Pain control

[alabama]

Hey everyone! I am new to this message board thing, so pardon my ignorance about it. I have had IC for about 4 years now, and it just seems to be getting worse. I have tried distentions, DMSO, interstim, and all the medications know to man. Right now I am just barely making it through the day. I have a pretty stressful job, and sometimes living with this disease is very tiring. I have had to take Lortab for a while now, and it barely helps me get through. I feel very guilty calling the doctor's office for refills, but I just don't know any other way to get through the days right now. Can anyone out there tell me about how you control your pain. Any suggestions would be wonderful.

Thinking of everyone!

[ICNDonna]

The things that have helped me most were hydrodistentions, DMSO, antispasmodics, pain pills as needed, the IC diet, Prelief --- and I quit smoking 20 years ago, which made a huge difference.

Donna

[icnmgrjill]

Hey Alabama,

Well, the most important thing that you can do to control your pain is to not irritate your bladder further. I used to have horrible pain every day and now I don't. I relate that success to learning about diet... and stopping the sodas, coffees, teas, juices that I was drinking at the time.

It seems like every week, I talk with a patient who calls our office in pain and/or tears only to discover that they are drinking decaf coffees and/or sodas. Just happened last friday with a patient who had "tried" all therapies including interstim.. only to discover that noone had ever told her about diet. Turns out that all she drank during the day was coffee and soda. Had no clue that even decaf coffee was absolutely devastating to an IC bladder.

But, I also had to learn about better pain control. For example, pushing through the pain is, in my opinion, a horrible mistake. Stopping, even for ten minutes, to give my body and muscles a chance to relax (and stop the painful spasms) is very important.

I also catch my pain early. I never wait until I'm crying before I use my medication. I use a tiny amount of meds very early into the pain and, nine times out of ten, can stop the pain within an hour. In fact, that's exactly what I did yesterday on a car trip to San Francisco. Had sharp pain for about 30 minutes, used 1/4 of my pain pill... and whammo.. an hour later... I had no pain for the rest of the day and had a lovely time with my sister at a convention. Please remember, though, that not all pain pills can be cut in half... and that you must ask your doctor/pharmacist if you can do that with your medication.

We have a several good pain resources in our patient handbook at: http://www.ic-network.com/handbook/

Jill O.

[mayray518]

welcome alabama

[Dixiefireball]

just wanted to add my welcome to you to the icn family.
a good site to read is www.ic-network.com/handbook.

[crystilclear]

:welcome: sorry to hear you're having a hard time. I think a lot of us have problems getting pain meds. I hope you find a doctor that can help soon. There's lots of info in the patient handbook. Katrina compiled a list of pain relief that are used by a lot of us and you might want to check it out too. I hope you get the help you need. Take care - Chris

[Iris]

Welcome and sorry you are in so much pain. I know how hard it is to live with it each day, and cope with daily life. Katrina has posted a great list of things to help with pain relief, as one of the gals mentioned. For myself, I am on several meds, and do have pain medication for when needed. I do the same as Jill and do not let the pain get away from me, I used to, and suffered. Now I take half of my pain pill, as soon as I feel pain coming on, and it really helps. The patient handbook is very informative and helpful in dealing with IC. Keep us posted as to how you are doing, welcome hug Iris. :hi: :welcome: :flower:

[alabama]

Thanks everyone for all the support. Things are not getting better I'm afraid. I tried to make an appointment with my doctor, and told them how poorly I was doing. They only thing they said was, "We can get you in, in about two and a half weeks", and" Are you sure you have your interstim on ? How frustrating!!!

Frustrated and suffering,
Alabama