No Rx Drug Addiction For Me...

[serene2u]

Is there anyone else leading a sober life in AA but me? I have been sober 21 years. I was scared when I was first diagnosed--and even read one post that said the IC sufferer would rather be a drug addict that suffer the pain!
Not me---apparently that person has never been to treatment or had a substance abuse problem!!!
I take Tagamet 200 mg in the morning and at night...it takes away the pain...I am so happy as I dont believe I have to constantly take narcotics---
Serene2U

[ICNDonna]

Congratulations on being sober for 21 years! I'm so glad for you that you have your IC under control. Hopefully you won't ever need pain medications, but if you ever do, I encourage you to discuss your concerns with your doctor before making a decision.

Warm hugs,
Donna

[Trishann]

I'm very happy for you and it is good you don't have to take those kind of pills.

[vm]

There have been a few of us around here over the years. Welcome! :welcome:

I've been sober since May of 1990. I have had to use narcotics 3 times since getting sober: after both of my c-sections and after my cysto w/ hydro. Each time I took Vicodin for less than a week and had no problems stopping. I found that letting each doctor know that I am a recovering alcoholic, letting family members know I'd be taking the med, and making a chart for when and how much I took helped me feel OK taking them. I had no problems whatsoever, but am glad I have not had to take any long term.

[DaniBelle]

I've been reading the posts in this thread and wishing I could throw all my meds away. I don't think that's going to happen anytime soon. I was getting concerned that my increase in Avinza to 90 mg, 1xdaily was causing some bad side effects. My pain was taken care of (almost pain free), but I was sleeping (cat naps) about 5 times per day besides my regular nigh'ts sleep. The scary part was that I'd noticed my respiration was a bit laboured and I felt like I was getting asthma or something. I took a left over 60 mg Avinza, and the respiratory problem is gone (and the sleepiness), but the pain is awful. I don't want to be a hostage to pain medication, but right now, I am burning, cramping, back is aching, etc.. I want to cry, but I'm tired of it. Now I know I need to go BACK to my pain dr. and find something else that won't give me such scary side effects. I've already done 2 home instills and feel like I need another one. Usually, after I instill (even at home), I feel much better. It's just not working....and of course...it's Friday night! I'm not going to the ER, because my doctor said 'they don't know what to do and don't know what I.C. is'. I'm sick at my stomach on top of all this. If I take the 90 mg Avinza right now, I'll be getting too much for the day. It's going to be a rough night.

[vm]

:kissing: I wish there was something I could do to help..... :( Just know that there is absolutely NO shame in taking medication that you need in order to function or live pain free. NONE. Patients would be foolish to deny themselves the appropriate treatment when they are in pain and when the medication, prescribed by a doctor, could help.

I'm sorry that you need the meds in the first place, but please, PLEASE do not beat yourself up for needing them in the first place. :grouphug:

[Trishann]

Danifleur, I am happy for anyone that can stay off of med, but I also know it is necessary for some to take them, and I am also one of them. Without it I would be homebound. I would be in so much pain to the point I can't bear it. If there was another way I would do it, but there is no other way, unless I have my bladder remove and that is not a guarantee. Yes people had success with it but everyone is different. With meds. I am able to leave the house, and that is very important to me. Because of the meds I can sleep, without it I can't sleep because of the pain.

I don't think this was about people should get off of their meds.
This was about the ones that are able to and we can rejoice with them.
Maybe one day IC will have a break through and we all can get off of them, but in the waiting, I am taking what I can to get some of my life back.

[Trishann]

Danifleur, I hope you start feeling better too.

Sending hugs, Trishann

[DaniBelle]

Thanks for your posts re: pain meds. I guess I was just getting worried as to what would be next for me. I have felt nauseous and sleepy, along with the breathing 'strangeness' for the last couple of days. Sometimes, I just get tired of some of the side effects and I decide I want a few hours free from the side effects, so I don't take my regular med.. That's how I end up with the pain and the realization WHY I need it in the first place. After reading your replies to my post, I took my daily Avinza and the pain is gone. I just need to make sure and call my pain dr. tomorrow to let her know about the problems I'm having with the dosage. She can't fix the problem until I let her know there is one! I'm just not thinking clearly today. Thanks for all your kind, supportive words. I, too, would be in bed crying if I didn't have pain control. Been there, done that! I'm looking forward to a better week coming up! Take care, everyone and have a good weekend!

