Hurting and Depressed...

[TiaTia]

Hi Everyone...

It has been months since I have been on here. A lot of changes, and it all looks great. I have been having a hard time. Was in the hospital for a bad flare, on a pain pump, etc. I decided that I wanted to try getting off all my pain meds, and it has been so frustrating. I wanted to see where my body was at without that, and I don't know how I feel about it all. I had been on Oxycontin, Percocet for breakthrough, and Xanax for bladder spasms. Because of the Xanax, I had to go into a psych hospital to get of everything, because of the dangers. That was almost two months ago. It was very hard. They acknowledged that I had a valid chronic pain condition, but said I was "still a drug addict," and treated me as such. I was so sick, and in so much pain, and they would drag me out of bed and tell me I had to go to groups and meetings to get treatment for my drug addiction. Three days after I got home, I had a seizure. They said it was a result of stopping the Benzos (they used Ativan to taper me off the Xanax), and put me in the hospital for a couple of days and back on the Ativan to retaper over the course of a couple of months.

I am so frustrated. Am in a terrible flare, and just sick. I have had constant diarrhea for over a month now, a constant headache, fever, and sweating. I called the place where they took me off the meds, and they said it sounds like my hormones might be out of whack. My thyroid has been all over the place, and I have lost over 20 pounds in the last month. I am scared. I see my Uro Monday for the first time in a couple of months, and am putting all my eggs in that basket, which I know is bad. We had talked about me coming off the meds, and that realistically, I would have to take pain meds occassionally. The thing is, I feel like I will feel so guilty. I would love nothing more than to have something to take right now, because I don't know how much more pain I can take from this flare, but...oh, hell, I don't know. I am just so tired and so sick. All the time. My husband, family, and friends are all like - you sound so much clearer now that you are off all that medication...you are like your "old" self...but I feel like ****. Any words of wisdom out there?:confused: Actually, I just really need support right now. It is hard for people that haven't felt this sick to understand. Hope everyone is doing well...take care...:hi:

Cristina

[dyno]

I don't know what to offer you other than support. Ihope you and your Dr. can find the answers for you. Please know that we all care and it is good to hear from you again.:grouphug: :kissing:

[vm]

Hi, Cristina - it is so nice to see you again. :) I am sorry to hear all you have been through.

I want to make sure I am understanding correctly: were you feeling OK before getting off all the meds? And then felt bad quickly after going off of them?

I hope you uro can give you some good advice and find some treatments that will help get you back on track, sweetie. :kissing:

[kelly McC]

Sorry to hear your going through all this. I also hope your doctor can offer you some advice and hope your feeling better soon.
Kelly:grouphug:

[Iris]

Hi, sorry to read that you have been going through so much lately. Hope that you can get to feeling a little better soon, sounds like you are really having a rough time of it. At least I can be here to give you support whenever needed. Keep us posted as to how things are going for you. Hugs Iris:grouphug:

[TiaTia]

Thanks everyone...I appreciate all the support. Feeling worse today than ever. I was feeling rough before going off the meds, but it was IC-rough, not all this other stuff. I think, actually, that it is my thyroid again. I was hypo, and then when I was in the hospital a month ago they said I had reverted to hyper. The doctor told me to skip my synthroid for a couple of days, and then go back on. Well, I think I am still on too high a dose. I checked out an endocrinology website, and all of the things going on with me are the exact symptoms of hyperthyroidism. Plus my IC is flaring really badly. I am concerned about my thyroid, and one side of my throat is swollen, where the thyroid gland is on that side. It is kind-of scary, actually. I am going to call my PCP in the morning and see about getting my thyroid checked. Hopefully I will feel better when they get that straightened out, because I honestly do not know how much longer I can take feeling this bad. Just going from the bed to the bathroom leaves me shaking, exhausted, and fighting to now vomit. I'm scared.
Anyway...thanks again, and hopefully between my Uro and PCP, something will give before my body does...
Cristina

[kelly McC]

:grouphug: :grouphug: Christina,
Best wishes and hope your feeling better soon.
:pray: Kelly

[sleepyangel30]

i'm so sorry tia what you are going through, have faith and trust in god, he will make you strong and make you better, i know how it feels to hurt i've been there, if it wasn't for my mom and aunt i would not know where i would be. they taught me to have more faith in god. i miss my old life i once had, but there is nothing i can do, jesus sufferd for us so we all have to suffer too, all we can do is pray, i hurt every now and then, i have more good days than i do bad, i'm staying postive, well i hope you will get well soon, take care you are in my prayers. :pray: :angel:

[kadi]

Just want to encourage you to get a referral to an endocrinologist. Thyroid issues are kind of like IC in that they need a doctor who really understands the condition. I have a lot of family members with thyroid problems & they need good careful & constant monitoring to maintain the right & safe level of medicine.

