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JAMA Reviews Fibromyalgia
Review of where we are at medically with FM…
http://www.fmcpaware.org/jama-clinical-review-of-fm-by-dr-dan-clauw.html?utm_source=June+2014+Newsletters&utm_campaign=June+2014+Newsletter&utm_medium=email
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Discovery of key genetic link between chronic pain conditions – Medical News Today
Discovery of key genetic link between chronic pain conditions – Medical News Today.
Wow. It’s so interesting that pelvic pain and musculoskeletal pain and IBS are hereditary! My father has IBS and his mother was considered a hypochondriac because of undiagnosable pain… Hmmmm. On my mother’s side there is only Reynaud’s syndrome but that wasn’t included. This goes a long way to bolstering these diagnoses as legitimate, and pointing towards reasons behind abnormally sensitive pain processing in some of us.
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There’s formaldehyde in my conditioner.
A pound of prevention is worth an ounce of cure, right? When it comes to my health, I try to proactively live a healthy lifestyle and avoid anything risky. That’s just common sense. These days, many people, especially those of us living with chronic illness, devote a lot of time and energy to our health and wellbeing.
When it came to personal care products, I usually bought them in the drugstore. I used to think that government safety regulation prevented anything too harmful from being used in these products. That was before I began reading ‘There’s Lead in your Lipstick’ by Gillian Deacon. I recently developed several skin conditions, like scalp dermatitis and millia, which made me want to look for some alternatives. Then I learned that there was (is) formaldehyde in my conditioner (DMDM hydantoin). My jaw dropped open for a good 30 seconds. How is this possible?
Apparently there is virtually no industry regulation on what ingredients companies can put in their products.* Known toxic contaminants and carcinogens, like phthalates, 1, 4-dioxane and lead, are present in common cosmetics. According to Deacon, there are more than 85 000 ingredients used in the personal care industry. Of these, fewer than 15% have been studied for their human health impact. Worse, the interactions between multiple chemical ingredients haven’t been studied at all. Most disturbingly, the accumulation of chemicals in the body, and the long term health consequences, are unknown. But facts like the presence of parabens, a common cosmetic additive, in 19 out of 20 breast tumors suggest a startling relationship.**Other research demonstrates links between ingredients or contaminants and sperm damage, low birth weight in girls, and abnormal reproductive organ development in male infants.*
Gillian Deacon recommends looking up your personal care products on the Environmental Working Group’s Skin Deep database, a comprehensive metric of the chemical hazards in thousands of common personal care products. Drawing on multiple government, industrial and academic research databases, Skin Deep puts products on a scale of 1-10 in terms of chemical hazards, based on the ingredients.
Here are 3 of my products:
Selsun Blue Dandruff Shampoo, Medicated Treatment
Overall Score: 7 (high concern)
Particularly for cancer, allergies and immunotoxicity
Harmful ingredients: Selenium sulfide (8), Cocamide DEA (7), Fragrance (8), DMDM hydantoin – formaldehyde releaser (7).
Tresemme conditioner – smooth and silky
Overall score: 5 (moderate)
Particularly: allergies and immunotoxicity, endocrine disruption
Harmful ingredients: fragrance (8), Lilial (7), Geraniol (7), DMDM hydantoin – formaldehyde releaser (7)
Covergirl clean foundation for sensitive skin
Overall 5- moderate
Allergies and immunotoxins, reproductive toxicity, endocrine disruption
Harmful: Propylparaben (10)(!) methyl-paraben (4), PEG (3)
I don’t think I can continue to douse myself in toxic chemicals! I’ll be looking up alternative products in my health food store on Skin Deep to make sure they aren’t toxic. (Be careful of greenwashing – ‘organic’ or ‘natural’ products may be misleading). Always check the label. Apparently my skin conditions may be a reaction to these products. Furthermore, my immune compromised fibromyalgia body doesn’t need any more challenges!
*Skin Deep
**http://www.gilldeacon.ca/projects-lipstick.php
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When It Comes To Chronic Illness, College Campuses Have A Lot To Learn | Cognoscenti
Sleep, wherefore art thou?
