Blog Classic: Mar. 30, 2010
When you have an illness like fibromyalgia or chronic fatigue syndrome, you can never be too prepared -- I know this, yet I keep finding new situations for which I'm not prepared.
Here's the latest one: I was driving down a residential road a few days ago, when 2 large dogs ran into the street right in front of me. I slammed on the brakes hard enough to send my purse flying onto the floor, and stopped just a few feet short of hitting the dogs. Crisis averted? Not entirely.
A minute or so later, my neck muscles started to tighten up. Then the tension, and the pain that came with it, moved gradually down my back, eventually reaching my hips. Both wrists started to ache, as did my right ankle. I didn't have a panic attack, fortunately, but my heart wouldn't stop pounding, I got nauseous, a little dizzy, and I had a nasty, bitter taste in my mouth that always seems to follow a burst of stress hormones.
I was home within 20 minutes, but by then I was almost in tears. Getting from the car to the couch (with a brief stop at the medicine cabinet) was excruciating. I was out of commission for the rest of that day, and it took a few days to fully recover.
That's a pretty normal response for someone with these conditions -- our muscles don't take well to being jerked, and our disordered stress-response systems completely over-react to that kind of situation. Eventually, I hope to be recovered enough that my body doesn't react that way, but in the short term I can't stop it from happening any more than I can prevent dogs (or kids, or other cars) from darting in front of me.
It got me thinking about what would happen if I was farther from home. While I don't take long car trips by myself anymore, a few times a year I do drive 45 minutes to an hour away to visit relatives -- usually with my kids. I started thinking about what I could do to mitigate the impact of something like that, if I was farther away from my destination. Here's what I came up with:
- Stop and rest as soon as possible,
- Have my de-stressing supplements on hand (theanine and DHEA are the ones that work for me),
- Keep pain creams and/or disposable ThermaCare-type heat wraps in the car,
- Carry non-narcotic pain meds (NSAIDs or acetaminophen) that it's OK to take while driving.
There's a lot of other things you might want to consider keeping in your car, depending on your symptoms. For some ideas, see Being Prepared in the Car With Fibromyalgia & Chronic Fatigue Syndrome.
Do you try to be prepared for things like this? What works for you? What bad experiences have you had? Leave your comments below!
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Not being able to drive long distances has been one of the most inconvenient aspects of fibro for me.
Prevention is always the best medicine but as you unfortunately found out, not everything can be prevented!
The immediate coping technique I use is a meditation process to put the brakes on the adrenaline surge (that’s what left that nasty taste in your mouth) consisting of a pranayama (breathing) technique – alternate nostril breathing.
Of course, that only works when the hands are free, and ever since I was forced to drive a stick shift the hands are most definitely never free when driving!
There’s a massaging car chair pad that plugs into the cigarette lighter that I’d love to try, too.
My wife’s biggest concern with driving with fibro is the dreaded fibro fog, she’s often felt like she’s fallen asleep at the wheel. As far as pain goes, it’s a bad for her being a passenger. After the 8 hour drive to visit relatives, she needs at least a day to recover.
I find on long trips (more than 45 minutes) I need to get out of the car at least hourly, stretch, have a little walk, and refresh.
I’m also scared of fibrofog. A couple of times I have been driving somewhere completely routine, like taking the kids to school, and realise that – just for a split-second – I don’t know the way I need to turn at an intersection. Scary.
After a two-hour trip I need at least the rest of the day of recover, being very quiet. Any longer than that, and I’ll be in pain the following day too and probably need to rest then as well.
Since I have been on disability for so long due to CFS, I am somewhat poor and drive a 22-year-old car which I keep together with spit and chewing gum. I live in the Phoenix area, so a breakdown in the summer, as sick as I am, would just about do me in. Therefore, in preparation for a breakdown, I always take plenty of water with me and my medications. I also bought a prepaid-card cell phone (runs about $8/mo. – $95 yearly with tax) to carry with me when I drive so I can call a tow truck. Also, plenty of cash for cabs.
Ouch! Thanks for sharing. I think it is hard to recover from those shocks sometimes because of our tendency to have low cortisol & therefore slower recovery. I think every fibro & cfs patient should have their blood cortisol level checked by their doctor. Mine was extremely low and since being on Prednisone to replace my low cortisol, I recover much faster. If I have a stressful situation or illness, I am supposed to double the dose for a few days. It works great and I have been cold free since starting and no side effects since it is low dose and only replaces what my body does not make on its own.
