Tapering – Uncle

Happy Wednesday everybody. I might as well explain the post title right away, as I want to be blatantly transparent with this process…

I am stepping back on the second dose taper, effective this morning. I am crying “Uncle,” so to speak. From a pain standpoint, yesterday was the worst day I have survived in a very long time. I am not sure I can, emotionally and mentally, have another day like it again today. I was simply not prepared for the magnitude of hurt I suffered yesterday. Without a good plan to tackle this issue, I can’t continue until I’ve seen my pain specialist.

This is total insanity. To anyone who has stopped taking painkillers while experiencing excruciating pain, you have my utmost respect. However, I am not seeing this backstep as anything but a delay in achieving the final goal, at least for now. I don’t feel defeated, I am just hoping for some pain relief at some point, and I really need a nap. I haven’t slept more than 8 hours across two nights. If there is one thing that is crucial to Fibromyalgia, it is getting adequate sleep.

A couple of months back, I read an article that someone had written about Prince, who died of a painkiller overdose two years ago. The author posited that he did not die from pain pills, but from chronic pain. I hadn’t seen anything written from this point of view, and I agreed with it wholeheartedly. Chronic pain is a huge problem, and too many people suffer with severe pain to sweep them under the rug any longer.

I need to cancel the second of two appointments this week, because I can barely move. We missed hubby’s neurology appointment in Tampa yesterday, which is a 70 minute drive each way. There was no way I could have driven and been safe on the road yesterday with the misery I faced, and it was a good call. Today is my appointment for a long overdue eye exam. However, a dilated eye exam and the size of migraine headache I have brewing is not an ideal combination. Stuff happens when you have a chronic illness. I joked with the lady on the other end of the phone yesterday as I rescheduled hubby’s appointment, that it’s rough when you don’t feel well enough to see the doctor. Something you take for granted when you’re normal.

I will check in later this week. Have a blessed day!

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Tapering – Rough Going

Hi everyone. I know I haven’t checked in since I began my second dosing taper on Friday. For that, I apologize, especially since I had stated I would update last week. I haven’t felt much like myself since Friday evening, and even then was a little iffy. Writing has been the absolute last thing on my mind this past weekend.

I would be lying if I said I don’t want to give up doing this taper. Initially, I thought I was going to have a problem with getting my prescription filled this month, but it got worked out quickly and efficiently. That reason alone is why I use a pharmacy where I know the pharmacist, and she knows me. My doctor mistakenly wrote the prescription to be filled August 5th, not July 6th. Anyway, my point is, it doesn’t seem like I will have any problems with accessing the medication even after the new law. I technically don’t need to torture myself like this…

So, why do it? I am doing this for me. Many things my body cannot do anymore without help, like digestion. I used to sing, and had hoped to be on the worship team at church, but I have found since the opioids, I can’t hold a note long enough. Plus, with so much research out on the web that speaks of opioid-induced hyperalgesia, the last thing I want or need is more pain on top of what is normal for me.

I know the road to recovery isn’t necessarily going to be easy. I am finding this out as the hours tick by slowly between medication doses. The excruciating pain that I didnt have on my last dose reduction makes my brain feel foggy. I have pain in places I forgot I have. And I wonder if I have the fortitude, the chops, so to speak, to make it to the end where I am opioid free. The will is strong, but I’m not sure how the body will endure. And if the pain overrides my will, where do I go from there?

It’s amazing to me to think I am more than 4 weeks into this journey. I have come a long way, and yet there is more, most likely difficult road ahead of me. I have to make it… for me.

Thanks for listening and allowing me to ramble on as I walk this journey. Again, your audience is so very much appreciated! I will check in again soon.

Answers At Last!

Good morning y’all! I am awake, probably not for good as the cats woke me about an hour ago for their breakfast. But I usually use the time they are eating to do some catching up on news, or just browsing the web. This morning, my Google search for answers on this topic brought some welcome answers.

One of my more unpleasant side effects of the opioid medication is constipation (hey, just being real, here!) and one that has caused some serious complication in my life. At one point last year, a trip to the ER for what I was convinced was gall stones turned out to be constipation. However humiliating it was to be clinically diagnosed as “full of crap,” I came away from the experience more than wary of these pain meds. I know that opioids can slow bowel motility but I began to wonder to what extent, and how permanently. When I was treated at the ER, I was already following a prescribed regimen to treat the chronic constipation, but at that moment I realized it wasn’t good enough.

