depressed and pain is spreading

[ophelia33]

Hi, I try to be positive w/ IC but I am really feeling it today. It seems my pain seems to be spreading from my usual right side pelvic pain to the left side of my pelvis, over my bladder and over top of my belly button and "down there" from the front to the back. It feels like someone lit a fire in my pelvic area. I have been trying to stick to the IC diet and have been cooking more meals still staying w/in the "usually ok" list instead of just having plain chicken and a plain potato w/ plain veggies which is plain depressing (it has been 2 months on the IC diet w/ a few days of slip-ups b/c my diet was too strict).

Trouble is I'm still having pain all day and it seems to just be getting worse instead of better.:cussing: The pressure and frequency/urgency has subsided a lot w/ instills and I don't know if the elmiron is even working yet since its only been 2 months. I am not prescribed anything for bladder pain and ibuprofen seems to make things worse. I do have more pain if I stray from the IC diet so aside from not eating at all, I just don't know what to do.:headbang: Honestly, tomorrow I'm going on a bare-bones "diet" of chicken, pears, potatoes, lettuce, corn, broccoli, cauliflower, white rice. If that still gives me pain, I guess I'm just not meant to eat.:confused:

I am just really tired of the "down there" burning feeling.:( Its a burning coming from the inside that I just can't explain except like someone started a fire in my pelvic area.

My thoughts are going in to "dark places" and I have started an anti-depressant w/ mood stabilizer 8 days ago. (I need the mood stabilizer b/c anti-depressants make me wacko). I don't know if an anti-depressant will make me happy to feel like my private area is on fire all day long. (Nothing hurts from the outside).

I've been going to physical therapy and it hasn't been helping the pain at all. I've tried elavil and couldn't tolerate it or other tricyclics. I didn't even ask my uro about pain meds b/c...well...she knows I'm having pain and I guess I just felt like an addict asking for them and I just don't want to be on them full-time.

I just feel so icky all of the time. I find no reason to get out of bed in the morning other than to go to the bathroom and take meds. I just don't understand this stupid disease. I HATE IC and I'm just not able to put on the smiley face. Thanks for listening. I just needed to vent I guess.

hugs to all of us,
Ophelia

P.S. This isn't a flare its more like a nightmare, altho I'm awake.

[Zygala87]

So Sorry Ophelia. Some times it takes as many as 6 months for Elmiron to really kick in. As I have said before in other blogs, Pain is like a snowball rolling down hill. The longer you have it the worse it gets. An addict takes pain meds to escape life. A person with great pain takes pain meds to live life to the fullest. Most Doctors won't give you pain meds unless you ask for them. I'm rather dumb about physical therapy. If I can barely walk to the back of a large store without my bladder screaming. How would physical therapy help? I think it would only cause me more pain. Just pushing the vacuume around the house has sent me to bed! Are you able to keep your bowels moving? That has been a pain problem for me. Would a sit down talk with your Doctor being totally honest as you have been here help you? Maybe she knows you are in pain but does not understand how life changing it is becoming to you? Wishing with all my heart BETTER DAYS ahead for you. Hugs, Ziggy

[ICNDonna]

Please talk with your doctor about something to help with pain. The antidepressants can help with pain as well. Our doctor explained that they can interfere with nerves transmitting the pain message to the brain.

Also, ibuprofen medications are a problem for many IC patients.

Warm healing thoughts,
Donna

[ophelia33]

So Sorry Ophelia. Some times it takes as many as 6 months for Elmiron to really kick in. As I have said before in other blogs, Pain is like a snowball rolling down hill. The longer you have it the worse it gets. An addict takes pain meds to escape life. A person with great pain takes pain meds to live life to the fullest. Most Doctors won't give you pain meds unless you ask for them. I'm rather dumb about physical therapy. If I can barely walk to the back of a large store without my bladder screaming. How would physical therapy help? I think it would only cause me more pain. Just pushing the vacuume around the house has sent me to bed! Are you able to keep your bowels moving? That has been a pain problem for me. Would a sit down talk with your Doctor being totally honest as you have been here help you? Maybe she knows you are in pain but does not understand how life changing it is becoming to you? Wishing with all my heart BETTER DAYS ahead for you. Hugs, Ziggy

Thanks, Ziggy,
So true, so true, about the pain meds. I've been told to take pyridium for pain. I have pyridium and urelle and, well, my pain is just more than pyridium and urelle are able to handle. I take urelle when I'm flaring for freq/urg and pain and it may touch the freq/urg but not the pain. I'm taking the elmiron religiously. I did get the thumbs up to learn home instills w/ my uro's nurse.

