Pain Management

[baynVA]

Hi there, I just joined the ICN and this is my first post. I have was diagnosed with IC a year and half ago. Went through the worst treatments with an incredible saddistic doctor (who obviously knew very little about IC) but pretended he was well educated on our disease. I finally left him after he told me I had Chronic IC and that i would be in pain forever and might as well just give up on finding any relief. Hello! IC is chronic! haha Anyway, I finally took the bull by the horns and got myself new doctors and went on the IC diet took myself off half the meds I was taking up to 26 pills a day, lost some weight actually, and started to feel better. The isnt a day that goes by that I dont have pain though. My new problem is my new doctor (a urogyncologist) wants to take me off my maxidone and valium, and I am trying to explain to her that I can't go without. I am very careful and dont overindulge with my meds. I take my Elmiron religiously, and I have started physical therapy to work on my knotted pelvic floor muscles. This is a long way around to getting to my point, but does anyone have any suggestions, on how I explain to a doctor that we need our pain meds, that I can't just be taken off of them because I look better? This doctor is supposed to be well known in the IC field, and said she understood I needed them but now one month after being with her she wants me off my maxidone. I get so frustrated because I have flare-ups just about every 3 days, and I need them, and I dont want to sound like a junkie begging for a hit, but how do we get them to understand this is what we need to survive, to make in to the office everyday without losing my job, or to just be able to move freely? Is it worth it for me to look into finding a Pain Management Clinic, and if so does anyone know of a good one in Northern, VA? I am sorry to ramble on, but I am scared no one will prescribe me my meds, and thats my whole quality of life right now. Any suggestions? Thanks! :D

[jaime15]

Bayn,
Have you asked why she all of a sudden wants you off that med? And if it's a problem for he/she to prescribe it, ask if you should see a pain mgmt clinic...you know what's best for your body better than anyone else.
One thing you can remind them is it takes some IC patients forever to find a medicinal regime that works for them. I know you don't want to mess that up.
How long have you been on the elmiron?
I hope you find the support and answers from your uro and if need be, you can once again look elsewhere.
Hugs!!!:grouphug:
We are here for you always and welcome!!:hi:

[Dixiefireball]

first off no doctor can just take you off a pain medicine no way!! you will go into withdraws IF you agree to try to go off this medicine the doctor must understand and i'm sure he/she does understand this if not i would seek another IC doctor they have to wing you off these drugs you can't go cold turkey. our body is use to these drugs in order to help our pain.
please look at the thread and read the patients bill of right for pain. posted by me. i found this on the web by doing a search i knew the was a bill of rights for pain patients but i had to find it i don't have a problem with my uro treating me for pain he has always helped me even when he felt like pulling his hair out with me a year ago.
now i'm alot better but i will never be cure until there is a cure out. my ic is chornic also i fight the fight ever day i do my own dmso treatments at home and that has helped me more then anything i have ever tried i have been threw nerve blocks by a pain clinic that acted as if they knew about ic but yet knew nothing so that is when i truned back to my uro and said I would rather live my life in pain then ever go back to that place he started me back out on my pain meds perocets i take a 120 a mth just for normal pain if i have a uti i end up taking a heck alot more and have to call my uro back but he is okay with this because he knows i will not take no pain medicine from anyone but him! i fully believe in my heparin and marcaine dmso treatments i take on a daily one to three times a day without those i wouldnt be able to make it threw the day now when i go to the doctor they all tell me i look much much better and they didnt know what they was going to do for me a year ago they was about ready to give up but things changed for us.
i truely have my faith in the lord and my doctor my doctor is a good christan man and i believe the good lord helped him help me. that is when i truned my faith back over to the lord with the help from auntiedebbief she gave me hope she gave me the strenth. she was my guide to alot of things. God rest her soul.
just remember there is always hope and never give up the fight and don't let your doctor take you off those meds cold turkey.
if you would like to talk please feel free to email me dixie74@cherco.net or sassynsweet026@yahoo.com. sorry i ramble so much i get that way some times when a subject gets to my heart. and this one did because i have been there i have been there for my friends who has been threw this also. and it really bruns me up.
sending you hugs and prayers
Rhonda

[MakinIT]

It is a CONSTANT battle. I have told my doctor that I am toleratant to my morphine dosage, yet they he wont give me anything else for pain relief. I'm okay with that though, at least he treated me right away when I felt the pain, last summer. (My GP not uro) My uro at the time was kind enough to give me 14 vicoden tablets. Ha, Ha.....My current uro also has me on valium. So, they like to try and go and give you all the exciting nerve blocks and bladder installations. Different things work for different people, haven't found my magic "bullet"yet but a combination of things is working. Check out Pelvic Floor Dysfunction. Physical Therapy can help tremendously with that. I also take Yoga, and a little Tai Chi (very gentle) just to keep my pelvic area moving and keep myself from locking up. (I also like a therapy ball to roll on, or hug when things start getting crampy...it opens my pelvis, and actually feels good.....to me..someone else might think it hurts....it did until I started stretching and doing all the PT stuff to make me stop guarding my gut and strengthing my belly. Now I can lay on it)

good luck to you....I totally agree with Dixie that it is incredibly cruel to remove your pain relief with no gradual decrease or explanatation. Your urogyno sounds like a doc who is worried about covering her butt prescribing Class 2 drugs for a lenghthy period. (Ever since Rush screwed up, everyone is under scrutiny.):blink:

