I've been incredibly frustrated this entire time and my energy has had to go into survival mode. Eat, sleep, try to take care of The Baby (who is quickly growing into The Toddler). It is amazing how being in serious pain can zap you of energy. Your brain whittles itself down, just trying to endure... Other things like having fun, doing chores, celebrating events (even ones that mean a lot to you like Christmas) have to fall by the wayside. Your brain is in survival mode thinking of only one thing, and that one thing is, "How do I stop this severe pain?"
I've been in chronic moderate to severe pain for nearly
Anyhow, when I had The Baby, something changed and I went from pain I could manage to pain I could hardly live with. And by live with, I'm being serious. Suicide has been a common thought in my most miserable moments. But, I don't want to die. I really just want to be able to live, preferably with less pain, or at least manageable pain.
Throughout this journey. I've really learned three things. 1) Most people cannot comprehend chronic (constant for me) severe pain. 2) Most people cannot understand the need for pain medicines and assume if you say you "need" them, you're an addict. 3) Most doctors are not genuinely interested in really finding out what is the real problem when it comes to back pain.
The first one is maddening, because people tend to associate certain sayings and thoughts with pain. Have you ever heard, "No pain, no gain." "Just tough it out." "Pain is temporary." "Time heals all wounds." "Pain is only what you allow it to be."? Seriosly, none of these comes close to applying to chronic, debilitating pain.
With chronic pain, there is no gain, there is no toughing it out, and it is certainly NOT temporary and time does not flipping heal it. Over time, I've tried to explain what it feels like but I have mostly failed, because pain is one of those things that is just hard to imagine. There are a couple of analogies I've used that help some. The first one, which is good for women who've bore a child: Imagine that you have the pain of late contractions (which unfortunately a lot of women have never experienced due to epidurals or csections) but their are no breaks between contractions. Also, there are no epidurals, and instead of lasting for a day or two (mentally easier to handle), there is simply no end. And there is certainly no release of fantastic hormones from seeing your baby, because all this pain is for NO reason.
If that analogy doesn't work, then if someone has had surgery for something extremely painful like a shattered bone or if they've had a kidney stone (both of which I've experienced), then they can have a better understanding. Except there is just no end in sight for the chronic pain and there are also no morphine pumps on hand either. And I've had some surgeries which were much easier pain-wise than the chronic pain I have! Give me a jaw surgery, meniscus repair or shoulder reconstruction any day over my back pain!
So imagine you shattered your ankle or had a kidney stone and you went to the hospital and they told you that you had to tough it out. They weren't going to fix it or give you any pain medicine. They also told you they weren't even really sure you have kidney stones although it kind of looks like you have them on X-ray. Also, that severe pain is going to be with you for the next decade.
Now number two on the list of things I've learned (on needing pain medicines) is more of a judgement problem. Because people can't understand how pain can be constant and severe, they can't comprehend why someone would need pain medicine on a daily basis. The cultural stigma on pain medicines is that if you take it when you haven't just had surgery or been injured, you are an addict. Plain and simple. But wrong.
One of the problems lies within the fact that most people don't understand the difference between dependence and addiction. Addiction is a serious psychological problem where the person escalates their drug use over time when there is no physical need. A person addicted to pain medicine will take medicine to feel something, not relieve pain. If that person continues their addiction they will need more and more pain medicine to get high. Addiction usually causes the person to take more pills in just a few days than a person in pain would take over many weeks. Also, the person in the grips of addiction will do things that negatively impact their relationships in order to get high. They neglect everything in pursuit of drugs. (Whereas a person who is in chronic pain neglects relationships due to pain and suffering and will do anything to relieve their pain.)