Last week I had an appointment with a sleep specialist to get the results of my sleep study. I did this study back in December 2013, and it was a hellish experience. By the time they were done wiring me for the study, I looked like a modern Frankenstein, and it was as uncomfortable as it was unsightly. Before the study I only took half of my sleep aid, because I was determined to ‘prove’ that I don’t sleep well. The first horrible part was being wired to the bed and not being able to get up without the nurse coming to unplug me. Of course I had to go to the bathroom twice that night and both times when I went to get up the wires jerked my head back down! After my neck muscle spasmed, I couldn’t bear lying there in the dark hurting any longer, so I took the other half of my sleeping pill and a muscle relaxant. Unfortunately I still ended up counting down from 3000. When the technician came to wake me, I joked that I had just fallen back to sleep, and she replied “What do you mean? You’ve been asleep all night!” I almost screamed.
At least the sleep study results backed up my experience. Of the 6 1/2 hours of recording time, I slept about 4 1/2. This means that my sleep efficiency was very low, at 64.5% (total sleep time divided by total recording time). The other interesting finding was that I woke up 66 times during the night, or about 14.3 times per hour. The good news is that I don’t have sleep apnea or restless leg syndrome. I also had “abundant slow wave sleep” but minimal REM sleep – meaning that I had a lot of deep sleep, where your body repair and recovery takes place, but minimal dream sleep. Apparently this is consistent with the medications that I take.
Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 10 to 11 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong (pain goes up, mood goes down and brain fog sets in). In order to get enough sleep I take a sleep aid called doxepin (brand name Silenor). It is a low dose of a tricyclic antidepressant that helps me stay asleep for the length of time that I need. Although not as effective as some other sleeping pills that I have tried, I chose this one because it is nonaddictive and I can take it for the long term. I also take my pain medications at night (pre-gabalin and long-acting tramadol) to help me fall asleep. Finally, I take melatonin and a natural anti-anxiety supplement called Relora too.
I think I am lucky to have found a cocktail that generally works. The sleep specialist recommended continuing with doxepin/Silenor. However, she had some interesting advice regarding the length of time that I sleep. She told me that if a person actually requires, say, eight hours of sleep, but they stay in bed for 10, they will not lie asleep for eight and then lie awake for two. Instead, their body will spread their sleep over 10 hours, but the quality of the sleep will be lighter and less restful. This could explain the low sleep efficiency and high rate of awakenings that I experience. She recommended that I gradually try sleep restriction as a means of improving the quality of the sleep that I get. I have to admit that this makes me very nervous, because I am such a disaster when I don’t get my 11 hours. On the other hand, I hate spending half my life in bed. I still have to look into it further but it would mean getting up a little bit earlier every day. I think even making it down to nine hours would make me feel like I have more time to enjoy my days, as long as I can still function. The other key part is to get to bed earlier because the quality of your sleep is better at night than in the morning. I have a lot of trouble getting to bed before 12. It’s ridiculous because I know that I would feel so much more productive getting up around 9 than 11. Part of my problem making myself go to bed early is that I enjoy the company of my partner in the evening and the other part is that after I take my nightly medication I get a little bit ‘high’ – very chatty, impulsive and easily distracted! I think my new top goal has to be bedtime by 11.
Finally, the sleep specialist recommended a book called No More Sleepless Nights by Dr.Hauri. I bought the book and it looks really good so far. I thought I had read everything under the sun about sleep hygiene and relaxation techniques, but I am already learning new things, and I am only on the first chapter. I think I will leave it there for now, but follow up with a post of the most relevant things I learn from this book.
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Return from Exile
Hello lovelies!
I’m barely re-surfacing after an exhausting 6 weeks applying to school for social work. Yep, I’m taking the plunge again … Last time I was in grad school studying anthropology. That was when fibromyalgia hit and I had to withdraw. I’ve spent the last 18 months trying to figure out what could come next. It has to be something part time, that primarily involves sitting and talking. I can only do computer work with voice to text software, as my shoulder trigger points get all achy if I type. I can only read with a fancy book stand. I can hand write and text some, but not enough for extensive paperwork. I’ve thought of things like being a nutritionist, acupuncturist, English teacher and therapist/counselor.
