I admit I used to hear complaints quite a bit over time professionally & personally in several circles about chronic pain. It was to the point that I was encountering it so frequently that I became somewhat less than sympathetic, or at the very least somewhat desensitized to the issue it posed to people.
It was not because I was immune or unsympathetic to the havoc myself.
For the first couple years after my lungs were surgically glued to my chest wall to prevent them from collapsing, I’d get pain. Significant amounts, actually. Especially with weather changes.
I used to joke that instead of the old lady knees that could predict the weather, I had the lungs for it. I literally could feel barometric changes in my chest. When hurricane Katrina moved through, I was still in New York but I felt incredibly off & painful that day. The spike was painful & concerning enough to me that I made an unscheduled emergency appointment with my lung doctor.
Nothing showed up in any images or breathing tests, but then when I described the pain, the doctor (on call for my doctor) did tell me that it could be the barometric pressure changes that were throwing my body off. It made sense.
From then on, every 6 months or so I’d get an episode of pain, & significant ones. Or I’d still get cysts popping & get pain from that.
LAM is a strange disease. It really can make you feel some pretty intense things with the changes that go on in the lungs. When you hit that lower functioning level, it seems more intense.
[End-stage lung disease as a general rule also lends itself to causing decent amounts of pain in & of itself.]
It wasn’t just LAM that was the focus of my pain sometimes.
I could always tell when my kidneys were about to go south & I’d need to have those tumors addressed & plugged to prevent bleeding because of my TSC. I would get these intense pain in my flank area, near the area of my hip towards the back.
Sure enough, they’d scan me a few months after at my next checkup & find something. So pain for me has always been somewhat of a radar, even if it wasn’t a daily nagging chronic pain.
There were times when my kidneys were in better shape I had a few options for what I could take when something over the counter wasn’t strong enough. Unfortunately, I have found now, that’s no longer the case.
My kidneys were doing much better as a result of me being on Rapamune for several years but I still have kidney disease. I still am close to potentially developing some impairment down the line. I can’t take just anything for pain.
That’s why articles like this one concern me & infuriate me at the same time. I don’t want to take an opioid like OxyContin to treat my pain.
I hate the side effects especially how slow they make me.
I know there are concerns about abuse & overprescribing. Yet, the sad reality that most people don’t realize is, for some of us, these are the only pain control options left.
I can’t take ibuprofen or naproxen or even an anti-inflammatory or muscle relaxer now for my pain (which has actually increased the closer I get to transplant) because they are not safe for my kidneys.
I used to take Tylenol arthritis because it had more acetaminophen (active painkilling ingredient) in it than the extra strength version but that no longer controls my pain. Not everyone can do that either because even though it’s kidney safe it can cause liver problems for some.
Drugs like OxyContin are kidney safe.
Lidocaine patches & those types of medicines work well for fractures & bone pain but don’t do much for just inflammation for most people. They are extremely helpful to my ribs if they are sore from surgery or if they are broken, but wouldn’t touch the pain I deal with from LAM.
I begged 3 of my doctors for another alternative when I reported this pain had increased in frequency but also become harder to deal with. They know after me having about 10 surgeries & really not liking pain medicine of any form that for me to complain it must be significant.
Yet as much as they were sympathetic all 3 agreed that although they hate prescribing opioids, that was my only option. I relented because I need to stay active & be able to exercise to meet my listing requirements. I can’t do that if I’m bedridden from a pain flare.
When the CDC makes these “recommendations”, they often fail to consider that a certain percentage of the populace might have their only option taken away if increased control & monitoring of prescribing comes to pass.
I understand there is abuse, but for many people (even those that build a slight tolerance over time) this is their only pain relief option, especially if they have any degree of kidney issues.
To tell them that they have to buck up & deal with it is easy to say if you’re not almost bedridden from inflammation or having a harder time breathing because pain receptors in the lungs are firing off constantly.
On top of that, to have lung & kidney pain simultaneously is very intense.
Anyone who has even had an iota of pain from trying to pass or break up a kidney stone knows how unbearable it can get.
This is not a competition as to say what pain is more or less important, just speaking to my own personal experience about what my chronic pain stems from & how it impacts me in real time. These are real medical issues that deserve real medical relief. The pain is a symptom of that problem & equally devastating to other symptoms. It’s not something to be minimized or patronized.
Since late February, even though I’ve remained active I’ve had a regular pain cycle of a flare every week, sometimes every 3 days.
The kidney pain returned just this past week the same day I was dealing with a flare of lung pain.
I absolutely could not go out, do much moving, or even exercise. I take the medication even though I hate it because I can at least get some degree of relief.
Most likely, I may have chronic pain post transplant because of the surgery itself. Especially if they have to make a larger incision to get these lungs out & also have to spread my ribs to make more space.
I’ll still have my kidney issues to deal with too. The fight is far from over.
The answer to the pain issue is not more regulation or interfering with doctor & patient decisions, but more investment & development into other pain medicines that are effective, kidney safe, & possibly with a less abusive potential.
I would certainly hope that this is on the pharmaceutical companies list of priorities for research & development because most of the opioid drugs have been around awhile now, they aren’t necessarily new. There’s already many generics available. Articles like this prove that there’s a market for more drugs & a real need for them.
[Also while medical marijuana has entered into the field of discussion in hopes of relief of pain it can interact with other drugs or not be the right fit for certain people. Not many states have legalized it yet either, which poses a problem for people to actually be able to access it.]
Of course, it’s a lot easier to criminalize, stereotype, & stigmatize people’s experiences with pain & think that everyone who uses this type of drug is out to abuse it.
We do know it happens, but generalizations do hurt those who are trying to find lasting relief. It always seems to impact those with less options & who are more vulnerable.
Most of us have also tried many non-drug alternatives to try & resolve the issue before moving to a stronger drug. For some people that works with varying degrees of success. It might not be enough in & of itself. Telling someone in chronic pain that they need more meditation or acupuncture is an equally annoying generalization to make.
The key is more options, not taking options away.
I know we’ve chatted about this before, but I was on the medical marijuana program in Arizona for about 9 months because of my allergies to the devices that have been implanted. I don’t have much of a choice – I HAVE to have the devices – but I have tried everything possible to get relief from the nerve pain. Quite honestly, the MM made me care less about being in pain, but it did not alleviate it. Gabapentin is an absolute joke. Tricyclic antidepressants don’t touch nerve pain, and like you said, neither do Lidocaine patches. Muscle relaxants are more like Tic Tacs to me. What helps? Opioids. What won’t they prescribe me? Opioids.
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I also have Lam and Tuberous Sclerosis plus a few other auto immune conditions. I look forward to reading more of your blog. The other day at my Rhemy appointment she said my pain level was extreme. I only take a small dose of pain killers for the auto immune conditions. I just can not tolerate them.
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