Remember my dr cut my pain meds off? Well he had a change of heart today! :)

[ibtracy]

:) Hi all. I was so nervous to go to my appointment with my latest MD that has been treating my pain so well over the past couple months and then all of a sudden decided earlier this week to cut me cold turkey. Of course the withdrawals symptoms were starting to appear today and my youngest daughter woke up at 3 a.m. and decided to stay awake for the day (ugh!). Anyways, at the appointment I shared a book on IC pain and it explains that most patients on a long acting opiate such as Oxycontin that I'm on, should also be prescribed a rescue/breakthrough med to be taken when the long term drug wears off and the time the next long term med dose is. We talked a little more and he said that I know more about IC than he does. So he agreed to re-prescribe both my Oxycontin and my Darvocet for breakthrough meds. I did alot of talking but when I walked out of there, I felt I had accomplished something great. Maybe with the knowledge that I shared with him, I might help a prospective patient in the future and save her the agony of begging for pain medication if she's really needing it. There just isn't much knowledge in this area of the US on IC and what it all entails, especially the chronic and severe pain that some patients like me experience with it. What was a bad situation a few days ago turned into a great day. Not that I want to be on these meds, but I need them to function and be as close to a normal Mom and wife as I can to my family. I did alot of praying and thanks to all of you who supported me when I was so down the other day.

Sometimes getting the help you really need and deserve can be so exhausting. I'm gonna head to bed, but had to share my success story with my IC family! :kiss: Again thanks for all the support and replies that you all gave me the other day. I'll try to be there for you all when you need a shoulder to lean on.

Love,
Tracy K.

[Prissie]

Good job! I think we will have to speak up more to get the word out about IC. I am always amazed at the number of doctors that have never even heard of IC.

[dancemomof2]

good for you Tracey, I am glad he listened to what you had to share.

[Bianchi]

I am glad yo could work this out with your Dr. I am just recovering from a UTI and tremendous flare. I did have the instills, which helped, but sometimes I wish I had something for the breakthrough pain. My URO is very nice and knowledeable about IC, but does not give any kind of pain meds.
Bianchi

[ICLori]

Thank goodness! I am so glad that he is being reasonable now.

Blessings, Lori

[SrMaggie]

What a wonderful example for all of us. It was so good that your doc gave you the time to talk. Sometimes they rush through and don't really hear what folks have to say. You were so prepared, he should be grateful to you for giving him another perspective. Thanks.

[ibtracy]

Thanks for your supportive replies to all of you. :) Of course after having such a successful drs visit yesterday, I woke up this morning with a full blown flare AGAIN. :cussing: Thank God that I now have something to take. I'm gonna lay down with my corn bag and rest today.

I sure hope that others that may be going through this, get the help and blessings that I did yesterday. ;)

Love,
Tracy K.

[cass2376]

Hi Tracey,
I'm so glad to hear about you getting the relief you deserve!!! I know cause I am also a chronic pain patient w/ IC and Fibro too. I live in pain EVERY day!! But at least now, I thank the Lord on my knees everyday for my Docs who treat me w/ my pain meds and have REAL compassion towards me!! I am on10mgs 3Xs a day of Methadone for chronic pain and 1-2 vicodin for breakthrough pain every 4 hrs as needed. I only take the vicodin when I'm flareing or just had a DMSO instill which is every Tues., this causes severe burning, pain and bladder spasing for a couple of days then it gets better. I truely pray dailey for all of you out there w/ no pain management at ALL!! My #1 prayer is that each doc learns about chronic pain or just IC pain flares. I know some of you would not need to be on pain meds dailey but once in a while at least. I pray that they learn about this desease for real cause if they did they WOULD prescribe some form of pain meds for you hurting women and men out there w/ no help. My heart truely goes out to you!! Hey, look to Tracey for insperation, she had to fight for her relief, and very nicely done, by the way :) :woohoo: Maybe some of you can do the same. Cause a lot of the time it is just the Docs just don't know enough on IC to treat it or understand it. Good luck to all you out there through this rough journey!!! Hang in there and don't give up, fight for your relief!!!! I did and others like Tracey too!! I know some of you have already tried and did not secseed. Don't give up maybe you can try something like Tracey did, bring documents in and the handbook and just inform them about IC. I know, it is totaly easier said than done, right? But if you don't at least try it you will never know if it could have worked. If it still did not work than keep looking for another Doc that IS willing to help you!! Everyone who suffers with pain DESERVES to get relief!!!!!!!!!!!!!
God Bless you all, hang in there, and take care, Cassandra :angel:

[Savage90]

Great! It seems many doctors need this type of education these days.