The last one ended up making the most amount of sense. When I was a teenager I wanted to be a psychologist, and it’s something I’ve always been interested in. Generally I’ve always wanted to be in a ‘helping’ career and been fascinated by people. Before fibromyalgia that translated into international development (think organizations like UNICEF, Oxfam, Save the Children) and studying anthropology (society and culture).
Studying social work qualifies me to be a counselor/ psychotherapist/ mental health worker where I live. It also would let me continue with international development or a lot of other interesting things like immigration settlement work if I regain my health. I like not shutting doors. I found some flexible fast track bachelor of social work degrees online and one class based one at home.
It was incredibly stressful to get in touch with profs from my previous university for references. I had a terrible experience with the onset of fibromyalgia and trying to stay in school. My supervisor told me I didn’t have enough of a ‘go-getter’ attitude when I asked for accommodation! No one wrote me after I withdrew to see if I was ok. I was so miserable day after day trying to wring as much work out of myself as I could, even as I lost abilities like typing, reading paperwork without a book stand, sleeping, sitting for long periods etc. I have been looking ahead ever since I left to the future, and it was really hard to look back.
It was tough trying to organize the logistics of assembling all the documents and sending them to the different schools through brain fog. Writing a ‘personal statement’ was not as bad, but I noticed the differences in my energy and ability to think clearly and it was frustrating. I also didn’t pace myself like I should have because I wanted to get it over with!
I actually missed my ‘normal’ fibro life. I missed my weekly qi gong, stretching, strengthening, meditation. I felt the difference of not doing it too! I missed blogging, library talks, coursera courses, coffee with friends etc. But it felt good to have a challenge that would move me forward in life. I’m looking forward to taking classes online (part time of course), practicum/internships and maybe one day being a fully fledged counselor!
Wish me luck! I’m already planning my back-up for “when I don’t get in” (I’m a glass half empty type). Need to think positive!
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Gold Stars
I’ve been waiting and waiting for the flare up in my shoulders to die down so that I could write several long blog posts accepting the awards that I was so excited to be nominated for! Alas, my body is not being it’s most cooperative self (surprise, surprise) so I am going to mash everything together and break all the rules, but hopefully express some of my thanks to the bloggers that nominated me and my appreciation for the great posts written by bloggers who I like to follow.
First of all, thank you to Jenn over at My Fibrotastic Life for including me as part of her WordPress Family! I think this is a lovely award, and it’s especially true for people living with chronic illness/or pain that the people you meet blogging become an important part of your family of friends. Some of us have a hard time getting out and about to meet up with old friends and some of our friends turn out to be the fair weather type, making blogger friends who go through similar experiences all the more valuable! Jenn’s blog is where you go when you need to put things in a positive perspective. She has a particular talent for staying positive in a way that doesn’t lose touch with the genuine challenges of living with fibro.
I would also like to thank the Nocturnal Laundress for nominating me for the The Dragon’s Loyalty Award. This is one of my favourite blogs! Julie expresses her experiences with chronic pain/illness with honesty and a dash of humour, using personal stories, quotes, and images.
Last but not least, I would like to thank trynabpainfreemomma over at Fibro…Dealing and coping through laughter and tears for nominating me for The Dragon’s Loyalty Award. If you haven’t checked out this great blog, you should! You will find posts about the challenges of living with fibro put into the perspective of learning and growing as a person, despite the obstacles.
I’ve decided to nominate a list of bloggers for both awards! I consider all of these great bloggers part of my WordPress family, and I loyally follow them. So they all deserve the WordPress Family Award, and The Dragon’s Loyalty Award!
Fibro… Dealing and coping through laughter and tears
The rules: The Dragon’s Loyalty Award
This award is given to the loyal fan/ commenter who follows and comments regularly on your blog. It can be a fellow blogger or just someone who follows and comments regularly. And in order to officially accept these awards this is what I must do.
1. Firstly, display the Award on your site. You earned it and you deserve it!
2. Link back to the person who gave you the award in your acceptance post.
3. Nominate 15 well deserving bloggers for the Award and let them know the wonderful news by sending them a message on their site.
