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

smileDo you need to talk to other Fibromyalgia patients? Need to vent, laugh, or just BE with people who don’t ask impolite questions about your health?

Join us this Saturday, March 7th at 1pm at BJ’s Brewhouse at 5510 E Broadway Blvd (Craycroft/Broadway). We are usually seated at a large table to the LEFT of the hostess stand.

Can’t wait to see you!

Social Support: Lunch at Sweet Tomatoes (followed by CAKE)

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It’s going to be a busy weekend for SAFF! This weekend we are having lunch with the Southern Arizona POTS Group at Sweet Tomatoes (4420 N Stone) on Saturday, January 24th at 1pm. We are doing an optional white elephant exchange. If you would like to participate, please bring a silly item to exchange (under $5, does not need to be new).

 

On Sunday, January 25th, we’re going to a matinee showing of the new film Cake, starring Jennifer Aniston. We’ll be at the El Con Century Theaters (3601 E Broadway Blvd, Tucson, Arizona 85716) at 11:00 am. The showing is $6; we’ll meet in the lobby. The movie starts at 11:10am.

Famvir + Celebrex Phase II Clinical Trials

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There’s an important clinical trial that has just wrapped up phase II that should be of interest to anyone who has Fibromyalgia. Dr. William Pridgen and Associate Professor Carol Duffy at the University of Alabama have been experimenting with the use of Famvir, an anti-viral drug that is commonly used for the treatment of Herpes Simplex, combined with Celebrex, a COX-2 inhibitor, as a method of treating Fibromyalgia.

After watching many of his patients struggle with gastrointestinal

Professor Duffy had previously isolated the herpes simplex I virus in the digestive tract of Fibromyalgia patients.

Professor Duffy had previously isolated the herpes simplex I virus in the digestive tract of Fibromyalgia patients.

issues for decades, Dr. Pridgen gave several patients Famvir on a hunch. He figured that if the GI symptoms intensified during periods of increased stress, a virus could possibly be to blame. Professor Duffy had previously isolated the herpes simplex- I virus in the GI tracts of Fibromyalgia patients.  Dr. Pridgen used Duffy’s work to guide his treatment of these FM patients. Although the patients’ symptoms improved, Dr. Pridgen felt that there must be a second drug that would provide a better result if added to the Famvir. He added Celebrex, and found that many patients responded more favorably to this combination.

Here is Dr. Pridgen’s description of the method he is using to test this hypothesis- that the combination of Famvir (famciclovir) and Celebrex (celecoxib) will result in a significant decrease in Fibromyalgia symptoms:

A total of 143 patients selected using the ACR 2010 FM criteria were enrolled at 12 sites in a 16-week, double-blind, placebo-controlled trial.  Patients were randomized (1:1) to receive a proprietary combination of celecoxib + famciclovir or placebo.  Outcome measures included a 24-hour recall pain numeric rating scale (NRS), Fibromyalgia Impact Questionnaire (FIQ-R), Patient Global Impression of Change (PGIC), and the PROMIS fatigue short form at baseline, and after 6, 12 and 16 weeks of study participation.

Here are Dr Pridgen’s results:

The primary efficacy endpoint was change in pain from baseline.  Pain reduction was evaluated using the pain NRS and the 7-day recall pain item from the FIQ-R.  Change from baseline was determined using an MMRM approach with LOCF/ BOCF imputation for missing data.  A significant decrease in pain was observed for patients on treatment vs. placebo at 16 weeks by both measures.  The absolute change on the NRS was -1.9 units vs -1.1, comparing active to placebo (p=0.031).  On the FIQ-R item, the change was -2.2 vs -0.92 (p=0.001).  Key secondary endpoints included analysis of the PGIC, where a value of “1” or “2” was considered a clinical responder.  Significantly improved PGIC response rates were noted at endpoint: 33.3% for active vs 19.2% in placebo patients (p=0.031).  Total FIQR score change at the endpoint visit was -17.54 vs -7.87 (p=0.002), while changes in the 3 domains were 14.29 vs -5.44 (p=0.004) for Function, -4.29 vs -1.89 (p=0.003) for Overall Impact, and -16.77 vs -7.90 (p=0.004) for Symptoms.  In addition, improvements in fatigue were seen at endpoint on the PROMIS fatigue (-7.62 units vs -4.15; p=0.020).

The safety profile was especially encouraging.  Despite the celecoxib component, gastrointestinal and nervous system treatment emergent adverse events were reported significantly more often in the placebo treatment group (GI:  29.0% vs 42.5%; nervous system:  17.4% vs 23.3%; active to placebo), and study completion rates favored active treatment over placebo (82.6% vs. 60.8%) (largely driven by higher placebo discontinuation rates due to adverse events and lack of efficacy).