Funny how being chronically ill can make you into a chronic worrier as well. So as early as last year, I was already contemplating whether I had the chops to go through with this tapering process. The legislation that takes effect next week gave me the final push. So now, my usual Google searches still consist of trying to hit the keyword sweet spot… what combination of terms will show me exactly what I’m seeking. It’s not as simple as it would seem. This morning I was trying to find information (again!) about a connection between chronic opioid use and gastroparesis. Ten years ago, I had never heard of gastroparesis but now I am painfully aware that if things do not change for me, this could end up being my life. There are few documented cases of opioid induced gastroparesis, but these are the things I worry about, and cause even greater regret that I began this therapy years ago. Who knew that this search would actually turn up what I was looking for… tapering side effects, from a chronic pain standpoint! Who knew?

Turns out, a PDF from a Canadian university called McMaster University gave me precisely the information I was seeking. I now know that I can expect to feel “off” for several months during and even shortly after completely discontinuing the medication. I also know that most pain related to stopping the meds will subside, and that my original pain will likely return, but the intensity may be lessened. Because this paper didn’t specifically address Fibromyalgia pain, its difficult to still predict how I might feel after the pain medication is gone completely. But I have more answers now than I had an hour ago, and I’m pretty excited by that!

What was not good news, however, is realizing I still have months to go where I will not feel well. At this stage, the withdrawal symptoms have subsided until my next dose adjustment coming next month. But the pain is lingering longer than I think it should be. I can tell you that this continued ache, which feels like body aches from the worst case of the flu, 10 times over, has worn out its welcome. I’m not exactly happy to discover I’m still a long way from feeling better. Something I suspected anyway, but it’s disheartening to find out I was right.

There is still much information to read through on this new resource, which I will link to here, for anyone who is searching for this. Even though the university is in Canada, I don’t see a reason why the information couldn’t be just as helpful to those of us here in the US. It’s still North America, after all, even if a border separates the two sovereign countries.

As far as my journey goes, I’m still in the same uncomfortable place I was when I last checked in, but every day I pray it will be a better one. Maybe someday the answer will be “yes.”

Until next time!

Tapering – Days Nine, Ten & Eleven

Hello all! I hope you enjoyed your weekend! Mine was what is beginning to be commonplace. Friday night I was falling asleep at the keyboard trying to finish up the post, and I was up early for me on Saturday morning. We finally had some breakfast foods in the house (yay us!) so we enjoyed a warm meal together with my favorite coffee, well, my favorite flavored coffee. Dunkin Donuts is still the best coffee, hands down, but Barnie’s Santa’s White Christmas is still yummy even in June. Hey, if we can eat breakfast for dinner, then we can drink Santa’s White Christmas in June. Haha!!

Hubby wasn’t feeling well on Saturday. His MS has been bad, so we stayed in. I was happy for the opportunity to rest after such a long day on Friday. I think the withdrawal symptoms have passed for the most part, with the very occasional warm/cold sensation and woozy head. I was contemplating asking my doctor if we could speed up the taper and then thought the better of it. Just because I don’t feel the withdrawal is no reason to make myself miserable again. Besides, as far as pain is concerned, I still have a way to go before I want to reduce my dosage again.

Yesterday (Sunday) I decided that I had babied the pain long enough and cleaned my kitchen. I took it easy and in segments, and I finished it right around the time my back was telling me, “You’re done, kiddo.” With me not feeling well, it’s amazing how little time it took for the kitchen to get cluttered. I’m not prepared to say it was terribly dirty, but we were headed that way if I didn’t stop it. I paid for that extra activity today with increased pain. Sigh. If only I could do normal person things and not suffer the consequences for it.

The last two nights I have slept horribly, and I have no idea why. No sweats or feeling chilled, just not enough deep, restful sleep. I think my body is getting used to the extra Flexeril, because I’ve been taking it nearly every night at bedtime. Since I have to be up earlier than normal tomorrow, I won’t be taking it tonight. Let’s see how this all works tonight, shall we?

You would think for three days of journaling I would have more than this piddly entry. As much as I’d love to dazzle everyone with an exciting life, my doctor visit this week coming is about as thrilling as it gets. And hubby has one tomorrow, too. But for tonight, the cats are fed and sleepy, and I’m actually sleepy for a change. I hope this means good things for me overnight!

In case I forget to tell you all, thank you all so much for reading my journal/blog as I document how I’m feeling and what I’m doing. Some of you might not be so interested in all this daily stuff, but others like me might be looking for this exact thing. If you know someone who is going through this as well, please feel free to share this with them. I appreciate all of you, and thank you again.

Until tomorrow, happy Tuesday!

