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View Full Version : Why to flares get worse when we lay down?



Claredale
10-09-2006, 08:59 AM
I can go most every day without pain and even go several hours without going to the bathroom. I don't stay at my desk constantly and I do stay busy, but as soon as I get home and get relaxed, my flare starts and the heating pad comes out. If I had the energy, I would stay busy at home if they would help, but I am just wiped out! By 8:00, the bathroom breaks become very frequent. Thank the inventor for TEVO!!! When I get in bed, I am up and down to go to the bathroom sometimes every 30 minutes. The valium supp have helped with that, but I am also taking Lunesta, Soma, amitriptyline and the lidocaine patch. So lately when I do get up, my husband said that it's like watching me in a pinball machine going through the room. He has even found me in my closet, at least I have already emptied my bladder. I am just so drugged out that it is hard to get going everyday.

I just wanted to know what the thoughts are out there. There are times my pain is so bad that I am taking a pill every couple hours. I try to break them in half to trick my brain that way.

Freckles
10-30-2006, 07:22 AM
I feel the best when laying down. I'm at my worst when sitting or walking. I feel very good (not pain free, but better) when laying down.

Karen

**Angie**
10-30-2006, 11:41 AM
We are all so different. (in everything) I feel better standing up but since I get very little sleep at night because my bladder doesn't like to be laying down--I'm to tired to stand up all the time. I should say --not standing still because that really bothers me--but walking helps. What a mystery this IC is????

Katrina
10-30-2006, 11:50 AM
I personally find movement or sitting the hardest.....but I do think that part of things is that when your tired your bladder is dealing with that and all that you did that entire day....and if your finally resting your more apt to notice any symptoms. Back in the days when things were worse I think slow walking was the easiest...easier than laying down.
These days I sleep on a cussion which helps a lot. I can't think of anything specific about laying itself that would be hard on the bladder besides pressure...which is why I always lay on my side...since there is pressure from the back and front....the cussion lessons that too. :grouphug:

DoulaSue
10-31-2006, 12:59 PM
I'm most comfortable when I'm moving around, I feel that the pain is worse when I'm relaxing, either sitting or laying in bed at night, especially. :( It's like all other distractions are gone, and ALL I can focus on is my bladder!

Katrina
10-31-2006, 01:06 PM
Trying help us all clarify a bit here.
Do car rides bother you? using shaking the bladder bother IC patients....slow walking is usually good but pushing it too much is very similar to a car ride....so running can be difficult. Most definatly though...take away distractions and boom!

Freckles
10-31-2006, 01:13 PM
I'm not so good in the car. Bumpy roads kill me. I always try to stay away from speedbumps. The worst ride I can remember was in Ireland about 3 years ago. I was on this really bumpy road and I was determined to see the sites, but I can still remember all the pain I had. OUCH!
Karen

Bianchi
10-31-2006, 01:21 PM
Laying down and sitting for long periods of time really bothers me. I am going to try sleeping on a cushion, like Katrina. And yes sleeping on the left side seems to help a little.
Going through a bad flare.
Take care everyone.
Bianchi

DoulaSue
10-31-2006, 11:56 PM
I went for a CT scan yesterday, and they put my legs up on one of those wedge type pillows, so my knees were lifted and my thighs and calves were supported. My abdomen was tilted back a bit, and that seriously seemed to take a TON of the pressure off my bladder, and helped me feel so much better! Since then, I've been laying with two pillows under my knees, and it really seems to help.

ICNDonna
11-01-2006, 02:47 AM
One of the things that happens when I go to bed is that there are no distractions so I can feel my bladder. I usually take a book to bed with me so there's something else to think about. When I get very sleepy, I can usually go right to sleep.

Donna

Claredale
11-01-2006, 03:14 AM
I normally sleep on my side. I have used the pillow thing several times as well. I guess like several of the posts say, that when you are busy, the bladder doesn't grumble as much. Now when I am in a flare, depending on the pain level, walking and laying flat are worse. Alot of times, I am doubled over with my heating pad, waiting for the pain meds to kick in.

Tracey

goldilocks
11-20-2006, 06:14 PM
I feel pain most of the time either when walking or sitting or even laying down. I can never go for a jog or even imagine running.( ahhhhhhhh) All that jarring that is to intense for my condition. i know our severty is different. I'll sit for awhile but once in awhile i have to move around and get up or ill be sorry later. I usually get up every half hour due to my frequency. Maybe when you're lying there in bed your mind and body is not active at that time. this entitles your thought process to consintrate on the pain.(subconsciously speaking.) When your busy you don't feel it as much.

