Traveling with Fibromyalgia

travelTravel can be difficult, if not outright impossible, for anyone with fibromyalgia. I personally prefer to drive, because that way I don’t have to deal with TSA. Below are the special routines I’ve developed for myself to make that process a littler smoother and less chaotic for me. I also have specific routines that help make a road trip more feasible without putting my body through too much strain.

Driving:

Stopping every 1.5-2 hours on a road trip to stretch and massage my legs and shoulders helps to keep adhesions (knots) at bay. I also tweak my “normal” med dosages (amount AND timing) to accommodate higher pain levels during travel.

HG17779_QA_man-sleepless-triggers-fibromyalgia_FS

“Cheap motel? What was I thinking?!”

Avoiding certain foods (very spicy, or anything that has a remote chance of causing gas, for obvious reasons) and including more fruits and vegetables a few days before travel helps make travel easier on my body. I also try to clear as much of my schedule as possible a few days before so I’m a little more well-rested for the trip.

If I know we’ll be staying at a hotel that might not have a great bed/pillow arrangement, I bring a pillow, and sometimes a spare blanket, too!

During a trip, I sometimes have to schedule in some down time so I can actually enjoy the trip. My fiance and I have started to get really good at building in a balance of activity + restful activities during our trips, which also helps to reduce MY stress with it all!

 

1389285067000-GTY-TSA-SCREENSFlying:

-My Rx meds and daily supplements go in one gallon-size ziploc bag. If I have a med planner to take with me, I seal that in another ziploc, roll it up, and stick it in the bottom/side of the first gallon ziploc bag so it doesn’t fly open (this way, even if the med planner DOES open up, the pills aren’t going very far). Nothing worse than playing “medication roulette” in an airport bathroom!

- Any OTC products, like Biofreeze, ibuprofen, knee brace, etc., go in a second gallon ziploc. Both of these bags will need to come out for x-ray/hand inspection (you just have to ask TSA for a hand-inspection of your stuff if you don’t want it going through x-ray). Keeping the OTC stuff used “as needed” separate makes it easier to find if I’m in the middle of an airport and start having muscle spasms in my ribcage or something. Medical items are NOT limited to the 3.5 oz rule that toiletries are limited to. So, take that 6oz bottle of Biofreeze with confidence! Just make sure it’s clear somehow that it’s a medical item. In my case, I bag the non-prescription stuff up in the same way I bag the Rx stuff. So far, I’ve not had any problems with that.

- Pack any toiletries I probably won’t need during the flight (like a razor) in my checked bag, if I’m checking anything. Keep toothbrush, toothpaste, contact solution (this one actually goes in one of my gallon-sized ziploc bags since TSA classifies this as MEDICAL), and anything I might need for the first 24 hours after I arrive, should my luggage get lost. These toiletries (and lip gloss, lotion, etc from my purse) go in a quart-sized bag. These also have to come out for security. (In other words, when I get to security, I have three ziploc bags to pull out of my carry-on.)

-I bring an empty Nalgene bottle with me. That way I can fill it up on the other side of security without worrying about if I’m going to drop that flimsy paper cup from Sbarro’s OR what I’m going to do for liquid if I need to take a pill in between beverage service on the plane, particularly if it’s during a period of “rough air.”

Three Coloured Nalgene Tritan Wide Mouth Water Bottles

Take that, $5 bottle of airport water!

-When I pack my carry-on, I make sure these items (plus wallet/ID/boarding pass) are towards the top of my bag, so that when I get to security, I just have to unzip my carry-on, pull them out from the top, and put them in a plastic bin for x-ray.

-Once I get through security, I re-arrange my carry-on so that whatever I’m reading/listening to on the plane is easier to find, which sometimes means sticking my earbuds in my pocket or wrapping them around my phone.

-I usually have a lightweight change of clothes in the bottom of my bag, and that stays in the bottom since I’m less likely to need that. That usually also lets me layer more or less if I need to. I try to stick a light sweater in there, too.

sick_dumb_mug- I also keep some kind of healthy-ish snack with me- things that I know my stomach handles well. Trail mix, dried fruit, a cookie, etc. My dietary wants/needs seem to change a bit when I fly. For example, if I’ve got a layover and need to eat, I do better with really soft stuff that *doesn’t* have probiotics in it, like ice cream. For whatever reason, probiotics make my IBS flare up when I fly, either shortly before, during, or shortly after. So, no yogurt for me.

- Purse: some trips I have kept my purse separate from the rest of my carry-on stuff, but I find it’s easier to manuever through an airport if I can pack the contents of my purse in my carry-on, especially if it’s a long flight. Sometimes this means packing the purse itself in my checked bag, but keeping the contents in my carry-on.

Key things to know about flying with a chronic illness:

If you don’t want to go through those body scanners, you can request a pat-down instead. They will still use the magnetic wand on you unless you have a specific reason why they can’t (like a pacemaker). If this is the case for you, make sure you have some kind of documentation showing that you have a pacemaker. Your cardiologist should know what you need. It’s just not worth the risk! It is up to you to decide whether you want the pat down or the x-ray. Neither is really a good option for someone with Fibromyalgia, but those seem to be the options that TSA has given us.