Tapering – Day Eight

TGIF, y’all! It’s Friday, and I’m beginning my second week of my journey with tapering off opioid medication.

This morning I made myself get up early to get my blood drawn for a doctor appointment next week. My primary care doctor does not know that I’ve made this decision, as I had only discussed it with my pain specialist. I can’t imagine he will be very happy with it, but as I said previously, I got myself clean from Cymbalta almost 5 years ago, very much against his advice. I’ve got this!

I have also found a tremendous amount of support among fellow Fibromyalgia sufferers from a forum I still belong to, but the website is for all intents and purposes, a defunct community. However, many people I met on this medium I still have contact with, and still have their support and friendship. Back when I was first diagnosed with Fibromyalgia, I didn’t know more than three other people who also had this stupid disease. What I found in this forum was acceptance and validation, friendship and fellowship, much needed information and advice.

I’d like to offer a few observations in general about all this. I know I’ve been trying to be upbeat, and at times painfully honest with my posts. We (hubby and I) have a lot going on in our lives right now, and to be truthful, I was not sure I would be able to handle the added stress of withdrawal symptoms and increased pain. But I’ve surprised myself. It’s an amazing testament to the healing power of the human body. The first few days were roughest as my body adjusted to the lower dose. But as my week has gone by, I am finding that everything is getting a bit easier. Of course, I’m not at 100%, nor will I ever be again, but I’m as close to normal as I’d have expected this soon. Good news all around.

As I get ready to close this out for the night, I am thankful I had written most of what was on my mind earlier in the day. Right now, I am fighting to keep my eyes open. I didn’t mention that I slept horribly last night, and up early makes for a long, tired day. But I made it! I wish you all a happy weekend. I’ll return with updates on Monday.

Tapering – Day Seven

Well, here we are on day seven, and I can hardly believe the time has passed so quickly. The individual days seem long and tedious at times, especially when I’m not feeling so good. Today was an indifferent day. Not too bad, but not good enough to head out and run errands. I am so behind on everything this month. Our fridge is empty, and the cupboards look rather barren as well. But I just haven’t had the energy to go get stuff at the store. That, and I’ve been avoiding going because our budget for food this month is nearly non-existent. I don’t miss my old bank job (though I do miss working,) but I sure do miss those steady paychecks. As a testament to our awful situation, I’ve dropped seventeen pounds over the last three months. I wasn’t trying, y’all. I call it the Austerity Diet. I don’t recommend it.

In the morning, we are up early again so I can give blood for my upcoming doctor appointment. If I don’t do this before I see him next week, he may blow a gasket. Although that sounds amusing, I am not sure this is something that would be wise to do, since he is one of few people who I trust with my Fibromyalgia treatment. I am sure he won’t be very happy to hear I am tapering off my pain meds, but I’ve stopped Cymbalta against his advice, so I am not worried. Besides, he’ll be happy with the weight loss.

I am anticipating a rough night of sleep, even though I took a fair dose of CBD right before bed. Sometimes you just know when your body isn’t going to cooperate. But I’ve had withdrawal symptoms at around the 6 hour mark every time today, although they are not as bothersome as they were on day one. Right now, my back has pretty severe pain, which is why I’m anticipating a rough night. We shall see!

In other news, I am working on a post for a tried and true recipe that is one of my favorite dishes to make and devour. My sister is a fab cook, and this recipe is hers. I can’t wait to share it with all y’all. As an aside, I have been informed that “y’all” is singular, to be used when addressing one person. “All y’all” is meant to be used when addressing two or more people. Gotta love the South!

I wish you all a productive and happy Friday! Hang in there, it’s almost the weekend! Be blessed.

Tapering – Day Four

Hello everyone! I hope your Monday went well. Today was actually a semi-decent day, for the first time since I started this journey on Friday. I was able to sleep comfortably through the night and woke up when I wanted to, not when the cats decided they wanted breakfast (Don’t worry, they didn’t starve all night long!) I’m guessing the better sleep was probably attributed to two things: First, a shower right before bed, and second, an extra dose of my muscle relaxer. Tonight I will be skipping the shower but not the flexeril. We shall see how this goes, hopefully well.

Since I got a proper amount of sleep for Fibro, the rest of my day was pretty normal. I managed to get a couple loads of laundry done, which is big for me, and I didn’t touch my CBD oil until around dinnertime. Up until this tapering thing started, I was on the fence about whether or not it actually made a difference in my pain level. I can tell you now with a great deal of certainty that the oil works, and it helps with my nerves, which are shot these days.

I really don’t have much else to report, so I will close out this rather short post. I wish you a wonderful Tuesday! Blessings!