It is hard to say how much PT has helped. She uses a lot of heat in the beginning and end to try to relax the bladder and the surrounding muscles. The only thing that bothers me is it is heat on top of burning pain, so it feels weird at first but doesn't add to the pain so I keep going in case its doing something. It is worth a try if you may have PFD. I have a mild case of PFD so I may not see such big improvements in my pain.

Pretty soon, I will have to ask for something for pain. Maybe there is something not so strong that my uro will feel comfortable giving me. My bowels seem to be okay w/ a BM every other day but I do get terrible burning pain in my pelvis surrounding them. Don't know why, I'm not straining or anything. Sadly, I'm not sure anyone w/o IC really knows how life-altering it really is.

Thanks for the well wishes. I will work up to asking for something for this pain in the near future as I don't have an upcoming appointment w/ my uro anytime soon.

wishing us all many better days, hugs,
Ophelia:hi:

[ophelia33]

Please talk with your doctor about something to help with pain. The antidepressants can help with pain as well. Our doctor explained that they can interfere with nerves transmitting the pain message to the brain.

Also, ibuprofen medications are a problem for many IC patients.

Warm healing thoughts,
Donna

Thanks Donna,
I will talk this over w/ my uro at my next appointment which isn't for some time. I think she's hoping by then that the elmiron may start working. I just honestly think she doesn't want to start me on pain meds and is relying on elmiron, instills, and the pyridium/urelle, and PT. I will have to mention it soon--it is constant and wearing on me.

I have stayed away from the ibuprofen.

My psychiatrist does understand I have pain issues and she is trying to help w/ that and my depression. Unfortunately, we have to tread lightly in the anti-depressant area b/c they tend to give me hypo or mixed mania. It's not pleasant and usually requires a hospital stay to get me "normal" again. I am working on it though.

Thanks for the help and hugs,
Ophelia:hi:

[nottoc4]

I too have that belly burning.At first I thought Elmiron was causing it and I came off it for awhile. It only took a few months of not being on Elmiron for me to realize it wan't the problem. In the meantime my GYN sent me to a GI Dr. and after a CT scan,upper endosopy and colonoscopy He could find nothing wrong. I began to realize if I don't have burning pain when I lie down or stand up and walk but only when I sit, it may be a nerve that is pinched.IC never lets me off the hook if I'm trying to sleep or shopping or whatever.I got a donut pillow and it has reduced the buring by more than 50%.I went to the GYN and he did 7 more Elmiron instillations,and I'm taking 300 mg a day and I have not had a problem since. I still get the burning while I sit at the computer too long but the donut pillow helps a lot.

[ophelia33]

I too have that belly burning.At first I thought Elmiron was causing it and I came off it for awhile. It only took a few months of not being on Elmiron for me to realize it wan't the problem. In the meantime my GYN sent me to a GI Dr. and after a CT scan,upper endosopy and colonoscopy He could find nothing wrong. I began to realize if I don't have burning pain when I lie down or stand up and walk but only when I sit, it may be a nerve that is pinched.IC never lets me off the hook if I'm trying to sleep or shopping or whatever.I got a donut pillow and it has reduced the buring by more than 50%.I went to the GYN and he did 7 more Elmiron instillations,and I'm taking 300 mg a day and I have not had a problem since. I still get the burning while I sit at the computer too long but the donut pillow helps a lot.

