in pain all the time

[bcarroll]

i have newly been diagnosed with ic and i am not for sure what is actually going on with my body. the dr. does not seem to be able to help me. can anyone please help me to understand if what i am feeling is normal with this disease. i am sick all the time, in pain all the time, some times i can not even lift my right leg it hurts so bad. what do they do for this disease? i am on elmorian, hydrocodone is there anything eles for pain/

[tigger_gal]

what you feel is normal.. alot of the gals take elavil it is an antidepressant that helps with pain. I cannot take it. there also is hydroxizine that is anantihistimine for the bladder. usept/Urised/pyridium/pryelle for spasms. which most likely your bladder pain. I can only take the urised. I found out by accident tha flexeril helps my bladder pain too.
All the girls here are great I am sure they will give you tons of help.

[ICAmy]

I take Elavil (for the chronic pain), Detrol, Vicodin and I just started Ultram today. I've done DMSO instills, but they didn't seem to help. How long have you been on the Elmiron? I don't take it, but I do know it takes awhile to kick in.

I have improved quite a lot this past year and am functioning much better than before. Do you have a good Dr?

I did as much research as I could when I was first dx'd. I felt more in control the more I knew about this disease. Some days are worse than others, but I am able to function like a normal person again. I wish you luck! Things will get better.

This website helped me so much when I was at my worst. There are so many women with so much knowledge here!

Amy
:hi:

[barbour1]

i have had ic for years but i also had pain when i lifted my left leg i could feel some thing(driving the car any how had an altasound and they also found a pal ovarian cyst.Is it possible you might have one to?

[leelee88]

:welcome:
I am sorry you are in so much pain..
But now you know u have IC and yes it can cause all sorts of pain..
You can have pain in your stomach, pelvic, back, legs, your uterus, clitorious, I could go on , but I think you understand..IC can affect so many differant parts of your body..

There are alot of differant meds out there that can help, so ask questions get answers and learn as much about this disease as you can, and in time with the right meds you will be able to get your pain under control..
Well good luck to you and if you need anything just ask....:angel:

[Sarojini]

:welcome:

Have you read our Patient Handbook (there's a link at the top of the page)? It is full of information about IC, the treatments used, and some self-help strategies -- especially the IC Diet, which you should definitely try out if you are not already doing so.

:grouphug:

[sweetangel2080]

icamy,
can you use ultram and elavil together? My doctor gave me codeine instead as he said the interactions between elavil aren't good.

[leelee88]

Sweet,
My dr said the same thing, and so did my pharmacist, said elavil should not be mixed with ultram..

[barbour1]

is the ic diet posted here some where?

[laurahallie]

hi, welcome =). if you havent already been told by your doctor, elmiron takes 3-6 months to start working for the people that it helps. in a few cases i heard it takes as long as a year. so it wont help you right away, but there are medications that might help with the pain in the meantime that others have already mentioned.

if you feel like your doctor isn't helping you as much as he/she should be, find another one...it happens a lot. ive read many stories of people here who have had to seek out a knowledgeable uro.

[scott777]

Does everone in here have some sort of pain that requires pain meds? I've been living with this for over a year and have never felt the need for pain medication. I do have discomfort especially when the urge is strong, and some ache in my left groin that feels muscular but not very painful.

Scott

[barbour1]

Scott, not everyone, and as long as you don't need them your better off.Narcotics are hard on your other organs.Good luck!

[bcarroll]

i have been on elemorion since oct 3 and it doesnt seem to work. i have recently went to a new dr in another state because my dr. here doesn't understand why the procedures he has done has not helped. just in one visit the new dr. told me that the muscles around my bladder are so tense and they are spasum that he is not sure if that is why i am in so much pain or the spasums are from the pain of ic. i hope this dr can give me some relief.

[rachann]

:welcome:
Give your Elmiron 6 full months before you decide if it is really working or not. I prematurelly decided that it wasn't working and went off of it. I soon was miserable and realized that yes, indeed, it was helping. Ditropan and Elavil and Atarax have also helped a great deal. I ended up having to go to a pain clinic to get pain relief. Most urologists will not give narcotics for chronic pain due to ic. I take pain meds only when needed and it is a fairly low dosage. I take 5mg extended release hydracodone 3 times daily when needed. I do feel however, that the reason I don't have to take these everyday is due to the other meds. My advice would be to follow the ic diet and read The Survival Guide by Dr Moldin. Don't feel afraid to talk to your family and friends about what you are going through. They love you and can be a great shoulder when you need one. The ICN is also fantastic. These fellow icer's are amazing people. I have gotten such great support here. I agree with a past poster. If you ever feel like your doc isn't helping you adequately, search for a better one. I have gone through many urololgists. It is hard to find one that is educated enough with ic and is welling to help you find the best treatments. I wish you many pain free days!

