long term narcotic dependence , how not to be treated like a drug abuser?
An_251054 posted:
I have been placed on narcotic's long term,12 yrs, for ddd, degenerative disc disease. state laws in California exempted me from going into a hmo until this year. I had a wonderful pain doctor who told me I would have to be on this medicine for life or until I loss bodily functions being incontinent. When this occurs surgery is my only option. I was sad hearing this. The horrible pain left no good choice. I tried within first 3-5 years to ween myself off the medication at that point I was given ir medication which allowed me more leverage with my medication. Three tries landed me sick first try didn't know lol , second and third try took just bout four months but landed up back in er for the same pain not due to addiction issues which i never have had.I never once abused this medication taking it only as directed. Now I am on er extended release which I was told I had to use due to insurance issues. New hmo pain Doctor's first visit spelled trouble , before doc came in I felt like I needed to morph onto the wall for all I could hear was drugs, drugs and drugs,gulp I thought wow this is a fine how do you do ;( Doc comes in says little mentions I am on a high does, 60mg of Kadian and 30 mg msir for breakthrough pain. Well each visit became more difficult he did raise me up one time at my request for I wanted to get back to the dose I was on before the Hmo issues caused me a lot of difficulties loosing my old pain doctor trying to find a new one. Anyways now new pain doctor is sending me to a pain psy doctor whom I have looked up seeing he is a substance abuse doctor. wow , my meds are dwindling and I don't think I can cold turkey it myself due to the ill effects . I was told if one goes into detox once they fill the script they are listed with dea for life and never allowed narcotics again, wow thanks but no thanks:( I never abused this medication , I passed all urine screens . Now what do I do doctor shop right? That is what they say a abuser does;( I am so confused to why this is happening . I want a lawyer but live off state disability ;( Money is a rarity in my house;( I really need help , I love to be a good patient , I love to have a good relationship with everyone, headbutting is not my thing;( Does anyone have any suggestions? please n thank you;)
seabreezn responded:
Dear An_251054-
So sorry to hear your going through this emotional upset , pain & not knowing what to do ....I'm going through a very similar experience but , this note isn't about me !.
Have you tried looking for a " Pain Specialist " in your area ? Through this website or RateMD's ... as some of the " pain clinics " are run by Family Practioners etc , you can find out about your Dr.'s history through the above sites . You have to be your own advocate - other then the medication also tell the Dr. what you do for your pain as well= diet , exercise , spirituality , therapies etc .Also , it's good to keep a daily " Pain Journal " - it will show your peaks an valley's of pain , where you need to pace yourself more etc. A " Medical Synopsis " is handy for the Dr. to show your history of treatments , dates , Dr. & outcome ( if you want more info let me know ) As with any Dr. if he isn't listening move on , if he's associated with a hospital you can also contact "Patient Advocacy "
dept . and tell them your looking for a specialist in the field & what your diagnoisis is ..
Meanwhile , hang in there & do what you can for yourself ...I know it's scarey but , know your not alone . I've been experiancing a very similar situation since last June an reaching out is a good step ..Deep belly breathing helps with the stress your feeling , eating right and exercise as much as you can so you can stay as limber as possible . Talking , writing , reaching out to those you think can & will understand helps allot.
I wish I could help you more , I know how your feeling . There's been allot of changes in Healthcare throughout the US and the view on pain has changed as well ....Be true to yourself , research and try not to be intimidated by the Dr.'s . After all they are suppose to help you !! Be open to new suggestions using your research , commen sense & any connections you can make locally - how about your old Dr. , does he have any suggestions or contacts ?
My heart goes out to you , if you want to know about anything I've mentioned or just write whatever you'd like, feel free to reply to this email ...Please remember , your not alone ...Take care
ctbeth responded:
Hello Anon,

What is the surgery recommended for your DDD?
Have you had any treatment besides opiate meds?

Although the name of the syndrome is degenerative disc disease, it is really more of a syndrome than a disease. Most everyone has some level of disc degeneration by forty years of age.

The discs do degenerate, but it is usually not consistently worsened with time. In fact, many with DDD find that the symptoms do improve with time.

If would be advantageous for you to look up degenerative disc disease/ syndrome- even here on Web MD to get a really good idea of the pathophysiology and treatments.

Becoming incontinent of bowel and/ or bladder is not something that would generally happen unless you were suddenly to have a syndrome cauda equina, which you can also find info on via internet search.

There are many other treatments besides just opiates. A good pain management MD will give you of he options.

Quite actually, as an RN, I think that your opiate Rx of
"60mg of Kadian and 30 mg msir for breakthrough pain", is pretty steep for un-treated DDD.

Have you consulted with a neuro-surgeon about surgical options?

There is also no need to withdraw abruptly from the Kadian and MS IR. You can be titrated down aka "weaned" to a lower dose. You can also be medically supported through wd symptoms with Clonidine (Catapres) and a short-term benzo. You do not have to be admitted to a detox/ rehab to titrate down on you rmeds.

No, you will not be listed with the DEA for life.
If you do not have an addiction problem, you do not need to go to a rehab and go to NA and AA meetings and get daily therapy for a disorder that you do not suffer.

