to meet wonderful people like you who are dealing with neuroimmune and/or autoimmune illnesses.
By sharing information about symptoms and treatments, you can help find or share better ways of dealing with symptoms while making new friends. The data users submit is anonymized and used to help develop research trials and hopefully eventually to find a cure. Are you ready to find some answers and possibly even help find a cure?
HealClick is completely free to use. There are no ads and no company sponsorships. This site is genuinely for people to people connections for people who HAVE one or more of the conditions currently served. or are caregivers of people with the conditions.
Conditions currently served include:
Chronic Inflammatory Response Syndrome
Ehler-s Danlos Syndrome
Irritable Bowel Syndrome
Multiple Chemical Sensitivities,
Orthostatic Intolerance/ POTS
Reflex Sympathetic Dystrophy,
“We match patients with similar condition to make sharing treatments easier, then use online data to fuel new medical research” – Joey Tuan
If you are interested in joining this wonderful, supportive, and helpful community,
please click the Healclick logo below!
The Inspired Living with Fibromyalgia community has won another award! The award today is from Fibro Fighterz and is called “The Fighterz Fierce and Fabulous Blogger Award.”
This incredibly special award is given to bloggers who’s writing is incredible and inspirational, educational and enlightening. To be given this award is so lovely and is a direct reflection of this wonderful community who support my efforts to share information about Fibromyalgia, while trying to provide inspiration and beauty!
Thank you Fibro Fighterz for this wonderfully meaningful award!