CleverChameleon

Hi, I’m here to try and get support and answers regarding tapering off the prescription pain meds I’m on, and the withdrawal symptoms I’m having.

To make a long story a bit shorter, I’m old enough to be a grandma, and I’ve been on high doses of opiates for over 12 years. All prescribed by a pain doc, no illegal activity.

In the late 1990’s I started having all over body pain that slowly got worse. I was misdiagnosed with fibromyalgia (more on that later) and when in 2005 my family doc was not comfy with prescribing more than Vicodin 5mg 4/day, he sent me to my pain doc who started me on Fentanyl patches, 25mcg/hr every 3 days which quickly became every 60 hours (2.5 days). Seven years later in 2012, as the pain and tolerance grew, I was on 75mcg/hr every 2 days plus oxycodone 10 mg 4/day.

After a failed 31 day stay at inpatient treatment place for chronic pain, addiction and dual diagnosis (the place was on “Intervention” and “Dr Phil” but got raided by the DEA while I was there! The doc was using) and a couple other attempts to try other pain meds, as of last summer I was on MSContin 60mg 3/day, MSIR (immediate release) 15mg 4/day and oxycodone 10mg 4/day (about 300mg morphine equivalent per day).

Now I need to explain the cause of my pain. In Oct 2015, I was finally correctly diagnosed with Lyme disease, not fibromyalgia, and I have a picture of the classic bullseye rash from 1995- the dermatologists I went to didn’t even consider Lyme. So I know I was infected in 1995. I started proper treatment and after 1.5 years, last summer I noticed I wasn’t having flares and breakthrough pain.

So I talked to my pain doc (pd) about tapering down and hopefully off the pain meds. Last Sept/Oct/first part Nov I tapered off the oxycodone, without too much trouble. I still have fatigue and other issues from the Lyme and from sky-high reactivated Chronic Epstein Barr Virus, so figuring out what’s causing what is hard.

Then on Nov 2 2017 my pd decreased one dose of the MSContin 60mg down to 30mg. I had some more insomnia but nothing too hard with using something to sleep like trazodone. (I’ve also been on Xanax XR 4mg/day for over 15 years)

Then just last week, Sun 12/31/17, we did the second 30mg decrease. OMG- now I can’t sleep and my anxiety in my chest is intolerable! I’m wondering- why these withdrawal symptoms now but not before? (And no other symptoms- no GI, goosebumps, etc) On Tues I was able to get my pd to prescribe Clonidine, and on Thurs 1/4 I had an emergency appointment with my psychiatrist (psyDr) who has been treating me for almost 20 years (Lyme can cause extreme psych issues). She also has experience working in a detox/rehab setting, so she prescribed gabapentin and trazodone. And said this second 30mg drop was too much- as the total dose gets lower, the withdrawal symptoms get worse and I have to make smaller reductions. (That day I got my pd to prescribe enough MSContin 15mg to make the decrease only 15mg until my next refill.)

The worst part for me, my psyDr told me that this anxiety and insomnia will probably last at least 2 weeks! (Because of the high doses for 12+ years) Instread of 5-7 days each time we do a decrease. I don’t know if I can handle this....!! It will take over 6 months to decrease, maybe 8 or 12, with smaller reductions, and the clonidine helps the anxiety but makes me so drowsy and with horrible dry mouth. I’ll be in a constant state of anxiety with insomnia or side effects— esp if I try to decrease every 2 weeks instead of monthly.

Has anyone had any similar experience? Experience with these meds to help with the withdrawal symptoms? Thoughts? Suggestions? I’m feeling so discouraged! I’m thankful my pain is down with proper Lyme treatment but how am I going to survive getting off these opiates?