After 15 years on Opioids for pain - will I ever feel ok?

Question

Hi - I've mostly posted in the pain management community, but I am much more interested in the withdrawal from these meds now. I was prescribed ever higher doses of narcotics - first just Tramadol, then you name it. I have Systemic Sclerosis, tremendous spinal degeneration, and MS - Progressive. After a while, I realized they weren't actually taking the pain away! I was desperate for relief, yet nothing worked.

Meanwhile, the Systemic Sclerosis ruined my GI tract, lungs, joints - and my esophagus is nothing but a flaccid tube - so gastric contents flow both ways! Let me say, that even trying sleeping sitting up, didn't stop me from aspirating these acidic contents into my lungs. I was in the hospital constantly - young kids to raise - not easy. 2 weeks before my daughter married, I almost died. I was intubated - given a slim chance. And I was doing the whole wedding!!!

I lived, she had a nice wedding. But even on drugs - the back pain was so intense, I screamed bloody murder. My son had to carry me home and place me in bed!

So why take the stupid drugs? I wasn't on them for psychological reasons - just physical. BUT - that doesn't make the prospect of getting off any easier! I took less than prescribed - so had enough to last for 1 1/2 years after my doctor retired. After getting a new pain doctor - things were quite different. I had meanwhile reduced my meds from 300mg of Avinza (morphine), 60 of oxy, 200 Tramadol, 3mg xanax, and Lyrica!!!- to 120 of Avinza, 15 oxy, and 1mg xanax. On my way. Then I decided this year to try spinal nerve ablation for pain and get off the narcotics. 

I started tapering in January, and was off in August. When I stopped, I was only taking 15mg of the MSC. The whole year has been fatigue, and rls. I HATE it! But my pain is no worse than when on the drugs!!

Most importantly - when my doctor retired, I was put in the care of a paliative care Dr in the same practice. After several months he wanted to switch me to Methadone. NO NO NO NO NO - I wanted no part of it. He was the worst. When my mom died and I told him I was sad - he wanted to put me on anti - depressants! No - well, I was apparently a non compliant patient due to refusing the Methadone and anti depressants. Instead, I got off all the Avinza in one month - a surprise to him - yet he dropped me. I am still furious. Why he pushed those drugs, I will never know. I was the most aggreable, compliant patient ever. I'd been going to my previous doctor for decades - but this guy was very old school. I wanted no part of methadone. 

I wanted off the drugs - not switched to a synthetic. What good was that? None. So I was without a doctor for over a year - tapering with my leftovers. The new doctor (after the paliative Dr) wrote for 90mg of MSC, but I very quickly asked for less and less. Although I have been in control of all this - it hasn't been easy!  Pain and disability are constant. My MS has progressed to the point that I will be in a wheelchair before long. I am able to limp with a cane for short distances, but my back is intolerable. The moral of the story is that narcotics don't work for chronic pain. You develop tolerance quickly, and hyperalgesia eventually. I wish my doctor had made me understand that! Truth is - not even pain doctors really explain these things - I am very medically literate and aware - yet there is little written or told about the mechanisms of action of these drugs. Even less on withdrawal. It's assumed that withdrawal means you abused the drugs. But that is not true. Even well meaning pain patients get "addicted" - and getting off is not fun.

The worst part of withdrawal for me is the rls - I get it in my torso and arms - it's the worst feeling! Plus zero sleep! I've been off everything but the Tramadol for 4 months - but I still have the rls, and no sleep. My MS Dr wants me to try Neurontin, but it doesn't do anything for it. Clonidine helps, but makes me weak. 

After reading several posts from othets trying to get of opioids - I notice lots of people are put on Methadone or Suboxone - and making that trade seems only appropriate if you are using street drugs or can't get help tapering off or support with ct. As many have said - it gets into your system at a deeper level and takes longer to clear. For maintenance with pain patients who will NEVER get off - maybe that makes it an ok drug for them. But not for most.

I thought this might take a year - and I will have to tolerate it - because taking the drugs just doesn't make things better! It's kind of a horrible situation, right? I haven't tried Epsom Salts for the rls - I'd really like to have someone who would constantly rub my body - Indian burn my arms - anything! I will give one tip - lie on a massage chair pad. The vibration does help some. Any stimulation to take the awful feeling away!

Blessings to all of you going through this. It's the only choice! These drugs are only useful for very short term pain relief - no matter the lie the drugs make you belief! Peace!

motye51 · Answer

After I w/d from all of the meds I was taking I have to agree with Ftmill....it took AT LEAST 6 months before I felt a hint of normalcy. However, we so totally forget what normal feels like that I really believe we don't know. 6 months to a year......and quite honestly, I had to learn how to be normal again as well. We forget!

Ftmill · Answer

I was seeing a recovery doctor who really seemed (to me anyway) to really know his stuff.  He told me my brain needs to be free of all opiates to start the healing process.  He also said anything short of 6 months that your brain just thinks its on an, "opiate vacation" esp. after years of use.   I personally think the 'time' varies a little however it seems to be spot on with me... 

Have faith

Calamity2 · Answer

After I got past the first four days opiate free.  I felt a bit better each day.  Exercise helps work the toxins out and helps sleep better.

BOK2Bjan · Answer

I agree. Thing is - I never felt different on the drugs - I feel the same now. My only problem is the weird rls type thing. My mind is clear - but was clear before. My doctor wrote in my chart once that it was amazing that I never seemed effected by the drugs. There were times - especially in the early years, when the sheer relief of less pain was fantastic - but other wise - not much. But my body was being flooded with brain altering meds - there's no way they weren't doing a great deal! Time will tell. I still wish I could get pain relief now, without risking messing up with my journey of full withdrawal. I have bronchitis, and a few days ago, my throat was burgundy - and I couldn't swallow to save my life! I wanted something so bad. But I used a throat numbing spray and took ibuprofen - I lived, lol.