Does anybody else have a PATTERN of symptoms? - Interstitial Cystitis Network Support Forum

Taramc · 07-05-2007, 02:14 AM

Hey everybody,

Since the very first day my symptoms started, I have had TOTAL RELIEF from them in the mornings for at least 3 hours after I wake up. I haven't noticed anybody else mention this. Is it common?

Also, the pain is worst after I eat, NO MATTER WHAT I eat. Depending on what I eat, the pain can stab me in my back and down the inside of my thighs towards my knees. Sometimes it stays in both my back and my legs.

After eating, no matter what I eat, I can FEEL my bladder all the way around for hours. I can trace the inside of my bladder - like I can feel the whole shape and size of it.

My sensitivity to food has gotten progressively worse over the past two months. Things I used to be able to eat (a little mayo on a sandwich, or a cookie with chocolate chips) have become intolerable to me now. I'm running out of food!

Is any of this familiar to anyone?

Thanks,
Tara

P.S. My urologist won't give me Elmiron or Atarax until I'm diagnosed, and she won't diagnose me without a bladder stretch. I'm going on vacation in August so I guess I'll have to do the stretch late August and suffer more until then. Is this doing unneccesary damage in the meantime?

tigger_gal · 07-05-2007, 03:30 AM

I am one that no matter what I eat hurts my bladder. It makes me crazy. have you tried the ic diet at all?

humpieumpumkin · 07-05-2007, 03:34 AM

OTC pyridium (Uristat) Is truly a blessing for me on days like that! Make sure you take it on a full stomach and wear crummy underware since it stains orange. It truly is a miracle for me!

Erika

jezebel · 07-05-2007, 06:08 AM

I used to be okay in the morning also. Then by early afternoon I would feel tenderness in my bladder but only with walking. Then things got better, I had days with no symptoms. Then about two weeks ago my whole pelvic area and back started aching. I got my period which had lots of cramping. No I just have low back pain and weakness/achiness down the back of my legs. I wonder if it is related to the IC or have I strained my back????

***SharonA*** · 07-05-2007, 06:20 AM

In the beginning, I was fine in the mornings. Then about noon, the pain would begin. Not bad at first, but grew worse during the day. By 7:00pm, I was in agony. My bladder made sure I knew it was there and where it is located. Then, the next day, it would begin, again. Over and over, every day until I started taking Elavil.

Suzey · 07-05-2007, 06:48 AM

Could it be IBS? I get a lot of leg and lower back pain and pressure on my bladder until I am able to have a bowel movement. Just a thought.

Sue

***leelee88*** · 07-05-2007, 06:57 AM

I use to be ok with most foods, but now I cant eat anything that is on the bad list and only a few things thats on the maybe list..I believe its just a part of IC.. I do know that the diet has been a major part of getting any kind of relief from pain from my bladder, if I stray away just a little it reminds me very quickly that I cant have that.. I am learning to adjust..And you will to..Good luck

Ronda

Briza · 07-05-2007, 08:48 AM

I rarely wake up with pain or other symptoms in the morning, but by early afternoon is when they usually set in. I do have and know my food triggers, but I am not as diet sensitive as many others are. However, even if I eat what should be completely safe food, if it is a larger than ususal meal just the pressure of a full stomach on my bladder sets off my symptoms, so I try to eat small meals and snacks throughout the day to avoid this. Of course can not always avoid this so if I know I'm going to have a larger than normal meal or questionable foods (like eating out) I take a pain med and a pyridium, sold OTC as AZO standard or Uristat, before I go out or eat and this has helped me immensely with controlling my pain and other symptoms. I tried this approach after discussing pain management with my gyn and since I can usually tell what is going to cause me pain beforehand....whether it be food or just being on my feet too long, like shopping, he suggested taking my meds before I head out the door rather than waiting til I'm in pain...that just makes it harder to get it under control. Anyway, I have been successful with this approach and have ended up needing fewer pain meds this way, by avoiding the pain before it starts, rather than waiting til it sets in. If you don't have any other meds, pyridium since it's sold OTC is a good one to try. It gives many many people relief from bladder burning and is actually the mainstay of my treatment, it works so well.

Tara, I read in one of your other posts that you are relatively new to these symptoms and the board, welcome

, and I just wanted to let you know that my first year or so I was in constant pain, no matter what I ate, had no pain meds or any other meds for that matter, until I was diagnosed. The diet can take some time to work, so don't give up on it. At this early stage, your bladder may be just so irritated that regardless of what you put in your stomach it can cause pain/burning. But trying to stick to the diet while you are going thru this stage can give your bladder a break and you are probably doing it a benefit, even if it doesn't feel so at this point. I can eat a lot more things now than I could before...it just took time, treatment, and learning what my triggers are, but I think the first year is really important with the diet. And I am so sorry your hot tub experience seems to have triggered all of this.

That just sux. I wonder, too, if a round of antibiotics could be helpful to you since others in the tub also got infections and were treated with antibiotics? Best wishes.

