Fibromyalgia and Long Distance Bike Touring

by Paula Werme

If you stumbled on this page by accident, or are actually interested in this stuff, it’s here as a log of my training and bike ride across the US. The page is being set up before the bike ride, so it’s not certain whether or not I can make it across. I tried to cruise the web for information about how to make a challenge like this more survivable for a fibromyalgia sufferer, and I came up with a big, fat goose egg! There wasn’t even ONE page I could find on actually doing major physical feats with fibromyalgia. Biking the US has been one of my goals for as long as I can remember, however. I’m not willing to forego the bike ride despite the fibromyalgia, so I figured that if anything I write can help ANY fibromyalgia sufferer, it’s worth the time. It remains to be seen if it will help in deciding to tackle a physical challenge or discourage it.

The History of the Bike Ride, and the Fibromyalgia

I was originally diagnosed with Fibromyalgia at age 36 right after my daughter was born. I joked about being put in the geriatric section of the maternity wing. I only have the one child, so you can imagine what getting through the pregnancy was like with advanced age and undiagnosed fibromyalgia. Getting up in the middle of the night to nurse her and crashing into the furniture and walls on the way to grab a hungry baby seemed odd to me, in particular because I certainly wasn’t drinking any alcohol during that time. As the first few months of exhaustion gave way to a more settled routine with no improvement in how I felt, I finally figured out that exhaustion didn’t begin to explain why I still felt so bad. I knew someone with Fibromyalgia who suggested I be evaluated for it. So I was.

My immediate reaction to the diagnosis was to apply to law school. I had been increasingly interested in law as I wandered through life, and the diagnosis actually crystalized in my mind why I was afraid to try it. It had nothing to do with the intellectual challenge. It was because I never felt well enough to think I could make it through. After all, it was a grueling experience, from what I had heard. I was afraid of the pain. After being diagnosed, I figured if I could manage it, I could make it through law school. I was correct in that guess. I applied, was accepted, asked for, and thanks to the newly enacted Americans with Disability Act, received permission from the law school to take four years instead of the usual three. So, when Hannah was 2, I started law school. It was less pain inducing than every day with a two year old. My favorite change, aside from the intellectual stimulation, however, was that there weren’t ANY LEGOS on the floor of the law school. Needless to say, at the time, they were all over my house, and they hurt like hell when I stepped on them.

Although the first semester was pretty bad, after that it was more manageable. I got through the bar by moving to Concord to live a block from the law school while doing the bar review courses, and that extra step of not having a lengthy commute, taking very good care of myself, exercising, and religiously eating a proper diet that summer got me through the bar exam on the first try. I also got special accommodations for the bar exam as well. I got to split the essay portion into two days of three hours instead of one six hour testing session, and got to take breaks in the multi-state without being docked the break time. I also had my Rheumatologist shoot novacaine and steroids into my lower back the Friday before the bar exam - it’s a major pain center for me - and I got through the bar exam with hardly any back pain at all. I took my usual pain killers as needed as well. So, if you think no one can take the bar exam with fibromyalgia or on drugs, you would be wrong. I doubt I could have passed without them. That wonderful complete-pain-relief shot of novacaine and steroids for the lower back was not a long term solution for pain, however. Upon returning home after the bar exam and discovering that it would take until the bar results came back to pick up the house after neglecting it for a summer, the short, relatively pain free respite was unceremoniously OVER.

The rest of my forties has hardly been easy. I’ve had to manage the fibromyalgia while trying to practice law, and it’s flared and been good at various times. My practice was close to full time for only about a year or so, but it was far too much for me, and I’ve never let it get to that level since. In the last year or so, I’ve cut drastically back on my case load.

After I went to law school, which was physically stressful even as it limited my time to exercise, I managed to hit health disaster by breaking both legs after law school.

The first break was a totally innocuous drop off a step at Girl Scout camp. I had been trying to round up 11 Brownies to pack for their parent’s arrival after a weekend camp out. Having just spent the weekend camping with 11 Brownies, you can bet my Fibro was flaring. My leg went sideways off the step, but not before I saw my ankle bent to the side at about a 90 degree angle. Ankles don’t bend that way naturally. At any rate, I decided almost instantly that if you’re going to break a leg, Girl Scout camp is THE place to do it. I must have had 10 certified First Aiders rushing toward me trying to administer first aid. That baby was iced, splinted, and wrapped within two minutes of the break! Needless to say, I also instantly asked for my ever- present container of pain meds. Since my assistant troop leader was taking ANOTHER brownie to the hospital to check up on HER earlier injury at the time of my accident, I got to supervise the brownies with my leg propped up on my luggage for an hour or so. Some parents finally arrived to help them, and I decided I felt well enough to make the return trip home before heading for the hospital. By the time I got to the hospital two hours later, the ER folks didn’t even believe it was broken, because the quick icing had prevented ALL swelling. After the xray confirmed my claim that it WAS broken, the orthopaedist broke the bad news that he couldn’t even cast it that day because the lack of swelling meant that the cast would cut off circulation when it did swell. So there are disadvantages of immediate first aid.

You might think the broken leg itself was the disaster. It didn’t help life, but it wasn’t the main disaster. During the recovery period for the first broken leg, I got plantar fasciitis, which if you haven’t had it, can hardly be described in terms of pain. It was like waking up with the level of pain of the initial break every single morning. I can only guess that the reason I got it was from walking funny with the weight of the cast. Between being off my feet from the broken leg, and the steroids used to treat the plantar fasciitis, I quickly gained weight, which didn’t make life much better. I also let it get to a ridiculous level of pain before seeking treatment for it. I had never heard of it, and finally asked my husband to do an internet search on heel pain. When he handed me his result, I knew immediately that was it.

