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Long term use of pain meds? (really anxious)

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  • sue041
    Need the article in the paper from Tenn.

    I sent in my 2 cents and Terry Quillen e-mailed me and said he needs my name and address in order to print what I told him. Did anyone else hear from the newspaper editor.
    Hope he don't sue me for slander or something.
    Who cares at this point in my life I feel real nasty.

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  • runningshoe
    Pain makes you feel crazy. It makes you anxious and scared for the future. It makes you depressed. It can make you angry and impatient. Pain is torture. No one in pain can be expected to be calm, happy go lucky. When I am in pain I fluctuate between panic and sorrow. You are in pain and you need your meds. The pain will only get worse if you don't manage it.

    I had IC when I was in my twenties and also didn't want to "give up" on sex. You can find ways to make it less painful but sometimes your body needs a break and its okay to just snuggle! I used to use an ice pack after and that would really help. Now I am 42 and have been married for 15 years. With this current flare (after years and years of remission) my hubby just packed up and moved into one of the kid's rooms: he know better than to ask!!

    Try to relax and give yourself a break. Our bodies were made to heal!!

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  • jen74
    I am sorry you are in so much pain. I would happy if my doc would even give me some pain meds, but she does not offer them even. Sometimes the pain is so bad for me that I cannot even function. I was suprised that so many of you are able to get these pain meds from your doctors. I was never offered anything like that other than lyrica or tylenol. I would like something for the pain, but I do have terrible stomach issues so I am not sure what all I would be able to even take. I cannot even take motrin.

    I dont think you should feel bad about taking meds to help with your pain. Like Donna said, if you were diabetic, you would not hesitate to take insulin. This is the same thing. I am a huge believer in " quality of life" , I mean without that, life is just not worth living. So if these meds help you have better quality, then dont think twice about taking them. I really do feel for you, this is just an awful disease. Big ))))gentle(((( hugs.

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  • Moonheart
    I read tonight that IC can cause anger and other mood disturbances.

    I used to think I was bipolar also. Even convinced my doc to diagnose me that way. But now I am certain that I am not.

    Now that I have been officially diagnosed with IC and there is a "reason" for my pain, and validation, my "bipolar" symptoms have gradually gone away. I think the fear of not knowing why you are hurting so bad and your body is so out of control, is part of what makes us angry and so volatile.

    And please, don't be afraid to take your pain meds. I took so much Advil for years that I did real damage to my stomach and probably my kidneys as well. Being on MS Contin is far better for me and my pain is more under control as well.

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  • charmedx3
    I think we all deal with that in our day to day lives. I hate the fact that I have been on pain pills for the last 2 yrs. but it helps me function. I am able to work, which without my income, we wouldn't have a home. I am able to do things with my kids.I dealt with the pain for the 1st 3 years of this IC and it scares me too think I could be in that type of pain again and spend my at home time in bed. good luck!

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  • KstoneQueen
    Sarojini - thankyou so much for your response. You're right, I shouldn't feel guilty. Without my meds I can't get off the couch. However, I really don't know how much this med /dose is helping, since I can get off the couch, but not do much else. Then, I feel like I am taking them for nothing, because I still don't feel like I am functioning "well." I am off the couch, but not functioning, KWIM?

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  • KstoneQueen
    ICNDonna - I read your post after I posted mine. Thanks for putting it to me that way. You are right. It is the damn stigma of these meds. I am so scared because I can't seem to get past the stigma myself. Especially since I have been made to feel bad about taking these meds in the past by my family as well as the medical community. I am also afraid that my doctor is just going to cut me off one day, and I will not have pain meds at all. He already seems to be reluctantly prescribing to me. He is my GP, and I want to be referred to a pain doctor, but my GP won't because he believes that my pain is going to be "short term". I can't seem to convince him that this is a lifelong problem for me, and that I need a competent medical team. My urologist knows nothing about this disease. My psych doc wants to drug me up on meds and tells me that "I just have to accept my pain and ignore it."

    I just feel so out of control. However I went to my kidney specialist on Friday and he said one of his colleagues "is interested in IC." So, I am waiting for a referral to him. At this point I feel like it is my only hope, so I am holding on until then. For now, I am just getting by with prayer it seems.

    SandyRN - thanks for the warm welcome, and your understanding. Your validation really helps me. I will definately be checking out the sex board. I've been suffering through it. Not for my DH, because he is afraid to hurt me and really is reluctant to do it. But, I've been so stubborn about not giving up that part of my life that I go through with it anyways.

    Anyhow, thanks to all of you. I feel so much better mentally already just knowing that I am NOT alone.

    I also will mention that I am 27 years old, and at this point I cannot fathom going the rest of my life like this.

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  • Sarojini
    I take pain medication regularly and am totally unapologetic about it So what if I have to take it? Pain medication is what got me out of the fetal position, out of bed, and back to work full time, so if anything I am thankful for it.

