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Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/16/2009 8:50 AM (GMT -7)   
Hi Everyone,
 
I was just curious and need company from other cp sufferers.  I often consider getting off the meds. Are there others out there, that consider it or have you just accepted the fact you have pain and without pain pills, you would be miserable? Last week, I tried to cut back and felt w/ds and it was miserable. I know others get off of them, but to live a life of pain is miserable, to go thru detox is also miserable. I was wondering if others struggle or there comes a point in time that if the pills, which ever, keep you somewhat comfortable, you just accept the pills are necessary. I think after over 3 1/2 years I'm seeing it. Last week I wanted off. I know I drive my husband crazy, changing my mind. He has always been the one to tell me that I am a "patient" and need them. Now he needs help also. (I wrote in the other thread, about his breathing). It is so hard when both partners have problems. I guess I'm looking for consolation and your views.
 
Thanks. Have a good day.
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 2/16/2009 8:58 AM (GMT -7)   
Hi Denim! Im sorry that both your and your husband are dealing with problems at the same time. That always makes things harder.

As far as your meds go, you can really only be the one to make that decision. If you want to try and get off them, talk to your doctor so that they can help to control your w/d symptoms. You should not attempt that on your own ever!

For me, i can tell you that it is NOT an option to get off. Thankfully, i have never had to struggle with the thought of "do i really need these meds?" For me, i would not be able to walk w/o these meds. I am actually thankful for them!

Anyways, you have come to the right place....everyone here is so great and so supportive! HUGS
Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/16/2009 9:08 AM (GMT -7)   

Thanks Shannon. I think part of it is wishful thinking--that is not taking anything for pain.

And yes, having both partners in bad shape is awful. I know this is a wonderful board, I come here all the time.

Blessings to you. I don't know how happy I would be with no pills. I have pain, if I was taking it for fun, no doubt about it, I'd be off.

Have a good day.


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 2/16/2009 8:24 PM (GMT -7)   
Denim, I hope that i have not offended....I want to make it clear that i was in NO way insinuating that you or anyone else on this board did not need these awful meds! I know all our lives would be much simpler with out all the pain issues we all deal with. I hope there was no missunderstanding....
Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 2/16/2009 10:11 PM (GMT -7)   
Denim, maybe this will help. I have occassionaly stopped taking my meds. My Dr. is aware and I have discussed this with him. I get to the point with the pain even with the meds that I wonder why I take the meds. I have to be careful on what meds I stop. I guess I just need to remind myself that pain is a part of my life and so are the meds. I have been on them off and on, more on than off, for the last 10 years. I struggle with wanting to be normal (whatever that is) and not be dependent on them to make it through the day. I also use the magical thinking that just a little time without the side effects would be wonderful. I don't advocate for people to do this, I do what I need to, with the DR. knowing to maintain what ever part of sanity that I have left. I have maintained a wonderful job for the last 5 years but find myself slipping due to memory loss and not being able to get the words from my mind to the mouth. Much of my time is spent in front of people speaking and I have masked it well but it is starting to show. Frustration gets me into trouble at times but I always comeback to reality that this is life and though I refuse to give up, I also accept. I hope you can find something in here to help.

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 2/16/2009 10:21 PM (GMT -7)   
I made the choice 7 months ago to get off of pain meds and it would have been impossible if it wasnt for the Subs. But I made the choice cause I have been on pain meds since I was 19 years old and my tolerence was just extremely high that it depressed me too much. but after many fail attempts to get off of them by tapering and taking other meds to "help" with withdrawals like clonidine and benadryl ,benzos, and some other stuff it just was too impossible. So after many months of research I decided to give suboxone a try and it has been a godsend for me, nto only does it help for withdrawals but it has been one of te best meds for my pain, I especially love the fact that it works so fast since it disolves under the tongue, that I get pain releif within 15 minutes. But after doing more research latly, they have several new pain meds coming out soon that are made with oxycodone and morphine to help not build tolerences, so maybe after those come out and I'm still in pain that needs meds I hope to give them a try. But I know I will always suffer with pain and will always need something to help, but I hope with the advances in medicines that hopefully I wont have to be on narcotics. I remember even reading an artical on a new med thats in the very very beginning stages of testings that is non narcotic but kills pain better then them and is nonaddictive that they hope to wipe off all narcotics which would be wonderful, but that maybe 10-15 years or more away.

-hellokitty
I have Migraines, Pancreatic Divisum, Severe lower back pain (possibly turned to arthiritis from lack of treatment), Fibromyalgia, Asthma, Depression w/Anxiety/panic, had glallbladder stones at 14yrs old, gallbladder removed at 15yrs old, 2 severe car accidents in '05
Meds: Suboxone 8mg 3xday for pain, Cymbalta 60mg @ night for depression & Fibro,
Lyrica @ night for Migraines and Fibro, Treximet as needed for Migraines,
Ventolin Albuterol Inhaler as needed for Asthma Attacks.
Chocolate as needed daily
Been on Diability since I was 22 for Migraines and chronic Pancreatitas but going to college Spring '09 to be a nurse
"Some days I just wish I was a missing person!"
"I'm not spoiled, I deserve all my stuff"  -Happybunny


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/16/2009 11:03 PM (GMT -7)   

Dear Everyone! Thanks for all of your replies. That's why I love this board. No Shannon, in no way was I offended, I can't even see why I would be, I re-read what you wrote and there was nothing there to be offended about.

