Join us on Saturday, March 1st at Simons Physical Therapy to learn why PT can be helpful for Fibro, including information on strain/counter-strain techniques to help relieve muscle pain, and dry needling to relieve knots/adhesions.
This event is open to everyone, please bring a friend or family member if you would like. 
Simons Physical Therapy is located at 8703 Golf Links Rd, between Pantano Parkway and S Harrison.
Please note that the lunch at BJ’s that had been previously scheduled for March will be rescheduled for April but as a picnic lunch. 
If you need more specific directions or get lost, please call Jess at 520-979-6097.
Sleep. This is the final frontier for many Fibromyalgia patients, since quality of sleep can be the difference between a good day and a bad day.
I received a Fitbit device for Christmas, and it’s been interesting to watch the data my FitBit has collected over the last few weeks. One of the features that FitBit offers is tracking sleep. The pedometer feature in this device has been calibrated to track movement during sleep, and its algorithms decide if you’re awake, or simply restless during sleep.
While it is certainly not as reliable as a polysomnography (sleep study), my experience with it has been that it is pretty accurate. When I wake up feeling like I haven’t slept very well, I usually see several points in time during the night when my device has measured me as being awake or restless.
At my doctor’s advice, I have made some slight changes to my Medical Cannabis dosing to achieve better pain control. Specifically, she recommend that I use a dosing method that results in sustained-release (edibles), and therefore pain control that lasts longer (6-8 hours, versus 2-4 with a vaporizer). Here are the results of that, in relation to sleep.
On December 28th, I went without a medical edible before bedtime. I used my vaporizer before bed, with about 10mg (by weight) of medical cannabis loaded into it. I woke up 5 times during the night, with an overall sleep efficiency (as rated by FitBit) of 99%. Not bad.
Now, a random night’s sleep while eating a 25mg medical edible one hour before bedtime, plus the 10mg in a vaporizer as I was getting into bed:
On Jan 22nd, I was not only able to fall asleep much EARLIER (12:35am vs 3:51am on Dec 28th), but I also woke up less frequently throughout the night. Although it took me a few minutes longer to fall asleep on Jan 22nd, I stayed asleep for a longer period of time. The “blip” around 6am was most likely me getting up to let the dogs outside. As you can see, I was able to fall right back to sleep.
In comparison, this is the sleep my FitBit logged for last night. I went to bed last night without an edible, but with about 25-30mg medical cannabis delivered into my body via smoking (combustion):
As you can see, I didn’t sleep very well last night at all. I have felt sluggish, tired, and generally not well today. Although it only took me 5 minutes to fall asleep last night, I woke up throughout the night. This tells me two things: 1) my body does not do well with smoking cannabis as compared to vaporizing, and 2) that edible makes a big difference. I did go to bed last night with a moderate degree of anxiety, in relation to planning a wedding. I’m sure that was another factor in why I slept so poorly.
I realize that this data is only pseudo-scientific. It should not be treated as scientific data. This is not measuring alpha, beta, delta, or REM stages of sleep. At best, this is merely anecdotal evidence. However, my experiences as detailed above have been pretty consistent. I do believe medical cannabis has helped with my struggle with insomnia and poor sleep, and until I see signs indicating otherwise (or develop a condition that would not be favorable with this therapy, like pregnancy), I will continue to use it at night. I have not seen this much positive impact on my sleep from any prescription or OTC drug in the 14 years that I have struggled with insomnia.
Unfortunately, there are other factors that may influence this data, like a specific strain of medical cannabis (some are not good to use before bedtime), and I did not log which strains I used on a particular day. Other factors that may affect these results include: general fatigue levels at bedtime, anxiety, vivid dreams or nightmares, and hormonal fluctuations. While I do think that this data is indicative of overall trends for me, your mileage may vary. Like every other treatment for Fibromyalgia, your treatment may look different from mine. Any specific questions you may have regarding this therapy and your body should be directed to your doctor. If you need general information about medical cannabis and why it can be helpful, please visit our page on medical cannabis at: www.azfibro.com/medical-cannabis.
Join us at the Wat Buddahmetta Center on 22nd and Swan for a free yoga class! (Cash donations are accepted.) Please arrive a few minutes early to avoid interrupting the class once it has started. You are welcome to bring friends and/or family.
Gentle Yoga with Jose
(Monday)
6:30 p.m. – 7:45 p.m.
Tucson Buddhist Meditation Center is pleased to host Jose for his weekly Gentle Core Yoga class. Jose is a certified yoga instructor and teaches a yoga focusing on the sacrum as a building block on which to to initiate the yoga posture, which is then developed through the breath. The practice is gentle and slowly builds the level of difficulty depending on the student’s ability. Please bring a mat. Open class, drop-in. As with all of our classes, this class is a free offering to the community. Donate as your heart inspires you.
** Don’t worry if you do not have a mat- the floor has a very thick rug. I may have to work late tonight, so I am not sure if I will be able to join or not! -Jess**
Are you looking for a new way to track your symptoms and connect to other patients for free?