Ironically, it is very rare for a person who is in chronic pain to develop an addiction. In fact a lot of studies have estimated the risk to be lower than ONE PERCENT!!! However, people who are in chronic pain do develop a chemical dependence to medications if the dose is high enough and is taken often enough. Chemical dependence causes the brain to become accustomed to having the medicine, and this is actually a great thing for people who are in chronic pain. It is that mechanism that allows the body to stop experiencing so many side effects and so the person doesn't feel the euphoric effects or other side effects like a person who isn't in pain would, if they took those medicines. However, it does mean that if the person abruptly stops taking the medicine, they will have symptoms of withdrawal, much like an addicted person would, but usually it is far less severe since they don't take high doses abusively like an addict.
Now one thing to mention is that sometimes people who are in genuine need of pain relief seem to exhibit drug-seeking behavior, like going to multiple doctors if one won't prescribe anything, or asking family members for pain medicines. This is called pseudo-addiction. It happens because a person who is in real, severe pain, is not being treated properly for it. The key to distinguishing this from a psychological addiction is that when that person finally gets proper pain relief, whether it is medicine, injections, or surgery, they stop those pseudo-addictive behaviors. I can sympathize with this totally. When you a suffering so much, you will do anything to end it, and that's where contemplating suicide sometimes happens.
The third thing I learned was perhaps the most maddening thing of all. I learned that most doctors do not genuinely care about doing everything they can to help their patients, even of those patients have been seeing them for a very long time. After I had The Baby, things got dramatically worse within my spine. However, the doctor I had been seeing, and trusted, for the past five years, was very reluctant to help me figure out what was going on.
I went to a supposedly well-esteemed neurosurgeon affiliated with the University of Tennessee and was treated as if I didn't exist. His first words out of his mouth were, "Well, this has been going on s long time, hasn't it? Well, i see nothing on MRI that I can help you with." I had to spend time trying to convince the surgeon that a ct was necessary even though I had had an MRI before (MRI is very good at detecting soft tissue and ligament damage, whereas CT is better at showing bone structure and abnormalities.) A week later I got a call that there was nothing he could do for me.
If I had been less educated and less persistent I never would have gotten answers for why I've been in chronic pain for 7+ years and why for the last 15 months, my pain has been unbearable and constant.
After months of waiting and many doctors weeded out, I finally found a doctor here in Knoxville that knows what they're doing and is thorough enough to find out what the problem is, instead of putting me through useless procedures designed to run up my insurance tab but are just a shot in the dark at helping pain. The doctor I saw couldn't believe what the other doctors had missed on my radiology report.
In between my spinal fusion, they left the disc in. Well that disc is not just degraded. It is now herniated and bulging out the back and pressing on my spinal nerves. On top of that (literally) is a complete ridge of bone spur pressing on the herniation and also my spinal nerves. The best guess is I herniated the disc while in the last stages of pregnancy.
The new doctor I saw said that the only explanation they had for doctors not wanting to fix this is: the fix for this problem is NOT easy. It will take plenty of time in the OR and there are risks since I've had surgery before. Yet, not one surgeon told me anything that was even on my radiology report.
And so you see, the pain is not in my head... It has a cause... Just like I'm sure Every person who struggles with chronic pain. And yet we are humiliated by people who think they understand it. People who think they are just stronger or tougher than the person suffering. People who think they would not need medicine if they were in the same situation. Doctors who think we exaggerate the pain to get medicines, Doctors who don't do their job well enough to find the root cause. Doctors who don't read continuing education and medical journals to see that there are new pain mechanisms, thought not to exist, being discovered (in 2002 it was thought that a disc itself doesn't cause pain, which has now been proved false with extensive study).
If you are suffering and in pain and are having trouble getting answers I urge you to do two things. The first is to pray. It was through prayer that I was able to discern the right doctors to see and to listen to. The second is to become your own advocate. I learned that most doctors are really only concerned about their bottom line and liability. If you have something that doesn't have a straightforward cure, a lot of doctors won't help you. Keep searching. It isn't worth succumbing to the feelings of doubt and wishing to end it.
You never know when your solution might be just around the corner. I went from thinking I was going to suffer with this the rest of my life to learning I have something treatable within a matter of weeks after EIGHT YEARS of suffering. And lastly, if you are suffering, please contact me. I will help you as much as I can by praying with you or helping you get help.