Just a thought, i wish i could be as busy as you and active. I remember a few days before halloween i was preparing my costume. There i was working on the sewing machine, sitting of corse. The next thing i knew i was in horrific pain. I had to continue later. Vacuming one day i'm fine ,the next day i attemp this house hold duty and i can hardly move afterwards and had to lye down. Know wonder the urologists and scientists can't come up with a cure when our conditions are so different and fluctuate.

Good luck with finding something that works. Today i just bought some lush lavender scented oil. I' m going to relax and breath in the lovely aroma. This aromatherapy scent should send me off to la la land. i'm hoping. I have trouble falling asleep. Maybe you can try this tip. Thanks to the person who said they sleep with a couple pillows under there legs when sleeping. I 'm going to try this.

Bye for now:pray:

ihurttoo
11-20-2006, 06:54 PM
Unfortunately, I am in the "Better Lying Down Camp." I usually lay on my left side too. It is my best position. Also, I also like the wedge pillow below my knees. I agree that it takes the pressure off the bladder.

The WORST for me is being up, moving around (or running or anything else jarring.) When I clean the house, I have to stop about every 15 min to lay down. It is terrible! It literally takes me all day to do what a healthy person could do in a couple of hours!

Also, if I have a low pain day (like today), ineveitably, I overdo it, trying to compensate for all the days in bed. THEN, it takes 2 days to recover from one good day overdoing it!

Since I felt good today, I did WAY too much, and am certain, that the next 2 days I will be paying for it!

It is weird though, how different we all are! I just wish there was a cure for all of us! Anyway, I wish all of you a pain-free nite tonight! Hugs, Amy

Claredale
11-21-2006, 04:53 AM
I have a lavender candle that I light sometimes and some lavender spray that I spray on my pillow everynight. It seems to make my mind know that it's time for sleep. I also use the meditation music. I don't meditate. I am way to hyper for that, but so far my sleep meds and my routine have been working. I especially love my heated mattress pad. I have been doing alot better.

Last week, my hubby and I cleaned my house from top to bottom. The next 3days I was worn out. I also started getting a cold, so that didn't help. It was so nice to finally have a clean house, so I am going to make sure that I take a few minutes everyday to keep it up. Hopefully that will take away some of my stress as well.

Take care and sleep well!

Tracey

Sarojini
11-21-2006, 05:07 AM
I have to read or something before bed until I am just unable to keep my eyes open. Otherwise, if I just lay there, I will keep saying, "Geesh, I have to go pee just ONCE more before I go to sleep..." and that will go on until I've gone to the bathroom 10 times...

For me, standing for too long and doing "twisty" chores like vacuuming and lifting the laundry basket cause bladder and back pain. I TRY to get my husband to help, and he does about 50% of the time, but he really has slacked off.

As for the car, I HATE IT. The car has always made my IC worse. Since my family has finally figured this out, everyone is coming to our house for the holidays this year, so I don't have to drive/ride/fly anywhere.

My parents are especially understanding about that so they are coming down a bit early for Christmas and will help me decorate the house and clean it. They know my husband isn't too good at helping with housework (and it ticks them off, but what can you do). They are also buying me a Roomba, one of those robotic vacuum cleaners that just vacuums the room by itself, for Christmas -- they have one and say it works great-- because they know I cannot push the vacuum for very long without hurting.

Tracey, I'm glad you have your house clean now and that you are doing better these days :)

leelee88
11-21-2006, 05:42 AM
well walking is the worse for me.. i would rather lay down.. not trying to promote this but about a year ago i bought a memory foam for my bed it has helped so much!!!i can even lay on my stomach with no pain..i am going camping for thanksgiving the whole family rented cabins, and yes my memory foam is going with me...lol

tbn
11-27-2006, 05:51 PM
I have trouble sitting while I am in a flare (sometimes even when I am not). I often have trouble laying down while flaring. Most of my problems with laying down is laying on my stomach. I wasn't able (flaring or not) to until I got a tempurpedic bed (for my back). When I am flaring I don't even try to lay on my stomach, but I often attempt to lay on my side. Although I am a "side-sleeper" I find it more comfortable to lay on my back than to lay on my side (b/c of my bladder). The only suggestion (I have heard) to why some Icers have difficulties sitting is because when one is sitting all of ones weight is sitting directly on top of one's bladder. I don't know... I hope that helps.

alianne
12-11-2006, 07:08 PM
Sitting is very hard for me - I have a hard time even just sitting through a short class or through church or anything where I don't move around. I find it better if I sit indian style with a pillow in between my legs. I have a hard time sleeping on my tummy unless I have a pillow under my hips which I LOVE. I am to teh point where I never go anywhere at night if I can't take my heating pad to sit with and even then I usually end up laying down if it is longer than 1.5 hours.