4. List seven interesting things about yourself.
The rules: WordPress Family Award
1. Display the award logo on your blog.
2. Link back to the person who nominated you.
3. Nominate 10 others you see as having an impact on your WordPress experience and family.
4. Let your 10 Family members know you have awarded them.
5. That is it. Just please pick 10 people that have taken you as a friend, and spread the love.
7 interesting things about me:
– My favourite TV show is The Good Wife
– Although currently I am fiending on The Mentalist
– During the last year I visited some local art galleries and discovered I really like photography exhibits
– One of my New Years Resolution for 2014 is to meditate daily
– Also, during the last year I enjoyed nerding on all things related to ancient civilizations
– Including the hilarious historical detective series by Elizabeth Peters about archaeologist Amelia Peabody solving murders in Victorian-era Egypt
– My guilty pleasure is Keeping up with the Kardashians (awful, I know, but I can’t help it – don’t judge me)
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It’s award season! Blog awards are super fun – it’s so nice to get that warm fuzzy feeling that someone else out there in cyberland is getting something out of reading your blog. But I think the best part is building a blogger community; I always find great new blogs from reading other lists of nominees and it’s nice to send a shout out to the bloggers I enjoy reading!
I am horrendously behind in responding to nominations. It’s not because I’m not grateful (I am!) or because I don’t want to pay them forward (I do!), but that it’s very energy consuming to write these posts. Energy isn’t something I have a lot of these days, since I started volunteering and taking my meditation class. So, without further ado, I would like thank joynpain2 for nominating me for the Versatile Blogger Award! I’m very flattered to be considered along with the other amazing blogs nominated. If you aren’t following joynpain2 you should! She gives such an honest and inspiring look into the struggle of living with chronic pain!
Here are the rules for the award:
Thank the person who gave you this award. That’s common courtesy.
Include a link to their blog. That’s also common courtesy — if you can figure out how to do it.
Next, select 15 blogs/bloggers that you’ve recently discovered or follow regularly. ( I would add, pick blogs or bloggers that are excellent!)
Nominate those 15 bloggers for the Versatile Blogger Award — you might include a link to this site.
Finally, tell the person who nominated you 7 things about yourself.
7 Interesting Things about Myself:
1. I taught myself how to juggle in grade 9 (secret yearning to run away and join the circus, maybe?)
2. Before fibro, I traveled to every continent except Australia (and Antarctica)!
3. I used to study and volunteer in the field of international development (particularly HIV prevention and treatment programs in the developing world)
4. I love cats and dogs equally (don’t tell my cat – she has jealousy issues)
5. I am learning how to meditate and trying to do it everyday
6. I’m Canadian but I hate the cold
7. My favourite books to read are mystery novels (without too much gore
Versatile Blogger Award Nominees:
I picked 10 blogs that are relatively new to me which have already caught my interest because of some great content & unique perspective
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Breaking News: Brain Imaging Tracks Clinical Action of Pregabalin
Fascinating! This is a great summary of an interesting article. I think the connection between physical pain and emotional/affective responses in the brains of people living with chronic pain is really interesting. It’s amazing that they are imaging the effect of a drug on this connection, and showing it leads to analgesic effects. I take Lyrica and find it helps with tingling and chills and some sensitivity to pain. Personally I have found long acting tramadol to be more effective for the pain side of things but it’s so individual when it comes to pain.
This good news is so new that it’s dated in the future: Dec 1, 2013.
The implication is that at least one factor in chronic pain can now be visualized by computer imaging. Pregabalin (Lyrica) soothes the insula, and the changes in insula activity and corresponding decreasing pain levels were made visible for the first time.
So far, we only had static images of brains to compare those of people with chronic pain with those who are pain-free, but now we can watch the changes as they are happening in a single individual.
A study in the December issue of Anesthesiology suggests a role for brain imaging in the assessment and potential treatment of chronic pain. …use brain imaging procedures to track the clinical action of pregabalin, a drug known by the brand name…
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Skillfully Well & Painfully Aware 