In short, Dr. Pridgen used two different methods to track patients pain. He used a Numeric Rating Scale (NRS), which is the 0-10 scale that so many of us are so familiar with. He also used The Revised FM Impact Questionnaire (FIQR) to assist patients in reporting their pain levels. This questionnaire requires patients to respond to a variety of statements such as, “[How difficult is it to] Change sheets on bed,” on a scale that ranges from No Difficulty to Very Difficult. Both systems showed a significant decrease in symptoms following treatment with both Famvir and Celebrex.

 

In an article written by the University of Alabama, Dr Pridgen stated,

The patients who took both drugs, however, came back and said everything was better. Their fibromyalgia was gone. Their chronic fatigue was gone. Their headaches were gone. All of these things had cleared up. When the first few patients approached him, he thought it was a fluke, but as more and more and more patients said the same thing, he knew it couldn’t be a coincidence.

Here are Dr. Pridgen’s conclusions from his Phase-IIa trials:

A proprietary combination of famciclovir, which we postulate is inhibiting herpesvirus replication, and celecoxib, known to inhibit both herpesvirus replication and reactivation, was efficacious in treating multiple symptoms of FM.   Given the simultaneous improvement in many domains and the surprising tolerability of this combination of drugs, we believe this combination warrants further study as a potential new therapy for fibromyalgia patients.

 

 

Further Reading:

http://simmaronresearch.com/2014/11/drug-combo-pridgen-antiviral-fibromyalgia-trial-identified-results-available/#sthash.zb5yaKts.dpuf

- http://acrabstracts.org/abstracts/a-combination-of-celecoxib-and-famciclovir-is-efficacious-in-the-treatment-of-fibromyalgia-results-of-a-phase-iia-randomized-double-blind-placebo-controlled-study/

-http://fiqrinfo.ipage.com/PRO_Newsletter_46.pdf

-http://www.as.ua.edu/home/professor-surgeon-team-headed-to-third-phase-clinical-trials/

Social Support: Elder Care, Saturday Dec. 6th at 12pm

Join us for our December meeting at St Luke’s Home (615 E Adams St, Tucson, AZ 85705). One of our members has just moved into this wonderful community and their residents want to meet us! I think this will be a great way for us to talk about some of the tougher issues associated with chronic illness, aging, and major life transitions.

St. Luke’s will be feeding us a free lunch. Lunch begins promptly at noon. (Please note this is earlier in the day than our usual start time.) The main dish will be a Gluten-Free salad chicken salad.

If you’d like to make a small donation as a thank you for the free lunch, St Luke’s is in need of new, unopened toiletries for their residents.

http://www.stlukeshometucson.org/stluke_home/

Social Support: Mosey in the Mall, Saturday Oct 11 @ 1pm

Join us this Saturday, October 11th at 1pm at La Encantada for a nice stroll and some window shopping! Please feel free to bring a friend or spouse/family. Let’s meet on the ground-level courtyard, in the middle of the mall (near the Apple store). There are several benches under large trees in this courtyard.

There are several restaurants here, but they are a bit more expensive than our normal fare if you need to eat lunch.

There should be plenty of parking- lots of parking lots surrounding the mall! I’ve found it’s easier to navigate the parking lot in the rear of the mall because it’s not as busy. Fewer cars = less traffic. The sidewalk spits you out next to RA (sushi restaurant).

http://www.laencantadashoppingcenter.com/

Share and Support: Sat., Sept 5th at 1pm

Join us for our patients-only “Share and Support” meeting, Saturday, Sept 6th at 1pm. We’ll be at BJ’s on Oracle and Wetmore (4270 N Oracle Rd, Tucson, AZ 85705). 

We DO have a reservation, so please ask the host(ess) if you need help finding our table. BJ’s offers entrees for around $10 for anyone who needs to eat lunch, and they do have gluten-free options. We are usually the largest table in the restaurant.

Questions? Comments? Contact Jess at info@azfibro.com, or 979-6097 (cell). We hope to see you there!

MMJ for Tucson: A Medical Marijuana Resource Event

Are you taking medical marijuana for pain management? Do you have questions for dispensaries, advocacy groups, and certification clinics? Stop by the Whistle Stop Depot (127 W 5th St, Tucson, Arizona 85705) tomorrow, Saturday August 30th from 6-9 pm to speak with dispensaries, advocacy groups, and certification clinics. This event is free and open to the public.

mmj for tucson

Cannabis 101: Saturday, August 2nd at 1pm

Are you curious about medical marijuana? Want to know how it can actually turn off pain receptors? Concerned about legal issues? Not sure how you would even begin to approach your doctor about this issue? This meeting is open to anyone who would like to attend- if you’d like to bring a friend, please feel free to do so. We would appreciate it if you could let us know in advance, so we can make sure there are enough chairs for everyone!

