To drive or not to drive

[icnmgrjill]

One of the most difficult lessons I learned is that driving during an IC flare was just utter stupidity for me. Yes, I could drive around town. That's not what I mean. Driving for MORE than 20 or 30 minutes during an IC flare can be excruciating. If I started out with a mild IC flare, I learned quickly that it would be much worse by the time I got there.... due to the muscle spasms caused by the vibration of the car.

I finally just learned not to get upset about it. If, for example, I was supposed to go to a wedding three hours away... and my IC was flaring that morning.... I finally gave myself permission to stay home. I learned that by ignoring how I was feeling, I was often much worse by the time I got there. Yeah, it was really sad to stay behind... but, ultimately, it was (and is) a healthy decision to make... for me, that is.

Jill :)

[Babs RN]

I'm right there with you Jill, prolonged driving causes me extreme pain. On top of that if I am driving long distances I don't take meds so by the time I get to the destination I am about die. I am also not as strong as you to say no to social occasions, especially my dh's mililtary junk. And there is that 3 year old of mine.....actually my best way to manage a flare is a hot shower, pain meds, comfy pillows and the remote.


Hugs,
Barb :)

[Sarojini]

I just say no to long distance driving when I feel a flare coming on... actually, it's only recently that I've said yes to long distance driving AT ALL. For a while there, I could start out fine but after an hour or two I'd be in a horrible flare from the car -- it would seem like I'd just LOOK at my car and start to flare. However, it's improved now. For long distance stuff, my husband usually drives anyway, so I can take pain meds and/or muscle relaxants as necessary. Occasionally I've also gone into the back seat to lie down. I make sure we stop pretty regularly for potty breaks and for walking around to stretch, too. :)

[tigger_gal]

I have to agree with you, I was invited to a bridal shower that was an hour away... I also had a grand bladder infection happening.. I too stayed home.....
If I am flaring I don't go any where because the car ride makes it a million times worse.
Brat

[ICNDonna]

I know that if I'm in pain, I can't give the road the attention I need to, and if I take pain medications, I know it can slow my reaction times so I'm not safe to be on the road. When we think of driving in a flare, I think it's important to think of the safety of others as well as just ourselves. Not only are we causing extra pain for us, there is the risk of injuring others.

My daughter had a serious accident 15 months ago, when a driver who had taken a medication for a migraine rear-ended her at a stop light --- he was going 40 miles an hour when he jammed her trunk into her back seat. Thankfully, she had no back seat passengers and she was well belted in so she escaped with a whiplash.

With traffic as heavy as it is in most areas, we need to be totally alert when we drive.

Donna

[July]

Well, I guess I'm not alone in having flares when driving in a car or even just riding in a car. When my symptoms first started, I told a dr. this and he just looked at me like I was cuckoo and said he never heard of that problem.

[Sarojini]

No, July, you're not alone... the "car effect" was one of the first things I noticed about my symptoms right before I was officially diagnosed ... I could be at home, sitting on the couch and feeling okay, but then we'd decide to go somewhere and about 15 minutes into the ride I'd have to urinate so badly I was ready to go crazy... and I'd be in horrible pain. One particular time, I remember getting caught in a traffic jam on the way to a fancy dinner out, and being so uncomfortable I was crying and yelling at my husband to get us out of there. I was wearing stockings too, and they were really bothering me and making it worse, and I ended up just ripping them off and throwing them out the car window in a fit of rage at my bladder ;)

I tried going pee before we left each time, but no matter what, this would happen. It was SO bizarre. Luckily I found this site, and I also had doctors who said, "Oh, yes... that's classic IC all right!" Now that I'm being treated I can handle car rides much better. I can actually drive for 30 minutes to an hour without having to stop to pee most of the time!! :) A couple times, I even made it 2 hours, but that's rare.... still, I'm glad I can make it longer than 10 minutes :)

[kelly McC]

I also avoid long trips if I am flaring. For the last few years I've been in some kind of pain or flare and have missed alot of social functions. However I think it's for the best. Dont get me wrong I wish I could go but I have learned if I went feeling bad I would just feel worse when I got there. On the bright side my doctors are working hard and hopefully soon I'll be socializing again . Were getting there.
Kelly

[July]

undefinedThanks for your feedback, Sarojini! How I miss those days when I could get in a car without even a vague thought about my bladder. In fact, I'm working on overcoming a fear that developed of being in a car! I often, with some prayers beforehand, try to "take on" the car to go shopping or run errands. I try to muster up my courage :dizzy:

[Mimi-in-Chicagoland]

I think I have a bladder infection...my first in a year. :woohoo: (who knew that was something to get excited about?) :rolleyes: On Friday I needed to go to the lab to get the culture drawn. I did NOT feel like driving. With my interstim, I normally don't have a problem, but I knew I couldn't do it on Friday. My husband came home early to take me.

