This is part of my series, Frank Talk On Pain and Pain Meds:
Part 3: My Personal Experience
My journey through the meds for the pain of ME/CFS and FMS started with Ultram (tramadol), a non-opioid medication. It did help for a while, but tramadol’s downsides are that it doesn’t tend to work terribly long (tolerance develops) and it also affects many areas of the brain, in ways similar to antidepressants, and can cause many side effects. It is also not helpful for more than mild to moderate pain, and as I became more ill, my pain became worse.
I was started on oxycodone, in 2002, and it was an incredible relief.
Not only do I have the typical “run over by a bus” pain of ME/CFS & FMS, bone pain from inflammatory arthritis, myofascial pain syndrome, severe headaches and migraines, increased sensitivity to pressure, etc, but then, there’s my back.
I have roto-scoliosis, an abnormal curvature & rotation of my spine. I had intense physical therapy for it as a kid, narrowly escaping being locked into a brace. For many years it wasn’t much of an issue, but with the onset of ME/CFS, it became one.
I’ve had physical therapy and massage, and that helped, to a point. But the fact has remained that the twisting muscle on the right side of my lower back is my greatest enemy, especially now that I have had some severe muscle wasting.
My lower back is always in spasm, but too much time vertical, and the muscle locks into a spasm hard as granite. It literally feels as if someone has stabbed me with a butcher knife and is slowly twisting the blade.
On the very rare occassion I venture into a store, I know going in I don’t have long. When the stabbing pain starts, I have roughly 5 minutes to get to the car before it becomes simply unbearable, too painful to even take a breath.
Muscle spasms like these are part and parcel of ME/CFS and FMS. When a body part hurts, our muscles spasm around the pain. I get them in my neck, shoulders, upper back… and they hurt, squeeze and compress nerves, and send pain shooting throughout my body.
Life before opioids came into my life was indeliably imprinted by the pain, and the struggle to avoid it.
I could give you so many examples of what life with the pain of these illnesses is like, but I will settle on two:
Most people think of time spent in bed as relaxing. But because of the super-sensitivity that is caused by complex biological changes in the body, just the pressure of my body, and especially by hips, against my bed was excruciatingly painful.
So my bed has become progressively softer, with the purchase first of a Cuddle-Ewe, a very thick wool mattress topper, which is actually a product marketed to fibromyalgia patients, and then a super thick (8″) and super soft futon to go under that. Total amount spent: nearly $900.
I remember my very first cruise, to Alaska, right before I was started on opioids, and walking with great pain through the streets of Skagway. A more picturesque town could not exist, and I was enchanted.
But as I marveled at the high mountains surounding this sea-side town, I limped from bench to bench on the sidewalk. I had plantar’s facsiitis in both feet (something I know others with ME/CFS & FMS sometimes suffer thru, too), and every step felt like I was walking barefoot on broken glass. Add in the back pain, and I was severely limited, although trying my damnedest not to show it.
Then came opioids, and relief.
I was on a combo of Oxycontin with oxycodone for breakthru pain for a number of years, before being switched to methadone. I didn’t like it from the start, and it was to have near disastrous consequences.
One hazard of opioid use is that they depress the central nervous system. This becomes a problem when you start to develop tolerance to the med, and the dose gets raised in order to have the same level of control over the pain.
Methadone, in particular, is known to be very bad where CNS depression is concerned, and the cause of many accidental overdoses.
I only knew I was slowly going from sleeping 12 hours a day to 16, then 20, and yet was never rested.
A sleep study showed the problem – here’s what I wrote in Feb, 2010:
Most sleep apnea is Obstructive sleep apnea, where there is something physically blocking the flow of air and causing the body to stop breathing temporarily.
Central Sleep Apnea is different and present in less than 1 percent of people with sleep apnea. What it is, essentially, is that the brain temporarily stops sending signals to the muscles that control breathing, so you repeatedly stop breathing during sleep. In the 5 1/2 hours I slept, I had 82 “respiratory disturbance event” which on average lasted 19 seconds, with the longest lasting 28 seconds. I never reached REM sleep.
There was only one option: wean off the methadone.
There are a number of blog posts about that ridiculously long and difficult process. Methadone is widely known as the hardest opioid to quit, the withdrawal the most difficult. There really was no reason I had to quit entirely, just lower my dose enough to get out of CNS depression, and lose my tolerance.
After 9 months, I switched from the very low dose of methadone I was on to Oxycontin again, as I couldn’t stand the level of pain I was in.
For the last two+ years, I’ve been back on Oycontin, with oxycodone for break-thru pain.
Flash forward to last month, and humiliation.
My PCP went on maternity leave in December, with the understanding that other doctors in her practice would continue writing the scripts for her pain management patients. It turned out that the other providers weren’t comfortable with this, and without telling her, the CEO of the practice decided that the entire practice would no longer do pain management – and we patients would all have to go elsewhere.
Finding a new pain doc is a nightmare, and expensive as hell, especially when you are caught without insurance, as I currently am. Coinciding with a wicked case of the flu and a sinus infection, this threw me into a tizzy.
After several failed attempts at finding a new doc, I went to see a nurse practitioner at my PCP’s practice, explaining my situation. I was sick as hell. They had said they would not cut us off until we found new doctors. I had an appointment with my PCP in 2 weeks.
The NP treated me like a drug seeking addict. Not with respect. Not like the chronically ill patient who has been seen in the practice for 5 years, during all of which I have been under pain management. My chart stretched out on the computer beside her, she told me I was “addicted,” and was visibly upset when I corrected her and said, “No, I’m physically dependant. There’s a difference.”
She should have known what the difference is. She left the room abruptly, after a rather long and uncomfortable exchange, and left scripts for 5 days worth at the front desk. God knows what she wrote in my chart.
It is the unspoken horror we all live with everyday.
We rely on our pain meds. Our pain is intolerable. But what happens if our doctors decide not to prescribe pain meds anymore? It happens all the time. Or what if they won’t agree to increase our dose when we develop tolerance?
We all know what happens if we run out suddenly: severe withdrawal. Nothing to be taken lightly at all, and in someone as debilitated as I am, something that could prove deadly.
Deep thinking leads to a radical decision.
I was, thankfully, able to contact my awesome PCP, who had given me her email address once, and she was appalled. She had only just found out about the decision, and had received permission to continue to treat her compliant pain patients, including me. She would leave new scripts at the office for me to pick up.
But the experience had left me deeply shaken, and re-thinking everything. I relied on one doctor to prescribe my opioids, and if something were to happen… sudden withdrawal, especially after so many years, can be fatal in someone as debilitated as I am.
And then there was this new med I’d been hearing about – but you can’t take it if you are on opioids.
Hence the decision I came to, as discussed in the Introduction: to wean myself off opioid pain meds, in order to give the new med in town – LDN (Low Dose Naltrexone) a try.
I welcome your thoughts, your comments, and your tale of your own journey through the world of ME/CFS & FMS pain. Please feel free to leave them below!