At any rate, the left leg break having long since healed, I still managed to be in a major flare of the plantar fasciitis when my mother died in 1998. I probably was flaring in the fibromyalgia department as well, but I barely pay attention to that with the exception of adjusting pain meds upward temporarily, so I don’t really remember. Unless a flare is accompanied by a major emotional meltdown, I tend to just forget about them. At any rate, knowing how stressful and busy the next week would be, the morning she died, I went to a podiatrist in the Detroit area for another shot of steroids so I could walk at the funeral. He must have shot me up with a PILE of steroids, because between Saturday morning when she died, and the funeral the following Friday, I had gained TEN pounds. The dress I had purchased the week she died didn’t even fit. My feet felt just FINE, however, so my misery at the sudden weight gain was at least accompanied by some benefit. So, by the time we had the car crash later that day after the funeral that broke my second leg, I was hardly in any shape to take much more stress.

It turns out that being hit on the ball of the foot with an accelerator pedal decelerating from 30-0 within a few feet can do major damage to your knee. This break was far more painful than the first break, the cause of which was eventually diagnosed as a “bone bruise” on the MRI. A “bone bruise” is essentially a huge pile of micro breaks, with blood and swelling within the bone where there is no visible fracture on x-ray. There is also no place for the blood and swelling to go, because it’s not exactly soft tissue. So it just sits there causing pain nerves to fire 24 hours a day. Between the second broken leg, the bone bruise, and disability from a smashed ACL ligament - well, let’s just say recovery was a bit slow. It was a year and a half before I could walk downstairs forward with a laundry basket full of laundry. When I could take it down at all, which was months after surgery, I dragged it down and walked backward. My husband gallantly offered to sleep on the futon downstairs the first night after surgery, but bailed out and went to his own bed the second night. I was NOT a happy camper that first night, post-surgery.

After recovery from the break and knee surgery, I finally got REALLY serious about getting rid of the plantar fasciitis when we scheduled THE trip to Disney World. Hannah was 11, we essentially won the cost of the stay in the form of a work bonus spendable at only a limited number of places, and we had a limited amount of time to spend it or lose it. I wanted the trip to be good for her. I broke down and got a night splint, and wore it religiously for three months prior to the trip, alternating legs. It worked VERY well, and I’ve not had a lot of trouble since. I also got orthotics, but I tend to be lazy about moving them between shoes, so I don’t use them as much as I should. Nevertheless, it isn’t much of a problem any more.

In preparation for the bike ride, the problem with plantar fasciitis solved, I started dieting for the ride in fall of 2001. I had lost weight before, and wanted it to STAY off this time, so I interspersed periods of dieting to lose a few pounds at a time with periods when I didn’t diet, but just ate to maintain the small weight losses. Once I started feeling FAT at my lower weight, I would diet a couple more weeks, maintain a month or so, and repeat the cycle. I alternated between weight watchers week one, and just having stir fried tofu and veggies for lunch every day for two weeks. It worked, and the weight I’ve lost has stayed off. Seriously cutting down on the Ben and Jerry’s has also helped maintenance. By March of 2003, I got back down to my law school weight, which is hardly ideal, but it’s a lot lighter than I was after six months with a rotten knee. Nevertheless, I could double my weight loss and still not be skinny. That’s a project for after the bike ride, however. So far, the books I’ve read have indicated that women do NOT tend to lose weight on lengthy bike trips, and my training so far seems to agree with that. I also haven’t lost an ounce since March when I started training. I think I look a bit thinner, however since I’m building some muscles in my legs.

Having solved the foot problem, and started losing weight, I also decided to reevaluate my Fibromyalgia routine in mid 2002. I was having increasing amounts of pain, and my drug use (of pain killers) had drastically gone up in the year or so prior to that. My rheumatologist isn’t into prescribing large amounts of strong pain killers, and he suggested an accupuncturist.

The acupuncturist did do acupuncture, which I’m still not sure worked to bring about any long term pain relief. What helped even more was that the acupuncturist suggested a medically supervised elimination “cleansing” diet. Being desperate enough to try anything once, I went ahead and did it. It was a pain to do, but it helped a LOT. I did it twice, and have mostly booted milk and wheat from my diet as a result of the diet When I eat either, my symptoms flare. Oddly, I haven’t cheated on the wheat with wonderful home made bread, but with that which is most convenient when I’m on the run - Dunkin Donuts. Yuck! I pay for when I grab a meal there as well, but I figure it’s a lot better tasting than a Big Mac, and I don’t do it often. One of these days, I’m going to have a real piece of home made bread, however! Just by using wheat free bread in the mornings with my eggs, having wheat free granola I make myself on other days, and replacing wheat pasta with other pasta has eliminated about 85% of the wheat from my diet. Swedish pancakes are big in our house, however on weekends, and I can hardly tell the difference by substituting other flour for the wheat. I can’t figure out how to make pancakes without milk, but we don’t have them all that often. (Note to the vegans of the world - don’t bother telling me to substitute soy or rice milk. I use rice dream on my cereal already, but it doesn’t do a darned thing for pancakes!) Some times however, I’m even good when I eat lunch on the road. So, the pursuit of perfection hasn’t worked for me in the diet arena, but I’m a lot better than I was. My pain killing medication has gone back down substantially. I have flared and used pain killers after one or two long training rides, so I’m not expecting anything close to perfect pain control on the cross country adventure.