In Illinois, you can't drive on narcotic pain killers. By law, you have to wait 24 hours after you take a narcotic to drive. I make sure that anything my doctors give me is something that I can take and still go to school. If you have an accident and are on narcotics, you get your license suspended.

[ad8123]

I have a huge problem even with short rides in the car. I am trying new meds, with a pain Md so I will keep all you said in mind. My Urologist had not heard of the pain from the car thing, I finaly told him, "now you do" in a bit of a clip voice and I think he got the picture. I told him he should come here and read what patients post and the ICA patient Advocate talked to him and it seemed to help. I pray for teleporting!!

[M.C.]

We solved the car problem by buying a travel van. We tried carrying a porta potti in a regular van, but it was awkward having to get out of the front seat & crawl into the back to use the potty, and I did it all the way to Florida from Ontario and back, but hubby said it was stupid so now we drive a travel van and I can just get out of my seat & walk to the back where the potty is stored & use it while we sit on the side of the road. We only live 15 mins from our sons homes, but there were days when I couldn't even get there without having to stop to pee, so now we can travel more often and I don't have to worry! A drastic step, but if I have to live with IC, I would like to still live a little!!

[Cricketmk3]

When you all have a DMSO treatment, and have to hold it in for 20 minutes, do you go home during the 20 minutes or stay at the office? I live very close to my uro and I always go home with the medications still in my bladder. Talk about a miserable drive!!

[M.C.]

What is a DMSO? The only thing I ever seem to get when I go to the Dr's is disbelief or a hassle! I had 2 cysto's & 1 hydrodialation but they were at the hospital and then came home. The first time he sent me home with the catheter in & had to leave it for 24 hrs so homecare was to come next day to remove it. A year later I had the 2nd cysto & the hydro, and was in & out in 4 hrs, but we had to stop 3 times on the way home for me to pee. I hope when I go to see the new Urologist in Nov. that he can offer me some hope which will be more than I've received from anyone so far.

[mayray518]

When I used to get DMSO I would do it on my lunch hour at work and then go lay in my car for 1/2 hr. It was a pain in the ____ but it did help for awhile. I know what you mean about driving. I used to be focusing so much on my bladder that driving was not the best thing to do but I had to work, make dr. appts, etc. I hope you find something M.C. my saving grace was elavil.

[Jean12]

When I have a DMSO treatment I take pain meds before I go to the dr. I live about 40 min. away from my uro., but my parents live about 10 so I go directly to their house where I pace in agony until I can't stand it any longer. I can usually hold it for about 15 min. Then I lay down at my parent's house until I feel I can drive safely. If the pain is too bad, I stay there until hubby can come and get me after work. It's a pain for him to have to leave work and drive an hour to come and get me, but sometimes it's the only thing to do.

As for long trips, I avoid them if at all possible while flaring. Even short trips when flaring can be a disaster. I travel at all times with a bedpan in the van. I also carry those blue pads that they use in the hospital, a bottle of water for cleaning if necessary, adult diapers, baby wipes and a change of clothing. I also have a sheet or blanket to keep me covered. Between the Irritable Bowel and the IC I've used my little kit more than once on the road. Very embarrassing but necessary for travel.

[Cricketmk3]

DMSO stands for Dimethyl Sulphoxide which is injected into your bladder via a catheter. You have to hold it in for at least 20 minutes and it is very painful for me. It's a "cocktail" of anti-inflammatory, analgesic, muscle relaxant, mast cell stimulator, and collagen dissolution (info obtained on this site). It makes you stink like garlic for a day or so afterwards. I don't have to have them anymore. I take Elmiron and Paxil. I've had less pain since I've been taking the Paxil. I also take Prelief before I eat or drink anything questionable.