[vm]

Oh, I'm so glad you were able to do something to take that pain away. I agree, a call to the doctor will be good and hopefully she can get you all squared away. Sleep well. :kissing:

[Dianne]

I've been sober 20 yrs. Prescription drugs were my drug of choice followed by alcohol. I've had IC for over 11 years which has been unresponsive to any treatments and I've tried them all. I have avoided narcs at all cost for several reasons. First I can't tolerate but maybe 3-5 oral meds. An hour after they hit my bladder I'm worse than I was. I don't like the way they feel now and also the pain clinic already said they would never prescribe any because of my history and the head of the clinic is sober longer than I. He thinks I should have an interstim and just can't hear that it's not for pain and I would never have one anyway but that's another whole issue. I think it's perfectly fine for IC patients who are in recovery to treat their pain, but I also have to do what feels right for me and this just doesn't. I've had narcs twice - in the recovery room after back surgery I had to take 2 mg. of morphine 3 times to get pain control when I woke up. I didn't get high and had no trouble with the drug afterwards but when all that sulfate hit my bladder I had 3 pain days I wouldn't even have words to describe. I also got fentenyl in my epidural once for a hydro without my knowledge or consent after I was so specific that I not be given any. I had a horrible reaction that lasted 36 hours where I was irrational and paranoid, thought my job was trying to fire me, it was awful. I use motrin/neurontin, ice pack over bladder, SANS, acupunture, massage, TENS, and IS (inferential stimulator). I use two titralac for severe pain which gives me quick relief but the carbonate trashes my bladder all the next day so I have to pick my poison. Anyway each of us in recovery gets to choose our own path and this is what I choose for me.

[Moonheart]

Danifleur, I am happy for anyone that can stay off of med, but I also know it is necessary for some to take them, and I am also one of them. Without it I would be homebound. I would be in so much pain to the point I can't bear it. If there was another way I would do it, but there is no other way, unless I have my bladder remove and that is not a guarantee. Yes people had success with it but everyone is different. With meds. I am able to leave the house, and that is very important to me. Because of the meds I can sleep, without it I can't sleep because of the pain.

I don't think this was about people should get off of their meds.
This was about the ones that are able to and we can rejoice with them.
Maybe one day IC will have a break through and we all can get off of them, but in the waiting, I am taking what I can to get some of my life back.

I would literally be out of my mind without my meds. Housebound yes, but writhing in agony on the bathroom floor is very likely. I went for five days without my meds, got some withdrawal, but the worst was that I was not in touch with how severe my pain was. Since then, I haven't been able to get my pain back under the same kind of control. It stinks because I'm on 30mg of MS Contin 3x a day and still in pain and discomfort. I wish my doc would give me breakthrough meds because I don't want to go up any higher on my MS Contin.

I was off of pain meds and going to AA and meetings because I thought I had to be off of them. The pain was so bad that my bp was consistently around 154/97 and I was grouchy and miserable. Sometimes the alternatives are worse. :(

[lisalau]