Current pain control: Tylenol 3, taken with a Flexeril as needed. I do this one - three times daily, always at bedtime if nothing else. Percocets as needed when I have a major flare not controlled by the Tylenol 3, which is usually around that time of the month, or the occasional major back meltdown. Maybe I’ll get what every 50 year old wants for her birthday - (menopause!) - and one cause will be eliminated. Hey, I can dream.

Current other drugs: Lots - I have a lot of other stuff going on with allergies, which are very commonly seen in fibromyalgia sufferers. Besides weekly allergy shots, I take Allegra, Accolate for Asthma, Effexor, B-vitamins, and health food store anti-oxidant mix, Pregnenalone and DHEA when I remember to pick it up at the health food store, Calcium (You guessed I’m religious about THAT, didn’t you?), allergy shots, and an inhaler on occasion. What can I say? - I’m high maintenance. My husband doesn’t say a word about it - he likes life a LOT better when my fibromyalgia is well controlled. I also get a massage once a month or so. My massage therapist says I’m not exactly a “fluff and buff.” She earns her money.


The training schedule has been a LOT lighter than what is recommended in biking books. The books do at least mention that the longer the ride, the more “on the ride” training you can do. It appears it will be necessary on this trip. I built up slowly, but we’ve also been hampered by bad weather this spring. Heavy snow pack the first two weeks of April after making the March biking goals - and no biking. After a solid week of rain last week, and another solid week predicted, I finally declared this week to be “train in the rain” week, as it’s finally warm enough not to freeze your tail off by riding in the rain. I have to think of the 13 year old who isn’t so hot about the idea in the first place. Forcing her to train extreme distances in the rain may abort the trip before it starts. The training schedule, as set up was as follows:

March 10 miles per week
April 20 miles per week, at least one ride of 10 miles per week
May 1 - 7 30 miles per week, at least one ride of 15 miles
May 8 - 15 40 miles per week, at least one ride of 20 miles
May 16 - 30 50 miles per week, at least one ride of 25 miles per week
June 1 - 7 60 miles per week, at least one ride of 30 miles
June 8 - 25 70 miles per week, at least one ride of 35 miles during week.
June 25 - start same as before, but probably on mountain bikes (bikes shipped)

Because of the Fibromyalgia, I typically start EVERY year of biking with a one mile bike ride. Every year it hurts. This year was no different, except that I added mileage a bit faster. We’ve exceeded the total mileage goals most weeks but have been trashedby the weather others. The goals of long bike rides hasn’t worked into the schedule as well, so it hasn’t been hit. Still, we’ve made the mileage progression smoothly and on schedule until we hit the 50 mile per week goal and the weather went down hill about the same time. So, we haven’t hit the goal for the first week we were supposed to bike 50 miles, (total mileage was instead ZERO!), but I still have some time this week to hit it if it doesn’t pour cats and dogs. Hannah hit 60 miles during her school spring break without breaking a sweat.

Using this training schedule, I have yet to experience a bike ride with major “I-haven’t- exercised-in-ages” after ride pain. Lest you be misled into thinking there was no pain, I have to add the disclaimer that it was only in late May that I didn't have a feeling of being hit by a truck in the first two miles of the ride. That feeling does go away as the ride, and rides, get longer however. I have had a couple of rides where I swore at not having the pain meds with me, however. I also had a couple of longer rides where one day rest between rides was not enough recovery for me. On the flip side, the endorphins seem to kick in a bit easier than they did earlier in the spring, and I feel pretty good for most of the rides these days. I suppose that is related to the training effect.

One other thing that hasn’t happened has been the need to eat large amounts of sugar on a ride to maintain the ride at all. I’ve only used Gatorade on one or two rides, but the rest have been with plain water. Before actually training, if I wanted to go on a long bike ride, I used food on the ride as my energy source, and usually wound up gaining weight from the food and extra fluids in the form of Gatorade.

It will be interesting to see if we really can make the 35 miles per days scheduled for the first couple of weeks. I figure without the dog, commuting anywhere, no phone, it should be easy. Working up to 60+ miles per day may or may not ever happen. We also have a “bail out”plan if it appears obvious that we won’t make it to Virginia by November 1.

My husband Ric has been doing SOME training [hey - my last ride was 56 miles!], but he figures Hannah and I don’t bike as well as he does, so he’s not getting in as much as we are. It will be interesting to see if he has problems. [Actually, I've been surprised at how easy some of the rides felt. Equipment? Knowledge? Less steep hills than Pittsburgh PA and the California coast?]

Fibromyalgia Accommodations

There isn’t much you CAN do on a bike/camping trip in terms of accommodating fibromyalgia, but I have some plans. First, I bought a 2.5 inch Thermarest “luxury” camp mattress pad. I tried it out last weekend, and it was better than my bed, at least for two nights. For the record, on the advice of my chiropractor, I bought a “sleep-number” bed. It helped my back pain tremendously, but isn’t any good for the fibromyalgia. My old Temperpedic was great for the fibromyalgia, but killed my lower back.

