It's been a while since I've been on here. My name was changed (I used to be kstone queen due to kidney stones being my pain problem). I've had over 65+ surgeries, including the removal of my left kidney and my right kidney is failing and full of stones. I've had over 400+ stones since this all started at age 9, now 36.
Anyway, I've been on every CII med you can think of except methadone. My problem is....I get sick all the time from my meds and I was curious about trying methadone. So, if I was sick for a couple of days in a row, I would still have some methadone in my system due to it's long half-life. Plus, you can imagine my tolerance to pain meds after 27 years.
I've tried Duragesic for a number of years, but always had problems with blisters and it adhering to my skin, even with overlays. I'm sooo sick of this life!! I know we aren't allowed to talk about the "S" word, but I don't know how much longer I can hang on.
You would think I would be use to the pain by now, since that is all I've ever known, but if you have ever had a kidney stone before, you feel like you are dying. I'm not dismissing other types of pain by any means at all. I don't just have one stone at a time, I have 15-20 at a time. Not very good with only 1 kidney that is failing.
I know this sounds horrible, but I think of death constantly and everyday I wake up I think....great, I'm still here. Please tell me all you methadone pain patients, is there hope this pain can become bearable??? I've been in PM for almost 8 years, so I know I will never be a zero on the scale. I just can't live at a 9 or 10, either.
The only thing keeping me alive is my husband and my mother. It would absolutely kill her if I did something "unnatural". She's been there for every single surgery I've ever had and I know she can't take much more either, so I try to limit her involvement on how I feel and upcoming surgeries. I lie to her alot, which breaks my heart because we are soooo close, but she's 66 now and her energy level blows me away. Seriously, she's like a 21 yr. old that loves life.
Well, I'm her 36 yr. old baby girl who HATES life and truly wants to die!! Please, please, tell me there is hope. I'm sorry for such a long post, but I know I can "talk" to all of you because we are all one big family.
I have had just 1-3 little stones and I do know how painful they are and I am truly sorry that you are feeling so much pain for soooo long.
When I injured my arm in 2004 at work I ended up on workers comp for 3 years and after the last surgery ( the 4th on my arm ) I was like you. I developed a Huge tolerance to all kinds of meds and on top of that they just did surgery on my ulnar nerve. It was so bad they put me on methadone and I feel it was a very low dose. I was titrated up to 25 mg's a day and eventually after the methadone was in there I had great pain control. Now everyone experiences pain diferently but the methadone helped my pain that was a 10 all the time and the pain actually made me sick to my stomach even before surgery. But I went from a 10 to having betwenn a 5-7.
The bad thing was that I could not tolerate the memory issues and the sleepiness. Anyway after 2 months I asked if I could start to decrease to see what the pain levels were like. we found that the pain levels were signifigantly lower and I was well on the way to being better. It was not easy stuff to detox your body from. I did not abuse them but my body still had to go through the ordeal. The detox ordeal was in may and june of 2007.
Anyway I was living life at about a 3-6 pain level off the drugs completly for about 30 days and was in the process of having my case closed and was in an accident (July 10, 2007) that led to neck problems and more surgery. I tried without narcotic meds for a few weeks and could not take the pain and have been to PM again and just had neck surgery. I am not on methadone because I just would not go there at this time other meds are effective enough even though I am prescribed a large amount in my personal opinion but it goes right back to how a perosns body feels and deals with the pain.
I am 38 years old and have never been married and have no children so it is just me and the cats.
I have a mom and she doesnt quite have the energery level of a 21 year old but in the last 4 years I have had 2 female surgeries 4 arm surgeries and 1 neck surgery and she like your mom has been there through it all. Her and I are very close and like best friends and we love to do things together. SHe lives a few hours away.
I hope my experience with the methadone helps you. I can not remember that I had any nausea when taking it maybe in the begining.
I know that with only one kidney that is barley working that your system really does truly get worn out trying to do its regular job plus all the medications. People do not really relize how important kidney's really are. I say this because I did not really understand until in one of my pre-nursing student classes we learned some about the kidney and its functions and how it is so important.
Right Now I too am really feeling pretty sad, although I have never had thought of the s word. I have gotten some hope from your post actually and some folks on this board and another have pointed out that it souded as though I need to find it-hope again.
Pain really does grind you down and from reading your post I have learned that you must be one strong woman to have been through what you are still going through to push on.