This is always such a touchy issue
so difficult for those who are sober and equally challenging for those who choose to accept what relief is available to them
addiction is an ugly beast which most if not all of us are suseptible to
as is so often said...
an addict uses to escape their life and pain patients use to be able to participate in their life
but this line blurs all too often
so many people begin using pain meds for legitimate pain reasons and soon find themselves abusing
so what happens then? if someone has abused their meds in the past, are they no longer allowed the human right to some relief of their pain?
those who have abused in the past and CHOOSE to abstain, finding other methods to control their pain are so brave. I know some will argue that it is fear not courage but having lived with someone in recovery from heroin addiction, who tolerated intense pain, i am in awe of their strength and courage and commitment.
Over time and with experience, i have learnt that when people abuse drugs, in many cases they are simply self medicating... treating either physical or emotional pain beit illegally. I dont judge them, if not for the doctors being able to 'see' my condition and thus treat it, i am not sure that i, too, would not choose to self medicate to escape the agony of this (and other) conditions
in fact, once i came VERY close to it
soon after this time, i was given the diagnosis of chronic pancreatitis and given narcotics to treat the pain. No one could have been more thankful for that ugly diagnosis than i was...finally i would get some relief from the intense urinary pain i was in! it was much harder to live with than chronic pancreatitis and yet, no doctor i had seen, then, recognised it as something worthy of treating
I also know people who have abused their meds in the past and now are able to take as prescribed...the lesson they learnt was that if they abuse, they will run out and then be left to deal with the return of their pain condition and withdrawals as well
I am not sure why i was moved to post here. I guess I wanted to encourage those who choose to not use strong painkillers, whether because of addiction issues or not but also to soothe the feelings of guilt some of us feel when we do accept appropriate analgesia. No one should feel guilty for accepting some relief from pain
My ongoing concern (and it is important for me to say that i have multiple health issues, all of which seem to be deteriorating quickly) is that as my conditions worsen and tolerance continues to grow, i will soon get little or no relief from my meds and this scares me a lot.
This month (i cant believe its jan already) i begin methotrexate therapy in hopes to stop or slow down the escalation of the conditions and keep my meds working so i am reasonably ok to care for my family
sorry for rambling...i will begin a new thread about methotrexate, if anyone has some experience with it, please find the thread and share with me, i am really frightened
hugs

[Trishann]

Lisa, I can understand where you are coming from about drugs. I was never the type to take drugs. When my bladder got severe damage, I could not do it alone. I could not even sleep. Went for days and weeks without proper sleep because of the pain, to the point I was really to take a whole bottle of something to sleep. That is how irritatable and not thinking straight because of the lack of sleep due to pain. I told my husband that I needed help or I will eventually take pills or something out of desperation and might not wake up. This is not me at all.

My doctor gave me pain pills which is narcotics. I can take them 3 times a day. I can sleep now. And I feel like I am not in desperation now and I have control what I'm taking. To be honest with you, I think it save my life.

I don't take the narcotics three times a day because the stuff do have side effects on me. I take vicodin at night and once in a while I take it during the evening time, if the pain is to much. I am terrify of it because of what I am hearing but mostly because I have to laid down and be still when I take it.
I do belive for me 3 times a day would be to much for me because of the way my body respond to it. I am very sensitive to medicine. And I differently don't want to get addict to it.

I don't know no other way to be able to sleep without pain. They can't not do nothing for my bladder except to removal it. And I do have my reasons for not going that way yet. I hate drugs too but I whether have some control of what I'm taking, then I would can't take it no more and do something stupid. I don't know if this make sense to you are not but this is what going on with me. Something that can be so wrong and yet can help me greatly.

[lisalau]

That;s right, Trishann.
so many times, on this and other pain boards, i have read comments made by family and other people that diminish legitimate use of pain medication
'you just want to get high'
or
'you are too lazy to try alternative therapies'
or
'if only you would exercise, eat well, stop feeling sorry for yourself' etc
'if i can tolertae my pain, you should be able to tolerate yours without pain medication'
As if being in pain and being reduced to a percentage of the vital people we were is not damaging enough...we should feel guilty for accepting some relief that more often than not, does not get rid of the pain but masks it enough that we can function on some level and wear a mask so those very people who make us feel bad, can feel better by not seeing our pain.
My mum always says God gave us 2 ears and one mouth for a reason...that we should listen 2ce as much as we speak
if those people who would judge us would educate themselves a little about how analgesia works in the brain of a pain patient, they would know we do not get 'high' (ofcourse there is a little euphoria initially but tolerance kills that very quickly)
I am sorry if i sound angry...i feel angry. I am surrounded by people who support me and who are as greatful as i am that drugs are available that stop me laying in bed crying and screaming all day...why there are people out there who would have my IC sisters feel badly, i just dont understand. Pain relief gave my children back a mama who can listen to them and cook their meals...admittedly not the mama they miss but i am still here, something i doubt would have been the case if i had to continue the way i was
everyone is different, we all have different abilities, strengths and weaknesses...some of us will choose one way to walk this path and others another...i hope that walking it together, encouraging eachother despite our differences, being mindfull of eachothers limitations and never judging, remembering always that each persons experience is theirs and noone else can ever experience it in their way and therfore having empathy and showing kindness, perhaps one day we can all find some relief
I am so greatful for this site and being made to feel i am not walking alone
( wow you can tell its the wee hours and i am getting sentimental, cant you?)