[Myli]

I'm sure that DMSO is mentioned as a treatment option on this site. (If I can trust my memory... :yikes: ) It is a liquid that is introduced to the bladder through a catheter. I receive them once a month now, was more frequent in the beginning. I can't recall what DMSO stands for, but it is meant to reduce inflamation.

Most months, I am able to drive home and hold the solution up to two hours or more. Sometimes, I can't hold it at all. I am very lucky. So many here are going through hell on earth. By comparison, I would rate my IC as a 3 on a scale of 1 - 10, with occasional flares reaching a 10.

Even so, I very much resent the restrictions that IC has imposed on my life. I keep reminding myself that there was a time when urinating did not cause pain, really, it didn't, hard as that is to believe now.

/hugs,
Myli

[M.C.]

Still don't know what DMSO is? Help someone!! Many thanks. Being able to message & hear others with the same problem has really helped me cope because I sometimes feel I'm the only one on the face of the earth trying to cope with this. Everything became worse when I started having severe pain thru the day as well as at night. The evening & nite stuff I could cope with, but the daytimes, unbearable, so I had to take a medical leave. That was one of the hardest things to do. Admit I was ill enough to have to stay home, then I really felt alone, but this site has been wonderful, even if I didn't join in. Just to read everyone's stuff & know there's others just like me. Thanks everyone.

[Sarojini]

As mentioned, DMSO stands for Dimethyl Sulfoxide. It is an organic solvent that is a by-product of the wood pulp industry. It has many uses. In the laboratory setting, for example, it has many uses -- one is during "cryopreservation" (freezing) of cells, sperm, etc for later use. What it does in this case is that it prevents ice crystals from forming in the cells during the freezing process, which is a good thing, because ice crystals can "pop" cells wide open and destroy them. Using DMSO in freezing greatly reduces this and leads to a higher number of viable, or live, cells after later thawing.

However, in the middle of the 20th century (like, I think, the 1950s-1970s), DMSO was discovered to have anti-inflammatory properties as well. Dr. Stanley Jacob, in particular, was a proponent of this use of DMSO and still maintains a website devoted to the compound at http://www.dmso.org if you're interested. Anyway, since IC was thought to be a chronic inflammation of the bladder, doctors decided to try instilling DMSO into IC bladders via catheter to see if they could reduce the inflammation and alleviate the IC symptoms. Depending on what literature you read, you will see that this treatment is successful in 30-70 percent of cases.

DMSO treatment is still used for IC today and is one of two FDA approved treatments specifically for IC. DMSO is usually instilled in the bladder via catheter in the urologist's office. It may be injected as simply a 50% DMSO solution, or it can be mixed up in a cocktail of various other agents, including steroids, anesthetics, and sodium bicarbonate. Regardless, the patient is usually instructed to hold the solution in the bladder for 15 minutes to one hour, depending on the urologist, and then urinates the solution out. Side effects include a garlicky odor to the body and breath, as the compound is excreted through the lungs. Generally, patients receive 6-8 weekly treatments to start and then are often either put on a monthly "maintenance" schedule or told to come in when they flare for another treatment.

Different people have different reactions to the DMSO treatments; some improve right away, some take longer, and some don't respond at all. I was in the group that did not respond at all -- in fact they usually made my pain much worse, so I stopped. However, MANY MANY IC patients get relief from DMSO instills, and I encourage you to discuss the option with your doctor.

Hope it helps!!!

[M.C.]

This site seems to be the way I'm learning oodles about IC and I really appreciate the knowledge. The new urologist I'm going to in Nov. was named on the site as 1 of 6 or so in Canada, so I'm really hopeful he'll be able to help me, or at least have some understanding of what I'm going thru. The more I learn, the better I think I'll be at handling my situation. Thanks so much for explaining DMSO to me. My last urologist mentioned something else he could do during my first visit but never mentioned it again. My last visit he suggested my family Dr. send me to a gastroentrologist! but my GP doesn't think it would do me any good, hence my asking to see another Urologist. Guess I'll see what happens in Nov. In the meantime, I do enjoy being able to visit this site, everyone has been really helpful. Thanks again.

[Cricketmk3]

Jen, THANK YOU for such a thorough explanation of DMSO! (I was beginning to think my entry was invisible). ; )

[Sarojini]

No problem... :) Marilyn, I saw your entry... ;) I decided to expand on it because I thought perhaps it got missed in the slew of responses M.C. got....