I've gotten off meds by weaning, so it is possible but this last time, it seemed hard and knowing I had pain just had me feeling how I didn't want to deal with the pain, esp. since my husband needs me and I wasn't functioning well. Who knows, one day at a time.

Glad to here the subs worked. Don't you have to wean yourself off of them and is it true not all doctors will give it and won't at all for certain drugs? Anyway, I think it's fantastic you did it and I wish u the very best.

I think I know what you are saying John. Sometimes it's hard to make yourself understood on boards. But I always felt bad about taking pills and my husband would remind me that I am a patient and a few times had me take extra b/c the pain was intense. This last experience I think had me see that I do need them and today whan I showered w/o the agony I had the other day I was thankful.

Hope I made myself clear and I thank you all and you are all in my prayers. I know it's a hard life being in chronic pain. Bless you all.


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 2/17/2009 2:29 AM (GMT -7)   
I am sorry about not being clear earlier. Not a good day or night. I will add to what was stated earlier about going off meds. Even if I only go off for a day or 2, I always tell my wife. That way if she sees me acting different or not responding well, she can encourage me and if necessary advise me strongly to start back up again. Because of my work schedule, I try not to take my meds during the day as I can't afford to be fuzzy headed. I know that I am still under their influence as it takes time to detox but I can function better. That puts me behind by the time I get home from work and then I play catchup the rest of the night.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/17/2009 2:44 AM (GMT -7)   
Hi John, I believe in whatever works for you, do it. I don't get cloudy headed from the meds I take and if you feel better knowing you are off for a few days, I can understand that, if that's what you are saying. I think after this last week I have come to terms that I need this medication for pain. Taking less last week made a big difference and taking a shower without feeling it as being agonizing and difficult to stand made it pretty clear. No need to feel bad about being clear, I think I understood and I think we all sometimes have a hard time writing our thoughts out. I better get to bed. Thanks for writing back. Bless you and be well.
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 2/17/2009 3:27 PM (GMT -7)   
Denim I just do not understand why so many C.P.`s feel so bad about having to take meds. to function.Yes I do not like the idea that I have to have the med`s but I use a fentanyl patch that needs to be changed every 3 days, once in a while I forget and go 4 day.On the forth day I hurt so bad that I can barely get out of bed and I end up crying because of the pain.So what good would I be to myself and my family without it.I also take a anti-depression med. Potassium,every day and a B-12 shot once a month.I have to have these medications for my body to work right and to me my fentanyl and hydrocodone (for b/t pain) are just the same.Thy help my body to be able to work more like a normal person.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/18/2009 2:44 AM (GMT -7)   
I think it's because some of us have a past that may include the misuse and shame of it, and for some reason never got a toatal grip of it. Last week was horrible for me and after reading horror stories and various posts, I had a strong desire to stop. I felt bad about myself for having to take them b/c of my past, I believe--even though that was a long time ago. My husband sounded similiar to you, saying you are a patient now, but I had to feel it for myself and I think I finally did after all this time, and feel much better and freerer this week. Last week, it was very hard to even shower. This week I caught myself moving quickly and with a much better attitude and it's true, my life is miserable without the pills. My husband isn't well, so he suffers also, if I can't do things, etc. I think I have come to terms finally with the stigma I was having of taking pills and see how bad I feel w/o them and don't equate taking them or taking less as making me a lesser person, if you can understand what I am saying.
 
I am grateful to this board, to be able to express myself and hope I made sense at 2:30 am.
 
But that is basically my story and had to go thru this myself and am happy I did--and now really see how I have to have them to function and feel freerer finally.
 
Thanks for your reply, I am always happy when people answer.
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/18/2009 1:38 PM (GMT -7)   
Denim, I don't know how you have been having to take meds for pain. I do know that early into my need for opioids to control my pain I went thru the very thing you did. I was not totally convinced I needed these meds in order to get by on a daily babsis. I was put in the hospital for a week because of severe pain. That week in the hospital was the pits, I was so drugged most of the time all I did was sleep. Well, I made the decision when I got home I knew better than anyone, so off my meds I went cold turkey. Was I crazy or what? My pain mgt dr wanted to see me in his office one week after being discharged from the hospital. I went in there and told him that I had stopped my meds cold turkey, he nearly had a stroke, could not believe I was sitting there telling him this. After a real heart to heart talk with me I went back on my meds, that day when I got home. How did I feel, like a truck ran over me, then back over me to make sure he got me good. I never went off my meds again or even lowered my dose. And above all, I learned I needed to be on these medication for a very good reason, better quality of life. So, I understand where you are coming from., I think when we are all new to medications sometimes we question if we really need them. Susie