TSA allows you to take anything through of ANY quantity, as long as it is MEDICAL.

So, if you have a dysautonomia issue (POTS, etc) and you need to keep a specific formulation of a rehydration solution with you, you can bring it through security. It does need to be in the original bottle/packaging. And to be safe with something like that, I’d have a doctor’s note, pharmacy info (from the pharmacy, if it’s an Rx) with it. As noted above, TSA considers contact solution to be a medical necessity, so you’re actually not limited to just a 3.5 oz bottle. I’ve actually taken huge containers of powdered medical food through without a problem (think 60 oz). Just a few weird looks from other passengers. Meh.

All medications HAVE to be in the original bottles. I’ve never had a problem with pills in a med planner (technically, I don’t think they’re supposed to let those through, but I could be wrong on that), but I also make a point to put the Rx bottles in the same clear plastic bag as the med planner. If you get super-huge bottles for 3-months worth of meds at a time, you can ask your doc to write a script for however many pills you’ll need during the trip + a few extra in case of emergencies. Obviously, there might be some insurance authorizations required here for extra fills. I’ve had doctors prescribe the same drug at half dose for me before specifically for a trip- that usually gets around the insurance pre-authorization/extra fills issue. It also gives me more flexibility with dosing if the normal 20mg dose of Flexeril is not enough for the added stress of travel. Just be sure that you have a conversation about that kind of thing with your doctor before your trip!

If you think you’ll be fine without a wheelchair, but then get to security and feel sick, let somebody know. TSA CAN wheel you through security if you really need it. You can always ask for a wheelchair at any point during your travel, whether you’ve requested it ahead of time or not. If you know you’ll need a chair, note that on your reservation (there’s usually a box to check), and call the night before/morning of to confirm that someone will be able to meet you with a chair when you arrive at the airport. That person will also escort you through security, at no charge. It is, however, appropriate to tip your wheelchair wrangler. ;-)

Do you have other travel tips? Let us know! Join us on Facebook at: https://www.facebook.com/groups/120979651274630/ *

 

*Please note that we do NOT allow spam of any kind in this group. We’re happy to hear about your experiences with different therapies, but any posts that even remotely look like spam will be treated as such. We also do not tolerate trolling or verbal/emotional abusive posts. ;-)

New and Improved- the “Good Doctor” list!

Looking for a new doctor? Need to find a good acupuncturist? Check out our new “Good Doctor” list! If you’d like to make any additions, follow the directions at: http://www.azfibro.com/resources/good-docs/

Questions? Comments? Send them my way at info@azfibro.com.

Social Support: Simons Physical Therapy, Sat., March 1st at 1pm

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.

Medical Cannabis and Sleep

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.

fitbit dec28

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:

fitbit jan22

 

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):

fitbit feb9

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.

Free Yoga Class TONIGHT at 6:30pm

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**

New Patient-Matching Forum!

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.

healclick1

 

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!)

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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 

Social Support: Medical Cannabis 101

Join us this Saturday, January 18th at 1pm for another installment of Cannabis 101 (1 pm-2:30 pm) and Medical Cannabis Support for Fibromyalgia (2:30 – 3:30 pm).  Both meetings will be at Kathy Jendrezjewski’s home in the foothills, near Campbell and Skyline. Please RSVP with Jess for directions (info@azfibro.com or 979-6097).

We start with Cannabis 101, which is (approximately) an hour-long presentation/discussion about the science of CBD’s and THC in cannabis (why it helps pain, nausea, insomnia, etc), how the AMMA (AZ Medical Marijuana Act) works, what it is like to use medical cannabis for pain, and how the process of getting a card works. This meeting starts at 1pm. No medical marijuana is present at this meeting, but we do provide examples of how a topical, tincture, or vaporizer would work/be taken, but with placebo’s. I have that information available at: www.azfibro.com/medical-cannabis.

This meeting is open to anyone who would like to attend, but because we are holding the meeting in a private home, we ask that all RSVP’s are directed through me (Jess) so that I can provide directions AND keep a headcount.

 

At 2:30, we will immediately transition into our cannabis support meeting for cardholders. We ask all cardholders to bring their cards with them, because we do sometimes exchange medication (but obviously not money or other goods/services) with one another. We want to be sure that we are not providing medicine to someone who should not have it, even if it is with good intentions and good faith that no laws are being broken. At this time, we ask (politely) that anyone who does not have a card, to head home. Discussion in this meeting is usually more focused, sharing experiences with different strains, comparing preparation/dosing methods, etc.

 

If you know of anyone who would like to join us, please feel free to pass along this information. Jess’s cell phone number is 520-979-6097, and the email address for the group is info@azfibro.com. All of this information is available on the web at: www.azfibro.com.

Spring/Summer Calendar

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.

Fibro in the News

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:

Happy Reading!

 

 

Social Support: Laughter Yoga, Tuesday Dec 10th at 6pm

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/watch?ref=profile&feature=share&v=3_vjHY2DdhQ&fb_source=timeline&desktop_uri=%2Fwatch%3Fv%3D3_vjHY2DdhQ%26feature%3Dshare%26fb_source%3Dtimeline%26ref%3Dprofile&app=desktop