[mayray518]

In the old days of IC (1992) they wouldnt give me one thing for pain so I am glad things have progressed. I know you are still having day-to-day frustration because of the IC but am so glad that pain clinics are paying for attention to the pain we are "really in." Of course all of us would choose a cure over the pain meds any day, right. anyway, I am glad you were assertive with your doc.

[traceann]

Happy to hear you were able to "educate" your doc on the various pain aspects of IC! That's a wonderful service, as you said the next patient that may walk in his door! I am sorry to hear you are feeling yucky, but glad you have the meds you need to get through it! Hope you feel better soon!!!

[Bianchi]

When I asked my URO about some pain meds (just a few pills until I got over the UTI an flare) for break through pain, she said she does not believe in it. She said too many people get so addicted and need more and more, and besides that, she is afraid they (DEA) may investigate her. That may all be true, but what are people supposed to do, when it really gets bad? On one hand I dont want to take strong pain meds and get used to it, its just when I felt so bad, I wish I had some. yes I recovered and I am doing reasonably well, and I did have the tramadol from my Rheumatologist, thank goodness, I dont know what I would have done without it.
Bianchi

[jazz]

Tracey, I'm so glad you got him to see the "light"!!! I know the frustration of what you went through. It is so hard to get regular people to believe what we feel. Alot of people don't even know what IC is. You go to the ER and the Drs there don'y know what it is. So most important to me is that my Dr. know and understand and that you have an open communication with them. We have to do the educating sometimes!!
My Dr. is great. I was going to a Dr at this office since 1991 and he retired 1 1/2 yr ago and this new Dr came. He specialized in IC and put in Interstims. So I became his patient. My first office visit was totally different. He did a bladder US to check my residuals. My other Dr never did anything to me. I had to beg for meds. I was lucky over the years I had neck and back trouble so I got pain meds for that so I would save them for flares .. I even worked in the ER as a nurse and watched many people come in with pain and the Drs just brush them off. There are so many drug seekers out there that it ruins it for us that are in real pain! I even went to work one night in a bad flare..I got to work earlly so I could be worked up as a patient and be seen. They of course wanted urine, they dipped it , it was normal(of course) so they figure I don't have a UTI . I try to tell them about IC and what it is about. I tell them just give me some antibiotics and a script for a few days of pain meds until I can see my Dr. Finally a old Dr in the ER saw me in one of the rooms and aksed me what was I doing?? I told him I was in a bad flare from my IC. He knew what it was and sympathized with me. I told him I had to work tonight so I couldn't fill any scripts till tomorrow. He called the Pharmacy and had them give me a Levaquin pill free so I could work tonight.! Then he told the other ER Drs. about what IC was and how to treat it. He told them my dip urine would be normal and all the other things about IC. I was in shock he was so sympathetic to me because this old ER Dr. we had was such a grouch most of the time so when he stood up for me I was amazed!! I could barely walk as my bladder hurt so much, but went to get my pill . So it ended up being a good experience for me.
My Dr now asked me what I was taking and told him Vicodin when I could get it. He started me on Oxycontin 20 mg every 12 hours. It was amazing at how well it controlled my pain and I don't have to worry about taking alot of tylenol products. I later went up to 40 mg every 12 hours. Well the past months that hasn't helped as much, I find it doesn't last only 8 hours. So we added a Vicodin one a day if needed for breakthrough pain. I asked him about taking the Oxy every 8 hours.. I told him about this message board and I had seen alot of people on it every 8 hours , and then we could drop the prn Vicodin. So he said sure, whatever you need. So since I did that my pain control has been great. So communication is most important with our Drs.
I am blessed to have a understanding one.

Nancy

[windwalker]

Not happy about your flare, but very happy you were able to teach your doc something very important about IC! Good job!!!

[jeanniebug]

Tracy,

I'm curious..what is the name of the book that you showed your doctor, that had the information on pain meds in it? And where did you get the book?

Sounds like something I might want to keep handy for my military moves and upcoming change of uros. :grouphug: