Freaking OUT! My doc lowered my DOSE!!!

[IC SARAH-CPP]

Kara,
Please please have your husband call the doctor for you. I really think you need to do this. It is just not okay what he is doing to you! Cutting out your night dose totally? That is totally insane.
I am sorry but you need to become the squeekiest(sp?) wheel out there. I have had to do it before and it sucks but it needs to be done. Just call and call and call. Write emails, send letters, call the machine, etc. Also, write down your pain scores in a pain diary and bring that with you when you go in again. If he doesnt listen over the phone, make another appt to see him. I know this is very very hard but you have to keep fighting. It is your life and your pain and you are the one who has to live with this.
And I think if your husband calls in for you, then it will maybe make the doctor see how serious you are and how bad things are for you.
Please hang in there sweetie. We are behind you all the way.
Love Sarah

[DaniBelle]

I would add one thing to.....

IC-SARAH-CCP's wonderful suggestions....go to the icn info sheets where researchers and doctors state how I.C. sufferers experience pain akin to the pain of patients in the last stages of renal failure and also pain as painful as those of cancer patients. I don't think most doctors understand this....actually I know most don't. It also goes on to state that because of the unending excruciating nature of the pain, many feel so hopeless as to want it to be 'all over'. I've been at that crossroads before. THIS IS A SERIOUS ILLNESS THAT DEVASTATES EVERY PART OF A SUFFERER'S LIFE!! This sheet is somewhere on this site....look on the main page or in the handbook on info about I.C. for newcomers. I know your doctor needs to read this (even if he gets his BVD's in a wad thinking the patient and her husband know more than he does....GOD FORBID!). Some are soooo defensive about it. When I gave my current (soon to be ex) pain mgt. doc some info about I.C., she about bit my head off. I just thought it would help her because she kept referring to my 'condition' as 'Interstistiosial Colitis". She couldn't even pronounce it or know what it was!!!!! This was after months of being under her 'care'. Anyway....do what Sarah says. As my grandmother used to tell me, when you feel strongly about something and know you are right, stay at the person you are trying to convince night and day until they give in. It works! You don't need to suffering! Get your hubby to write out what he's going to say (to make sure NOTHING is left out), call the doctor, read it to him, and if he's still stubborn, threaten to go to the ER. They don't like that, because it makes them look like they can't treat their patients correctly. News travels fast in those circles. I wish you the best and hope your next post is a "He called it in for me and I'm feeling so much better!" one.

Prayers coming your way!


DaniBelle

[Kara Isabel]

Thanks Sarah and Dani!

That's what I'm left thinking is cutting out my night dose IS nuts!!!! I mean, I don't want to be one of those "pain in the rear" patients, but I also don't want to be MISERABLE! I'm so terrofied of the nights to come!? And I just don't understand why the rug was pulled out from underneath me.

One thing that comes to mind, is that on April 1st, he is no longer accepting my insurance??? Could be be trying to wean off all the BCBS patients????? Or is that ludicrous?

And there is NO OTHER pain clinics around here that do opiate treatment, just ONE other clinic, but I've heard from a few of their patients that all they give are ultrams and nerve blocks!

My husband just told me I looked like "crap".......Yeah, that's what crying ALL DAY does to a person

love,
Kara

[Moonheart]

Thanks Sarah and Dani!

That's what I'm left thinking is cutting out my night dose IS nuts!!!! I mean, I don't want to be one of those "pain in the rear" patients, but I also don't want to be MISERABLE! I'm so terrofied of the nights to come!? And I just don't understand why the rug was pulled out from underneath me.

One thing that comes to mind, is that on April 1st, he is no longer accepting my insurance??? Could be be trying to wean off all the BCBS patients????? Or is that ludicrous?

And there is NO OTHER pain clinics around here that do opiate treatment, just ONE other clinic, but I've heard from a few of their patients that all they give are ultrams and nerve blocks!

My husband just told me I looked like "crap".......Yeah, that's what crying ALL DAY does to a person

love,
Kara

Did you read my post Kara? There is an important reason for my question? If you can take part of your dose in the morning and part at night you hopefully won't suffer as much as if you took then all in the morning. I hope I didn't offend you or anything, but I'm just hoping to find a way to help you get through this until your appointment.

[Kara Isabel]

Moonheart! I'm sorry! I meant to tell you that in my last post but spaced off (my head isn't together right now at all)

I was taking 3-4 30mg MsContin a day, the 4th dose was for really bad days, but most days I just needed 3 doses.

The MsContin tends to work for about 5-6 hours for me, and I wake up at 5:30 and take one, then again around noon, and they will wear off around 5-6pm.

I've thought about maybe trying to stretch the day dose and take it around 3pm? But I'd still be in pain most the night......I just don't know!

Any ideas?

Thanks honey!
Love,
Kara

[IC SARAH-CPP]

Well if you look like crap, then your hubby should call in for you! Can you start right now and look for another place to go? I know that is the last thing you feel like doing but if he is going to persist in this terrible treatment, then he is leaving you little other choice.
I also was thinking that maybe a PCP or even a gyn would help manage your pain. My ob/gyn was the one who manages my narcotics before I went to the pain clinic. And my PCP offered to do it if the pain doc wouldnt. I would try anyone and everyone. Please dont give up!
I dont get why he is doing this either. How long have you been on the MSContin for? I dont get why you just cant go back to how it was before It really sucks that he is being so bullheaded.
Sarah

[Moonheart]

Moonheart! I'm sorry! I meant to tell you that in my last post but spaced off (my head isn't together right now at all)

I was taking 3-4 30mg MsContin a day, the 4th dose was for really bad days, but most days I just needed 3 doses.