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/18/2009 4:08 PM (GMT -7)   

Hi Susie, thanks for writing me. I alway appreciate it when people take the time out to write. I think my reply prior to yours says why I felt bad taking them--past shame. Last week, seeing how hard it was to even stand to take a shower was driven home. This week I feel grateful that I have them. I am good for nothing pretty much without them. At least with them, I can do more, maybe not the way I was--I was an excercise, weight training, nut. But to give in finally after years, I am feeling better mentally. I was putting myself on an emotional trip, if that makes sense. I do need them and to just admit it, feels freeing. My husband needs me also to do things.

It does give you a better quality of life, it is actually ridiculous to even try to come down, I realize it doesn't serve a purpose but make me feel more miserable. I can't believe how long it has taken me to accept a lot of this. My husband would tell me all the time that my thinking was wrong and that I am a patient.

I need to go. Thanks so much for writing, I really love this board, it's the best. Be well and thanks again.  


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 2/18/2009 8:11 PM (GMT -7)   
denum i am so glad that you are feeling better about your medication.I am sending you a ((((((HUG)))))). D.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/19/2009 2:03 AM (GMT -7)   

Aw, thank u. What is your name, Denise?

I do feel better about it. It is a very freeing feeling. There's no doubt I need it. OTC meds don't make it and these do improve the quality of my life. I was able to take a shower without finding it so hard to even stand and it not taking forever b/c it was so hard. I was able to drive and get things done, while my poor husband is still not well.

I can't see how anyone would get off of them, if they were in great pain and miserable. The only ones that would are the ones who were abusing them and didn't need them. I have read horrible posts about the evils of these drugs, but I can't imagine someone who really needed them and weren't taking extra writing that way. Yes, I wish I didn't have to and yes, I wish I never hurt myself but I did and am glad that they help relieve me. Sure it would be nice if they weren't addictive, but they are and that's about it.

Thanks for yesterdays post and todays. My husband has been telling me this for years but only now has it gotten through that I need them and it feels better to just accept it and go on and make the most out of life now.  

Bless you and all on this board.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/19/2009 8:31 AM (GMT -7)   
Denim you are so right. I do understand your point on the why, but as you stated you were injured. As a result of these injuries you are stuck with pain that cannot be managed by popping a tylenol or two. Your need now is not the same as before. I am glad you have been able to come to terms with this issue. Hugs, Susie


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/19/2009 8:56 AM (GMT -7)   

Thanks Susie. It has been a horrific journey and I still think they could come out with better pain killers, but so far these allow me to get around and I'm grateful. I was at one time able to do more without as much pain killers, but I know I have a problem looking at the past too and equate less pills or no pills to (this is going to sound strange)--but a better person, because I had always equated drugs to being bad. You would think after all of these years it wouldn't bother me. Only now, after seeing esp. the shower--how hard it was to do, did I realize that I do need to take them and have to accept it. I guess I always was wishing to stop someday or at least take less. I was taking less and hurting, then took more, got off of those and thought that was doing something good but went back on. I also analyze too much.

I am grateful I can come here and unload and have kind people to speak to. All of you have helped a lot and I thank you all. Have a great day.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/19/2009 9:33 AM (GMT -7)   
Denim I think you hit it on the head. At some point we all go thru the wanting to get off the medications. I know when I did the stupid cold turkey thing it was that mind set that really got me in a mess to begin with. I was going to prove to myself that I did not need pills to function like a normal person. But once I went back on them, I saw the difference they made in how I could function. So, I just think we all get to that point at some time or another, I know I sure did. Even without your previous experience with medication, there is far more negative hype these days about them than we will ever hear good, so that in itself can be a compounding problem for many of us. I personally have not encountered the pharmacy experiences many here have over their medication and the snide comments, or the callous attitude from pain drs that prescribe these medications. Those things alone are enough to turn anyone off. The sad part is ignorance of so many people. Studies have actually proven that chronic pain patients do not become addicted to their medications, they become tolerant to the medication. I know I have always worried my doseage would get up high in my pump and then stop working for me. My new dr assured me a week or so ago that I had a very long way to go before ever becoming opioid tolerant.Have a good lpd day...Susie


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 2/19/2009 10:46 AM (GMT -7)   
Hi again Susie, yes, it is a mind set thing. Pain pills=bad. At least for me. I was an exercise, weight training nut, and that was my joy and represented health=good----I guess. Or I just want to feel like everyone else w/o pain and imagine, how good that was. It takes a lot of adjusting to, but going thru last week set my head straight to a lot of it. Now if only my husband could get relief and answers. I know I must keep praying but it is heart breaking and I feel helpless in helping him. Thanks Susie, be well. 
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