    Lori is right; proper pain management on opioids by a qualified doctor can be much, much safer than overdosing yourself with Tylenol and Advil, which will wreck your liver and your kidneys respectively. When you take your medication to LIVE, you're not a junkie. If you take it to AVOID LIVING, you may be heading down the junkie path and it's time to get help. However, it sounds like you, like me, are almost non-functional without meds, so I highly doubt you're taking them to get high... you have real pain and there is nothing, absolutely nothing, wrong with treating it.

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  • KstoneQueen
    Thankyou all so much. I feel like you all will be my lifeline for a while until I get used to all of this. I feel like everything I am doing is in vain. I can't go out anywhere because simply carting my 9 month old around on the bus (I don't drive) makes me hurt. I sit around my house all day looking at the disaster that my house has become. Then, I get depressed. So, I end up going out to get a change of scenery. Then, going out puts me in pain. It's a vicious cycle. I am so happy to have found this place, you all understand. Although, I wish you didn't have to be here either.

    When you all have pain, does it affect your bowels as well? I have this feeling of pressure in my rectum (sorry really gross) like I have to "go", but I don't have to. Then I get shooting pains up my rectum to my tailbone. I do have IBS though. Also, my bladder pain burns over my pubic bone. For the longest time I thought it was from my cesarean section 9 months ago. I literally have to walk around without pants or underwear, I can't stand the clothes touching me. The pain is also radiating down my left leg. I feel like I have a full bladder, but I can't go! I sit on the toilet, and I pee little dribbles. Then, 10 minutes later I have to go again. Or at least I think I do.

    I am drinking tons. I am eating all organic, from the list of "okay" foods from this site. I think I may have to eat more bland for a while though. Back to the basics. I am taking organic vitamins. I have had a cystoscopy with distention, but I only got moderate relief for 3 days. Then, I passed a kidney stone and I think it messed things up for me. My ureters are scarred and damaged from the passage of 25 or so kidney stones in the last 7 years. I have had 3 lithotripsies to smash some stones that were too big to pass.

    Other medical problems I have include (some already mentioned) are:
    Bipolar disorder (not currently medicated as I believe that I may not be bipolar. I think my moods are very related to my IC)
    Endometriosis (diagnosed in 2004 after a hernia repair revealed endo in my abdomen)
    Hashimotos thyroiditis (I do not have a functioning thyroid. Diagnosed in 2001.
    Currently on 1.50 mg of synthroid)
    IC (diagnosed last December, after 7 years of pure HELL, in which doctors DID NOT BELIEVE ME.)
    Medullary sponge kidney (diagnosed in 2001 after numerous u/s scans to look at my kidney stones)
    IBS (had bowel problems as long as I can remember. IBS acts up whenever my other health problems act up)

    I also currently have a systemic yeast infection in which the medical community does not seem to believe in. I can't get rid of this. I think it started with undiagnosed thrush from breastfeeding (not breastfeeding anymore due to meds), and has gone through my body. I am trying not to eat sugars, starches as much to rid the candida. However, I can't cut out carbs completely, as the serotonin in my brain gets too low as a result. Then, I get so depressed I am suicidal. I tried the atkins in 2004 and just about landed in the hospital I was so depressed.

    So, that's my story in a nutshell. I will post an intro and my whole story at a later time, when I am not so overwhelmed. Right now I am just trying to stay sane until my husband gets home from work. Of course, it has to be his birthday today and I feel so guilty that he is coming home to a giant mess, and no dinner. UGH.

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  • ICNDonna
    When taking pain meds because you NEED them, try thinking of it this way:

    If you had diabetes, would you hesitate to take the insulin you would need to live a normal life?

    What if you had a heart problem --- would you hesitate to take the medications you need to live your life?

    What if you had high blood pressure --- it also requires medications.

    YOU DO HAVE PAIN --- and that may mean that you need pain medications to live any kind of normal life. Yes, your body may become dependent on those medications, but when the time comes when the reason for the pain is gone, your physician will help you to wean away from them.

    And your physician will also check you periodically to be certain you are doing well.

    Warm healing thoughts are headed your way.


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  • SandyRN
    I don't know if I've said it yet but welcome to the board! I'm so sorry that you're having so many difficulties right now, but I can assure you that many of us have been where you are.

    I have trouble, even after all these years, accepting the fact that I may live out my life on pain meds. It's hard for me to imagine my life without them anymore. I've tried to cut back, and I've had to go for a day or two without them and the side effects of NOT taking them are by far worse than taking them as prescribed.

    I know it's a hard thing to deal with a chronic pain illness, the upheaval of your entire life, and now the fact that you need pain meds just to get through the day. It's a grieving process actually, and everyone adjusts to it differently.

    Lori gave you great advice on opiods and I hope that sets your mind at ease somewhat.

