You know what sucks the most about Fibro?

It’s a loaded question because I’m sure that together we could name 10,000 things that suck about this disease.

The one that annoys me the most doesn’t have a word to describe it, but you’ll know exactly what we’re talking about. It starts with a good day. Things are going along fine, pain is manageable, reasonably good sleep the night before, good self-care, no changes in diet or exercise and no new medicines. Yet, upon waking the next day you find yourself bone tired with increased pain, you’re cranky, foggy and just feel sick. You’d love to go back to sleep but you know that – now that you’re awake – you probably won’t be able to sleep.

Familiar, isn’t it?

One perfectly good day followed by a flare. It’s the mystery of this syndrome. Things change for no apparent reason, without a single hint that a bad day is on its way.

I wish it were more like what (I think) happens for many people who must live with diabetes is (although I freely admit I’m not diabetic and am exceedingly grateful for that). The way I understand it, if a diabetic is conscientious about food intake, gets some exercise and takes medicine as prescribed, the disease is – in very general terms – under control. (Please, please correct me if you are diabetic and have a different experience. I actually like to be wrong, because it’s an opportunity to expand my thinking.)

By comparison, fibro seems under control and then kicks your ass when you’re not looking.

Has anyone cracked that nut? If so, I’d love to hear your story.

 

 

Lunesta is a nightmare

Five or maybe even seven years ago, a primary care doctor prescribed Lunesta to help me sleep. Insomnia has been an issue for me since early adulthood, perhaps even as a child – I’ve always been a night owl. But with the onset of fibro in about 2001, my quality of sleep became dreadfully poor. Even if I managed to get to sleep by 11 p.m., I’d be awake by 2 a.m. and up for at least a couple of hours. That made getting to work at 8 a.m. an increasingly difficult challenge. (I used to joke with co-workers that I was never meant to sleep.) Lunesta gave me a way to get some sleep and at least hold down a job.

What I didn’t know until years after that first dose is that Lunesta was never intended for long-term use, and anything more than two weeks is considered long-term. What I also didn’t know, until just a couple of months ago, is that Lunesta (eszopiclone) is psychologically and physically addictive, with detox symptoms that can include severe anxiety, muscle spasms, nausea, vomiting, tremors, weird dreams and sweats. Detox centers that traditionally focused on alcohol and opioid withdrawal are now making beds available for those detoxing from sleep drugs.

Shame on me for failing to do my research. Shame on the doctor who gave up on me and on continuing to look for alternatives.

I’m convinced the doctor didn’t prescribe out of malice; I remember more of a sense of hopelessness. His attitude was that fibro is something you’re stuck with and there isn’t much you can do. You will never sleep better, so using a drug like Lunesta was fated. Dangerous sleep with an addictive drug was better than no sleep at all. (BTW, I no longer work with this doctor.)

The one time I’d tried to end Lunesta on my own was disastrous. Within 24 hours I had all the side effects mentioned above. I was miserable and began taking it again.

The unexpected turn happened this year when my new primary told me that guidance from the CDC, SAMHSA (Substance Abuse and Mental Health Services Administration) and other federal entities included increased warnings against co-prescribing benzodiazepines and opiates. (Lunesta is technically not a benzo, but performs chemically in a similar fashion.) To rightly limit liability to her practice, my primary let me know she would no longer prescribe Lunesta as long as I was still being treated with opioids for pain. (A pain provider prescribes Nucynta for me. It is also technically a synthetic opioid, but as with the eszopiclone/Lunesta, it functions in such a similar way to opioids that there is no real distinction.)

It was devastating news and left me with a Hobson’s choice: I either live in pain but with some sleep; or I can have pain relief without sleep. Awful.

The difference this time is a doctor who truly cared enough to create a ‘weaning’ plan, using a bridge drug (Trazodone) that could help with sleep. While not nearly as powerful as Lunesta, Trazodone is a much less dangerous drug, although I may have to detox from it later.

I’m in the final stages of releasing Lunesta from my body. Today, I’ll drop down to 1/4 of a 3mg tablet and continue that for two weeks, then stop the drug completely. The Trazodone does seem to help, although it is not nearly as effective. I’ve had to concede to the likelihood that I truly have a sleep-phase disorder as diagnosed last year by a sleep specialist. More about that in another post.

Here are the key points from my experience:

  • If your pain is managed with opioids, say ‘NO,’ when a doctor offers eszopiclone or zolpidem (Ambien).
  • If you’re already on a sleep med in addition to pain meds, find a good doctor or detox center to help you withdraw. Don’t try to do it on your own.
  • Speak up, with your own doc and in general. The current prevailing media conversation – enhanced by continued pronouncements by the federal government – is that opioids are bad. Period. We need to engage in a much more nuanced conversation that takes into account the fact that many of us, when prescribed opioid medication for relentless non-cancer pain, are following doctor’s orders and playing by the rules. I suspect the majority of us fall into that category, yet we’re being penalized by a system that tries to fit everyone into the same, one-size-works-for-everybody solution.

I’d love to hear your experiences, thoughts and options that have worked for you as you travel this very difficult path.

 

 

 

 

‘Bradying Down:’ it’s an interesting experience

Many of us take trigger point injections to deal with the muscle spasms that can accompany fibro. Mine took an interesting turn today when I passed out, mid-injection.

The doc was working on an area behind my right ear with the goal of reducing neck tension and headaches (not all caused by fibro, by the way; as a writer, I spend many, many hours at the computer). In the seconds that passed between the start of the injection and when I regained consciousness, my left hand somehow managed to hit the doctor’s syringe, piercing the webbing between my left thumb and forefinger. (It was ‘through-and-through, from the palm side to the back side of the hand.)

Although only out for a few seconds, I was seeing double, unable to walk and unable to speak for at least 10 minutes. The feeling was surreal and reminiscent of a stroke experienced in 2010.

The medical term for what happened is ‘Bradying down’ (sounds like ‘braiding down’ when said aloud). It’s a fancy way to say one’s heart rate has dropped dramatically.

Trigger point injections have been part of my therapy regime for years but never with a reaction like this. (Please comment – would love to hear stories from everyone, but especially from people who’ve had this happen to them, too.)

It was several hours before the foggy-headedness wore off. As I rested, quite a few questions came to mind: is chiropractic a good alternative to injections? (Many chiros now use an instrument for adjusting; I wonder if that provides the same kind of relief minus the needle?) How does one work as a writer without curling over a computer all day? Are there alternatives – Somatic training, Pilates or alignment practices that will loosen chronic neck tension? (It’s probably an easy ‘yes’ to the last question.) I’ll do the research and report back here.

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Welcome to Fibrowell!

It’s hard to do life well when you hurt.

We deserve better information about fibromyalgia and we deserve the right to find it without spending hours and hours online.

Fibrowell is a place where you will find a well of fibro-related information that’s actually useful in real time. (To put it another way: tips, tricks, experiences and insight to try right now.) No cures, just stories and info about what works well for other fibro folks.

You’ll probably see the occasional rant, too – particularly about pain management and why attitudes and big business (pharma) both need to change.