[jorkale]

i think i would be dead. i can hardly stand the pain that i have been in the past couple of weeks. i have been fighting this bacterial vaginosis infection for like 2 years. every time it flares up, my IC flares. I just think i am going to die sometimes. what a boring new years. i just finished 13 days of flagyl that did nothing for me. i feel completely helpless. one thing i do know is that when i take vicodin, not only do my BV symptoms subside, but my IC does too. how crazy is that? it's like this terrible vicious circle. i am completely frustrated. i am a picture of health otherwise. i just sit and cry every day when i am like this. my husband is the best. i don't feel depressed but i do feel completely frustrated. i'm 43 years old and do not want to continue this way. i was referred to the University of Iowa Vulvodinia Clinic on March 12th...i don't think i will make it until then if it's going to be this way. i'm just going to be drugged. i don't really feel drugged...the pain is gone though...and for me..it's so much better than fighting the pain. i get exhausted, irritable, frustrated, and i'm sure i'm aweful to be around. I WANT MY LIFE BACK!:smile tee

[Trishann]

Moonheart, I hope your doctor can help you too. I don't think people realize what pain can do to you. After you suffer for so long, it starts to do things to your body. I think each individual is different. Medicine works different on each individual, for me I am very sensitive to medicine. I have problems even with cold medicine over the counter. I can't take this one kind of medicine, it is for coughs and congestion, my stomach will throw it back up. Even as a child, I could not take it. My husband takes it all the time. This is why I know people are so different. What might be good for me, you might need a stronger strength medicine. I don't know, that is when you need to tell your doctor what is working and what is not. You don't need to be addict but you do need control over the pain. Not having control over your pain, I think it is just as bad because you get desperate and can't think straight. I hope you start feeling better and can get relief from your pain.

Yes you are right about both ways can be bad. Balance needs to be there and sometimes it is hard to find that balance. Hope you start feeling better.

[Moonheart]

Hi Trishann,

I'm sorry I didn't see this before. Thank you for writing. I do appreciate it. :)
My pain is back to being unbearable. I'm a bit discouraged but hoping that it's just going to take awhile for the pain to go away. I had these fleeting thoughts of it being just so simple as doing the hydro for my pain to get better, and feeling so stupid for not having it done before, but I guess it isn't that simple.

I get the feeling that I may not be able to make sense soon as I am so tired. It hurts and I'm scared to try to sleep, but last night I was falling asleep on my face in front of the computer. So I need to go to bed.

Night all...

Hugs,
Moonheart

[ICNDonna]

I'd just like to chime in here with a few comments.

Of course, none of us wants to need to take pain medications, but what if you had some other problem, such as high blood pressure, diabetes, or low thyroid function? Would you hesitate to take the medications required to control your specific problem?

I have high blood pressure and take medications on a daily basis. I have two diabetic step-daughters who both have insulin pumps --- would you suggest that we stop taking our medications? Of course not!

So if you are in pain and need pain medications to enable you to live a normal life, it just makes sense that you take them. When the time comes when you no longer need them, your physician will work with you to ease you away from them.

There is absolutely no disgrace in taking pain medications any more than it's a disgrace for a diabetic to take insulin.

Donna

[Bessie]

Well put Donna :)

I also take medicine to manage my pain and without it would not be able to get out of the bed.

I don't apologize for taking it nor do I feel that I need to justify it to anyone. I don't understand the stigma from others about taking medicine that helps you live.

God gave us doctors, nurses, pharmacists, medicines, and other treatments to help us and aid us with our medical diseases. :angel:

How stupid would we be if we didn't let others or medicines help us when we need them?? :loco:

I know for myself that having this disease has made me grateful for my husband, my family, and my true friends (and yes you learn who they really are), and for the medical profession. I hope that one day soon there is a cure and none of us have to suffer any longer.

