sitting causes pain

[amaris]

I've noticed recently that the 25 minute commute to and from work makes me feel like I'm having bladder spasms and my urethra hurts. I've tried using a foam cushion that i cut the middle out of (kind of like those cut out bicycle seats) since I don't have a donut cushion, but not sure that it's helping (only been trying it for a couple of days). Once I've ridden into work, then it's best that I don't sit at my desk because that just seems to exaserbate the pain. I can do some standing at work since I work in a lab and many people stand at the bench. However, I can't stand all day long as it makes me very tired.
This afternoon I was pain free--the best I've felt all week because I was on my feet for 4 hours teaching a class. The car ride home has put an end to that. I'm not in a lot of pain at the moment because I'm kneeling in front of the computer. I feel like I'm going crazy or something. Sitting didn't used to bother me before. Anybody got any ideas?

Amaris

[Sarojini]

Ugh... tell me about it... car rides stink!!!! :( Sometimes they make me get bad pain, and ALL the time they make me have to pee badly. :rolleyes:

So far I have not tried the cushion yet... and am looking for solutions too.

I work in a lab too... what kind of work do you do?

:)

Jen

[grace 2]

Amaris, I thought I was the only one who kneels at the computer:) I bought an IC cushion, sounds about like the one you made. Sometimes it helps, but not much. Sorry I don't have any ideas, but I can relate ! Grace

[ICNDonna]

I have an IC cushion, which helps ease the vibration of riding in the car.

If this is something new with you, you might want to check with your doctor.


Warm hugs,
Donna

[Dixiefireball]

sending you hugs and prayers
Rhonda

[amaris]

Thanks ladies. Sometimes it's just good to know you're not alone. I mean how many other people do you know that try to avoid sitting? I must look strange to some of my co-workers.
Donna, it's definitely something I'll mention to the doc. I was diagnosed by a uro in GA, but since I live in NC I have scheduled an appointment with a uro here. My appointment's in about a week, so I'll just add this to the list of things to talk to him about.

Amaris

[carla_2004]

Amaris, I agree with the others that sitting is really challenging during a flare- especially traveling in the car. I think it has to do with the vibration combined with the position and stress on our bladder region.

I just survived a 10 hour car ride yesterday. The only way I was able to accomplish this was by having my husband drive while I laid down in the back seat.

A week before, however, I had to drive myself on a 5 hour trip. It was as horrible as it sounds. During the drive I wished for the IC donut cushion thingy- about a million times.

I think I'll go order one now while I'm thinging about it.

Hugs and good luck, Carla:grouphug:

[carla_2004]

oops, I meant thinking about it.:D Carla

[Sarojini]

Hi there...

Carla, I'm with you. I just ordered the IC cushion thingie from the ICN Shop tonight :thumbsup:

I only have a 20 minute commute to work but I would sometimes even have to stop during just that short time (to pee, and to stretch my pelvic area because I was getting crampy).

I sure hope the cushion helps... my husband and I are going to try a 6 hour trip in the coming months, and if I can barely do 30 min... arrrgh. :(

Jen

[carla_2004]

jen and all,

Y'know what item I really wished I had? I have a good friend that owns a small plane and often flies on long trips. When they need to urinate in the air while flying, they use some gizmo that allows them to do this. It's been described to me, however, I am at loss for words to describe it.

I looked on the ICN Store, but didn't see this item. Any pilots out there reading this and know what I'm talking about?

Hugs, Carla

[Sarojini]

:lmao: :lmao:

LOL... Carla, I don't know what that thing is called either, but that is HILARIOUS. :) AND it would really be so useful, funny or not!!!!

My husband said something similar the other day... he suggested perhaps we should install a version of the type of urinal they've got on the Space Shuttle in the car...it's apparently some sort of glorified funnel-and-hose combination that even women can use with ease...and it sucks the urine out into space. You can even use it in zero G, upside down.

