Spring, the Season of Misery, Drugs, Infusions, and Pain Specialist Visits

With physical activity comes pain, and this being my most active time of year, I live with exhaustion, irritability, despondency, a shoddy memory, attention problems, and near hysteria. Because it's damnably hard to say no to the one thing that gives me appreciable relief, I ran out of narcotics early last month, and the withdrawal symptoms were like a rocket booster to my misery. (Actually, I go into withdrawal everyday of my life because I take my day's supply all at once.)

Today, I saw two pain specialists, the first (Tom) was the doctor I went to for a Ketamine infusion three weeks ago and then went back to for two Lidocaine infusions. Since these things didn't help, I don't anticipate seeing him again. The second one (Frank), I've been seeing for many years, but like nearly all doctors anymore, he works for a mammoth medical group, and one of the limitations he has to live with is that he isn't allowed to administer drugs by infusion, which is why I went to Tom. When I saw Frank today, we discussed Tom's proposal to switch me to another (even stronger) narcotic and the fact that I had turned him down because it would have overridden Frank's order.

Frank agreed that the drug proposed by Tom would help stabilize my moods (I go from heaven when I take my daily narcotic dose to hell when it wears off). He then offered to prescribe it for me, but he said I needed to know that, since the drug has historically been given to addicts to wean them off heroin, it carries an unfortunate association that might haunt me down the road. Because I'm adamantly opposed to anything that might make a future doctor hesitant to prescribe narcotics, I told Frank that I would stay with what I'm on.

I then asked Frank to put me back on Ativan, which I've taken in the past in conjunction with narcotics. The benefits of Ativan are that it evens out the narcotic-induced mood swings, and that it helps keeps me from going to pieces when the pain is especially bad. Frank said that, unfortunately, a "black box warning" was recently issued in regard to prescribing downers and narcotics for the same patient, and that he would lose his license if he ignored the warning, and I ran into difficulty. Moreso than most doctors, Frank chafes at being forced to play games with the government and insurance companies, and on this occasion, he made his distress known with mild profanity. Doctors so seldom curse in my presence (I can only think of two that have done it) that I'm flattered when they do, the implication being that they trust me to not make trouble for them.

Yet again, I raised the issue of CBD, as I have done a few times in the past year. CBD is made from hemp and/or marijuana, and some people swear by it for chronic pain, but it too comes with a problem. Specifically, the consumer has to trust the manufacturer to truthfully state the product's THC content, and manufacturers have proven unreliable. What this means is that if I'm called in for a drug screen (which rarely happens but is always possible), and I test positive for THC, my narcotic prescription could be in jeopardy. Frank gave me his word that, unless my THC level repeatedly came back outrageously elevated (which shouldn't occur with any brand of CBD), he wouldn't pull the plug on me, but here again, I worry that something might end up in my chart that could cause me a problem down the road.

As my visit drew to an end, I again raised the possibility of trigger point injections. This is where a doctor takes a big needle (with a drug in it) and jabs it repeatedly into various parts of a muscle to relieve the horrible tightness that I live with and that never goes away. I've been there/done that with Frank, and although it didn't help, I'm desperate enough to try it again. He then told me something else that I didn't know. Specifically, he said that every doctor has a different technique, so it could be that I would have better luck being poked by someone else. 

Because I am not eager to see yet another doctor, I asked Frank if he really thought it might make a difference. He said no, and gave me two reasons. One was that I'm sufficiently thin that it's easy to find the appropriate places to poke. The second was that he's more aggressive than most doctors, so unless his previous attempts have caused me so much pain that I simply want a gentler doctor who pokes fewer holes, I would do well to stay with him. I had no idea that doctors' needle-poking aggressiveness varied (having never had anyone but Frank do it), and I told him that I would prefer that he be even more aggressive because I really need relief, the flipside being that I don't want to be poked by some doctor who's trying to avoid hurting me. I had wanted him to stick me then and there, but because I could tell that he was slammed for time, I suggested that he do it later. Maybe he would have suggested as much himself, but when I like a doctor, I do everything I can to present myself as an easy patient.


Andrew said...

Complex is the word that comes to mind, complex and distressing for you and a complex problem for your doctor. I think I would chance THC and see what the effect is. I guess it works quite quickly. If it doesn't help just stop taking it.

Elephant's Child said...

Pain is a totally sucky beast.
I was referred to a Chronic Pain Management clinic (a prerequisite for eligibility was chronic pain which had lasted for at least six months). The very young presenters told the assembled class (in tones which suggested that we should be amazed) that pain impacts on every aspect of life. They seemed surprised we didnt applaud.

Snowbrush said...

Andrew, the word "complex" brings to mind one of the most horrible diseases on earth: "complex regional pain disorder." Nothing can touch the ever worsening pain it causes, and patients who don't kill themselves go insane. My internist thought I had that, but fortunately he was wrong.

Sue, my hat is off to people like yourself who suffer so and yet are able to carry on with life and even to encourage others. Do doctors ever ask you to give a pain score of from one to ten? Where I live, pain specialists and their staff are hellbent on having patients report their pain level as a number from one to ten. I hate doing this this because I worry that if I name a low number, I won't be taken seriously, but if I report a high number, the doctor will think I'm bullshitting. The three infusions I received were given in a room with a lot of other patients who were there for infusions. Nothing was private, which meant that I heard the numbers that other patients were giving, and they were ALL around seven or eight, whereas I was saying, on different days, three or four. On days when my number is seven, I look miserable and find it hard (and undesirable) to carry on a conversation or even to speak coherently, yet these people were not in that condition. When she was a nurse, Peggy had to ask laboring women for their pain scores, and many of them would say ten despite being in early labor.