Hi, I have a GI dr. appoint scheduled for august and I'm pretty sure now this is all pain from my bladder. I think my gyn just wants to rule things out. I get strange looks from drs. when I try to explain that burning pain but it seems you understand it well. I'm glad the pillow has helped you. I'm going to talk to my physical therapist today about it altho I'm not confident I'll get much help as she doesn't listen well and has the tendency to talk over me. She does that to everyone tho. I'm glad the elmiron has worked for you.

thanks and hugs,
Ophelia:hi:

[ophelia33]

Well...so much for "ask your dr.". Uro gives no one pain meds for IC. Still depressed and still in pain. I'm just going to start throwing up my food. I'm sick of hearing follow the diet from the uro's nurse. It's impossible to follow it to the T everywhere I go. I'm sick of punishing pain from non-IC safe food. I hate IC, I hate pain...this is quality of life?

No thanks.

[OrlandoP]

Ophelia, tell me about it! At least I can commiserate.

First, I wanted to tell you that the IC diet is GREAT for many, and useless for some of us. The only sure-fire trigger I have is MSG, and with that, I'm in a world of hurt. Aspertame as well, perhaps. I still drink coffee--denied myself of pretty much everything but Evian and rice for months with absolutely no noticeable benefit. You may want to reconsider whether it really helps you.

Second, the kind of pain you are in from what I understand really responds to TCAs and anti-convulsants. Has your doc recommended those? Do they interfere with your other meds, perhaps?

[OrlandoP]

Just a report of a pet peeve: it seems totally inhumane to me that uros don't give out pain meds. It's as if they don't understand the fundamental problem! Why is that, is it that pain clinics really handle pain meds? And the reports I am hearing on this board about Arkansas...it's barbaric to wholesale deny people necessary pain relief!

[ophelia33]

Hi, thanks for the reply. I cannot tolerate TCA's. I am currently on Tegretol. I just started it about 2 weeks ago. I hope the blood work comes back fine as it can do something w/ liver enzymes. It is an anti-convulsant and should help w/ nerve pain I'm told--so far not much help.

I'm starting to use more prelief in an effort to expand my fruits as I'm sick sick sick of pears and every other fruit gives me pain. I have to be careful though b/c I can't take prelief w/in 4 hours of my thyroid med. Fix one thing, break another...

The IC diet is too restrictive to follow for life. It just is. I've been there w/ the rice and water thing and, well, it's no way to live.

Honestly, I've never tried to get pain meds in Arkansas, but Pennsylvania is turning out to be just as barbaric. I can't get pain meds either. I'd like to be referred to a pain clinic but don't want to piss off my uro. It's hard finding a good dr. I think my uro just doesn't want the crap that goes along w/ prescribing pain meds. I don't know her reasoning, I just know I'm in pain and would like a break. It's not like I walked in her office and that was the first thing I asked for. I waited 2 months trying everything given to me. Now, I'd like some pain relief. Even if it's just a prn.

thanks and hugs,
Ophelia:hi:

[lunaticwoman]

Opelia,
I was upset with my uro yesterday for referring me to a pain clinic, but you just changed my mind about that! He I guess is truly trying to help. I haven't heard from the pain clinic yet to schedule an appt, but I'm sure I will next week.
I read the desperation in your post. I also started having the belly burning, along with the other things. I was just dx 3 weeks ago, and already severly depressed today esp.
I truly hope you find some relief and feel better soon. Thank God that we have this great forum and can talk to others that truly understand.

[mary124]

My Uro would only give me pain meds after having my hydros; now of course he can't because I do have a contract with a pain management doctor. Wouldn't know what to do without her, of course she informed me at one of my visits this year that she really doesn't know a thing about IC, just knows that its painful (do you think??) and the only reason she has me is because the doctor who I was referred to couldn't do anything for me due to my medical history (I take coumadin and my cardio doctor really doesn't want me off of it unless I have to-which I agree with)

[Bekah79]

:grouphug: Ophelia, I will put you on my prayer list.

Keep The Faith:pray:

[lunaticwoman]

Opelia,
WHy can't you ask your uro to refer you to a pain clinic? That is the BEST thing that has happened to me since this nightmare began.
I hope you are feeling better!