[DaniBelle]

I've been so non-confrontational all my life, in that I say 'yes' before really thinking about my welfare. I am in a bad state now because I wasn't forceful enough with my pain doctor. This doctor has a rep. for making patients feel bad about needing pain med. and he's a pain specialist! Maybe he should try another line of work. I happened to get placed with him and the results have been bad. This doc never listened to me re: what pain med works for me. He put me on something that doesn't take the pain away, but has awful side effects. I hate it. My head is fuzzy, I feel like a lump, and am still in pain ALL THE TIME! I'm trying to change to a different doctor, but they're really unhappy that I even asked. It's my choice! When I told my current doctor about the problems I was having with the pain med was on, he said that "Maybe you just can't take pain medication...oh, well, at least you know I.C. won't kill you, you'll just have to live with the pain!" My UroGyno was so mad and is trying to get me in with her friend who is the pain dr. who treats most all of her I.C. patients. My UroGyno is the only place I've been to EVER, EVER, EVER...did I say EVER....that understands this pain. Even my PC phys. shooed me away for months. My previous gyno didn't take care of my endo and cysts, enlarged uterus, completely, so I had to have a 4th surgery. I'm so mad, but I'm internalizing again, crouched up on the couch w/my heating pad and wondering what tomorrow will bring. My children and husband are the lights at the end of my daily tunnel. They keep me going.

[Trishann]

Moonheart, I read on this board before where someone stopped their meds and then realize it won't work. So this person went back on their meds and it did not work for her like it did before.

I don't know why this happen, maybe it just take awhile for it to work again or maybe your body will need a different kind of pain pills.

I hope you start feeling better and can get the proper sleep. If you don't sleep well your body will respond to it. Hope you talk with your doctor so you can get help for the pain.

Sending hugs, Trishann

[Trishann]

Danifleur, you don't need to feel bad because you are in pain. It is the doctor who should be ashame for not helping you. There are doctors who will help you just don't give up until you find that doctor.

Sending hugs, Trishann

[Moonheart]

Oh, I didn't stop my meds, I just didn't have any pain on my regular doseage, when normally I take my pain pills and I'm still in excruciating pain. :( It was wonderful to feel so good.

I called my doctor's MA today and got an appt. on Tuesday. She sounded very disturbed that I was in so much pain that I couldn't sleep. So hopefully something good will happen.

Thanks so much!
Moonheart:angel:

[DaniBelle]

I build up tolerances to meds very quickly. It's weird, because I can take my pain med or anti-anxiety med one day and feel almost complete relief. The next day, after waiting 40 minutes, post-dosage, I'm ready to call the pharmacy to see if they accidently put a placebo in my bottle, because I feel relatively NO relief. It's very strange, but I think it has alot to do with my metabolism. I don't know what the solution is. I know caffeine is a bad thing for most I.C.er's (myself included), but during those times, I have a little to boost the effect of the pain med at least.

Wishing you the best in health and spirit!

[Berkshire Road]

Caffeine is a know booster for pain meds... you have to balance out whether the net result is better or worse.

I finally found that the best combination for me is perocet with a small dose of valium as a muscle relaxant. The percocet can do a lot for pain, but I think one of my biggest problems is spasms -- everywhere.

I know several of my family members disapprove of my use of narcotics (and one or two cousins actually offered to buy some off me :mad: ), but my doctor says just what many of you say. This is the medication needed to treat your particular condition.

I get a lot of unsolicited advice, too, do any of you find that? People are always recommending "natural" remedies. Like I'm not already doing heat, hypnosis, guided meditation, and relaxation exercises... anyway opiates are a pretty natural remedy in themselves. The poppy flower is not an invention of the pharmaceutical companies.

[DaniBelle]

I agree totally. When I take my pain med with a muscle relaxant, both work so much better. The best pain relief I ever feel is when I take my breakthrough med with a half or whole Soma. The pain and stress goes away. What a relief. Say a prayer for me. I've written a 'Pain diary' to show my new doctor so that he can see what combinations work best for me for long term pain relief. My last dr. told ME what I was going to take and was uncompassionate about I.C.. I've probably said this before, but he said I would have to deal with I.C., I.C. won't kill me. ARRRGGH! Wish me the best!
I hope you have a pain-free day!

I'll ask him about the percocet w/the Soma.