Rose1960
12-28-2006, 03:17 AM
IHURT...just wanted to say hello to a fellow Kentuckian. I am from the Lexington area.

Blessings,
Rose

ihurttoo
12-28-2006, 01:15 PM
IHURT...just wanted to say hello to a fellow Kentuckian. I am from the Lexington area.

Blessings,
Rose HI, Rose!! So good to see another Kentuckian around!! I live in Bowling Green. I am actually about 30mi outside of there, but that is the closest town you'd know. (I live in a little village of about 500 people, so it is pretty teeny!)

:Welcome to the ICN!: Although I cant attend them due to the disatance, they have a few support groups, one is being started by someone in your town, though I am not sure if it is up and running just yet. There is another that is a Northern KY support group near Ashland or Covington. There is also one in Louisville (I think sponsored by and at the Hubbard Clinic). And then, (the one closest to me), is in E-town, (which is more informal and is a group of about 6 ladies that get together once a month and have dinner at a restraunt in E-town. Unfortunately, E-town is my closest and it is 3 hrs round trip...a bit of a haul.

But, I havent seen any of the Ky gals around here in a while, so it is good to see ya aboard!

If I can help you in any way at all while you are here, pls let me know.

Hugs,
Amy

rachann
12-28-2006, 02:34 PM
I asked my urologist why my bladder pain was worse when I tried to lay down and he said it is because the front and back of the bladder walls are touching.:hmm: It is just so frustrating when you try to relax but you can't because relaxing hurts!:headbang:

jorkale
12-30-2006, 03:49 PM
it was as if i was reading my life story...i can't even begin to tell you. i have been in a terrible flare for what i think is weeks now. i have posted on this website some of my store so i won't go into details. i can't take the pain. it's making me insane. i was just referred into the university of iowa vulvodinia clinic...hopefully will get some help with a chronic gardnerella problem. other than that and IC i am healthy...i take pain medicine almost every single day ..which i often wonder if that is poison to my bladder? it's a vicious circle. well...i just needed to write...

Claredale
01-02-2007, 06:25 AM
Hi Jor,
I am sorry that you are having so much pain. I have never experienced vulvodinia pain, but I sure do feel for you! I have actually been doing much better now. (knock on wood!) I mostly take pain meds at night when I start settling down. I went to the doctor last Friday and I explained that the main feeling of my pain was burning at night. He prescribed Lyrica. I was very nervous about taking it due to my experience with Neurontin, but I think that I did okay over the weekend. I am supposed to take it 3 times a day, but I have only taken it at night. I am cramping a little right now, but I think it is due to my time of the month. The nurse forgot to give me my depo shot which was about 2 weeks overdue, so I am going back this week to get it. I really think that shot has helped me since I am no longer having periods. I always had such a bad flare right before. I have not felt that pain meds were the cause of my bladder pain. I know that some of the cold meds can irritate it sometimes and some meds like detrol always cause retention with me. What kind of pain meds are you on?

jorkale
01-02-2007, 02:33 PM
hi tracey...well, i actually felt a little bit better today. i think working helps because i don't sit around and think about it. the university of iowa called me today and lucky for me..instead of march 12 i got in this friday at 8 am to that special vulvodinia clinic. i just think this pain is making me insane. i can hardly stand it. i have heard a lot about lyrica this week and being the director of a drug testing division..i am not sure what it is..i guess i should look it up! i am trying to keep my humor with me...but man is it hard. i am 43 and my life has fallen apart this past year. my husband kyle is wonderful and both of my kids are too. my daughter is home on winter break from school in nyc so she is going to go to the doctor with me because kyle will be out of town on business. bummer :>(
well, the good thing is that i am going to get in..well i better get some laundry done..thanks again for your encouraging words...shelley

jayess
01-04-2007, 05:46 PM
I'm a male with EC, but I just wanted to add that my frequency was worse at NIGHT. Maybe staying busy during the day helped distract me. My pain has not been as bad as some I've heard about here, but it was usually directly proportional to the frequency. I posted in the EC area tonight about some recent success with my first prednisone trial. Any stories re: prednisone would be greatly appreciated!

My BEST thoughts and prayers to ALL!

jayess