Share and Support: Saturday, July 9th at 1pm

10348649_10102855778488889_3839758840238011829_oJoin us this Saturday, July 9th at 1pm at Bj’s Brewhouse (4720 N Oracle Rd) for lunch and informal discussion about anything that’s on your mind. Bring your questions, concerns, and triumphs.

Medical Cannabis 101 and 202

green cardJoin us for an informational session this Saturday, June 11th at 1pm about using medical marijuana to help treat Fibromyalgia symptoms. No medical marijuana will be present at this informational meeting. Please RSVP by emailing group leader Jess at info@azfibro.com for directions to Kathy’s house. You can preview our presentation at: www.azfibro.com/medical-cannabis/

This meeting will immediately be followed by Medical Cannabis 202 (support meeting for anyone using medical cannabis for chronic pain) at 2:30pm. This support meeting is for CARDHOLDERS ONLY. If your medical marijuana card is expired or not valid or not present with you, you will be asked to leave.

Share and Support: Saturday, May 7th at 1pm

10348649_10102855778488889_3839758840238011829_oJoin us for lunch and an informal discussion this Saturday, May 7th at 1pm. We’ll be at BJ’s Brewhouse at 5510 E Broadway Blvd. Bring your questions, concerns, and successes.

Saturday’s Seminar: Physical Therapy and Fibromyalgia

Have you ever wondered what Physical Therapy can do for Fibromyalgia? Not sure if you’re a good candidate for giving it a try? Has your doctor suggested it to you, but you’re not sure it’s going to be worth it?

12238027_10102855886692049_956824026787015264_oJoin us this Saturday, April 16th at 1pm at Simons Physical Therapy (8703 E. Golf Links Rd., Tucson) for a free seminar about the effects of Physical Therapy on Fibromyalgia specifically for our group. Each year, we learn about myofascial release (this includes a hands-on demonstration and instruction on self-massage) and other tools a physical therapist might use to help you manage your symptoms more effectively. We also learn about how to find a good physical therapist for the treatment of Fibromyalgia (they’re not all created equal!).

This is usually a very popular event- can’t wait to see you there, and feel free to bring a friend!

Share and Support: Saturday March 5th at 1pm

Join us for our March lunch at BJ’s Brewhouse at Oracle and Wetmore. Bring your questions, triumphs, and fears to be discussed in a safe space. We will be at the Oracle/Wetmore location. We are usually seated in the “sunroom” to the far left of the hostess stand.

Join our Leadership Team!

helenkeller382259

Come one, come all! Yes, it’s finally happening- a leadership team for this group! As much as I’ve loved running this group by myself for the last four years, it’s time for a change. For our first Leadership Team meeting, we’re going back to Bentley’s House of Coffee and Tea on Speedway near UA (this is where our group got started) on Saturday, February 6th at 1pm. If you have questions about these positions or think you may be interested, PLEASE COME!

I am looking for a one year commitment but the time you will actually spend helping to run this group should be fairly minimal. I’ve streamlined a lot of the day-to-day tasks involved in keeping this group going over the years, and if we find other ways to streamline operations, I’m happy to make changes.

I’ve come up with FIVE permanent committee positions that will require about 2 hours of your time every six months. We will meet as a team once every six months and do our work together but some additional outside time may be required. FOUR of these positions (below) still need to be filled. Additional time may be required for different jobs, and those are outlined below. I’ve also created two “Special Projects,” jobs, listed at the very bottom.

Don’t see the job you’ve been dreaming of? Not a problem, we can always make adjustments. 😉

Event Planning, 1-2 hours every six months

Do you like planning parties? Are you comfortable making short phone calls? Are you able to communicate with other people and handle very light logistics?

Our Event Planner(s) will be responsible for developing our annual calendar of events (can be done 4-6 months at a time) and providing a list of events (date/time, location, event title and short description) to our Publicity Coordinator. Our Event Planner may also be required to make reservations for group events at restaurants or parks. (Event Planning and Publicity Coordinator jobs may be combined.)

Publicity Coordinator(s), 1-3 hours every six months

Do you know how to post events in Facebook and export them to another calendar? (If not, Jess can teach you in less than 30 minutes.) Do you have reliable access to the internet?

Our Publicity Coordinator will be responsible for putting event data online into the group’s Facebook group calendar and then exporting to Google Calendar, which will push the event to our website, www.azfibro.com. Our Publicity Coordinator may also choose to post the events elsewhere to the web (AZ Daily Star, Craigslist, etc) if s/he feels so inclined.

Assistant Webmaster(s), 1-2 hours every other month

Do you have reliable access to the internet? Are you familiar with WordPress or willing to learn? Do you know how to mark comments as spam, run plug-in updates, proofread for typos and fix broken links? Can you post a short blog post with information on our events based on information from the Publicity Coordinators? (Jess can show you how to set these up months in advance and auto-publish on a set date.) Do you like design and have suggestions for our website?

Our Assistant Webmaster(s) will help Jess spot broken links and typos, address technical problems (where did my header go?!?), provide feedback on website upgrades and design changes, run security updates and generally ensure that the website is working properly.

Social Media Liason(s), 1-2 hours per month

Do you enjoy using Facebook and Pinterest? Are you able to communicate effectively with other people, even in high-stress situations? Are you an active member of our Facebook discussion group?

Our Social Media Liaison(s) will be responsible for helping to maintain order and a general sense of safety and kindness in our Facebook discussion group, admitting new members, and addressing spam or “trolling” (bullying or other inappropriate behavior). Although our Facebook group rarely has problems with sales or trolling, it does happen from time to time and usually requires quick action by a moderator or administrator. This person will also be responsible for maintaining our Pinterest account (purging out-of-date pins or broken links, adding new ones and directing group members towards this collective resource; this may also one day replace the “Resources” page on our website).

MMJ101/202 Coordinator- FILLED

SPECIAL PROJECTS

Medical Cannabis 101/202 Assistant, 2-6 hours every six months (including time spent at the event)

Do you use medical cannabis to treat your Fibromyalgia? Are you passionate about helping others find more effective treatments? Are you well-educated on the topic of cannabis? Are you able to arrive 30 minutes prior to the start of our MMJ 101/202 events to help Kathy set up? Are you able to help us find alternate locations for this popular seminar if ever required? Would you be able and willing to help collect free handouts, fliers, and other informational material from local physicians and dispensaries prior to each MMJ101/202 seminar?

Our MMJ 101/202 Assistant will help Kathy execute our MMJ 101/202 seminars. This person will assist in the collection of informational materials to be passed out at the seminars, as well as to help develop future educational programs, set up and clean up each seminar and ensure that publicity about this event has made it onto the web.

Advocacy Coordinator, varies

Are you passionate about educating the public about Fibromyalgia? Do you want to put together local advocacy efforts but don’t want to do it alone? Are you interested in helping us to coordinate with other local Fibromyalgia groups?

Our Advocacy Coordinator will be responsible for developing special projects involving education about Fibromyalgia and Chronic Pain both for our group and the general public. You may set up special seminars with local practitioners, organize an awareness day event, or something else entirely!

Medical Marijuana 101/202

Slide39

Join us this Saturday, December 12th at 1pm for an informational session this about using medical marijuana to help treat Fibromyalgia symptoms. No medical marijuana will be present at this informational meeting. Please RSVP with Jess (520-979-6097) for directions to Kathy’s house, near Campbell and Skyline. You can preview our presentation online at: www.azfibro.com/medical-cannabis/

This meeting will immediately be followed at 2:30pm by Medical Cannabis 202 (support meeting for anyone using medical cannabis for chronic pain) for CARDHOLDERS ONLY. If you do not have a valid Medical Marijuana card from AZ or a state that offers reciprocity with Arizona, you will be asked to leave as cannabis may be present during this meeting.

NFMCPA Conference Debrief: Saturday, October 24th at 3pm

Join us for a general debrief from the NFMCPA’s 2015 conference on preventing and managing chronic pain! This event will provide an overall summary of topics and presentations. (We’ll go into greater depth into the most popular topics over the course of the following months.) Please note that we are starting at 3pm and ending at 5pm, which is different from our normal schedule. We’ll be at Fronimo’s Greek Cafe. Please feel free to bring a friend. The room has been reserved for a party of 14.

Fronimo’s Greek Cafe: 3242 E Speedway Blvd, Tucson, AZ 85716 (Across from The Loft theater)

Fronimo’s offers counter service, meaning that you will need to go to a counter to order food if you would like to do so. We ARE in their private meeting room for the presentation. 🙂

2015 NFMCPA Treating and Preventing Pain: Saturday highlights

Dr. Frank Rice, Small Fiber Neuropathy in Fibromyalgia

  • Nerve conduction testing is not sophisticated enough to adequately evaluate small fibers, must use 3mm punch biopsy
  • Exercise may help the brain find better patterns to help reduce symptom severity
  • Small nerve fibers more reactive in FMS and other pain diseases
  • Epigenetic link from environmental imprinting + genetics (can possibly be reversed)

 

Dr. Michael Sorrell, Myofascial Medicine: Where we are and Where We Should Go

  • Many specialists should be aware of MTP’s but aren’t
    PT should stretch all affected muscles among their lengths; if this does not improve, patient should be re-evaluated
  • Trigger points (TrP’s) are electrically different from surrounding muscle tissue; sonoelastography shows TrP’s are stiffer
  • Can be used to treat some headaches and many migraines (more success with migraine without aura)

 

Wolfgang Bauermeister, MD, PhD, Ultrasound-Elastography: A Novel imaging technology to make trigger points visible

  • Takes 45-60 min to scan the whole body
  • “…the brain just cannot deal with [that extreme amount of pain.]”
  • Can be used anywhere on the body to break up calcified trigger points

 

Dr. James Friction, President International MYOPAIN Society, Preventing Chronic Pain Campaign

  • Pain costs the US an estimated $635 Billion each year
  • Protective factors like diet and exercise reduce risk factors for chronic pain
  • Having strong beliefs, compassion, and determination is the strongest protective factor involved in recovery

