do flares just happen or is there always a reason

[jane2]

Do IC flares always have a reason or can they just happen.

I have had fibromyalgia for close to 15 years, at first I always looked to see what caused them, sometimes there was a clear reason, but often I found no reason for a flare. Now I have been dx for 5 weeks. Watched my diet for 4 weeks, and have had my 3rd DMSO instil.

Today I had a horrible IC flare, I don't know the reason, unless it was riding in the car. My hubby and I love to garage sale and so we were in the car 2 hours but had several stops that we got out to check out a sale. I was in so much pain I lost my change purse, came home, took a Urelle, and pain med and went right to bed. I have alternated from heat to ice, and back again. I'm finally feeling a bit better. But not out of pain by a long shot. I didn't eat anything out of the ordinary, nor eat any foods bad for me. I real labels big time. So my question is do these IC flares always have a reason, or do they just happen?

I have to go on a driving trip starting the 28th; hubby promised not to go more than 4 hours a day. I'm really dreading it & actually don't know if I can do this. It is for my grandson graduation + I've not seen my son and daughter in law for a year. So this trip is important to me; but I honestly don't know if I can suck it up enough to even try this.

Any help and or knowledge would be most helpful

southern hugs,
jane2

[Hannah13]

Do IC flares always have a reason or can they just happen.

I have had fibromyalgia for close to 15 years, at first I always looked to see what caused them, sometimes there was a clear reason, but often I found no reason for a flare. Now I have been dx for 5 weeks. Watched my diet for 4 weeks, and have had my 3 DMSO instil.

Today I had a horrible IC flare, I don't know the reason, unless it was riding in the car. My hubby and I love to garage sale and so we were in the car 2 hours but had several stops that we got out to check out a sale. I was in so much pain I lost my change purse, came home, took a Urelle, and pain med and went right to bed. I have alternated from heat to ice, and back again. I'm finally feeling a bit better. But not clear by a long shot. I didn't eat anything out of the ordinary, nor eat any foods bad for me. I real labels big time. So my question is do these IC flares always have a reason, or do they just happen?

I have to go on a driving trip starting the 28th; hubby promised not to go more than 4 hours a day. I'm really dreading it & actually don't know if I can do this. It is for my grandson graduation + I've not seen my son and daughter in law for a year. So this trip is important to me; but I honestly don't know if I can suck it up enough to even try this.

Any help and or knowledge would be most helpful

southern hugs,
jane2


Good Lord, I wish I knew. I stay on the ic diet and take my meds and msm glucosamine and etc and I still get flares. I hate the unpredictability. I wish I could schedule the darned things. I truly do. The only thing I know for sure brings them on is big stress. (I know. Stress. How the heck does one avoid it in this world?) I try to stay away from catastrophic thinking, (harder than it sounds) and I'm trying my best to learn to relax various muscle groups consciously. (No clue what I'm doing. Have not found right PT help yet but have good doctors otherwise.)

I hope my rambling helps. I don't organize my thoughts well when the flomax kicks in.

God bless!

[KarenAnne]

Physical therapy for IC associated pelvic floor disorder (pfd) has allowed me to ride comfortably in the car again. I have read on here & also been told by my physical therapist, that everyone with IC can benefit from physical therapy. In the beginning I could not even stand a 15 min. car ride. I know this isn't enough time to help with your coming trip, but there is alot of info on here about traveling with IC.

[Hannah13]

Physical therapy for IC associated pelvic floor disorder (pfd) has allowed me to ride comfortably in the car again. I have read on here & also been told by my physical therapist, that everyone with IC can benefit from physical therapy. In the beginning I could not even stand a 15 min. car ride. I know this isn't enough time to help with your coming trip, but there is alot of info on here about traveling with IC.

I sit on thermacare heating pads on long car trips, does wonders. Maybe that would help?

[SharonA]

Yes...It is possible to have mystery flares where you can't seem to pinpoint what caused them in the first place. Very frustrating because you get confused as to what might help get rid of them. The best thing is to drink natural spring water to get the urine diluted and out of your body as soon as you can and be very careful with your diet eating only bland things for a while. I tell people all the time when they look at what I eat that my bladder only likes vanilla colored food when it hurts. It seems to make sense to them and it helps me make the right diet choices.