    If you ever have any questions or problems please don't hesitate to ask. If you're having problems with sex, there is a new board that is run by Jill, the owner of this board. It's a great place to go to ask just about any question you want.

    The patient handbook link is at the top of this web page and you may find some more helpful hints there as well.

    I hope things get better for you soon!

    Hugs, Sandy

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  • Trishann
    Just remember when you take your medicine read the direction. If it say to drink a glass of water, you should do just that. That would keep your esophagus from getting damage from getting stuck in it.

    Some of the medicine seems to give me heartburn especially the pain pills, but when I take it with Nexium, it does not give me hearburn.

    I truly understand about being scare and not knowing the long term effects. I think we all feel this way. But I know for me, I can't bear to live the rest of my life in so much pain and misery.

    If the medicine is making things worse, I agree with the others, you might have to try something else. I think most of else went through these trial and error things.

    Sending hugs, Trishann

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  • malone
    pain meds

    Lori is so right! I happen to be in some sort (not going to question, right?) of spontaneous remission and I have no idea why! I have slowly gone down from around 80 to 100mgs of oxycontin 3X a day to 20 mgs. 3X a day and I feel fantastic! (also I am still cutting back!) As I am so anxious to get off of everything my wonderful PM Doc siad slow down! These meds have been around for centuries and are truly safe--yes they can be abused but that is not your case! I was wondering if you have tried anything else beside the IC diet? Maybe elmiron or the million other things we all just try that can be found all over the boards. Dr. Hanno once suggested something called Brioski which can neutralize the system and if I feel anything coming on I immediately take some. There are great ideas all around these boards so good luck. But as to the pain meds, if they help as we have all said before, all we want is our life back! Hugs-Malone

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  • KstoneQueen
    Thanks for the info on opiods. I really, really appreciate it. I am sooo, sooo sorry that you can't get pain meds. Really, I am. I hope I didn't upset you by sounding ungrateful in my situation. I do realize that it could be worse. Sometimes I feel like it is a double edged sword though. I mean, if the meds are causing my pain, then I will be in pain until I stop them (but will still have pain since I have IC). Then I will be in pain, and then my depression gets really, really bad. Or, I take my meds, and stress about the implications of that, and possibly make the pain worse...and be depressed. UGH, it makes no sense.

    I can only imagine what you are going through. I have been in your situation before, though not long term. For the longest time, the docs didn't believe me. I would get a script for 30 percocets and that is it. Then, I would go back and complain about the pain coming back, and they would basically call me an insane junkie. I would go to emergency, in horrible pain, and they would see that I am bipolar, and then all my credibility went out the window. They figured I was nuts, and drug seeking. For a long time, I actually believed them, because no one could figure out what was wrong with me. I went on a 7 year horrible ride that consisted of long hospital stays as a psych inpatient (thus missing my firstborns babyhood), some stays up to 4 months long. I was forced to go into to "rubber room", I was sexually assaulted by a patient one night because they drugged me up so much, I didn't know that he got into bed with me, NAKED. I was on sooo many psych drugs, that they induced psychosis on me (which I never had before) and I seeing spaceships etc....Then, they decided to fry my brain a little more, by doing 19 rounds of ECT on me . I now have little memory of 1997 to 2003.

    Okay, sorry, I am rambling now. I guess I just really, really needed to get this all out. I am pretty scared that I am being led on a wild goosechase again by these doctors. Everything they do /prescribe scares me.

    I am so sorry you are having to have surgery...may I ask what they are doing? Sounds like we all have a similar scary /sad story. I am so sorry that you are dealing with this. I wouldn't wish it on anyone.

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  • ICLori
    Just to let you know, opioids are some of the safest and most effective medicines known to man. They are substances that occur naturally in the body, so they do no harm to the liver or kidneys, unlike motrin or tylenol, which do cause harm.

    The only possible risk of these drugs are tolerance and dependence - which you are worried about - and that can easily be managed by tapering off, and by a pain doctor working with you.

    The other possible risk is by an opiate-naive person (someone not used to opiates) taking too high a dose (like someone looking to get high) and experiencing respiratory depression (stopping breathing.) That won't happen if you take the medicine as directed by your pain doctor.

    So, really, the med you are on now is very safe to take long-term, much safer than taking motrin every day or tylenol every day. No worries!

    Hope that helps.

    We are currently in a society that fears and hates these medicines, because of the side effect of the war on drugs, war on addiction. The truth is, these medicines have been a godsend for thousands of years (or longer) to mankind, and there is still nothing as effective for treating pain, and no pain treatment nearly so safe.

    P.S. I am envious of you for being able to obtain pain meds for your pain. I am in the position of being forced to undergo really risky surgery, surgery that has unpredictable results, because my doctor is not "comfortable" prescribing me Ultram. I know you don't want to hear this, but things could be worse...imagine if they refused to let you have any pain meds at all....

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