Wishing you good medical care & a return to health soon,
with love,

[ICNDonna]

I think a trip to an urgent care clinic or emergency room today could be a good idea for you. At least telephone your doctor.

Sending an encouraging hug,
Donna

[blue]

Cristina, I'm fairly new here, and don't know you. I feel for you! You will be in my thoughts and prayers.

You asked to come off all the meds, and now they consider you an addict. Do you feel like your an addict? Did you take the med's when they weren't needed?

[SharonA]

I am so sorry that you are feeling so ill. I hope you will seek out some kind of medical help...soon. :kissing:

[DIANE104]

Dear Christina,

I am new to this group, and certainly not an expert, but I have been where you are, and you need to surround yourself with people who understand your pain, and educate your family and doctors, or find new ones. Taking pain medication to relieve severe pain is your right. Don't let anybody make you feel guilty about it. I fought with doctors with 15 years, just to get tylenol 3 which really did nothing for my pain ,but it was all most of them were willing to give me- IC pain can be like end stage cancer and anyone who has it know this. If their are medications that will relieve it, why should you be denied that? I now take methadone, which was suggested by a wonderful doctor who understands the futility of mild pain relievers, which have you bouncing in and out of pain all day and night, as opposed to a time released, longer lasting drug, meant for severe pain. The first day I took it I was completely out pain for the first time in 15 years. I was happy, but at the same time thought about all the years I lost. Believe me, their is a lot of stigma that goes with being on methadone. But I don't care. And as far as being an addict- how do know? I never crave it, sometime I forget to take it-till the nasty little claws of pain start scratching- So you take what ever you need to get out pain, and start enjoying your life. I do still have terrible flare ups, and it doesn't work as well as it did in the beginning, but I'm on a very low dose, and not ready to increase it yet. Good luck sweetie. From all the posts I've read here you are in good company.
Diane

[Kimberly31]

Not sure what to say except to give you a hug and tell you that TIME can heal all it is having the patience is what is the hard part!
Keep your chin up:kiss:
Kim

[Ginny]

Wow, you have been through so much. I can't believe they treated you like that in the clinic. You are not a pain pill addict. You needed it to live and you still might need something to live.
Do you have a pain specialist? It really sounds like you need one.
Hope things get better soon.

Ginny

[TiaTia]

Thanks again for all the feedback. This is definately one place where I have always known I am never alone.

Blue...
No, I don't consider myself a drug addict. I didn't take it unless needed...in fact, I often tried to not take it, even when needed. I just wanted to come off it because I felt so tired and useless all of the time.

I did go to see my urologist on Monday. It was kind-of a pisser, because he wasn't there - they said he needed the afternoon off to take care of some things :( - and my husband and I drove three and a half hours to get there. They sent a resident in to see me, and my head just about blew off. He would ask me a question, then when I started to answer would talk over me. My husband was watching me like, oh man, she is going to go off on this guy. He quickly discovered that I knew WAY more than he did about IC, and mumbled something about going to look something up. Came back half hour later with backup (an older attending physician). That doctor was more helpful, feels I need to see a Gastroenterologist right away, as he feels something is going on there, and it is causing my IC to flare. He wanted me to stay and see someone there, but it was already 5pm, and we had to drive 3 1/2 back home. So I am seeing my PCP tomorrow, and have already told them I need an immediate referral. The uro gave me Percocet 10 and Phenergan to take to get through the flare.

I guess I am just frustrated that there is all this stuff going on with my body, and I don't feel like anyone (doc-wise) is taking an interest in figuring it all out. It's like - if it isn't easy to fix, then...oh well. I have had a sinus infection and all of this other stuff for 6 weeks, and am worn out. I am definately going to tell the doc tomorrow that if he doesn't feel he can or wants to do this, then to tell me so that I can find someone who is interested in helping me figure this out and feel better. I am tired of feeling like I have to be my own doctor, while spending money on "real" doctors. But, I do have faith, and I am not giving up. It will get better...it has to. Thanks again for all the support...
Cristina