Join us at Kathy’s house (please RSVP via email -vbjess@gmail.com or info@azfibro.com – or by phone -520-979-6097 -for directions and address) for another installment of Cannabis 101. Kathy lives in the Foothills near Campbell and Skyline.

We’ll also be celebrating Judi West’s birthday, as her birthday is 8/1. We’ll have a cake to celebrate everyone’s birthdays.

As usual, there will be NO cannabis present at this presentation.

We will have our cardholder’s support meeting at 2:30pm. If you would like to stay for this meeting, please be sure to bring your AZDHS-issued Medical Marijuana card (MUST BE CURRENT!). If you have medicine that you want to exchange with other patients, this is the time to do so. We typically discuss specific dosing and preparation methods, dispensary reviews, strain reviews, legal issues, etc.

**If you do join us for both meetings, please notify Jessie or Kathy if you have cannabis with you when you arrive, so that we can secure it during the Cannabis 101 presentation. We do NOT provide cannabis to anyone who should not have it.**

Coping With Emotional Pain

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“Be kind to people and don’t judge, for you do not know what demons they carry and what battles they are fighting.” 
― Vashti Quiroz-Vega

 

I’ve had some pretty high pain levels over the last week. I do not share this because I am seeking pity, sympathy, or empathy. It is what it is. I am fortunate to have a supportive, loving spouse and supportive, loving friends, many of whom fight the same daily battles that I fight. I am fortunate to have developed coping skills over the last 11 years to help get me through rough days and weeks. Weeks like last week, when getting the kitchen clean was a major accomplishment. Weeks like last week, when it felt that no matter what I did, I could not escape the pain. Weeks like last week, when I knew my ‘to do’ list was exceptionally long, and yet, it felt as if I just could not make a significant dent in it, no matter how hard I tried. This morning, I awoke to a filthy dirty kitchen, and had to wonder to myself, ‘How did THAT happen? This kitchen was spotless two days ago!” Pain, my friends, is what happened. Pain is very tiring.

But the worst of it for me, by far, are the emotional consequences of living in pain. Physical pain is hard, but emotional pain is harder. There is no pill you can take to escape emotional pain. For example: having to tell a friend, “I’m sorry, but I just can’t make it to dinner,” when I was the one who scheduled dinner in the first place. Cancelling on my trainer because I don’t feel well enough to drive

Thanks for the suggestion, but I really don't think Rice-a-Roni is the answer I'm looking for!

Thanks for the suggestion, but I really don’t think Rice-a-Roni is the answer I’m looking for!

into town by myself to exercise, even though I know the exercise will help me (oh, the irony!), simply because I feel that my mind is not sharp enough to concentrate on driving safely. Wondering how my body will cope when my husband and I have kids. Wondering if I will ever gain enough control over this pain to teach full-time again without calling out sick once a week. Dealing with thoughtless and careless comments, like “If you just did _____, you’d feel SO much better!” And, “Oh, if you’re still eating Rice a Roni, you’ll never get any better!” (Yes, someone actually said that to me last week.) Or, my personal favorite, the condescending looks that I feel I am receiving when my gait is unsteady because of a muscle spasm in my knee or hip while walking, and a disparaging comment from someone else that follows the spasm.

At times, I feel like saying, “Oh, really? Is THAT the magical cure that I’ve been missing for all these years? And to think, none of my doctors have ever thought to mention that to me! I’ll have to pass that along to my medical team, so tell me, which study and publication gave you that information? I’d love to look up the original research on PubMed.” I know that this semi-sarcastic response is really not going to help anyone, but I can’t help but think how great it would feel in that moment. Pop-culture does not equal medicine.

These comments hurt because I did not choose this life. Because I never prayed to God for a life filled with internal conflict with myself, external conflict with the world, physical pain, emotional isolation, and feeling as if others are looking down on me for ‘not working hard enough.’ If you truly believe this is a path that any person would choose, you must have some serious emotional baggage of your own. I cannot come to any other conclusions than that. Nobody chooses this life. It simply happens. And it can happen to ANYONE.

I was 18 years old, and the healthiest I’d ever been when I got sick. In a matter of three weeks, I went from doing 160lb leg presses regularly (I weighed 130lbs at the time), and running a 5K every week to having to sit and rest during a 1/4 mile walk on a gentle incline from my dorm room to the dining hall. Why did I have to sit and rest? Because I was so winded that I felt as if I was going to pass out, right there on the sidewalk. That kind of deterioration does not just happen to healthy people. Later, we discovered, my blood pressure was plummeting (sometimes to as low as 80/40, while my heart rate was at a high 130), sometimes after only mild exertion. Medications that “should help,” (my doctor’s words) granted me the gift of 50+ extra pounds to carry around, which only made the pain worse. This completely off-set any benefits I had been receiving from those medications. I’ve managed to lose some of that weight, but some of it just does not seem to want to go anywhere, no matter what I try. I have not given up on trying to drop this extra weight, but I have accepted it for what it is. My story, sadly, is not unique.