Your pain management MD should have info, and even perform the procedure right in the office, about epidural steroid injections, physical therapy, bracing, TENS, et al

A good pain management MD will offer you more than just drugs for pain management- plus- there are surgical options.

Regarding surgery: consider long-term pain versus short-term pain.

There is a gentleman who is a member of this community, who posts, upon occasion, different therapies and some percentage success rates for many listed.

Charles, if you're reading this, would you kindly post?

Thank you.
77grace responded:
Wow,I feel for you because I know how much chronic pain can effect our lives!
It looks like you have recieved some good adveice!
Berst thing I think and important for Pain is to try to stay calm ,don't let all this send you over the roof!Use only fact !
Why are you worried that you will run out of meds if you have never abused them and things are o.k. there??AS far as apain phsyc.I think the lable is more scarey tha the actual DR>
I think of it like if you have been in pain a long time lt affects the way you feel about yourself,self esteem ,etc!
Just a though.
Blessings 77grace
myheart5 replied to ctbeth's response:
Ctbeth Hi thank u so much for your kind response it really helped me and I am sorry it took so long to get back to you. I saw your reply and wanted to tell you how well I am doing My new pain doc and I had a meeting of the minds at last! I just did not understand what he was trying to convey to me due to being told such opposite information for 13 years from old pain doctor! I am on state disability and have zero options especially now the way all is money wise! Onset of nerve pain down left side was fast like a tooth ache and my primary doctor told me to go not giving me any other options so I thought this was the way it was:( My old pain doc only offered steroid injections and pills nothing else? As much as he helped me I wonder many things looking back regarding all that occurred there. New doctor has all the mentioned options u stated and what a difference, huge. I have detoxed off the ex meds and I am like a spring lamb lol so so happy! The doc was kind enough not to judge me, allowing me to decide which withdrawal option I wanted:) I decided to climb down the ladder I climbed up. I am almost done detoxing but now wonder if I might still have to ride a morphine/detox revolving door goodness I hope not:( Detox well lol what a fight:( BUT SO WORTH IT:) I found being more proactive as a patient serves me well and I am so thankful to all who responded giving me hope and a common bond to see me though:) I am way low on narcotics now and hoping to fully make it off I have learned so much about myself and these powerful medications that work great when needed. I just wished most of all when I told my old doctor I tried detoxing behind hind his back prior to er meds came into play he listened more to the flag I was waving and helped me. I did detox twice but pain returned fully and had to relent going to er for rescue:( The er doc gave me a stern warning to stay on meds, glup not a fan of making waves:( Now new pain doc has a dedicated team! I must admit I am concerned with steroids goodness I feel like I am caught in a squeeze play;( IDK what will end this saga but I am very hopeful:) Pain medicine is so complicated God bless the wonderful Doctors:) I thank you again n well sorry this is a book:( oxox to u for correct information;) I was so scared that first post;(
myheart5 replied to seabreezn's response:
dear kind seabreezn, much thanks for your wonderful and informative reply:) forgive me for not responding sooner, long story lol U nailed it I was so scared that day;( I had already been through one year of having to chase down the medication each month due to the new medi cal changes in my state of California;( I had few likeable options. I could keep old pain doctor and give up my primary doc of 18 years along with my favored specialist for my liver disease not good:( I have learned so much since my first post. Being more proactive as a patient is key! My old doc never asked me questions like this new pain doc who I love, especially since we have had a meeting of the minds:) A medical synopsis is a wonderful suggestion which lol I never even entertained in thought? I was told one thing by old pain doc for 12 yrs, he came highly recommended . No other doctors that cared for me suggested otherwise not even a hint like your narcotic dose seems a bit high ect.,I think the poor doctors have it bad n feel less said is less malpractice just a guess I don't know? I feel like I have to read their minds at times;( I am a straight forward girl loving clarity and do not do well with mind reading or deciphering body language , just slap me with it please:) I really needed sound help when I posted. I could feel the love u put in your reply , it really touched me:) Since my posting I've detoxed off er meds and feel wonderful but still in detox mode as I write you. I 'm hoping this detox will win the day but scared still deep down I will be stuck in a narcotic/detox revolving door;( Not a good option indeed:(During detox I have become more proactive as a patient and learned a lot about myself too! Detox yikes that is a whole other story as I continue to fight and see the door to freedom at last hoping I may open it and happily be freed;) I am so honored you took the time to reply helping me be calm lol and keep up the my fight:) I wonder about your situation too feeling networking is important If you feel like it please tell me more of your own journey with pain control. I have learned why the changes in pain medicine has been made understanding of course it was well needed. My goodness I have learned so much now!I am even more a where when my script needs filing! I am much more vigilant with this medicine. I've seen documentaries on it and wow now that the narcotic river is drying up abusers are going into panic mode I bet;( The poor doctors and pharmacist who want to do right by legit patients get fooled by the determined drug abuser not good at all ;( I also have found filling scripts has become very hard meaning more work for us ;( Anyways I am writing too much lol , I really have enjoyed this pain control camaraderie and never have had this before:) Last bit regarding your suggestion with old pain doctor due to being stuck in hmo after never having to go into one before for I was always exempt until the money dried;( I am poor you see n well I am blessed also God is my main staple for all that I do! Write when n if you wish! Again so sorry for such a long time in responding back thank u so much n take care;)
myheart5 replied to 77grace's response:
77grace Thanks for responding and I thought when I replied it was private lol oh dear well read my responses if you desire and thanking all who responded I really needed a friend that day! All responses I found very helpful! I was very scared extremely so that posting;( your right staying calm is key always lol panic mode never serves us well cuz we can not think clearly! I understand the running out of meds issue as a red flag of abuse but really did not explain the proper reasoning behind it which is a huge long story and NO never abused it and goodness wouldn't want too thank u very much I take this very seriously extremely so it was due to health care change in my state which became a huge challenge finding a new pain doc and getting it all sorted out partly my fault for I stalled on changing asking doctors who treated me at the time hoping they would direct me on the proper path but even they could not tell me any helpful direction to go in so began my struggle. I tired hard I did to sort it all out , it just took more time then expected! It is hard being sick and being alone trying to figure it all out but you asked a smart question thank u:)
ctbeth replied to myheart5's response:
Hi again,