HealClick.com is a brand new, patient-run online community that takes patient-matching to a whole new level. The site functions as a social community for patients to give and receive support from one another, and it also allows patients to search treatments and therapies by treatment name OR condition. You can then talk to the patients who have been on the treatments they’ve listed in their profiles and ask them questions about what their experience was like!
For example:
Say you have been diagnosed with Fibromyalgia, Migraines, and Interstitial cystitis. You want to know if there are other patients “out there” who have all three illnesses who have seen an improvement in all symptoms by changing their diet. You’ll still have to search all three conditions, but the results are easier to read than a world-wide-web search.
HealClick’s algorithms run each night around midnight, giving you a daily update on how well your profile matches other patients’ profiles. To find out why another patient is a “great match,” click on their user name to view their profile.
With HealClick, finding other patients who are similar to you is about as easy as it gets. You can sort results based on how well other patients match up with you (best match), OR you can sort by latest activity, newest, “most helpful” (as voted on by other patients in the community), or by “best effectiveness.” And, possibly the best feature of all is that this website is easy to use, and you don’t have to switch back and forth between different communities to respond to discussion threads that may not directly involve your illness (such as ‘coping with a chronic illness), like some other online communities do.
HealClick’s co-founders and development team all suffer from neuro-immune or autoimmune illnesses, so they know how important it is for patients to be able to navigate their site easily. “Brain fog,” is unfortunately not just an effect felt by Fibromyalgia patients!
HealClick’s co-founders are working with researchers to annoynomize all of this data and allow researchers access to data to help develop new treatments for neuro-immune illnesses.
Just want to chat with other patients? You can do that too! Your home screen is a “feed” of all everything going on within HealClick (you can sort by condition, too!)
If you think you’re running out of treatment options, check out HealClick.com. At worst, you may find a new friend.
Want to know more about HealClick’s mission and where they’re headed? They’re currently fundraising to upgrade servers and implement other tech updates to provide more features for patients! http://www.indiegogo.com/projects/healclick-patient-matcher
Our Spring/Summer calendar of events is up! As usual, email reminders will go out a few days before each event.
I have left May and June open for now. I am getting married in mid-May, and I am not sure what my energy or availability will be in early May through early June. If anyone would like to host an event (does not need to be at your home), please let me know and I will happily put it on the calendar.
Sat Jan 11 @1pm: Share and Support Lunch at BJ’s on Oracle (south of Tucson Mall)
Sat Jan 18 @ 1pm: Social Support- Cannabis 101
Sat Jan 18 @ 2:30 pm: Cannabis cardholders support meeting
Mon Feb 3 @ 6:30pm: Social Support- Free Yoga class at Wat Buddahmetta Center on 22nd and Swan (1133 N Swan Rd), bring a mat
Sat Mar 1 @1pm: Social Support -Simons PT, 8703 Golf Links Rd between Pantano Parkway and S Harrison
Sat Apr 5 @ 1pm: Social Support -Picnic Lunch, location TBA upon reservation of a picnic ramada (probably Brani Fenton Park)
May: TBD
June: TBD
Sat July 12 @ 1pm: Share and Support Lunch at BJ’s, 5510 Broadway Blvd (Broadway and Craycroft)
Aug: TBD, possibly out of town weekend retreat (please contact Jess if you are interested in helping to put this together)
Questions? Comments? Contact Jess at info@azfibro.com, or by phone at 979-6097.
I’ve seen a number of articles in the news recently regarding Fibro (and associated conditions) and Fibro research- have you seen these articles yet?
Here’s a short list of some recent noteworthy news:
Researchers Discover a Rational Source of Pain in the Skin of Patients with Fibromyalgia - “The small biotechnology research company, founded by neuroscientists Dr. Frank L. Rice and Dr. Phillip J. Albrecht, reports on a unique peripheral neurovascular pathology consistently present in the skin of female fibromyalgia patients which may be a driving source of the reported symptoms.”
Happy Reading!
Meet us at St Francis in the Foothills (NW corner of River and Swan) for a FREE laughter Yoga class tomorrow evening, Tuesday, December 10th at 6pm! (Suggested donation is $2.)
Laughter Yoga focuses on breathing and laughter with some silly movements in between to help release endorphins and other feel-good chemicals in our bodies to help combat stress, pain, anxiety, and a host of other ailments. Join us for an hour of stress release during the busy holiday season, and please feel free to bring whomever you’d like with you!
Park in the REAR of the parking lot- classrooms are in the back of the church campus.
Not sure if it’s right for you? Check out this YouTube video by one of Tucson’s laughter yoga instructors: http://www.youtube.com/
To celebrate Dysautonomia Awareness Month and raise funds for medical research there will be a “Pizza with a Purpose” Event on November 7th, all day (TODAY) at the California Pizza Kitchen in Tucson. California Pizza Kitchen will donate 20% of the proceeds from your meal to Dysautonomia International, a non-profit that funds dysautonomia research, if you bring their special flyer with you to the restaurant. The flyer is the photo at the top of this event invite, and can also be found here:
http://www.dysautonomiainternational.org/pdf/
Please help by inviting friends, family, coworkers, etc. Everyone is welcome!
Don’t forget to print the flyer and bring with you to the event.