[pratt]

I have pain and frequency while I am driving but my main complaint is the day after the drive. About 24 hours after an hour or more drive I am in pain. Does anyone else have this? I think its the driving.... I have been really tracking what I eat and I think it must be the car rides. If I go on a trip I have to make sure i don't have to do anything the next day because I am on pain meds all day.

[Mothergoose]

Yes driving makes me much worse. My husband dosen't or won't belive it. We live 3 hours away from any city of any size, so we are often on the road. Things that I have found that help are, letting someone else do the drivng so I can change positions often, Stop as soon as I get the urge to go, if I have to wait then I can't preform and then I have to stop again, I bought a thing that plugs into your lighter outlet and then plug a heating pad into that and use my heating pad in the car. This at least helps will in the car. I drink while in the car but I try not to over do it, but I have to drink or it's even worse the next day.

Good luck I think this is one of the problems lots of us have.
Mothergoose

[lnseagraves]

after tomatoes for me...

As Sarajini also stated, I can be feeling fine and I'll get in the car and it will cause increased urgency and often pain. A car ride of more than 2 hours will give me an all-out flare. It will take me at least a week to recover from that.

When my hubby and I were searching for our house, we quickly found out we had to limit our scope to no more than a 20 minute commute from the house to my office. We had been ready to make an offer on a house 40 min. away and so we took a number of trips back and forth from our apt. to that house in a week period. Just the 4 trips in a week was enough to send me in a flare.. obviously attempting to do that for 5 days every week wasn't going to work!!!!

As for when I'm ALREADY Flaring... I don't understand how any of you can drive! My pain and urgency are so high during a flare that I CANNOT drive. My adrenaline is pumping so fast that I know I'd be speeding at insane speeds and my attention to the road would be seriously compromised. When in a flare, I try to stay home-bound. If I have to go to the doctor's office, my hubby comes home from work to drive me. If we have to drive somewhere else (Like last year when my hubby's grandfather was on his deathbed) I take as much pain meds as I possibly can, pack the ic pillow and a heat pack and ask hubby to stop at every toilet between our door and our destination.

[pratt]

Does the driving thing ever get better? I just found out i had this and it seems to be getting worse still. Does the driving ever get better? Has anyone had trouble driving and then it got better? Also where do you get a heating pad that you can plug into the car?

[JanL]

Pratt,
Driving is really rough on me, but my heating pad and ice packs help. You need to buy an inverter to plug into your car lighter. A regular heating pad will plug into the inverter. According to my husband, it needs to be an inverter that can handle a large voltage (mine is 350 volts) because the heating pad needs the high voltage or you will blow a fuse. My hubby got mine at a place called Harbor Freight (a tool place that has a catalog). Other people have said that you can find them at Auto supply stores or places that carry sound systems for cars. Hope this helps. My next car will have heated seats that heat from your bottom all the way up your back. I rode in my nieces mini cooper and it had the most wonderful heated seats. They got as hot as my heating pad---ummmm:). Hope you get your heating pad rigged up soon!

Janice

[mayray]

I remember when IC was bad and the days of driving when I probably should not have. YOu know the feeling of not being able to concentrate because your mind is on your bladder at all times, only IC people know what I mean. Yes the heated seats would be nice. Now that gas is $4 a gallon in Washington, D.C. I am better off on motorbike

[sugar]

I'm w/Donna on this one. I've severly limited my driving not so much from pain, as from side effects from painkillers. I've heard horror stories of people who received DUI's when driving on codeine type pain killers. I take 5-6 a day. I know my driving is not as good, but I have to have the pills to even make it out of the house. I try and keep my trips short and close by, and call on a few friends to help me run errands. I NEVER talk on a cell phone...hell, I'm scary on the road just under normal circumstances. I know a lot of us feel normal w/meds, but one day I had several close calls, and after that, I dont go out unless I have to. I'd bet money that if I had to do a field sobriety test, I'd fail. And in VA, DUI laws are incredibly strict. I've got enough problems...dont need to add that to the list. I dont have kids so I know many dont have an option. Just be careful. Donna's right...we could harm ourselves or someone else. Just my two cents worth!
Annette