I think there must be something that I don't understand.

If I'm getting this right, you were taking 60 mg KADIAN (a morphine based med) and 60 mg of morphine IR to treat pain from degenerative disc syndrome.

You've successfully discontinued both of these opiate meds, and you're NOT having pain? I'm assuming this as you said that you're happy and feel like a "spring lamb".

This is a bit frightening that you were prescribed a fairly high dose of opiate analgesia, and you're not feeling pain now that you're not taking it.

If I were to discontinue my pain med, I wouldn't be happy nor would I feel like a spring lamb; I'd be writhing in agony spending my days horizontal in bed.

If you're not taking pain meds and you're feeling okay, what do you think happened? I'm not clear on your situation with the epidural steroid injections. Was this the treatment that has made you feel so much better?

Whatever it is, I'm glad for you.

Would you mind writing again and telling us a little more?

Thanks, and I wish you continued comfort,

debraharpole replied to ctbeth's response:
Some times when you have been on pain meds for so long you can have extra pain from the meds it self, and you don't realize it until you get off them. That was my experience in the past with some meds like Oxytocin or fentanyl patch it has something to do with the chemical imbalances it calls, your brain puts off signal to take more and your body responds with pain it's very weird but you can talk to Dr Drew about this and he can explain or don't be afraid to talk to your Dr about it. Good luck with your pain.
myheart5 replied to ctbeth's response:
hi Beth I was taking 60 mg Kadian one every twelve hours,120 mg daily and 30 mg msir ,three times per day,90 mg daily for breakthrough pain so 210 mg in narcotics daily.I am detoxing now looking here on webmb for information so I can figure out when I will be feeling better:) I was happy to be off my medications because I felt sick on them and sick off them,. I had become tolerant to them. Detox time boo hoo hate u detox but ur worth it;)ah that felt good to yell at detoxing! Spring lamb analogy just meant I was happy to be free off my extended release Kadian yes! Then I went down off the msir's now I take ZERO narcotics and it is day 15 for me God help me it is horrible but if pain returns in full force then what will I be riding the Narcotic/detox carousel? This is getting to be a nightmare of never ending suffering;( I just want to feel normal n sleep through the night without bathroom visits:( Now I feel like a old worn out goat lol with 3am colic;) my body is not in sync! If I have to return to narcotics as a pain relief choice long term u all will hear a dreadful scream of despair! Everything is up in the air right now we shall see how I do and surgery NEVER. Thank you for your comments it really helps me I do feel so alone at times of course no one would want to come to my detox party lol not even the hostess me;( mommy help lol those days are gone lol now I am the mom ha ha ha It was a sweet thought! take care Beth:)
myheart5 responded:
Just a humble note of thanks to all whom responded to my plight! I really was honored to have such heartwarming support during such a scary time;) I just noticed the date of my post it has been a year one whole year! well u all know I want to say time flys lol I just want to proudly announce I AM FREE and happily ,so far so good;) My pain is there but I am coping well off the narcotics, a day I thought would never happen! I do worry nerve pain is a sleeping volcano but shhh, to that;) I wish u all the very best in your own personal journey and if I get trapped again I will let u know but for now feeling good is wonderful:) all my love to u GOD Blessing for u all
myheart5 replied to debraharpole's response:
I agree 100% I become tolerant did not know ;( I feel stupid lol but yes the meds where causing me more pain on them then off and when it all goes wrong it is very bad indeed:) thank u so much for ur kind response , education is key wishing u all the very best!
annette030 replied to myheart5's response:
Good for you, myheart5. I am so glad for you. I am also an RN, like Beth, she was saying everything I would have, so I kept my big mouth shut, lol.

Take care, Annette
ctbeth replied to annette030's response:
Oh no, Annette!

Haha, please don't refrain from posting your thoughts and opinions because of me.

I feel bad for that.

You've always something valuable to add.


annette030 replied to ctbeth's response:
When I have something "valuable" to add I do, do not feel bad, lol.

Hugs, Annette