Of course, I had to be disgusting and say it would be useful for rude, tailgating cars... I bet they'd quit pretty quick if they suddenly got blasted with pee .... :lmao: LOL

*sigh*

Sorry, guys and girls, it's late and I'm loopy because I've taken a Percocet, as I am flaring a bit after my DMSO instill today. :rolleyes:

Jen

[carla_2004]

Jen, I want some of that!!:bouncy:

OK, after reading your post, I had to search the web for the device. On a pilot aviation site, I found something called a "Little John Red Plastic Urinal for pilots to avoid "No more unscheduled plane landings.":yikes:

They also offer a "female adaptor" for the thingie called a "Lady J Adaptor."

I also came across a product called, "Kant Wate."

I'm not making this up, honest!!
:D Carla

hahahahaha!!!!

[ICNDonna]

I ordered some travel Johns through this site and they work very well. They're small enough to tuck one in a pocket or your purse when folded. They have a plastic bag attached, which contains an absorbent. They aren't quite as easy to carry after use, but a plastic bag would work well. I carry plastic bags to clean up after our doggie --- guess I could use one of those for the used travel john too.

:hi:
Donna

[Julie Smith]

Sitting has always been awful and that's why I don't do much of it. I did purchase sitting cushion from ic store and it doesn't work. Just attended ic support group meeting and it was suggested to purchase a thick cushion one may use for resting knees on when gardening and cutting hole in center. Sounds like you may have done that.:(

This is a serious problem and keeps me from going out or even sitting at home. I hope my sacral nerve block helps next month.

Good luck to you all,
J

[kadi]

For car rides, I also find it helpful to fold up a small wool scarf to make a pad between the seat belt & my bladder! I like that because I can wear it when I get out of the car or can roll it up & tuck it in the coffee cup holder (now that I don't drink coffee!)

[gypsyjoy]

Jen, that was the funniest post!!!:lmao: :biglaugh: I will have to ask my Mom but she has said something about devise to go when ever and were ever needed .................:hmm: I will get back to all of you on that one. I just can't remember anything on this meds.
Joy

[Katrina]

Everywhere I go I go sitting on pillows.....some people think it seems odd...but I don't care....I found in a car slower is better....and and the front seat is better...and different viacles make a diff too. There was a lot of great advise here!

Take Care,

[Mimi-in-Chicagoland]

One of my dad's planes had a tube with a nozzle for you to pee. The tube just ran out the bottom of the plane. I guess you could buzz over someone's house if you didn't like them. :D Now its kinda hard to pee in a plane if you're the one flying it. :rolleyes: Also, planes are kinda cramped...and I didn't really want to get to know the guys I flew with that well.

There were a couple of trips where I wish I had some travel Johns. Since I have the interstim, I haven't needed them.

[ICchell]

OMG!!!! Jen and Carla,
That was way too funny and the smiley went so perfect .
[QUOTE]
No more unscheduled plane landings:yikes:
LMAO
almost pee'd my pants :lmao:
Michelle
Seriously though all funniness aside,that would be awesome!

[ICNDonna]

If you take a snap style clothespin and clip it on the shoulder strap, right where it comes out of the slot at the top, it will keep the belt loose. All you need to do is to pull the belt out a few extra inches and fasten the clothespin while holding it loose. And if you were to have an accident, the clothespin would just pop off and the belt tighten.

I do this any time we'll be in the car a long time.

Donna

[amaris]

I've been using a kleenex box on one side and a plastic water bottle that hasn't made it into the house yet on the other side to elevate the seat belt so it doesn't actually touch my abdomen. The kleenex box has gotten a bit crushed, though. It made for a great laugh this morning when my sister realized how it got that way.

Amaris

[Sarojini]

I am going to try the clothes pin trick with my seat belt. This is one of the most annoying things in the car for me--the constant pressure of the lap belt on my lower abdomen makes the "gotta go" sensation even worse. Thanks, Donna!!!

:) :thumbsup:

Jen

[grace 2]

Thanks Donna, this will help so much! I've been driving with one hand, while I hold the seat belt out with the other:rolleyes: Grace

[Julie Smith]

I've been putting a small rectangular pillow over my abdomen and that's what the seatbelt goes over. No pain, it's wonderful.
Good luck.

