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Going off pain Meds after 15 years

Hi, I hope everyone is doing well. I have not posted in quite a while. Ran into some bad luck. I had a Cauda Equina, a Vertebral Colapse, and a serious case of Flat back Syndrome.needing  surgeries. I became septic, they went in again & I was home on antibiotics. This was 12 spine surgeries none of which were voluntary for me. I am 66 years old.  Have been on opiates for the last 10 years & off & on the 5 years before that. Am also on Gabapenten 800 twice a day, Topamax 125 twice a day, Wellbutrim 125 & Thyroid meds. Was on Morphone 60mg BID & Dilaudid 2-4mg for breakthrough (never took). My Cervical Spine is fused from C3 to 6. I am fused from T8 to my SI joints in my Pelvis.

I have pain. I will always have pain. My spine is deformed. My head is still bent forward.I have severe kyphosis.  They would have to crack my already fused cervical spine & place rods in the back to get my head up. I need an upright walker to walk outside the home. I was the the beach for the first time in 4 years & able to walk & so happy. My MRI is not readable to to infarcts but my problem is muscle atrophy, Am in Aqua Therapy. I want off these meds. I asked the pain management doc to decrease the Morphine to IR 40 mg BID. He said no. He said to take one 60mg a day. with 2mg Hydrocodone's for withdrawal. I started a week ago & am suffering, terribly. This is not the way to do it. I know that. I was addicted to potato chips. You can't tell your body - you can have potato chips 12 hrs a day, the other 12 - no. The withdrawal is terrible. I am crying, sick. I am taking 2 - 2mg dilaudid 6 hours apart. I did an opiate calculation & I am down 16mg but, this way of coming off Morphine is wrong. I know it. I am ready to sign myself in somewhere just to get relief, but I am afraid as I am an old, disabled lady. This doctor has a racket. Everyone at his practice is involved in a legal dispute & he does depositions, all day long. I am plain Medicare. He has no interest in me. No lawsuit. My surgeon is away till August. I have an appointment when he returns. He is the head of the large University in the City. I can ask if they will manage my meds for 90 days or send me to someone who will . But, in the meantime? Any thing you did that helped you is appreciated.. God Bless you.

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Comments

  • MaryAnn

    My heart goes out to you in your suffering

    When i withdrew, i drank  Pedialyte and other drinks along with water to keep me hydrated and my electrolytes somewhat in check.

    There is no easy way but to hang in there, eat nutritious when you can, stay hydrated.

    Hang in there and i hope some other members can add their wisdom in these horrible times. We are all pulling for you here!

  • Thanks Bill. I  took off a Fentanyl patch years ago after a fusion & went through a terrible week. Was stupid & a lot younger then. Thinking of just stopping the 2nd Morphine? I will need a week or a few days when I can curl up in bed & vegetate. Actually, I am doing that now.Think the one 60 tablet of Morphine ER is just prolonging withdrawal. I wanted to do this over a long period of time. Am so angry with the PM doctor. Really do not know what medications are necessary for me. Take care.

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  • MaryAnne, my heart breaks for you! I'm SO sorry you're having to endure this. I don't have much wisdom on the subject since I was never on a huge dose but I've slowly weaned myself down from 60mg Percocet to 10. Fortunately my sweet primary doctor ended up overseeing my pain management meds and so she has let me go at my own pace. I would go down 5mg and wait until my body adjusted before I went any further. The last 10 has been the hardest to let go of. I know what you mean about feeling like an old disabled person (I'm 70) but we're not! We still have value especially in God's eyes! Your doctor sounds awful and I hope you can get into your surgeon soon and he can be your advocate. I'll sure be praying for you, you've been through so very much. Remember we are here for you, you aren't alone! Please keep us posted as you can. Hugs!

    Joanne

  • MaryAnne59,  

      My goodness!  So sorry for all you have been thru!

       I too have been on opiates long term.  More than twenty years now.  8 years ago, before finding my PM doctor, I saw a great MD for 13 years.  He had me take drug holidays every few years.  It helped with tolerance.  He would first slowly switch my long acting meds to short acting and When I felt stable we would go very slowly.  If I made a drop but had trouble adjusting, I could go back up and then try again when I was ready.  It made a world of difference to have that control.  Then I made the decision at what point I wanted to stop.  It was different with each one.  Sometimes I would ride it out to the end and other times I felt able to just stop.  The slower the better and I swear I had very little withdrawals after the initial couple of drops.

    Its more difficult to wean using long acting meds.  It's fine at first but at the end they just take too long to leave your system.

    Why do some doctors act like it's imperative to do it as fast as possible?  Makes no sense to me.  Going slow gets you to the same finish line and with less withdrawals.

    I absolutely think you should talk to your surgeon.  While you are waiting, google narcotic weaning schedules and see if there is one that you might be comfortable with.  The longer you have been on them, the slower the taper should be.  There are templates online where you just plug in the drug and dosage and it figures it for you.

    Remember to have Immodium, anti nausea meds and just Google for what else you might need.  In my opinion, there just is no reason to be sick as a dog to wean off meds.  

    Please let us know how it goes.I

    Cindy

  • Thank you all so much.

      Cindy, your PM sounds like a gem. It must be so nice to have a doctor who cares about you & will work with you. My PM is a lawyer's doctor. Everyone there was in a car accident except me. And no one looks bad - no canes, limping, walkers, braces. They are all suing. I think the doctor is basically a nice guy who just got carried away by money. He has several houses, vacations, etc.  This guy (the PM) just looked at a picture of my x-ray & shook his head after my last very extensive Osteotomy & Fusion. He never looks at the records from the Surgeon I give him. He just writes for the same meds. I see him for 2 minutes every 3 months.  I insisted on switching from a heavier dose of Fentanyl to this dose of Morphine pre-op, & they had still had a terrible time  regulating my post op pain in the hospital. The Surgeon is with one of the best hospitals in the country. The social worker asked me to call her if I ever had a problem. I am going to give her a call & see if I can get an appoint with a PM  at the hospital.