I also am taking along a three person tent for two people, so I have a bit of extra room to change without doing contortions. Both of these accommodations are costly in terms of weight of the load, however, so it remains to be seen how well we manage it. One last thing I'm doing is that I made my OWN pillow at home with a "neck roll." I stuffed a 1" fabric tube tightly with pillow stuffing, wrapped it with temperpedic foam from my old bed (yes, I TORE IT APART!), and stitched a pocket for it so it wouldn't shift from the bottom of the pillow. Then I made TWO, lightly stuffed pillows - one that went next to the neck roll, and the other that went UNDER both of those. I use that at night, and a lot of my neck pain has gone away. The bicycle camping version is the neck roll with a stuff sack for extra clothes to make a pillow. It works fairly well, and the only extra weight is the neck roll and stuff sack. It fits in the front left pannier with the tent.

Clothing is ALL lightweight performance fabrics. Silk underwear, coolmax shorts, tops, and biking socks, polar fleece sweater, and one pair of wool socks. Extra silk long johns and wind pants and coat for really cold riding. Ric can help with the tent hauling for the length of time he’s going to be along, and we’re sending Hannah’s tent home with Ric when he goes home. I’ve made my own panniers to have the weight distributed down low so I don’t have to fight for control of the bike. Nothing but the camp mattress will be on the top of the back rack. The loaded bike pic, with me straddling it, is on my main page, up one level.

The June Test Ride

While most of the "test ride" information is on my main page, I found the Fibromyalgia part interesting. I was in a fair amount of pain on Tuesday night, and took one of the Percocets in the evening. No surprises there - we had a tough day. The following morning I WAS sore - limped out of bed - it was the first time we had dragged all that weight any distance - but it was also clear to me after moving around a bit that the quality of the pain was like regular post-exercise pain, and not so much like fibromyalgia pain. Ditto Wednesday morning. Hope for the rest of the ride?


July 3, 2003 - We made it to Astoria! The weather has been wonderful for biking - cool and crisp. The headwinds have been awful. I'm having some pain, more problems with allergies than fibro. I'm cautious on the fibro - start out the day with a flexeril and tylenol, and take more as needed. So far, that's been twice more per day. I've skipped bedtime so far - no problems sleeping! I've bonked a couple of times - yesterday we did three 700 foot hills. By the third one, both Hannah and I were whipped, and I told her it was dangerous to ride when we were losing control of the bikes, so we walked the last 100 vertical feet or so. Smaller hills today, they get big again tomorrow.

July 7, 2003 - We've poked along down the coast. There are a LOT of hills. First thing this morning, we hit the biggest hill we'll do before actually crossing the mountains. We're getting better at it, but it's still slow going. I've been pretty steadily using three tylenol/flexeril combinations per day to control pain, and just yesterday, used the first Percocet for some low back pain. I'm controlling it fine with this, but it's more than I was using just prior to the trip. Allergies haven't been a problem since hitting coast. Expecting them to return soon.

July 16, 2003 - We've made it over McKenzie pass - one of the largest climbs on the Transamerica trail. We go over some higher passes, but starting out at higher elevations. It was tough, but we had built up enough muscles to do it, and I only had one short period of breathlessness over 4000 feet. One thing I've noticed happening is that after a rest period, the feeling of the blood not wanting to go through your veins is happening more often, and it causes momentary pain right after the rest stop. It used to happen most often at the beginning of the ride and last for several miles. Now it happens after ANY rest, but goes away much more quickly. Never-the-less, the choice has been between taking a needed rest and putting up with the start-up pain, or grinding through without the rest stops. Not easy choices.

One interesting thing I thought was that I assumed after kayacking yesterday, my arms would be killing me since they aren't the usual muscles we've been exercising. I did have some nasty pain and quit paddling for a bit in the kayak, but it soon went away just as it does on the bike, and I started paddling again without pain. My arms don't have post-exercise soreness today either. I can't explain that.

One complicating factor in making the decision on whether to rest or not on the road has been that my back side was increasingly painful. When we hit that nice, flat Willamette Valley, I was to the point of having to stop every mile or two to get my behind off the seat. In what should have been an easy respite from the mountains, I was miserable. After the first 1/2 day of flat biking and slow progress, I started treating it with the anti-inflammatories and take the Percocets to sit on the bike for any length of time. I'd start the morning with a double dose of Advil, and a Tylenol and Flexeril, and usually wind up taking the Percocets by 1:00 in the afternoon to get through the rest of the day. One day we biked late, and I took a second one. Note: if you think Percocets automatically make you "high" or "out of it," when you're exercising this much, it just doesn't happen. The best I got was longer distances between having to stop for painful tail.) Then I'd switch back to heavy doses of Advil for the night to relieve the inflammation. I bought a gel bike seat pad to put OVER my $100 Terry gel pad. (Note: this proves that price has NOTHING to do with how comfortable a seat actually is - don't be sucked in by price, try it out before buying.) At any rate, the gel pad advertised a "deep" groove in the middle to relieve pressure, but I thought it was a "wide" groove. After riding it ten miles to the campsite out of Corvalis, I ripped the thing straight down the groove, cut out a pie shaped wedge, and stitched it back together so my pelvic bones would actually SIT on the gel. A couple of days of that with the Advil and pain killers, and it's getting better. A few days off in Bend won't hurt the healing process much either. I sent for my old bike seat, but gave the house sitter Doug's old address, so it may not arrive. This will do unless I find a decent seat along the way.

You have to remember that a lot of bikers have the problems with sore tails, not just folks with Fibromyalgia - we've gotten in several discussion with some of the bikers we've run into about saddles, and how to deal with the bad ones. It's a small club of folks along the trail, and we obviously stop and talk to one another - the subject is a natural, I expect especially at the beginning of the trip.