I have almost quit driving. My husband has had to retire also so now I make him do most of the driving. Which before the fibro I did all the driving. We had to make an emergency trip to Nashville which is a 4 hour drive for us. After spending 3 days at the hospital with his brother who passed away on the 3rd day I crashed on the 4th day. Then of course we had the funeral to get thru which didnt happen until 3 days later waiting on other family to get there. So I handled it all pretty good until we started home. I had to drive a car by myself due to his brother leaving his car to my husband. That was the worse trip in my life driving from Nashville to Knoxville. I hope I never have to do a trip by myself in a car again. We will be going to Camp LeJeune in August to see our grandson hopefully come home from Afghanistan. That one I am going to be a lot better prepaired for. You cant always prepair for long trips when emergencies come up.
I was a long haul truck driver for 33 years and I have had to retire from it because I pass out from time to time. I am older so I have the added issue of sever arthritis in my spine and joints.
I found that one of the best ways to prevent the panic of brain fog when you are driving is to always have detailed written directions to and from where you are going. Even the directions to and from very familiar places. I have made printed out directions using right and left rather than north/south/east/west from my home to the various places that I have to go. That helps to prevent panic attacks when you are having a “fog” episode and ultimately the adrenaline rush from the panic.
Since it is a 45 minute drive to the nearest town, and I live in a cold climate, I not only carry water and non-narcotic pain meds with me I also carry a warm blanket and a pillow. That way if I have to pull over on the shoulder of the highway, or into a public parking lot, I can take the time I need to relax and get back on an even keel.
A year ago this month, I had a vasovagal response to an abdominal cramp while driving. The Vagus nerve is the longest cranial nerve, and apparently controls things like blood vessel dilation and your digestion. What happens is that you faint or go into a near faint (which thank goodness is what happened with me) – tunnel vision, loud buzzing in the ears, dizziness. I ended up in the ER that time having pulled into a grocery store parking lot and calling 911. I had had 4 episodes previously in my late teens and early twenties, but didn’t know what had caused them. I now know that no matter what – if I start having the symptoms (the buzzing usually starts first), I need to pull off the road and lie down (I drove 5 miles on the highway and through a school zone before pulling off and calling 911). It usually passes very quickly if I lie down. My doctor said my nerves are sensitized, and it’s all related to the FM. Wow, this stuff is scary!
I have been in so many scary situations because of fibro, and have also experienced those simple things that throw our bodies into a flare up. I always have water, my meds, heat packs, a towel roll, some snacks, and lavender scented lotion. I don’t travel light.
Plus, if I have a stressful event, I find it incredibly helpful to call my husband and tell him about it immediately. It helps calm me and gets me outside of my own thoughts (I always replay, relive, and recap stressful things and 2nd guess myself, and those things don’t help the body’s stress response at all). Take care!
Hi, like with everyone else with fibromyalgia, you never know what is in store for you until it happens. I live in the country, a full hour and a half away from my children and prior to being diagnosed with this condition I used to visit or stay with them once or twice a month to help out with their growing families. Now, its a different story, I can’t drive the distance due to fatigue at the wheel and almost having accidents due to “nodding off.” It doesn’t matter if I am the driver or passenger, its like an uncontrollable reaction of sitting in a vehicle. The more I try and fight it the worse I feel. I am unable to concentrate, get headaches, unable to focus on anything and it is downright embarrasing. Does anyone else have the same effect? I can’t drive any more than 20 minutes to half an hour. In relation to the back heat and massager, it is fantastic. Since I suffered from a back injury, 12 years ago, I have used this back support and I highly recommend it to anyone who has back problems.
Dena,
Yes, I have “nodded off” while driving — luckily in 4 way stop traffic situations, so only a fender bender, but still not good. I was on thyroid meds for low thyroid function, but still very much undermedicated during those times. I also am pretty sure that poorly functioning adrenals and low cortisol play a big part in the “sleeping in the car” syndrome. I had been that way since I was a teen, and luckily my husband prefers to be at the wheel. On one trip to my daughter’s (3 hours) on my own, I stopped 4 or 5 times to “wake up” — drowsy as soon as the vehicle moves again. The upside is that after a family visit at several hours distance, I am able to sleep and partially recover on the drive home.
