Hi Sue,
Reading this string has given me hope. But first, my story -
Back around 1985 I began having shoulder and leg pain. Tried anti-inflammatory meds, TENS, but nothing really worked. in the 90s I had shoulder surgery to clean out the joint, but then I developed degenerative disc disease. The pain would be intermittent, but when it hit, I was incapacitated. After a knee surgery I had sinus surgery that ended up being extremely painful. I think that triggered full blown Fibromyalgia. Every muscle would ache, my thigh muscles would scream at me while I sat at my desk. Sometimes it would be so bad I'd be at my desk beating my legs with my fists. Did physical therapy so many times with it only helping after surgery. Then I was taking anti-inflammatory meds, and finally prescribed tramadol. That helped a little. But over the next three years, with increased dosage, it rarely helped. I'd be in so much pain that it would make me nauseous and throwing up. It was not good.
In January, 2001, as a last resort, my Doctor prescribed Fentanyl patch. For me it saved my life. My pain, after figuring out the correct dose, was gone. I was back to work, and the only time pain would appear was when a disc slipped out. That year I was finally diagnosed with Fibromyalgia by a rheumatologist who specialized in Diagnostic Dilemmas. I also began going to a pain specialist.
The pain doc tried to determine all med problems that I had in a quest to figure out the best drug cocktail to fight and alleviate the pain. I began taking Gabapentin, Zonegran, antidepressants, anti seizure meds. Each one had its own side effects, mostly bad. He tried putting me on kadian, a morphine type med. That was so sedating I stopped after two weeks.
After being on the same dose of fentanyl for seven years, I started having break through pain. He wanted to prescribe Oxycodone. I said fine as long as the fentanyl dose was lowered. The dose dropped to 75 from 100s. He prescribed 30 mg tablets of Oxycodone, up to three a day. Most days I took one in the morning, one at night, but with breakthrough pain I'd take two. It seemed strong so I asked for 15mg tabs instead. That way for breakthrough, I'd take 3, 45mg instead of 60. I was allowed to take up to five per day.
Again, I stayed with the same does from 2008 to late 2013 (3 in morning and 2 in evening). I was getting more breakthroughs, and asked if I could take one more at bedtime, if needed. My Doc agreed. I've been on that dose ever since.
Last year they approved Medical marijuana in my State, with a really slow roll out. I started reading up on MM and thought it might help me off the fentanyl. Last fall I weaned my self off the antidepressants and mood stabilizers with no problems. But I did get more fatigued.
This year I asked my doc about getting off of fentanyl. He suggested going on an extended release Oxycodone, then from there tapering off. I asked about MM - he said he wouldn't prescribe it, not enough scientific data. He also told me I had to find another Doc to write the scripts, said the new
guidelines were too strict and his office could not comply with them.
I said I'd look for a different pain specialist. He agreed. The first one I called I had seen for epidural shots in 2008/9 . They had given up on me when they determined the shots were only lasting two weeks instead of six months. I asked for an evaluation. They turned me down, said they couldn't help me. The second one I saw last week. He blamed everything on the opioids, I'm guessing he didn't review my history. He said he take over my meds, and work on one pain at a time doing nerve ablation. Once the pain was under control, he'd get me off the fentanyl and Oxycodone. I asked about MM, he said he was researching it, but wasn't sure. He did say that if I tested positive for it, he'd stop prescribing the opioids.
Meanwhile, we were in Spain last May. While there I spotted a co-op store and went in. I saw a display of Sweet Seeds on the counter and asked what ones were good for chronic pain as well as being fresh. He recommended Sweet Afghani Delicious. I bought a packet of four seeds, and once home planted one, followed by another two weeks later. Once each was four weeks old, they were planted in the middle of my garden. They're doing rather well. Still in vegetative stage, still growing. I don't handle them much, and wash my hands afterwards. Don't want to inadvertently test positive, right? I plan on using gloves once they begin flowering, and will use a mask when I'm near them. I'll do the same at harvest time and when trimming and curing.
Meanwhile, I'm trying to decide if I want to try this new doc, or go to one more. My primary said I could check out three, said I must be comfortable with the new doc.
I did check out nerve ablation and found out it really doesn't work on fibromyalgia patients. But he's willing to take over the meds. It's a start, but I do have one more pain specialist to check out.
Either way, I want to get off the fentanyl, then the oxy. At least I've kept the same dosage for years. Still I know this body is addicted. I just want to get to the point where I don't care about getting new scripts and I can try Mm.
I saw Magnus8 was going off beginning in February, but he hasn't posted in months.
I also know that if I test positive for marijuana, my meds stop. I think that's ridiculous, especially when I want to use it to help get off the opioids.
I'm guessing it will come to a point where I'm going to face withdrawal. And with all my health problems, it might end up being in an inpatient facility. Still, reading this string has given me so much hope that I'll get off the opioids with help from MM. I just have to find a doctor willing to work with me.
K