July 26, 2003, Mile 736 - Well, I'm making progress on some things. The sore seat is gone, thanks to a new (used) O-2 saddle given to me by my sister-in-law, Cheryl. That's the model name, not the brand, but I expect you can find it just the same. According to her, all of her female bike friends use them. She lives in Bend, and is serious about her biking, so she would know. I have a bit of soreness in different places as a matter of breaking it in, but it's no longer a matter of taking the percocets to get through a flat ride. I also finished the anti-inflammatories at their house during our six day lay over. I replaced those with good french wine for the interim. Now it's back to reality and the road, where almost nothing but water or gatorade will do the trick in the liquid department.

I'm finding that on a normal day with no major uphills (which hasn't been the last couple of days. . . . ), I generally take either a tylenol or percocet in late afternoon with a flexeril, and another one (tylenol, usually) at bedtime. On major uphills, I generally take an extra percocet about 1000 feet up the climb, which is about the time I figure out that I'm not just tired, but in pain. That gets me through the rest of the uphill. Yesterday, we did two 1000 foot climbs, with a rainstorm stopping our progress for an hour or so in the middle of the second pass. I needed an extra percocet to get the rest of the way up. Most folks think that taking that strong of a pain killer will make you "high." When you're exercising as hard as we are, I don't notice ANY mental effect. There is no sudden pain relief either, but a gradual lessening of the pain until you're at the top. I suspect that no one will ever get to the point where uphill climbs don't hurt at ALL. My goal is to keep the climbs from setting off triggers for a major flare despite the pain. With two days of climbing over 2000 feet back to back, I got up with more than the usual amount of stiffness this morning, however. A rest day is a good thing.

Speaking of the top, I'll mention that pain-wise, the down hills are just about as difficult as the uphills on the neck. You're crouched down with your hands on the drop bars, holding your neck back at an unnatural angle. My neck is chronically stiff anyway, and I often wish for my chiropractor about 1/2 way down the hill.

Another issue that's come and gone has been numbness in the ball of my right foot, with cramps shooting up my right leg. I started the ride with some old Spenco shoe cushions, which I replaced the other day with ones that have a small arch built into them. Don't ask me what the arch does for the numbness coming from pedaling, but it's gone, and the cramps in my right leg have also disappeared.

Dateline, August 7, 2003, Odometer - 1100+.

A lot has been going on in the fibromyalgia area. My new O-2 seat felt better for a while, but now I've got pain back in the sitting area - in a slightly different place than with the old saddle - whereas the old pain was further back, this is right on the bones between my legs While in Missoula today on layover (we can't find a car to rent to get to Yellowstone), I tested four different saddles, and concluded that I was in a bit too much pain to make a reasonable decision. I'll visit at least one more bike shop tomorrow before leaving.

The fibromyalgia has been showing itself lately, in a variety of other ways. Once we left Bend, we cycled through eastern Oregon and Idaho. Eastern Oregon was virtually all desert, and it was HOT. We pulled into Mitchell with over 100 degree temps, cycled in that heat for two days, had a break, and then dealt with the longest stretch in Idaho history of temps regularly over 100 as we cycled into Hell's Canyon and Salmon River Canyon. In between the miserable heat of eastern Oregon and Idaho, we had a couple of days relief and rest in Baker City, Oregon. Still, by the time we climbed out of Hell's Canyon, I was beat, and looking forward to the next rest day in Grangeville, Idaho. Unfortunately, we hit the heat of the Salmon River canyon before I could get that rest day. It was enough to do me in. We had about 8 miles to bike before hitting the bottom of the Salmon River Canyon, it was Friday, and we realized that if we took a break at the bottom, the next day was Saturday, and we would miss our resupply box climbing out. We opted to hitch a ride out of the canyon on Friday. Once we reached the hotel in Grangeville around noon on Friday, I was so wiped out, I slept all afternoon. Even taking Saturday off as well didn't do the trick in catching up on rest, and my fibromyalgia was letting me know it as well. Hannah was sure I was the biggest witch no the planet as well, because I yelled at her. I was NOT a happy camper, so she had some reason to feel picked upon. On the other hand, she was taking the opportunities to passively protest by taking longer and longer times to get ready to bike after breaks, and in the heat, I really wasn't in the mood for it.

My solution to the fibro flare was similar to when I flare at home, but geared for the trip. I finally told Ric that I needed to back off on the mileage for a bit to recover from the heat. After leaving Grangeville, we took it easy for the day, only biking about 45 miles, most of that downhill. The following day, we took it it easy as well, and the day after that I was feeling well enough that we tackled the rest of Lolo Pass in the afternoon. I'm still feeling tired, my muscles are cranky, and my butt hurts like hell, but I'm functioning enough to drive to Yellowstone if we get a car, or bike slowly if we don't.

Another complication of the meltdown was an allergy attack. My diet had been getting steadily worse, as the resupply box didn't arrive in Grangeville, and I'm frankly getting sick of hash browns as a substitute for bread with breakfast. Heat exhaustion, using too much wheat, combined with some smoke in the air from wild fires going into Grangeville also caused a major allergy attack. I brought out all three inhalers, in order - the albuterol. the seravent, and the steroid stuff. I stayed on the steroid inhaler until the attack subsided toward the top of Lolo Pass. I also happened to pick up some Vaseline Intensive Care lotion in Grangeville for my dry, sunexposed skin, and neglected to read the ingredient list. The first night in Grangeville, I needed two benadryls to get to sleep because of the itching. Hannah read the ingredient list the following day, and we discovered that it had eucalyptus oil in it, which I'm violently allergic to. I gave her the rest of the bottle, and treated myself to some expensive lotion from one of those boutique body shops in Missoula today.