PS I also fell asleep TWICE standing up in church!
In addition to lots of water and my meds, I carry 2-3 beach towels. They make handy bibs and wipes after drive-thru food window dining, but they’re great to roll/fold for lumbar or neck support and they’re always ready as a pillow or blankie if I need a mid-trip snooze.
I also use a teddy bear under each arm for support. It raises my arms just enough to take tension off my shoulders. I can also stand them on their heads and stuff them under an armpit if I need even more support. Also, driving using them as armrests allows me to twiddle their toes which is also comforting.
I, too, write down directions turn-by-turn in addition to any stops I need to make. I’ve gotten lost on my way to the place I’d worked 20 years, although I’m much better now but still blank briefly at times.
Keeping a legal pad handy to jot down stray thoughts or landmarks en route to aid memory later.
This is my experience. I had been diagnosed with fibromyalgia after 5 yrs. I was involved in ten car accidents and had mono really bad at age 19, believing this may have sparked the fibromyalgia. I have two children both by c section, not my choice but other medical conditions also occured in which both babies were delievered 6 weeks earlier. At any rate, the fibromyalgia after teh last c section became disabling. I am fully runned with my 3 yr old and now the premie that is home with us. Between poor sleep, diet and the trauma of a major surgery such as a csection, can trigger fibromyalgia. There is also a link to certain genes. But also rule out other medical conditions from your ob/gyn after c section or birth due to hormones and changes, as some things mimic fibromyalgia. Good luck to all of you. I am mental health therapist and run chronic pain groups, so I sometimes have understanding what you are going through.
The final straw for me was when I went to a store about 5 minute from my home. Things had been stressful but I didn’t feel bad (by fibro standards). After I did my shopping I got in the car started it and my hands suddenly cramped up. I’m talking major cramps. I almost called my husband to pick me up but I knew he would have a fit every time I wanted to drive if I did. I managed to make it home in tears plunged my hands in hot water and took a muscle relaxer. Now I’m afraid to drive and feel like an invalid.
Just venting.
Keeping ThermaCare-type heat wraps in the car is genius! I don’t even use those often, but they would be a lot easier to apply when out running errands than a cream would be, due to the cream layer that ends up on my hands. I think I’m going to be asking for some of these for Christmas!
I wish heat packs and supplements were good enough for me. Supplements help my inflammation levels, but rarely put a dent into helping the throbbing pains. I’m glad some of you get relief, though.
Very interesting comments. I learned a long time ago to carry some muscle relaxants in my purse along with ibuprofen, a roll on muscle rub, ear plugs when for when a restaurant is too loud, and peanuts for when I feel hypoglycemia coming on. Isn’t it pathetic how we have to prepare!!! I’m going on a week’s long trip to a rented house and the first thing I prepare with is meds, heated rice socks, heating pads, bengay and a rubber glove to apply it, and my latest purchase, a battery operated heated pad than I can velcroe around my waist and hide with a long blouse or jacket.
Oh yes, another trick I found is carrying a stiff hair brush in the car because a stiff brushing of my head helps stop a muscular headache. I think it opens up the blood vessels. I lady I know who lives in Ireland gets an “Indian Head Massage” and I’m assuming this is the purpose.
Thank you so much for that article and comments. I have learned three things 3 things
1) fibro ‘attack’ after braking fast.
2) Carry therma care heat wraps. (Now I have to find out where they are sold) and finally
3) Earplugs in restaurants. I kept telling my husband that the noise gets to me but he kept on saying: Block it out. I cannot block it out, I HEAR it -
Thanks for sharing.
I will end on a positive note. I have noticed a big difference in pain attacks since I have gone GLUTEN FREE. It has helped so much. Not perfect, but now I do have a few good days a week. It is soooooooooooo different not to feel pain in your body that sometimes, I think it is not ME in this body, lol
Earplugs are great for movie theaters and airplanes too! I noticed you were trying to find the heat wraps – the sell them in stores like Target and pharmacies. If you find out you really like them, they’re also sold at some Costcos.