Elephant's Child said...

One of my brothers has a medical condition (so far undiagnosed) which causes pain (and partial paralysis among other things). He 'doesn't like' the word pain so talks about discomfort. For which he receives no help. Sadly I think you do need a high number to convince the medicos. I have (very rarely) been asked what number I would assign my pain. It varies.
It rarely dips below a five (a constant noisy background) but rarely gets about 8 or 8.5 either.

Strayer said...

I'm so sorry Snow. Does sound miserable. This is a bad time of year for me also, trying to mow the lawn, manage fixing everything, the pain lays me out after a couple days. My refuge is sleep. I take a teensy bit of Nyquil and sleep 12 hours and feel better.

Snowbrush said...

Here are various pain scales: https://www.healthline.com/health/pain-scale#types. The only one I ever encounter is the 1-10 numeric scale, but I rarely see it interpreted as it is in the link. For me, three to four isn't mild pain, but on the scale interpretation, it is. I would guess that men tend to give lower numbers. I also wonder which gender feels pain more. I know that in the world of labor and delivery, fair-skinned red heads report more pain that brunettes, and that black people are far more likely to be screamers than are East Asians, although I don't know what this means in terms of the intensity of their pain. As for the early laboring women who reported a pain level of ten, Peggy told them that they would be in worse pain later, so they needed to give a lower number now, but did doing so make sense? I often get the feeling that these pain scores are more motivated by the need to fill in blanks on a page than by the patient's welfare.

The funny thing about being on narcotics is that all people who take them for chronic pain come to act like addicts, there being no difference in the behavior of someone who is desperate to escape pain than in someone who is looking for a fix. Because I know that it's extremely unlikely that I'm going to receive a higher dose--my occasional hints about it having been ignored, so I don't dare ask outright because that might raise a red flag in my doctor's mind, the result being that I might be subjected to more frequent drug screens and pill counts. So far, I've rarely had the former, and I've never had the latter. It's damn important to have the respect of my pain specialist, but this doesn't always mean telling the truth. He asked me this week what was the longest period I had gone without narcotics. Well, I'm supposed to have enough that I never run out, but the fact is that I went six days once. I would have had to be a moron to tell him that, so I just reminded him that I had received narcotics from many doctors for many years, and perhaps, I had gone a day between prescriptions. I hated to lie, but in the wonderful world of narcotics, no one--the patient or the doctor--is to be trusted, the patient because he wants his prescription, and everything he says can and will be used against him, and the doctor because part of his job is to identify which of his patients are addicted, and get them off narcotics. Am I addicted? Well, I have never once gone looking for illegal drugs, nor have I ever once snorted or injected my drugs. I like the effect, though, although I don't like taking a lot of narcotics on the same day. I do, of course, realize that addiction, though unlikely for me after all these years, could happen, and I know if it does that I will never speak to a doctor about it because if I did, for the rest of my life, I would receive little if any help even if I were in howling pain. I figure that people who go to these pain clinics must be really naive or really desperate because once something like that gets in your medical records, your world is going to change in a way that you have no control over. That's why Frank warned me about changing over to businorphine. No matter how innocent one is, it pays to not look guilty.

Snowbrush said...

"I take a teensy bit of Nyquil and sleep 12 hours and feel better."

I'm glad you have Nyquil then, this being one of those times when extreme sensitivity to a drug works in your favor. I take a 10 mg Ambien at bedtime (they come in 5s and 10s), and another half of a 10 during the night when the pain is sufficiently bad that I can't sleep through it. This is more of the drug than insurance will pay for, so I have to buy it myself. Likewise, I can buy oxycodone cheaper myself than I can through insurance. Insurance is like that. If you're on Medicare, it's best to have it, but it's forever looking for a way to cheat you. Peggy and I were in Albany (at Mennonite Village) for a couple of hours yesterday, and I thought of you, but I didn't feel right about calling you--with the possibility of getting together--at the last minute. As it turned out, I spent the time talking to an 87 year old woman about her life as a hunter and fisherman. She still fishes for steelhead and still shoots rabbits with a .20 gauge. She taught public school in Savannah during the Civil Rights era, so she and I both had stories to tell about black/white relationships in the South.

kylie said...

I rail against my physical limitations but I am rarely in pain, which I am very grateful for.
I currently have a painful corn which makes me grumpy and not very willing to stand or walk. If I had a scalpel I'd be tempted to self treat it

kylie said...

I made your pain all about me. Sorry for doing that and I'm sorry you're struggling. I hate that there are no answers for you

Tom at Sightings said...

Sorry to hear about all this, and I just hope you find the right mixture that brings some relief. I use some CBD ointment on my knee and ankle, which seems to help a little, and I've had two cortisone injections. Everyone says they are terrible, but they worked for me. And that's the bottom line -- whatever works for you. Best of luck!

Joyful said...

Very sorry about all the pain you are having. It doesn't seem like there are any easy answers to dealing with it but I hope you will find an option for coping with it that won't leave you from heaven to hell in short time.