Probably also contributing to the Fibro flare was a wheat binge. I got back on the "no wheat" rule for a couple of days out of Grangeville, and have been better about it at least until today - had a bagel for breakfast.

One depressing part of the bike ride is that I'm GAINING weight. I've put on about 5 lbs since Bend, probably from all the sugar I'm buying to get over the passes. We've had I think five days of over 2000 feet of climbing, and I get extremely tired and can't make it unless I have sugar and salt on the way up. With limited choices in these small towns, that's meant Payday candy bars and Gatorade. Need to keep the resupply boxes coming more regularly, so I have my homemade fruit leather, and get back to water. Ric and I have discovered that V-8 juice has ooodles of salt and potassium and it's a LOT fewer calories than major gatorade, so we use it to recover from the big climbs if we can find it. There is only one major pass left on the way to Great Falls, so maybe I can reverse the weight gain.

All of the above said, the biking is getting better. We're averaging more miles per day, although the totals are creeping up slowly. We didn't have ANY 45 day miles at the beginning, and now I can do one that includes a major climb. We've done 60, but it was tough. Coming into Missoula was the first day we've had on the trip with the prevailing winds, the terrain, and the weather all in our favor, and we sailed into town with an average speed well above our other days - over 11 mph. Compared to our first few days where the averages were 5 - 6 mph getting used to the hills, that's pretty good.

Dateline, August 11. Still in Missoula, after a car trip 600+ round trip miles to Yellowstone. We head out tomorrow for Great Falls, where Ric and Hannah leave and I continue on by myself.

It doesn't take a whole lot of miles in a car to remember that you have Fibromyalgia! I was a bit creaky on the trip, and still am somewhat, but I was pleasantly surprised to find that walking around Yellowstone was much easier now that I've got some leg muscles - so it does pay to exercise. My allergies have been the major problem recently, and I tossed a few comments on my main page about those. Yellowstone is an interesting place to visit if you have asthma. I've almost given up taking the usual Flexeril and Tylenol w/ Cod. at bedtime, but I've had to take two Benadryl instead a couple of nights recently. itch, itch, scratch, scratch. . . . . I also picked up a new bike seat, so we'll try model #3 for the trip, and about #6 for the biking year. . . . yikes, how could Ric and Hannah be pefectly COMFORTABLE on their seats? I get the idea that if I can get comfortable on a seat, I can easily pick up 10 miles a day just from that! The wheat free/dairy free diet is simply not working - can't consistently get supplies, and my appetite has been for a fair amount of food - also I'm sick to death of hash browns. But I'm better about not cheating on all of it at once! And I'm better about not having too many calories total. Ric didn't think an ice cream sundae was a good idea for dinner, but calorie wise, I wanted it, and didn't need the ice cream on top of the dinner calories. I do that about one time a year, anyway. Tonight, we're going to enjoy the Thai restaurant in town. Let's see if I do better on my diet and pacing once Ric and Hannah are off the trip. They'll fly home from Great Falls next Monday, and then I'll be on my own.

Dateline August 27- The best and the worst

Ric and Hannah have been gone over a week, and my physical resources have been sorely challenged in that time. The day they left, I biked to Ft. Benton, which is the furthest upstream that is navigable, and used to be a huge port for goods going west until the railroads came through. It was in the Missouri River canyon. I camped out at an RV park right by the county fairground. During the night, the wind picked up so much I had to put on the rain fly to keep the tent standing. There was evidence that it might storm, but it never did. Lots of wood smoke smell coming from the west. At any rate, I didn't get a great night's sleep there, and haven't slept well since then most nights, and it's beginning to take its toll on the fibromyalgia.

Getting around Ft. Peck Lake (which was made by Ft. Peck dam back in the 30s) is no easy feat out here. It's dry as a bone, and there was a 100 mile stretch with absolutely no food or water. Preparing for that, and getting through it has me whipped at the moment, mentally and physically. I did OK about three days after Ft. Benton (last Saturday) when I woke to find a strong tailwind. I was pretty tired that morning, and only planned to bike 30 or so miles from Grass Range to Winnett. The tailwind was so good, I made it in two hours, and decided to keep going to Sand Springs another 50 or so miles down the road. When I got to Sand Springs, there was nothing but a convenience store run by an 80ish woman. The camping was behind the store. So I decided to keep going to Jordan. I got to Jordan, and made my my first "century" ride by about 7:00.

The problem with that was that the next stretch was the 100 mile stretch without food or water. I knew I was whipped, so I decided to avoid the heat, I'd leave Jordan the next day late in the day, bike about 30 miles, get up early and bike to Ft. Peck. That minimized water usage at the beginning of the stretch.

The best laid plans can go horribly wrong, however. The 30 miles was OK. I had to camp along the side of the road in this desert/badland area, and I wasn't too thrilled about it, but I gritted my teeth and just did it. I was right outside a sheep ranch, and was visited by a bobcat that night, and the winds picked up suddenly about midnight, causing me to toss on the rainfly AGAIN in the middle of the night. I rose about 5:00 and was ready to roll around 6:00 a.m.

