Health & ME/CFS

Frank Talk, Part 3: Pain Meds, My Personal Journey

Frank Talk On Pain and Pain Meds:

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.

Next example:
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!

4 thoughts on “Frank Talk, Part 3: Pain Meds, My Personal Journey”

  1. Ash, I’m afraid you wont want to hear this, but I have been incredibly fortunate to run into an alternative type of exercise which is just the type of re-alignment from which you would benefit. And it is of course, not cheap. I had been in a lot of pain the first few years, even after some rounds of physical therapy when a naturopath who listened closely to me called his wife at home to get the number of the practitioner of Muscle Balance and Function Development. I actually didn’t know what I was getting because I had referenced what a massage therapist had done for me. It has really saved me pain wise. MBF for short is a total body program, which is one reason I think it works better than PT, because the whole body is connected. They also consider the right position from which to perform the exercise and in the beginning most of it is laying down, making it very accessible. They also consider which order to put the exercises in. This allows the muscles that haven’t been working very much to start working better and the ones that have been overcompensating to work less. Thus realigning the body muscularly and reducing pain due to correct alignment. It’s an overlay of biomechanics onto the body created by Geoff Gluckman. This is what also helped me regain a lot of my function and endurance, lots of PEM of course.


  2. Wow, Ash. This is immensely brave. I hope the tapering is going well. I can’t even imagine the challenge of that withdrawal, with your baseline pain as severe as it is. I’m on LDN (just 2 mg…I keep meaning to up it). I had to drop the Norco I was taking at night to help me sleep in order to start it, but those are M&M’s compared to what you’re dealing with! I hope you find the LDN helpful. It has helped my sleep and boosted my energy a little (maybe the latter because of the former), and it has helped my pain some, though not eliminated it. I’ll be watching your journey with interest – I have been through a terrible withdrawal experience (benzos), so I know how hard it can be to think, to stay calm, to deal in the midst of that process…I wish you all good things and smooth sailing along the way.


  3. I too wish you well in your journey my friend.

    I don’t understand why some folks think that those of us who take medication (pain medication) are not interested in or have faith in other forms of pain management. Most certainly, we are and I believe there is more than one way to manage pain.

    My doctor said he knew 2 or 3 people (in his practice I guess) who had gotten better from fibromyalgia. He said they were the exception in that they did not have to worry about things like money, or work, nor did they have many responsibilities that are stressful, like raising children, keeping house and home, or in my case, being a caregiver of a relative. He said these rare patients were able to focus 100% of their time in Physical Therapy, Rest and Healing. I tried to see this as hopeful, instead of me not being one of them. Maybe I can master my stress, I thought to myself, and dedicate my days to healing.

    Thank you again for this series! I’ve absolutely loved reading what you’ve written so far, and lately, it is hard for me to concentrate, so I am glad it was so well written that it was an easy read.

    Wishing you Peace, with lots of hugs and love coming your way,


  4. Thank you all for your comments!

    Patricia Hess, that does sound like it would be helpful, and is something I will try to look into when I have the available funds. I appreciate your telling me about your experience with it.

    Jocelyn, it’s great to hear the LDN is helping you, at least some! I’ve been in pain so long, I don’t expect to ever be pain-free, but if LDN can give me comparable results to what I’m used to, if it’s a tolerable level, I think it will be much better for my body. Opioids are not without side effects, and at least my body will get a break for a while. I’ll also lose tolerance, so if I do find LDN doesn’t work for me, I can re-start opioids at a low dose. Thank you for your encouragement and support!

    Michelle, thank you for all your comments, all your support, and all the encouragement you have given me – they mean more than words can say!

    *gentle hugs* all around from a very tired Ash


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