Briza · 07-05-2007, 09:07 AM

Jezebel,
I also get a lot of back pain when my bladder hurts. It seems to be a common symptom for many of us with IC...referred pain from the bladder can affect the back and many other areas below the waist. I also get achey inner thighs and a fatigued feeling in the back of my legs, too. I have had this since my symptoms started, it was actually one of my very first symptoms when all this IC stuff started. Hope you find some relief soon

I also seem to get worse the week before my period

, but after day one of my period and for some days after it is finished is usually when I am feeling my best. Best wishes.
B

Charisse · 07-05-2007, 10:33 AM

I get bad back pain when my flares are bad yes. I also don't have an official diagnosis but am going back to see my dr today. He wants to do a cystoscopy and I'm afraid it will cause a flare before my vacation in September so I don't know what to do. I realize that's two months away but it's literally taken me this long to recover from the PST and Heparin instill they did back in May. I also have less pain when I wake up in the morning but the minute I get out of bed the pain starts and then gets worse as the day goes on. I am guessing gravity just pulls the weight of everything on top of my bladder which makes things worse. Sitting increases the pressure too so I bought the cushion from the ICN shop and it's helped me immensely! My symptoms are not the same everyday though and the only thing I've been able to connect to a flare is activity -any bending at the waist, aerobics, weight lifting etc. Even just too much housework! I can walk and that's about it. I guess I should feel lucky. Please keep in touch with me. I feel your frustration!!! If your dr won't give you Atarax then you can try taking OTC Benadryl. My dr said it works the same. Do you have allergies? If so then it definitely can't hurt to try the Benadryl!

Briza · 07-05-2007, 11:21 AM

Although I've never tried Atarax, my doctors have suggested Benadryl in the evenings...if nothing else it does have the sleepy effect so if you have trouble falling and staying asleep because of pain or frequency, it could be helpful. Unfortunately anthistamines, cold meds, etc. have the opposite effect on me and cause me to toss and turn all night and I get little rest so I try to avoid them at night. But that's just me. Luckily I have have had very good success with just 10 mg of Elavil for frequency and helping me sleep thru the night.

I also have one of the cushions that Charisse mentioned...it's great for sitting at the computer and when at work and for long road trips, especially when my vulvodynia is acting up. However, I have found that a soft down pillow also works well for me, so I don't have to carry the cushion home from work everyday.

Charisse, I understand your concern about the hydro and recovery time, even with your vacation 2 months away. I had a very long recovery after mine and no relief from my symptoms. I'm a teacher and had the whole week of Thanksgiving off when I had mine, scheduled it for a Monday, thinking for sure I would be able to go back to work the following Monday and not having to use any sick days because it was my vacation. So I thought I had planned it very well, but had complications and was in the hospital for a week and then home recovering for 2 weeks, missed so much work and income, so had to go back to work before I was fully ready. Is there some reason why your doctor won't give you a diagnosis despite the fact that it seems you had tested positive with the PST? OH, I just re read your post and saw in your sig thtat the PST was negative.
Supposedly complications like mine are "rare," but even so it seems to be a roll of the dice how the hydro will affect you and how long it will take for recovery. Two months does seem adequate, but I know that having had long recoveries after your PST and instill does not help when you have an even more invasive, serious procedure planned. I know I have a long memory for pain and long recovery times that make we wary of futurre procedures. My prayers are with you while you try to determine what is the best path to take.

megancolleen · 07-05-2007, 11:50 AM

I have noticed that my bladder also tends to feel better in the mornings, and worse late at night. This is a fairly recent thing. My food sensitivity also seems to be increasing. I don't understand it either.

Charisse · 07-05-2007, 12:06 PM

Briza I should have mentioned that Benadryl seems to make me pee more (like a diuretic effect) as well. This may not be so good for someone with frequency issues. My dr told me that my PST was negative. This was after I thought he told me it was positive. In fact I got copies of all my notes and it says "very sensitive to all manipulation" and that's next to his notes where he instilled the three different solutions and then he wrote "likely IC". However I remember thinking the pain I felt was nowhere near as bad in my bladder as it was in my urethra. And I think that is what made my test results so confusing. I was shaking so bad that my butt was sweating during the whole procedure and I told him the catheter insertion hurt so bad that I'm not sure what I was feeling after that because I was so tightened up. So I'm very confused and hopefully can clear this up today. So I was told it was IC and then after the Heparin instills made me worse he said he didn't think it was IC but something going on in my urethra. I also saw his nurse-practitioner inbetween visits and she confirmed most of my pain was in my urethra so maybe that's what changed his mind. I'm pretty confused myself! As for my vacation -were travelling to Europe so it's not just a minor trip. I think that is why I'm so nervous to do anything that might possibly make me worse! And we'll be gone for 2 weeks and it's a 10 hour flight and trains. I'm most nervous about the availability of bathrooms. All my travel books say you have to pay to use a public bathroom and tip the attendant too. I am lucky that frequency/urgency are not my biggest issues. I keep thinking what if I get caught without any change on me?

Taramc · 07-05-2007, 01:27 PM

You guys have no idea how much you have helped me today. I've been sitting here at work, just freaking out and unable to concentrate on my job. These first five months have been hell, and I'd never experienced ANY kind of bladder trouble before that hot tub bacteria got me. Thanks again for everything. I was wondering if Benadryl would help... now I know.

Allies40 · 07-06-2007, 10:18 AM

I seem to be worse in the morning and better as the day goes on. I seem to have to pee every hour and a half in the mornings, then by the afternoon, I usually go 3-4 hours between going to the bathroom. Then in the evenings, it sort of depends on what I've eaten during the day on my level of pain and frequency. I guess everyone's IC is different.
I'm SO happy that last night I made it from 10 PM until 6 AM before I had to pee. That's something I haven't done in 6 months!