always in a flare?

[SusieQ045]

hey guy i know that ive written on here alot but i dont know where else to post this. i am always in pain. it doesnt go away. it doesnt get better. i feel horrible all the time. i take pain med's which seem to help for a little bit but once they wear off im back where i started. does this happen to anyone else? i now people talk about having flares but when you arent in a flare are you in pain? it doesnt matter what i eat i hurt. i just wish that i could go a whole day and not be in horrible pain. and ive been in pain since May. so ive been in constant pain for eight months. im on percocets and morphine. what else medication wise can i take? thanks

[Babs RN]

Susie,
Don't worry about posting, that's what we are here for. I have 24/7 pain and recently started oxycontin with percocet for breakthrough pain. I also have some low dose Valium for bladder spasms. Of course like a few others the holidays have screwed up getting into having another script written for these so I will have to tough it out till Friday. I have heard of the Avinza but don't have any personal experience with it. Let me know if I can help.

Hugs,
Barb :grouphug:

[SusieQ045]

does the oxycotin seem to help. i just posted in pain area, that morphine for some reason or another just doesnt work for me. i dont know why. do you have any side affects from the oxycotin? thanks for your help

[Katrina]

People seem to think of flares differently around here. For me I think a good description of a flare is anytime your symptoms are worse than your norm. (thus if you don't normally have symptoms any symptom is a flare) You certainly would not be a lone in having constant pain or chronic pain with IC. My constant symptom that after 5 years of treatment I still have is a feeling of having to go. In the beginning I was in constant severe pain for many, many, many monts...it took a while to bring that down to minor pain constantly and a bit longer before pain was no longer a constant symptom.
I am on a huge amount of treatments and alternatives to get to this point.
Since you are on some very strong pain meds you may want to try different kinds of pain treatment such as a anticonvulsant like Neurontin, Tegretol, and the like, Or antidepressants.
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies


http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

[SusieQ045]

well if a flare is more pain that you are usually in im in trouble. its so bad that i can barley walk. im just out of ideas. i just want to scream.

[Babs RN]

Susie,
Yes, I find the oxycontin works pretty well, we are tweaking the doseages right now.

Hugs,
Barb :grouphug:

[dbdab]

Hi Susie,
I feel so bad for you that you are in such pain. I had similiar pain earlier this year. I was at the point that I could barely walk or get out of bed (except to go to the bathroom of course). I just have a question, how long have you been taking Elmiron? I started to have some relief about 3 months after starting Elmiron and went into a remission for about a month & 1/2. My symptoms came back again at the end of August, but not as severe as they were earlier this year. Also, I found that I was in extreme pain whenever I was constipated which was pretty often. Have you had trouble with constipation? Deb :)

[SusieQ045]

i havent had very bad constipation, ive had it ever once in a while, but ive been elmiron for about four months. i honestly dont see a difference. i feel the same. just sick of being in pain. im sure everyone knows how that feels.

[dbdab]

I really do know how you feel. I'm sure we all do too. It is so frustrating and I think my doctor has pretty much given up on getting me any better. The only thing I can suggest is keep trying other things and take any info from everyone here and on this website and the ICA website and suggest things to your doctor. I suggested things to my doctor that I don't think he would have let me try if I didn't. Biofeedback seemed to help me somewhat as well. There has to be something out there that will give you some relief. :hmm: I know you are on so many meds already. My heart just goes out to you. Try to hold on as best you can. Do whatever you have to do to take care yourself.


Deb :grouphug:

[amber sevy]

I do know what you are saying I can not remember the last time i had a pain free day. Life gets very hard when you feel you have to make your family understand why you can't get ou tof bed except to go to the bathroom. I just wish i could catch abreak soon. I will keep you in my prayers. If it wern't for my husband who is the best i don't know what i would do. He even moved one of our computers next to our bed so on those days that i can't deal I can still talk to all of you.

[marsi4]

Count me in too. I've been in constant pain for a year. Recently my pain has decreased somewhat but I still need my pain meds and are not getting much relief. I'm really tired of being in pain I wish I can have surgery.

Marsi4

[DanaF]

If you don't mind me asking, is this the beginning of your IC? did you have any symptoms before or did this come on suddenly?

[amber sevy]

I have had IC for about 10 years but i would say that 1 1/2 years ago I got to the point that it is a part of every part of my life. I am not able to do the things I once was able to do because of the pain. I will never let go of the hope that i will find what will help me.