I have a rare neurological condition called “Pudendal Neuralgia.” It is so rare that it is not included on the National Organization of Rare Disorders (NORD)’s website. It mainly effects men, and the majority of women who have it usually get it from childbirth. For me, it comes from a mass of scar tissue being wrapped around my nerve, both causing chronic pain and nerve entrapment. The scar was discovered by a 3T MRI performed at the Hospital for Special Surgery in NYC. It is unknown where this scar tissue came from, and I had the condition over a decade before my son was born. Since he was born, the condition has worsened. As of right now, my insurance is refusing to pay for a repeat MRI at the same facility, where a technician is actually trained to locate the nerves my doctor is asking for. The MRI I received at a different facility without that specialist technician was a waste of time and money, as they were unable to even locate the nerves.

I have been in pain management for 6 years for this condition. Because this nerve is responsible for reproductive functioning, bowel control and contributes to being able to walk, it is not possible for my doctor to completely shut the nerve down. Because of the way the scar is on the nerve, it cannot be removed either surgically or chemically. My doctor and I do a balancing act of enough nerve blocks to keep my need for prescription medications low. It is a constantly evolving and active treatment.

As most people in pain management for chronic conditions are now aware, our federal government has taken it upon themselves to be active in the “fight against opioid abuse.” I will not go into the specifics of what they claim and what they want, other than to say that the CDC released “guidelines” that are supposed to “advise” pain management doctors in how they treat their patients. This is unbelievably insulting, as my doctor is very, very well educated and has been in private practice for decades. He doesn’t need some faceless government employee telling him how to care for his patients.

The CDC said that unless a patient is having cancer treatments, is dying or has a disease from a small list they created, they should not receive opiate therapy. Instead, they should take over-the-counter medications like Tylenol or Advil, apply ice packs or heating pads, learn coping strategies and receive “talk therapy,” to get to the route of their pain. They also said that it isn’t even desirable that these patients be “pain-free.” For people without chronic pain, of course they’d think those things.

Since I don’t fit the bill for opiates, according to them, I thought I’d test out their “treatments,” by trading them for my prescription pills for a day to see what happened. It didn’t go well.

I went off of my prescription pain medications, and replaced it with Tylenol. I can only take Tylenol because I take another anti-inflammatory drug that cannot be taken with any other over-the-counter medicines. So that’s what I took instead of my prescription, and I periodically sat on an ice pack. At first it was manageable, but then the pain kept creeping up. The Tylenol did nothing, but the ice gave a little relief. That relief is short-lived, as you cannot keep ice on your body for very long or it will cause damage. Once the pack was removed, the small relief was gone.

I was faced with a problem- how the heck do I make the pain stop?! I couldn’t take more Tylenol or use another ice pack for a few hours. There was no way to get the pain to break.

The pain was incredible. I haven’t felt the pain that clearly for years, because I have been able to manage it. It felt like the nerves were on fire and being pulled on, all at once. It felt like someone was stabbing my legs, and yet there was also a dull, constant underlying pain. There was nothing I could do to make it stop. I couldn’t even sleep, the pain kept me awake for hours, 10 out of 10 on the pain scale, as my doctor would ask me. I got to the point where I would do anything to make the pain go away, but I was out of options.

I did not feel “withdrawal” symptoms. I didn’t feel sick or shaking or hot. I didn’t start craving medication. All I could think about and all I could feel was the pain from my nerve. While I was up in the house I could at least temporarily distract myself, but in bed there was nothing to do but feel. It was the worst agony I’ve felt in a while, and I had a c-section. It was also hopeless. I knew there was nothing coming to make it feel better, that it would not “heal” or go away on its own. Unless I took another prescription painkiller, this was what I was stuck with. I stayed the course until it was 8:30AM and I was still writhing and could not take it anymore. I gave in and took my medication.

I cannot imagine what it would be like to not have that solution, to not have that option of making the pain maybe not go away, but at least lessen. Of not sleeping, not eating and not even minimally functioning because all of my attention is on that one thing- the unrelenting pain.

I understand that there are people taking these pill illegally and dying from them. But I am not one of them. I may not have cancer and may not be dying, but I have a genuine physical problem that causes endless pain. If the ER doctor doesn’t know what my condition is, I doubt the advisors for the CDC “guidelines” have any idea what it is either. They didn’t take people like me into account. Their options are not actual options for people with true, physical chronic pain. If it was as simple as “put some ice on it,” wouldn’t that be enough already? Saying to me that having my pain reduced or nearly eliminated isn’t “desirable” is the ultimate in self-serving, political hubris. It assumes that they, these political professionals, know more about what my quality of life should be than I do. It means that, for them, serving the obligations to politicians who have never even stepped foot in a medical school is more important than letting the actual doctors treat the actual patients.

Make no mistake, I lost someone I cared about to an overdose of illegally obtained medication. But I do not think that my pain management should be altered because of the illegal actions of others. That is what the current government agency attitude is: punishment of the innocent in a flawed attempt to force the guilty to stop their criminal actions.

I don’t believe I have ever done anything in my life to deserve the kind of punishment the government is trying to enforce on me.

 

If you would like more information on Pudendal Neuralgia, please visit these websites: http://www.obgyn.net/pelvic-pain/taking-shame-out-pudendal-neuralgia

http://www.pudendalhope.info/node/2

If you would like more information on chronic pain & its management and the “opiate epidemic,” please visit: http://www.uspainfoundation.org/

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