Anyway I could go on and on and on.
I will keep you in my thoughts and prayers...
I guess I'll just join the club and say I've had a couple bouts with stones too, but nothing compared to yours. The main thing to tell you is give Methadone a try. I've been on it for almost five years and although I'm at 60 mg TID (180 mg per day), it has dropped my daily pain level from about an 8 to 4-5, some days I don't get that good, but I'm now dealing with additional problems. On top of the pain problems I've had for the past several years, I now have developed spinal arthritis, C3-5 (I think). It really gives me the fits in the morning and evening and for some reason, during the day it eases up somewhat.
As far as going on Methadone, as Steve pointed out, it is something you need to do ASAP. If your doc is willing, I'm sure you will feel like a new person from the level of pain control you have from it. Everyone is different, so be prepared to be like I am and require a fairly high dose to gain the level of pain control you get, but I have been on several LA C-II meds and this is by far the best.
Good luck and please keep informed on how you're doing.
I think at this point in your life you need to go ahead and give it a try. what are your fears with it? I mean you have tried everything else so why not try it and see if it works for you.
I have a question for you, since your 1 remaining kidney is failing, what does that mean for you, what does the future hold for you? if it fails can you get a transplant, or will you pass away if your in kidney failure? are you on a list now for a new kidney? I wonder if you would still produce the stones if you had new kidneys in you. I feel so bad for you, that has got to be a horrible way to live and to think about death every day is not a good thing, and I am hoping you are seeing someone for these " thoughts" you are having, maybe they could help you to not think about the " S" word every day! ,
have you ever thought about a pain pump? good luck, its good to see you again, I have not seen you in ages. all the best.
I have had a couple of kidney stones as well and know the kind of pain you are talking about. I don't know how you have been able to cope with that kind of pain for so long. I guess the meds you have been taking take some of the edge off but they obviously have lost their effectiveness. I would definitely get into the doc and get the prescription for the Methadone. Just think of it as another CII medication and not something strictly for heroin addicts. Many, many people are now being helped by this medication. I tried it at one point and had a lot of itching and couldn't handle it. But now I am on something that is helping quite a bit. You may also want to consider asking for an anti-depressant. It helps to bring you out of that terrible "hellish" place that you are currently in. I have been there many times and felt like giving up. I have even attempted the "s" word several times but for some reason I did not go through with it and I realize that I must have a purpose. The anti-depressant will help with the depression and also helps the "perception" of the pain so that it doesn't wear you down as easily. I hope that Fabby responds since she has been helped tremendously by methadone. Go back a page or two on this board and read her miraculous story with trying methadone.
Thanks Brian, you are right, I consider methadone nothing short of miraculous! I have never been on a strong med long term until now, but I can tell you when I have been given morphine in the hospital, the nausea and illness was terrible.
I have had a little of that with the methadone, but nothing more than 5 minutes here and there, and nothing at all in the past few days. I think I have found the right dose, He has been seeing me every week until we hit on the right amount, but he started me off on an opiate dependant persons dose, which I am sure your doctor will as well, and only needed to make the one change, an increase from 2 10mgs per day to 3 10mg pills a day. I was already so much better on the first dose, I almost stayed there, but I realize my pain had been undertreated for quite a while, and at this dose, I have my pain most days at about a 3, whereas before it was never lower than a 7, at least not for the past few months.
I know the same med isnt right for everyone, but I can tell you if methadone does even 1/2 of what it has done for me for you, you will be very happy.
Please keep posting and let us know what you decide and how it works out for you.
Best Wishes, Fabby
PS~ Just wanted to add that I do remember you fondly as Kstone, welcome back on your new name, and to please tell your mother that seeking relief from demoralizing pain is the most natural thing in the world. If that doesnt work, simply dont tell her. If it works, she will see the change in you and that will be enough. Its hard to hide things from people we are close to, but if you dont care for yourself first, you cant even begin to think about helping others. hang in there!
Last edited by Fabrashamx; 01-31-2008 at 04:33 PM.
Reason: adding post script
I am so glad to see so many people achieving pain relief on methadone. It makes me actually excited and hopeful that I will be feeling some relief soon too. My doctor told me last month that he will probably switch me to it this month and as terrible as it sounds, I am ready....I am tired of being a 7/8 on the pain scale.