Tracey

[Teri]

My uro wants me to go off of my xanax and I just tell him that he CAN'T. Without them, I'd get NO sleep at night and during the day, when I am having a melt down, I'm sorry but I need that crutch to calm me down. I start thinkin' all sorts of stupid thoughts and the xanax gets me thru those fits.....and I'm not ashamed to admit it.
They calm my bladder better than anything else I've tried. I would definately say the I am physically dependant on them. I have been hospitalized for 4 days twice and was without them and was fine so I don't think that the physical addiction is too great but even if it was......I don't give a flying flute!!!!!!!!!!!! They work and that's all I care about!!!!!

Put up a HUGE fight:mad:

[ICNDonna]

I have to agree with much of what the others have already said. You need to have a discussion with your physician and if she is not willing to prescribe the medications you need, then a request for referral to a pain center would be appropriate.

Sending warm healing thoughts,
Donna

[MakinIT]

Hi teri

I know about that Xanax need...personally, I take 5mgs of valium 3times per day to keep my bladder calm and I do think it has helped keep me somewhat calm about my situation. (That and other "activities" such as counseling) My Uro and Pain doc have been in a constant battle with each other over my use of valium. Uro says most docs don't understand why IC patients have to have a strong muscle relaxant...think we take it solely for our mental health. Fortunately, despite being young and female, my uro is very well respected in Portland (voted one of the top 5 uros) and the pain clinic doc is letting that go for now.

I can understand their reluctance to put folks on these pills. They are hard to get off of. I'm on Morphine too, but the valium is what I "feel" when I take it. There are times when I'm really depressed or stressed when I'm tempted to take more, but I don't. (I did, however, take 10 mgs before my crown prep appt last week, made theappt so much better...usually I squirm all the way through a cleaning, I'm such a baby...I just looked kind of cross eyed at the dentist, didn't wiggle or complain at all...he laughed at me and said he gives his wife 10 mgs of valium before any major mouth work either. said, jokeingly, that I should always do that before dental appointments!!)

Good luck. Tracey

[baynVA]

I thank you all so much for writing back to me. I can't tell you how good it feels to be able to chat with others who UNDERSTAND what I am going through and talking about. It touched my heart to come into the office this morning and see your posts. You have given me the courage to call my doctor this morning, and ask her to set me up with the refills I need. This was a rough weekend, pain wise, and I almost didnt make it in this morning. I am glad I did. Wish me luck!

[Dixiefireball]

I'm glad you are going to call your doctor. we are here for you anytime you need us we care very much we are a family here a family that prayers together sticks together that is what my mother always taught me as i grew up.
please keep us updated on how you are
sending you tons of hugs and prayers.
Rhonda

[Julie Smith]

Doctors prescribe medications to help us, valium, xanax, pain pills and then just like that, they decide times up. It happpenned to me last month. Out of nowhere, when I saw my uro for 3mo. checkup he said no more valium (4mg. 3x day) no more maxidone (1-3 as needed). I couldn';t believe it. But since last appt. he referred me to pain specialist but I couldn;'t get in for another 2wks, my uro said too bad. Talk about anger. If I abused or didn't make my appts. perhaps I could understand but that wasn't the case. So, after a few days it dawned on me to contact my family dr. who gladly steped in and got me through the two weeks.

I just saw the uro last week bc i'm having a hard time peeing, thought i may have to go to hospital. anyway he saw me at 9am and did ultrasound which showed 179cc? that had not been emptyed. I explained to him it would usually be more bc it's early and i drink a lot. He didn't get it. anway, as in the first disagreement, we agreed to disagree about drug discontinuation. Apparently he had patients who were abusing and dr. shopping and took out on me.

We all must take care of ourselves and not let dr's. feel like they are god. Hopefully my new pain dr. will continue to work out, as will the nerve block next month.

Julie

[MakinIT]

That sucks but thank god your family doc is helping. How dare these docs get us physically "addicted" then suddenly stop? It is incredibly cruel. Mine won't go up anymore in dosage and refuses to go to a stronger (like a patch) but I am very medicated already. I know that. It's just that I'm tolerant so I think it's killling me.

good luck with the nerve block and at the pain clinic. I hated mine, but hopefully, yours will be better. Remind them you've been on Valium because they didn't give me enough versed, due to my tolerance. So it was like I was unmedicated. If I decide on a permanent block, I am going to make sure I am medicated appropriately.

Tracey

[Julie Smith]

I will be totally knocked out for nerve block bc you have to lay on your tummy for procedure and that's impossible.

Tracey- have you asked your pain dr. about a sacral nerve block? just a thought.