 

Dr. James Friction, President International MYOPAIN Society, Preventing Chronic Pain Campaign (workshop)

  • Risk factors are all related
  • $0.25 of every dollar spent in healthcare hours to treating diseases that result from changeable behaviors

 

Kim Jones, FNP, PhD,  Exercise and Nutrition

  • Muscle microtrauma more likely to occur when growth hormone levels are lower
  • FMS patients more likely to have low levels of growth hormone because of poor sleep and less
  • Exercise worked better than drug therapy to raise growth hormone levels to prevent muscle damage
  • Avoid moving your arms over your head and start low, go slow, and keep going!
  • www.myalgia.com/videos for FMS friendly exercise

 

Kathleen Holton, PhD, Optimal Nutrition for FMS

  • Avoid artificial colors, processed foods and sweeteners, especially aspartame
  • Increased levels of glutamate found in brain and spinal cord of FMS patients
  • Glutamate needs to be in balance with GABA
  • Magnesium blocks NMDA channel, which helps reduce pain
  • Mediterranean diet very good for FMS

 

Dr. William Collinge, Aware Health System: the Fibromyalgia wellness Project

Same as previous presentation by Dr Collinge

 

Elizabeth Christy, author of Why Does Mommy Hurt?

  • It’s ok to let go of ideas of being the “perfect parent”
  • If you feel isolated, join a support group for parents (“Parents with Pain” on Facebook)
  • Extended periods of “role reversal,” (kids helping parents with daily living tasks) can alter normal parent-child relationships
  • Try lower energy activities like drawing, coloring, or movie parties on high pain days

NFMCPA TAP Conference: Friday highlights

Dr. Daniel Clauw, Rhuematology at U of MI (keynote speaker)

  • Fibro patients have patterns common to other soft tissue pain disorders (RA, SLE, OA)
  • Chronic Pain can actually result in positive psychological factors, like resilience from “pushing through ” pain
  • Current treatments are not adequate for RA or FM
  • NOBODY should be counting tender points anymore for any reason!
  • The new 2010 criteria can help predict OA, SLE, and other pain based on survey results (higher score = less likely that surgery or opioid will work)
  • Dry eyes in FM not actually dry eyes – is another nerve problem!

 

Dr. Lynn Webster, pain specialist (Effects of hydrocodone rescheduling and medical marijuana)

  • After rescheduling, 18% of patients surveyed admitted to “borrowing” another patient’s hydrocodone (this is illegal)
  • Only 39% of patients remained on hydrocodone without dosing changes
  • Cannabidiols target CB1 receptors in the CNS and CB2 receptors in the PNS

 

Dr. Victor Rosenfeld, Director of Neurology, South coast Medical Group (Quantitative EEG during sleep in FMS)

  • Non-restorative sleep is a hallmark of FMS
  • ~45% of FMS patients have sleep apnea, which is a very treatable condition
  • Sleep disorders very common in FMS

 

Dr. Andrew Holman, Rheumatologist (PC3: Positional Cervical Cord Compression)

  • Tilting your heart forward or backwards can make spinal stenosis (compression) worse, putting pressure on the spinal cord
  • Cervical trauma is common in FMS

 

Dr. Cory Kingston, Chiropractor (Non-invasive Rehabilitation Program)

  • Forward head posture can deplete lung capacity by as much as 30%
  • Forward head posture pulls the entire spine and body out of alignment

 

Dr. James Friction, President of International MYOPAIN Society (Integrative Medicine)

  • Transformative Care model results in better long-term patient outcomes
  • Need to tip the scale in favor of healing and enhancing protective factors
  • Small daily changes make a big impact (6 months to make an impact)

 

Dr. William Collinge (Mindfulness, CBT and symptom reduction)

  • 573 PubMed trials indicating positive effects of CBT, 63 on pain and 7 on FMS
  • CBT focuses on changing self-defeating attitudes and behaviors
  • Tracking symptoms can be a form of CBT when you focus on successes

Q& A Panel:

  • Ask your insurance company about working with a health coach, who can help you manage your care and condition. Health coaches can also educate you about your illness to help you find more effective treatments. It’s free for you.

 

Barbara Kornblau, JD, OTR (Living and Buying with Fibromyalgia and Chronic Pain)

  • Engaged patients have better outcomes
  • Pacing can help protect your joints and reduce likelihood of injury
  • Think of chores as exercise

 

Kim Jones, FNP, PhD, (Yoga and Mindful Movement)

  • Bi-directional relationship between sleep and pain
  • Controls and FMS show no differences when muscles are at rest, contraction is another story
  • Average 40 y/o FMS patient has the balance of an 80 y/o

 

Mary Biancalana, MS, Edu, CMTPT, LMT, (Myofascial Pain Self-Management)

  • March in place during commercial breaks to increase blood flow
  • Referred pain can cause more problems than you may think
  • Use a tennis ball, foam roller or theracane to gently relieve Myofascial Pain
Skip to toolbar