Good evening Joe,
My name is Dani. It is very nice to meet you. As you can see we have a great group of caring members. This is a fantastic place for friendship, knowledge and support. Also, I wanted to mention that we have a "Chronic Pain Chat-Night" every Thursday evening. I usually post a "reminder" each week.
Do you have "degenerative" scoliosis? Or are you adolescent uncorrected scoliosis? I too, have "scoliosis". I am "Adult Idiopathic Progressive". I have a primary progressive thoracolumbar levoscoliosis and secondary thoracic dextroscoliosis. This last year I also have a "compensatory tilt" forming in my cervical area. I was "normal" 3 years ago. Now I am 5ft 4in (I was 5ft 8.5in a year and half ago) with obvious, yet stylish "marked deformity" curves and in a lot pain. Yikes the scoli stuff is terrible!
I do not see mention of a muscle relaxer. Do you take one? I highly recommend Baclofen. It does take a bit to get used to, but I am a busy woman and am able to function through the days. Just a quick suggestion.
I noticed a few things in your questions about BT meds, I thought I would put my 2 cents in for what it is worth.
Here's my question. How to decide when to take one's breakthrough medication? I ask myself the following sorts of things:
1) how many days has it been since I took my last pill;
*How many days you are having flares above what your pain meds take care of? It is something to bring up with you doctor regarding your current "daily meds" as it might be something more is going on or your meds might need adjusting. Don't let the "last pill" question decide when you need to reign in your pain.
2) is the pain level bad enough that without it, I won't get much if anything done;
Yes, true. But as a rule of thumb, if you are hitting 6 and transitioning into an 7, you need to take something. Constant high pain levels have adverse effects on your body in so many ways. Even your heart. Hopefully, I will remember to post you some information to check out.
3) can I put off what I have to do and just lie down for a few hours;
That is good. I "schedule" bio-feedback or nap time 30-45min per day. (not long because laying / sitting makes my hips burn and hurt terribly).Only problem is that my pain still spikes back up after I wake. Only thing it helps is the overall "muscle fatigue" for a hour or two.
4) is the desire for the feel-good element of the opioid inciting me to exaggerate my pain levels;
Did you know that less than 2% of chronic pain patients become addicted to their meds? Its true. I wouldn't worry about that. What you describe is "Relief" not the urge to use for the "side effects".
5) is it late enough in the day that I should just take the rest of the day off anyhow, etc..
Gosh, I am so sorry your pain isn't controlled better. You are on so little pain medication. Have you approached your doctor about changing or trying something new?
...Yes, you are being overly cautious. I wonder if you have ever seen a pain psychologist. They can help you in many ways. My pain psychologist helped me tremendously.
Does anyone else here just take the pain, even with ample meds available?
In the beginning I told myself all sorts of stuff to justify being under medicated. Constantly just "Tuff it out" sort of thinking. Thinking, foolishly that is was better. That I didn't want to become "addicted" or be "zoned out". There I was putting the same labels on myself, that I was constantly fighting against in society. I have been told quite plainly, by all of them, that I will be in pain the rest of my life. Even with surgical help to "structurally stabilize" my spine. Then later when I was sent to the pain psychologist, one of the first things she did was educate me about just what happens to your body with uncontrolled chronic pain and all the damage it does.
Your descriptions pain levels? It is inaccurate. You know why? Because each day you increase your body and your minds tolerance to pain. Everyday you increase a little bit more, and a little bit more. Your pain levels today are NOTHING like they were last year. The only reason you aren't on you knees screaming in agony is because you have forced your body learn to "survive" with immense pain. Your "level 5" today, isn't the same as your "Level 5" last year. All the excess adrenaline in your body (automatic response to pain) is doing slow damage as well. There are many aspects about chronic pain that hurt your body if left untreated.
This might sound silly, but hear me out, okay? ..... you will never feel as good as you do today, tomorrow. You will never feel as good as you do tomorrow, the next day. That is the very nature of Scoliosis no matter what "type" or "cause". So, stop wasting today. Give yourself days that you deserve. If you do decide on stronger meds or adding in a anti depressant or muscle relaxer, no one will just dump a full dose on you. It will be very slowly increased over time so you can still function and work. So, stop worrying about, this, and that... Instead, sit down and have a heart to heart with your doctor. Chances are he has been waiting for you to approach him. Give yourself a chance to be somewhat comfortable. Give yourself the chance to be at a level 4- all day for the first time in years. See what it feels like to have a low pain day and still be able to accomplish all the things you NEED to do. Maybe even a few things you WANT to do. You deserve it.
I am terribly sorry this ended up so lengthy. I have a terrible habit of rambling on and on. I do hope you get a chance to relax. Again, it really is very nice to meet you.