Is it possible to have the back seat all to yourself so you can spend most of the time laying down? That really helped me when I was forced to take a road trip from San Diego to Memphis a couple days after the 9/11 attacks. There were no planes flying because they were grounded, so we rented a car and drove home. That was back in the days right after I had been diagnosed and I was still suffering with a lot of pain and frequency. It was a miserable trip, but, with being able to be prone most of the time and stopping a rest stops a lot, we did it. Take some cool ice bags in a ice chest to help with any burning you might experience...soda cans and bottled water stored in ice chests come in handy for this. You can also get some stick on warmers to help with muscle pain. I like heat for my bladder when it feels sore.

I hope your trip goes well and that you enjoy your time with family. :):):)

[floridamom]

i have had IC for over 6 years & gave up trying to fgure out what caused me to flare about a year ago. I used to drive myself NUTS trying to figure out what caused it..was it a food, was it a smell, was it sex, was it the way i sat??? i could go on & on. I finally gave up & just let it go. Flare happen & trying to pinpoint the EXACT reasoning for it...well it can dirve you batty.

Unfort. with IC we need to just deal with these darn flares as they come. I wish i knew ways to prevent mine, but even with IC diet following, and doing all the other good stuff, i STILL flare..so i just let it be & accept it.

Good luck to ya!

[angel7655]

I'm with everyone else here. I usually flare for what seems like no reason at all.

[c2miracle]

"To flare or not to flare, THAT is the question" :rolleyes: I desperately would like to figure out why?- why? why? WHY? It comes down to us ICers being strong and positive and getting thru the worst of it! :)

[Briza]

I can flare from food, bevs, stress (emotional or physical), sex (or just thinking about sex :bonk:)long car rides, being on my feet to long....and many times for seemingly no reason at all. Sometimes all I have to do is THINK or TALK about my Vulvodynia symptoms or SEE a bottle of red wine or vinegar and that will bring Vulv and/or IC symptoms on out of the blue in a split second. :loco: Wish I had the answer. But thankfully these days my stress is low and my symptoms well controlled with diet and lots of water and when needed, meds, cold packs, cool baths, other self help stuff.

Jane, I would HIGHLY recommend getting some kind of special cushion to sit on for your road trip or ANY ride in the car. You probably do not have time to order and receive before your trip the IC cushion sold here in the ICN SHOP (this cushion can be a GODSEND for car rides or anytime you have to sit for long periods of time). But pharmacies and med supply stores carry other types of special cushions like the donut cushion and that could be of much help.

Also, having several pillows of varying softness (my preference is for down pillows, since you can scrunch them up to make them most comfy) in the car can make for a much more enjoyable ride.

And since you use cold therapy, my suggestion is to freeze 4 or so cans of soda (NOT to drink lol) and put in a small ice chest without ice and use them between your legs, on your back, on your belly for relief. Using cans of soda is great because you can refreeze and reuse them, they don't leak as they melt as bags of ice do, can easily be washed clean before refreezing, and they don't seem to feel AS cold as just a ziploc of ICE...ice is usually just TOO cold to be bearable. AND you can always stop at any corner store to buy a cold one...corner stores that keep canned beer on ice make for a great really cold cold pack when on the road. Wear a skirt so you can slip can of soda underneath between legs if needed...no one will be the wiser!;) Hope this helps!

[jane2]

I took a small 2 hour drive on last Friday and I went into a huge flare. Plus my mail order pharmacy wouldn't fill my script for urelle & doctors office still has not returned a phone call. I have my 4th DMSO treatment Weds and I will be telling nurse how I feel like they don't care enough to even call back, etc.

Enough on that topic, thought i would just say thanks. After Friday I told hubby and my son and DIL that I didn't think I could come out right now. This give me some time to get better, time to get some drugs that will help, and finish my DMSO treatment here at home. I will order the pillow at the ICstore.

Everyone has been so great to me here. Wish I had the same reponse from Doctors office. LOL, really not funny is it.

Southern hugs, love & blessings.
jane2

[ICNDonna]

Since you just had an instillation, it's possible that you have an infection. And it could have been from spending too much time in the car. If we're going to be driving for several hours, I do use my IC cushion. I do hope you will be able to go to the graduation. Any chance you could fly? That would shorten the trip a lot.

Warm hugs,
Donna

[VickiB]

I guess I'm lucky that almost all of my flares nowadays seem to be diet related. (:bonk: Which is really stupid because I should know better! :bonk:) On the rare occasion I'll have one that I can't explain, and I think those are the worst because not knowing 'why', there's nothing to do to prevent them from happening again!

Something I've learned that is really important for me when spending time in a car (or jet, train, etc) is to wear really loose fitting, comfortable clothing. Absolutely no binding waistbands! Even the slightest pressure over time will irritate my bladder eventually.

Vicki