[ljl765]

I'm surprised you're still working w/IC.. I can't stand to be sitting, standing or anything repeticious, (sp) especially being in a car for longer then a few minutes or I suffer for days..Feels like I bruised my insides if I sit in a car long, and it irritates the area.
I had to get a bigger car, more comfy, not so much bumps this way to juggle up the insides. Empty the bladder before you leave helps a lot, as does not drinking a lot in the morning if I have to go somewhere. Ice jell packs help a lot, as does Lidocaine 2%..ask you MD for this..I hope it helps and you feel better soon.

[Julie Smith]

I think you misunderstood what I said about driving with the pillow over my tummy and my seat bealt over over the pillow. Unfortunately, I've not been able to work since last Jan.2003 when I was diagnosed. sitting is the worst, especially those bumps when driving. I've tried to return to work several times but the pain is my worst nightmare. Lying down is most comfortable. I'm now seeing a pain specialist who is helping me a lot. the pain meds have me whacked out most of the time. So I just plan my grocery trips so as not to drive while medicated.


I pray for you and all of us with this nasty disease. Best wishes to you always,
Julie:kiss: :pray:

[Tia2]

I first noticed my bladder problems when my job required me to spend more time driving. It seems to be the angle of the seat and laying down is the only thing that helps. Actually, stopping and taking a short walk also helps. I wonder if it has to do with blood flow to the bladder. I noticed early on that when I wore tight jeans (Those were the days! I hardly wear pants now) I could feel a tingling in my pelvis like when your foot falls asleep. I had a UTI within hours it seemed. Yoga has helped. I've noticed that any chairs that require me to lean forward at all is not good. If I can get the weight back on my tailbone it is not bothersome.

I want to encourage everyone to really listen to your body. No physician will be able to know more about your body than you do. Take care, Tia

[Julie Smith]

Tia,

Thanks so much, you're right! We must listen to our bodies! I just never thought any illness like this would happen to me or that it even existed.

We all must take care of ourselves the best way we know how.

Love to you all,
Julie:kiss: :pray: :hi:

[redstonebef]

Has anyone tried using a Tens unit for travel. It helps me. I use it on long trips. Hugs

redstonebef

[wakebrat7]

I too have trouble sitting. I work at a law firm and have to sit all day and answer my attorney's phone, etc. It is so hard. I feel pretty good until I get to work and then about a 1/2 hour after sitting I'm in total pain. My urethra kills me and I feel like I'm going into a bladder infection.

Because it is hard to sit, I sit on my leg which is very wrong to do. My back gets all twisted and then I have back pain. I have been sitting on my leg for years now so I won't put pressure on my urethra. Its hard to live like this. Sometimes I just want to go on permanent disability because I can't sit.

Hugs,
Linda

[hsweet1968]

I'm another one who can't sit.
My job as a consultant typically involves computer work and responding to client inquiries... I can't be in the office for more than two hours without just feeling like hell and starting to sweat and feel nauseous from the pain.
I gave my boss a letter from my doctor today explaining that sitting exacerbates my pain symptoms, that's I"ll need shortened days/work from home arrangements, and hopefully that will help particularly while I'm having flares... but sitting seems to CAUSE my flares. It's kinda hard to write a presentation while lying down too!
I'm certainly worried about my job future... it's so frustrating.:(

[songbird7]

Linda,
I read your story about working for an attorney and sitting in a way that bothers your back to compensate. You commented about disability. That is a good idea and sometime I had to do when I literally had to lie under my chair with a hot water bottle. It takes awhile to get on disability but now IC is recognized as a disability. Also I think the definition of a disability is when one or more life functions are impaired. I hate to think of you sitting in an awkward way and hurting yourself besides the stress of work. You can read about IC and Social Security disability here www.ichelp.org/Disability/LongAwaitedSSDRulingForIC.html I'm a little rusty on my html. If this is not clickable past the address in your brouser.
and there are resources on this site as well.
I figured I might as well make good use of my time since I am flaring at what should be my bedtime and hours before. It takes documenting of your symptoms like a log book and some urologist's visits with a letter for Disability concurring that you now are unable to work.
I hope this helps.
((((( )))))
Songbird

[songbird7]

Ah, I see this site takes care of the html:) great. I'm not thinking that great right now. I'm going to take a shower and let the water run over my lower belly and bladder. That helps sometimes.
Take care all,
Songbird