    To top it off, a friend of mine gave me his medical marijuana vape & oil. It is  kind of a racket in this state. You have to pay a doctor, $300 dollars cash, no medicare covers it. Then, you have to register with the state for $50. Then, it may cost $60-90 for whatever oil they give you. Now, I am not getting if the oil will get you inebriated or not. I never smoked it, but I was waiting till I got the $300 dollars together & going to try to see the doctor, register & see if it helps when I am in pain. Well, last night, my husband, who has had drug & alcohol problems throughout our 40 year marriage comes up stoned. He smoked that & some more. I kept telling him how sick I was. I needed help.  He never touched my opiates, but if I switch to the Medical Marijuana, how am I going to keep it in the house? I am so angry with him. Of all times to take a medication that was giving to me to use for pain. I was waiting to use it legally.

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  • Cindy, I just want to add that my surgery was very extensive. They cut into my rib & took bone, fused from T8 down to L3, & placed internal & external rods, screws. They also placed large cages in the Lumbar Spine. I became Septic & they had to go back in a week later & flush everything out, but that was 9 months ago. They removed hardware a couple months ago. The previous extensive bone removal & fusion was done in 2 surgeries in November of 2018 from L3 to the SI joints. I really feel I  have sufficiently healed to stop the narcotics.  I still have the flat back, the sagital imbalance, but  all my para spinal muscles have atrophied. Building up my muscles with a good therapy program is my goal. Wasted months doing nothing going to fake rehab going to PT at the PM's Physical Therapy place. Had me do the same 4 exercises. I was not a money maker for them. Had the Surgeon change it to Aqua Therapy.  If I could just have a possible PRN med, for death pain or outings, I would be so thrilled. God Bless you & thank you so much!

  • Wow!  Sepsis is so dangerous!  You had some guardian angels looking over you.

    as far as the vape pen and oil, I would certainly try it if possible.  

    You know I really thought in the beginning that allowing MM for medical purposes was a good idea.

    should have realized that it's only happening because money can be made on it.  Big money!

    with the procedure you describe in order to legally use it and then the cost of the MM itself, the average patient just won't be able to afford it.  How do they expect a person on disability to spend that much?

    The other issue with your significant other....I just don't know.  What did he say when you confronted him?  Will be stop if you ask him to?  If not, maybe get a safe and lock it up?  That's really sad that after 40 years he would hurt you like that.  I am so sorry.

    You said your PM deals mostly in injury cases that are involved in lawsuits.  Is there another close by you could try?

    Anytime you need to talk just send me a PM.

    Cindy



  • Hi Cindy, Joanne, & Bill,

    I got in touch with my Surgeon & he referred me to The University's brand new Spine Center - this involves everything I would need & I had a consultation with one of their PM doctors this morning. She said they can't prescribe anything for me or officially take over my case for another month/ 6 weeks. They are going to get a referral from my Primary Doctor - I am going to call them & explain. I have to get a urine test. But, I have plenty of my break through meds &  we both devised a more comfortable way for me to survive the next few weeks.

    She did not want to criticize my PM, but she said, she would not have done what he did. She would have given me a lower dosage of Morphine extended release 2-3 times a day & brought it done over a period of months. (What I wanted.)  In the meantime, I am going to take a 2mg Hydrocodone every 3-4 hr to start. I can go up 8-9. Plus Tylenol, 1000mg PRN. No Morphine.  She advised to take that for a week & then drop one Hydrocodone each week.  I don't know if I have that many. I might only have enough to go about 4-5 days & drop one.  She suggested that my primary doctor may write for more Hydrocodone if I need it, but I don't know with Medicare. She does want me to come off opiates as much as possible. She did
    say that if something flares up or I need them short term for something -
    that's another matter. She said she would probably increase my Gabapentin to 800mg 3 times a day. I hope not. At 66, my Senior moments are catching up with me.

    Is there a new deal with Pain Management & Valium? It used to be the greatest thing for muscle spasms. PM doctors were giving it out like candy. She said she could not treat me if I took Valium? I never really took it because it never did anything for me.  I said, I never took it. The pain doctor just told me to fill the prescription. I have bottles. of it. I took like, one a month. She seemed to think Valium was worse than Opiates? Said they will never prescribe it. She said it would not help with WD symptoms.

    As far as Medical Marijuana, she said they have physicians who can prescribe it. But, she said, get off the opiates first. Get clear first. I might not need it. To be honest,  I had a rip-roaring DonnyBrook with my hubby & he won't do that again. Unfortunately, some of the grown children in this family indulge in that stuff, so he can get it from them. I'd be happy with a glass of wine. With all the opiates, I haven't had a drink in over 10 years.  ( I don't have a problem. Was afraid to mix alcohol with the opiates. )  I  would like to have one. lol. Since 2015, I've had one extensive surgery after another. I would like to give Aqua Therapy & exercise a chance at helping this distorted spine. Did you say that the hardest part was when you go off your lowest dosage? So, when I am down to one pill a day & have to stop - that will be the worst?

    This isn't going to be easy, is it..... Oh, well. I quit cigarettes, years ago.. How are you, today?  How is your pain?   Everyone have a great weekend & take care!

    I
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