I knew when I only made ten miles by 9:00 to the turn north on Route 24 I was in trouble. The terrain showed no major elevation gain or loss, but it was a series of steep hills. I didn't go any three mile stretch the entire day that I wasn't climbing a nasty hill for at least half of it. To make matters worse, when I turned north I had a killer headwind. Montana papers bemoaned the winds whipping the fires up the next morning, so they were bad. I arrived in Ft. Peck around 7:00 - 13 hours on the road, and I was exhausted. The only place to stay was the Ft. Peck hotel, so I grabbed a room, a shower, and had a nice dinner.

The guests and management at Ft. Peck kept telling me NOT to stay in certain towns in the Ft. Peck Indian reservation, and urged me not to camp anywhere in it - that's another 80 or so mile stretch before I leave Montana. I was beat the next day, but managed to make it to Nashua, Mt. in another stiff headwind out of the east. There was camping in the town park there. After another night without much sleep, I broke camp and biked to Wolf Point, where I am now.

At the moment, my fibromyalgia seems in full flare - too many miles, too little sleep, and hard riding have just about beaten me mentally and physically. On the other hand, a few things have happened that have been good. On that nasty hilly day on the way to Ft. Peck, I realized in the middle of it that going up hills did not physically hurt any more. I think that's why I was able to do the long days I did. I can't remember when it stopped hurting going up every hill, but it's been since Ft. Benton.

That's the good news - on the other hand, if you have to do an 1800 mile bike ride to get it to stop hurting going up hills, that's a VERY long way to go to get the job done. The bad news is that since I'm so exhausted today, the hills are hurting again. Maybe sleep will helpt that.

Being kicked off the computer. . . .

Dateline August 30 - Williston, ND, Odometer - 1900+

Not much else to say except that I woke up two days ago with a sinus infection on top of everything else. I started some antibiotics I have, and it's getting better. I thought I had a pretty easy day getting to Williston yesterday, but I forgot about the 25 mile side trip to the confluence of the Missouri and Yellowstone rivers. Looks just about like when Lewis and Clark saw it. Rest day today. I'm dragging, and the fibro is still in flare a bit.

Dateline September 3, Garrison, ND, Odometer 2000+

Things have settled down a bit on the fibro side. I'm feeling better, but not at peak form by any stretch. I did 75 miles in a tailwind yesterday, but it wasn't directly behind me, and I had to work to keep the wheels on the road some. The sinus infection is much better. There are TWO chiropractors in this town, and I'm debating on whether or not I should stop in an get an adjustment. I don't have all that far to go today - about 30 miles.

Dateline September 13, 2003, Hawley, MN Odometer 2500+

The fibromyalgia has been nagging for some time now. About a week ago, I realized I was out of Effexor, and ordered some from the pharmacy last Saturday. To make sure it gets to me, I sent it pretty far ahead. Because I fought headwinds ALL the way across North Dakota, I'm not there yet, and will pick it up this week sometime. Hopefully that will make the difference.

Last Wednesday was the worst day of biking on the trip. The weather forecast said winds out of SE at 10-20. That was how the day started, but they quickly picked up until I was fighting gale force winds, and working really hard to keep the bike on the road. I barely made thirty miles, and was in massive pain by the time I got to Hope, ND. I actually rode around town for about 1/2 hour, checking out the town camp site, because I was just about in tears from the pain. No hotel, so I stopped into the local bar first for a drink - only the second time I've bothered to stop in a bar. (The other was in a town in Montana where it was the only source of food, bathroom, and liquid of any sort.)

Anyway, I ordered a Margarita. The somewhat matronly bartender looked at me aghast and said, "I don't make Margaritas." So, keeping in mind that just smelling beer make my allergies worse these days, I ordered a rum and coke. The town farmers were in the bar taking a break from combining because of the high winds, and it was getting pretty rowdy in there. After finishing that, I left to go next door to the cafe for a late lunch. By the time I finished lunch, I was really feeling much better and went to the town park to set up the tent. It was conveniently located next to the town pool, (and across from the school), which was supposed to be the source of shower and water, but of course it was closed for the season. When I woke up in the morning, kind of late because I was so beat, I figured they'd be happy to let me use the school bathroom rather than have the kiddies watch my morning routine while getting off the bus. I had no problems doing that. Breakfast in the cafe, and I was on the road with diminished, but still constant SE headwinds. They literally did not abate until I crossed the Red River into Minnesota. Woke up this morning to find the flag in front of Perkins blowing blessedly TOWARD the southeast. It's breezy today, but much easier biking. My legs are constantly bothering me, which they weren't out of Great Falls, and the hills are hurting again, so I'm anxious to see how I feel once I start the Effexor again.

One thing I also picked up in Fargo was another antihistimine. I figured that so many of them are over the counter these days, and the Allegra isn't doing much of anything, so I tried another one. My nose isn't running quite so badly as it was. It's definitely worse in the cooler, windier weather. Or maybe I'm getting back into the eastern allergy triggers.

Dateline September 18, Odometer 2700+

I picked up the Effexor the other day, and I seem to be doing a little bit better. That's the good news. My knees hurt, so I know it's time to end this soon, however. Rest day today, headwinds yesterday, rain today.

Dateline May 5, 2004, Odometer 3360 final

Well it seems as though I gave up on updating this page. There actually is a great deal to talk about. As good as I felt when the bike ride ended in October, the winter was a huge disappointment. I also fight seasonal affective disorder, which may or may not be a part of the fibromyalgia. The bike ride had no effect on that - I was losing energy in October before the bike ride ended. I had two or three days in a row where I could barely make 40 miles that last week.