The MsContin tends to work for about 5-6 hours for me, and I wake up at 5:30 and take one, then again around noon, and they will wear off around 5-6pm.

I've thought about maybe trying to stretch the day dose and take it around 3pm? But I'd still be in pain most the night......I just don't know!

Any ideas?

Thanks honey!
Love,
RG

Oh that's okay hon! I just was worried I offended you somehow. Silly me!

I started having the same problem as you hon. Where my meds weren't really all that effective and not lasting very long. So I started taking 2x30mg in the morning when I get up, and then a second dose of the same at around 8-12 hours after the first. It lasts all night because I have enough pain relief to fall asleep and stay asleep. I hope it works for you.

It really does make a difference! It lasts longer and is FAR more effective! So maybe you could try that. You may want to ask your doc first, or not I guess with all the problems you're having!


HUGS! (((((((((((Kara))))))))))))

[DaniBelle]

Another suggestion...

is to call your insurance company, tell them what you are going through, be brutally honest and ask them to find you someone ASAP. I know most don't trust their insurance companies to care about squat, but when I was going through problems in finding someone to help me with the endometriosis, etc., they had a special "patient support" type of program where someone worked on finding me help and believe it or not, called me just about every day, emailed me, etc.. and was like a friend checking up on me. BCBS are the ones who end up paying most of the cost of your doctors bills, so it's in their best interest as well for you to find someone promptly to help you get better AND to get with a doctor who UNDERSTANDS! He may not be right around the corner and you may have to drive an hour or two, but at least you would know there may be help within reach. If you weren't in VA, I would suggest coming to ATL (Lawrenceville)for treatment. My Gyn who treats most all the IC patients this side of town, is arranging for a specific pain mgt. doctor be referred only to him, because he is very experienced in knowing how to treat not only the pain of IC, but also all the emotional baggage that builds up through the years (he is a psychiatrist too). I don't necessarily feel like I am depressed enough to need an antidepressant, but it sure will be nice to be able to talk to him about the effect this disease has had on every area of my life. My current doctor sounds like a carbon copy of your current one. I have my Tuesday instillation appt. tomorrow and I'll ask my Gyn if she has a list of doctors close to your area who could help you. Other than this, try what Sarah suggested, breaking it in half, also, try taking about 500 mg of Ibuprofen (or more) before bedtime. I have been waking up for the last 2 months with awful FM pain and IC pain. I had to wait about 10-20 min. before I could get out of bed. I've never liked taking Ibuprofen because it never seemed to help at all. I ate my words this morning, because I had put a bottle of IBU by on my bedside table and upon waking (in pain), I took about 600mg of IBU. Within 10 minutes, I was able to get up with much less pain than usual. I don't know if this will help you, but try it (you may already be doing this). I had said for years that IBU NEVER worked for pain, but somehow this morning, it helped me enough to be able to get going and help my boys get off to school. I really hope you feel better soon and ask your hubby for an all over massage until you can fall asleep. He sounds like he's very supportive. I'll be praying you get relief soon!

DaniBelle

Thanks Sarah and Dani!

That's what I'm left thinking is cutting out my night dose IS nuts!!!! I mean, I don't want to be one of those "pain in the rear" patients, but I also don't want to be MISERABLE! I'm so terrofied of the nights to come!? And I just don't understand why the rug was pulled out from underneath me.

One thing that comes to mind, is that on April 1st, he is no longer accepting my insurance??? Could be be trying to wean off all the BCBS patients????? Or is that ludicrous?

And there is NO OTHER pain clinics around here that do opiate treatment, just ONE other clinic, but I've heard from a few of their patients that all they give are ultrams and nerve blocks!

My husband just told me I looked like "crap".......Yeah, that's what crying ALL DAY does to a person

love,
Kara

[Kara Isabel]

Thanks for the ideas Moonheart and Dani

I think I will be a "sport" and try this for a few days and then I'll most likely call or have my DH call them.......he's really flipping out over ME flipping out.

My daughter just came home and took one look at me and started crying! Its pretty obvious I'm a total wreck, and I feel really bad that I'm such a high-health-maintanence mom!!!!!!!

love,
Kara

[Moonheart]

Thanks for the ideas Moonheart and Dani

I think I will be a "sport" and try this for a few days and then I'll most likely call or have my DH call them.......he's really flipping out over ME flipping out.

My daughter just came home and took one look at me and started crying! Its pretty obvious I'm a total wreck, and I feel really bad that I'm such a high-health-maintanence mom!!!!!!!

love,
Kara

Awww...I'm sorry... I totally understand where you are coming from. It's so hard watching other mom's "keep up" with stuff and organizing their kids and all to help around the house.

[SandyRN]

Kara, I'm so sorry you're going through all of this. It really makes me angry to see yet another pain control doctor (using that term VERY lightly) do this to another vulnerable pain patient.

I really do think it would help if your husband called them and said that you are a total wreck from being in pain and he felt he had to call and say something on your behalf. OR, make yet another appt and have him come with you.

Whenever I feel vulnerable with a new doctor or when I'm asking for a dosage increase I take Tom with me, every time. He always backs me up and tells the doctor my symptoms, or that my pain level is off the charts.

I'm just soooooooooo sorry!