I know that when I am in pain, thoughtless comments affect me more. It feels as though the coping mechanisms I have worked so hard to build up over these last 11 years are suddenly not available when I am in pain, while I am still expected to meet functional and social obligations during these periods. The reason for this might be explained by a study performed at Harvard in 2012 using fMRI scans showed that Fibromyalgia patients express fewer neural connections within the brain to the amygdala, hippocampus, and the brain stems during pain episodes as compared to healthy controls.

Patients with FM displayed less connectivity within the brain’s pain inhibitory network during calibrated pressure pain, compared to healthy controls. The present study provides brain-imaging evidence on how brain regions involved in homeostatic control of pain are less connected in FM patients. It is possible that the dysfunction of the descending pain modulatory network plays an important role in maintenance of FM pain and our results may translate into clinical implications by using the functional connectivity of the pain modulatory network as an objective measure of pain dysregulation.

In other words, pain signals can actually block normal homeostasis in Fibromyalgia patients. It’s little wonder that pain also makes us forget all of the coping skills we’ve worked hard to master, even if it is only temporary. It’s little wonder that we try to “make up” for less productive days when we feel better, which sometimes sends us into a rebound flare. And, it’s little wonder that some of us have more digestive problems when our pain levels are higher, whether that is the result of taking more pain medications (which tend to cause constipation), or just a result of the pain pathways affecting homeostasis (digestion). This may also explain why Fibromyalgia patients are more irritable during high pain episodes, and why we have a harder time coping with stress in general; both are processed in part by the amygdala.

smileMost Fibromyalgia patients are experts in hiding their pain. It is a social taboo to talk about it extensively. Many pain patients are concerned about losing their jobs, housing, and sometimes even insurance or doctors if they talk about their pain or how it affects their lives too much. Or if they ask for “too many” work accommodations (for some people, this means even asking for ONE accommodation), even if the accommodations are truly necessary. Eventually, we all hit a point when we cannot hide it anymore. That may only last a day, a week, or a month- or it may be a permanent change. I think this homeostatic dysfunction plays a role in this phenomenon. When you are struggling to regulate your digestive tract, or to not think about how you’d really love to amputate your right arm because it hurts so G-damn fucking much at that moment, filtering your thoughts during a conversation sometimes just does not feel as important as it once did.

Many patients do not talk about their pain because of the kinds of insensitive comments I experienced this week. It is difficult to talk about pain. The problem is that when we do not talk about our pain, it’s easier for society to pretend that it’s not there. It’s easier for us to pretend it’s not there. We become even more isolated. When we don’t talk about these tough issues, we don’t see legislative changes like the Americans with Disabilities Act and Affordable Care Act, which help prevent disability-related discrimination. We don’t see the development of new research (like the study above), that may eventually help to develop more effective treatments.

While it helps to know what’s going on in my body during these high pain weeks, careless comments still sting. I think that they probably always will. This is where the benefits of a support group can help; we have all heard these careless comments, and we have all heard them when we’re in a lot of pain. Sharing the insensitive comment with a support group can be cathartic. Just hearing from other pain patients that the comment truly was insensitive and offensive, helps. Knowing that you’re not the only person fighting these internal and external battles, helps. None of us are truly alone.

Original image from: http://scn.youngeasy.com/list/hiding%20pain/1.html

Original image from: http://scn.youngeasy.com/list/hiding%20pain/1.html

If you are having trouble coping with a pain disorder, find a support group. Reach out. Talk to other patients. Find someone in your life who will simply listen to you vent- and maybe even give you a hug when you’re done. Talk to your doctor about the way you are feeling; it’s possible that a few weeks or months of talk therapy might help you develop more coping skills and it might even help you to come to terms with your illness. When your burden becomes too heavy, let someone else help you carry it for a while. You are not alone, and you are NOT your illness.

 

Share and Support: Saturday, July 12th at 1pm

Join us for our patients-only “Share and Support” meeting, Saturday, July 12th at 1pm. We’ll be at BJ’s on Broadway and Craycroft (5510 E Broadway Blvd). We are normally seated in the “sunroom,” to the left of the hostess stand.

**Please note that this is NOT the first Saturday of the month (our “normal” schedule) because many people may be out of town or exhausted from 4th of July festivities.**

We DO have a reservation, so please ask the host(ess) if you need help finding our table. BJ’s offers entrees for around $10-$20 for anyone who needs to eat lunch, and they do have gluten-free options.

Questions? Comments? Contact Jess at info@azfibro.com, or 979-6097 (cell). We hope to see you there!