One unexpected effect was that when I got home, my lower back pain came back about immediately. I sprung for the THIRD mattress in just about as many years - a regular box spring. A month or so later, in massive pain, I went over to Sam's Club and picked up their 3" memory foam mattress topper. That combination seems to work the best for me, but it isn't as good as the old 2 1/2" Thermarest with biking all day.

The Seasonal Affective Disorder sapped my energy just as well this winter as it did last winter - I slept up to 13 hours a day, started to feel badly. I gained back all that I lost, and then some, although folks say I don't look it. I did do a bit of swimming once January rolled around, but overall my winter was unexpectedly bad. I thought the long term benefits of the bike ride would be that my fibromyalgia would be better, and that my drug usage would go down for at least an extended period of time. That didn't happen. I also found out this winter that my "cellulitis" in my toe was really "chilblains," which is a long term recurring effect of an old frostbite injury. So my winter exercise stopped almost completely when I had to stop walking the dog in January's cold snap.

Just when I was looking forward to getting on the bike again around April, and opportunity came up this spring for volunteer work that I just couldn't pass up. So, I'm working my tail off for hours at a time again - in the office. The hours are starting to take their toll, and I'm again seeing my pain med usage go up. I finally got organized to start a diet, which will help. I always feel better when I'm eating right.

I did finally get out for a longer bike ride last weekend. I was't surprised at the fact that I made it 14 miles on the second bike ride of the year, but I was surprised at how good I felt afterward, and for the next day or so.

If I had to say any one thing about the overall experience, it would be to go for it, but use your head. I didn't push to get all the way across the US, as I'm sure most folks withour fibromyalgia could have done in the amount of time I took. I knew when it was time to stop.

With respect to the long term benefits, I'd also say that my doctor laughed at me in December when I told him I was REALLY hoping and expecting the fibro to get that much better. Don't expect too much. The fibro will not go away. I can't reasonably expect to have the time or the money to devote to this kind of trip again until we retire. We have a kid to educate first. I'm definitely planning on doing more bike touring. I just have to be realistic on what I can do. Those loaded group tours where everyone is expected to make 60 miles per day from the start are probably not for me. Luckily, I have a husband who is willing to put up with my snail's pace at the beginning.

If it's at all possible, I'd encourage everyone with fibromyalgia to keep up on the exercise. If you want a major challenge like a cross country bike ride, go for it. It really does help in the long run. I did have long term benefits, just not the ones I expected. I still have to carefully watch my health, my exercise, and plan my winters around my decreased energy level. My overall level of fitness is better, and I can do more exercise when I could before the ride. Being able to go further, I get more benefits in the form of endorphins when I do exercise. If I keep it up, I imagine that I'd feel a LOT better overall. I can now say that I'm sure I'll never be able to work full time, because if nothing else, I'll have to keep time for exercise. Either way, I get about the same amount of work done. Without exercise, I just feel rotten for more of the time. For today, I just need to get back to work. . . . the usual dilemma.

Major Footnote

August, 2006

    I just read a very interesting article in Science News concerning opiates and Fibromyalgia. "Origins of Ache", August 19, 2006.   It basically confirms what I say here about painkillers so far as their effect on me, but I now realize that my experience with pain killers probably doesn't apply to the general population.  

    The article basically says that based on studies of people with fibromyalgia, that it is possible that the cellular structure actually doesn't allow opioids to bind to the structure.  While more research needs to be done, it also provides an opportunity for more research into the development of novel pain relievers.  Hooray!    It's complicated, but there is a shortage of interleukin-4 and interleukin-10, both anti-inflammatory cytokines.   From the article, "Some research has suggested that interleukin-4 regulates cells' capacity to display receptors for morphine, codeine, or other opioids."   I might be wrong, but I think that means that if you have a shortage of interleukin-4, your body reacts differently to opioids than normal people.  That might explain how I can bike, hike, and drive with Tylenol 3, 4, or even Percocet in my system with no major mental impairment, and unfortunately why I don't get complete pain relief even with strong opioids.  I can't take N-saids on a regular basis because they rip up my stomach to the point of doubling over in pain in less than a week.  I do occasionally take them for short periods of time if there is obvious inflammation.   I was talking to my husband last night about the article, and he said it also explains why I was such an unhappy camper after my c-section and knee surgery in 1999 - major pain basically unrelieved by what they were giving me.  

    Following Hannah's birth, but before I was diagnosed with Fibromyalgia,  I fired my doctor in a fit of anger the last day in the hospital after he changed me from Tylenol-3 to plain Tylenol the last night in the hospital without discussing it with me - I was up all night with completely unrelieved pain, and had to take Hannah home that morning absolutely exhausted.  I had spoken to him before she was born about the fact that I heard his practice was known for giving inadequate pain relief following c-sectioins, and he had assured me that this was absolutely not true.  Then he pulled the Tylenol 3 without telling me.  Even though I hadn't been to law school yet, those lawyer genes kicked in - I absolutely refused to pay him his 20% co-pay, and with good reason.  He didn't discuss the change with me, and the nurses refused to call him in the middle of the night when the plain Tylenol was doing nothing for me.  He never attempted to collect it. 

As far as taking opioids for pain relief and expecting to be able to function,  I would say "DON'T TRY THIS" without knowing how opioids affect you.   

And now I'm patiently waiting for the research to come up with pain relievers that work on those with fibromyalgia.  Perhaps if they can figure out how to change the shortage of interleukin-4 and interleukin-10  in people with fibromyalgia, there might even be a cure on the horizon.   One can hope.

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Last updated 2006  August 27.