[kari1980]

I take percocet when my pain is bad, it seems to work the best for me. I only need a half a pill to take the edge off, if it's really bad then I take a whole one. I don't think I could get through doing a lot of things without it. IE: long car rides, not having access to a bathroom, even shopping sometimes. It's just enough to take the edge off the pain that I can last alittle longer without having to pee. Most urologists I've been to though won't prescribe it for IC, so my internist is the one that will usually give it to me..Thank God because I don't know what I would do without it...I don't understand why the urologist won't prescribe it when they are the ones diagnosing us and know that it is ligitimate PAIN...You won't get addicted to it if you are truly using it for pain, so I don't understand their reasoning and it makes me so mad that instead of giving us something to truly help us, they would rather we suffer.......Anyway, if you can get your doctor to prescribe you percocet, it really helps take the edge off the pain..

Feel better,
Kari

[sami4]

If I were you and as you state your doctor,"Dont know what to do for you?"
I would get another doctor who does know what to do for you. You need to see someone who has experience with IC, and is willing to try to help you.
Sammi

[barbour1]

For some reason i think the specialist like you to get your pain meds from your primary phycian.Some people really are addicted to narcotics ( people that don't need them , and there is a wide spread of abuse all over the country,Exspecially perscibed narcotics .Some people really make a good living exploiting the Doctors .It took me years but now my phycian and myself have a trustfull relationship .I had a bad flare and ran out a week early and she actually called them in for me god bless her she saved me a lot of suffering..

[Mommyof2]

I understand what you mean by that, I had to change urolgists because my last one kept telling me that my pain was mental and I wasnt in pain and wouldnt give me anything for pain he just kept giving me antibotics, although I dont know if I have IC my doctors are almost certain I do from my symtoms,I need to do a bit more testing, my new uro will prescribe pain meds if needed..I take percocet when the pain is unbearable which is about once a month.

best wishes and hope you can talk with your doctor about pain methods that will work for you, have a nice weekend :)

[jmkeefe001]

I've tried Darvocet (that was a joke) and in the past Ultram then I am now on Vicodin but only for the week before my period. It doesn't work very well. :-(

It is ridiculous that we are left in mind numbing pain just because Drs won't write for the pain from IC or PFD.

I'm going out of my mind trying to deal with the pain.

What is stronger than Vicodin?

(I can't take extended relief ANYTHING due to a gastric bypass I had done)

[Mommyof2]

I think stronger then vicodin is Percocet, I take vicodin and percocet. when the pain is just really bad and not disabling I take Vicoden but when the pain gets unbearable and when I feel I cant control the pain without having to go to the ER I take perocet. it really does help on my bad days, seems the worse days with pain is right before my period. hope this helps! have a nice week and best wishes!!! :angel: :) :smile tee

[Babs RN]

Have you considered Duragesic patches? They contain Fentanyl and come in 25 mcg, 50 mcg, 75mcg, and 100mcg and can be used in a combination of the strengths under close supervision of a physician.

Hugs,
Barb:smile tee

[jmkeefe001]

I'll be cking my insurance tonight to see if they are covered. Thank you to everyone for the help. I don't know what I'd do without this site.

Melody:bow:

[Moonheart]

I will write more about my cysto later, but wanted to say that the doc wrote out a script for Percocet afterwards. Just as I was about to leave with it he called up and told his nurse to cancel it because he remembered that I had morphine. :( The nurse had given me two already and I got much better pain coverage from that and the Fentanyl she put in my IV than the MS Contin ever does. :(

Oh well. Cysto went very well. I'll write that in a little bit. :) Thanks for all your prayers.

:)

[Berkshire Road]

Bcarroll --

My advice to you is dont' spend one more minute worrying about what might or might not be "normal" for IC. We all have different bodies, different pain thresholds, different reactions to meds, etc. What you need to concentrate on is finding something that will work for YOU.

I have pretty much constant pain, and it seems to concentrate in my left hip for some reason (which was one reason it was so hard to get a diagnosis, but that's another story.)

I'm currently taking: A narcotic and a muscle relaxant together, which gives me much more relief than either alone. These can make you sleepy or woozy, but a lot of people find they can adjust and the side effects lessen. Plus elmiron, cymbalta (an antidepressant which is thought to be good for chronic pain), neurontin, and atarax at night, which helps me sleep and cuts down on nighttime urination. It's probably depressing to hear that I take all these meds and I'm STILL IN PAIN, but believe me, it is a lot better than when I dont' take them!

Other things that can really help: heating pads (many of us have such close relationships with our heating pads that we've given them names; mine is Claude http://www.ic-network.com/forum/images/smilies/smile.gif
:) ), relaxation therapy (you can do this on your own: light a scented candle, play some soothing music, etc., or get professional help.) My shrink has done hypnosis with me and given me a guided meditation tape. If I can relax enough to let it guide me, it works pretty well. Took some experimenting, but I've learned to do the tape at the time my muscle relaxant and pain meds are at peak efficiency (doctor's idea!) The other great relaxer in my life is my dog Rusty, who lies next to me a lot and just soothes me with his presence and love. I DON'T recommend getting a dog if you're nervous around them and/or don't have someone else living with you to help with its care, but pets can be a godsend. Look for an animal with a calm temprement!

You've found a great support community here and I'm sure you'll get lots of other ideas and suggestions. And some of them will work for you, and some won't -- and that brings me full circle to the very first line in this post, so I'll stop now.

Wishing you well,

Carolyn