United States of Meth

Last week, I tested positive for methamphetamine.

I was on the red line train on my way to work, looking through my emails to pass time. There was a note from my health care system that a test result had been added to my patient profile. I clicked over and was horrified to discover that my urine had tested positive for meth. I burst into tears and called the office of the ordering physician in sheer panic.

Fear raises my blood pressure and elevated blood pressure decreases my hearing so I walked through Cambridge for a few blocks trying to will myself to hear the admin on the other end. I did several really stupid and unhelpful things to try and improve my hearing (including switching my phone to the ear I haven’t heard out of in six years and then covering that same ear) before finding a doorway to duck into down a quiet side street.

I think blubbering is too strong of a word to describe me here but I don’t know what word means one step down from blubbering so I’m going to call it “light blubbering.” I was light blubbering while telling the admin that I saw the positive test on my profile and that I wanted to know how to get it straightened out. She asked if I wanted to leave a message for my doctor.

I did, but wasn’t really sure how to phrase this. Finally I said (while light blubbering), “What should I say?”

The admin seemed equally perplexed and finally said, “I don’t know… maybe ‘I don’t use meth’?”

So that’s the message I left.

In July of 2013, I went to the ER with severe obstructive bowel pain. The kind of pain that feels like I am being repeatedly kicked in the stomach while at the same time my GI tract is being twisted.  It was two months after I had had my ostomy placed. My incisions weren’t even completely healed. I was having a bad reaction to pain and called the services for my surgeon and mast cell specialist on the way over. I arrived at the emergency department of the hospital where I had just had surgery and where I was seen several times a month. All of my records were there.

There were notes that if I presented in the emergency room degranulating/having anaphylaxis, to administer IV Benadryl, IV Pepcid and IV Solu-Medrol, and if I was in pain, to administer hydromorphone, one of the drugs of choice for mast cell patients with serious pain. I was puking from the reaction to the pain, tachycardic and flushing in waves a deep red like some sort of underwater creature that changes colors to tell other animals what it is feeling. Like a delicate jellyfish that communicates its intentions while vomiting and screaming every time I threw up because the tensing pulled on my incisions.

I guess my jellyfish routine sucked because in a very short period of time, I was embarrassed by several medical professionals in quick succession as a direct result of explaining that fentanyl and hydromorphone are the drugs of choice for mast cell patients. When they were collectively done treating me like garbage, the nurse ripped the IV out of my arm and I left without pain management. If you ever want to see a provider determine that you are worthless, lying, drug seeking scum, just tell anyone in an emergency department that you can only take fentanyl or hydromorphone for opiates. This is so true that there are memes about it.

Last month, the admin at one of my doctor’s offices told me that a new state law requires that certain patients provide urine samples to be tested for drugs of abuse. That’s fine. No problem. I have done this voluntarily in the past and I have nothing to hide. I went to the office, peed, and turned in my little cup to the nurse. I was not at all concerned that I would test positive for drugs of abuse because I don’t take drugs that aren’t prescribed to me. Then I tested positive for meth and just about had a heart attack on the red line train.

I think most people know that there is an ever worsening addiction epidemic in these united states. When I worked in pharmacy, I interfaced regularly with people struggling with addiction. People would come in with prescriptions from stolen prescription pads, or call in their own prescriptions pretending to be their doctor, or add a zero to the end of the quantity on a real prescription. I worked in a 24 hour pharmacy the week my state started imposing limits on the amount of pseudoephedrine that could be bought by a person to mitigate the ballooning meth problem. I was present when robbery for oxycontin became a looming threat in all pharmacies. I went to a high school that has had a huge number of former students die from overdose or complications of drug abuse. I am very aware that there are people who seek drugs for illicit use. (Disclaimer: I am not disparaging people with addiction. Some of the people closest to my heart are in recovery.)

Working in pharmacy, I also saw a lot of people who were in a tremendous amount of pain and who suffered because of others who abused drugs, especially prescription drugs. A few years later, I would also learn how embarrassing and difficult it is to be a chronic pain patient. The nurse who ripped out my IV and threw me out of the emergency department was a symptom of this larger system that sees everyone who needs pain management as an addict or as too lazy to work other options. Every single time I have to admit that I am in pain (even if I don’t need medication for it), I am forced to assess how likely it is that they think I’m spinning a larger tale to end with a prescription request.

The legislation that requires urine tests from pain patients reinforces the idea that if you have chronic pain and you don’t have cancer that you aren’t trying hard enough to find other ways to manage it or that you are selling/abusing/doing something illegal with your meds. I have spent years getting to a point where I can function at a moderate level much of the time. I exercise almost every day, either walking a few miles, swimming, or doing 60-90 minutes of advanced yoga at home. I have used massage, meditation/visualization, acupuncture, reflexology, and supplements like turmeric, magnesium and vitamin D to bring my pain level down. I have tried diets (some of which helped, most of which didn’t). I have tried showering in cold water to decrease inflammation. I take lots of meds to reduce inflammation and pain associated with my disease. I have been in pain a long time. I have tried pretty much everything. It’s not always possible to manage pain without use of pain medication.

While investigating false positive urine tests, I came across a lot of stories. There has been a story circulating on Facebook for a while about a woman who tested positive for meth during her labor and delivery. This ushered in a nightmare situation where a woman who didn’t use illicit drugs was separated from her baby while CPS determined whether or not she could bring the baby home.

I also found some other stories. A few were about newly implemented guidelines for when pharmacy personnel should suspect drug abuse. These guidelines include such things as going to a new pharmacy (though pharmacies will not tell you over the phone if they have controlled substances on hand); changing pharmacies (because no one ever moves); and paying cash (because insurance never rejects valid claims). There were some more ridiculous rules of thumb for how to identify a drug seeker. I fit at least half of them.

I spent most of the day after seeing this positive test result combing through literature on medications that can cause false positive results for drugs of abuse. Ranitidine can cause a false positive for methamphetamine. Even knowing this, I was still terrified. Even though I know I don’t use meth, I was still terrified. Even though I felt sure this would get straightened out, I could not stop worrying about it.

I called the office again the following morning because I had not heard back yet. The admin asked if I wanted another doctor to call me so I wouldn’t have to wait as long. “No! No,” I said, the second ‘no’ in a more forced-relaxed tone of voice. You know how you know something sounds bad but you just need to slip it in anyway and you can’t scare anyone because if you do (insert catastrophe)? This was one of those times. Is my voice the appropriate amount of nonchalant? Is this the voice of a meth user? “I have a really complicated medical history so it’s easier if I just talk to providers who know me,” I finally said, the words wavering a little more than I wanted. “I’ll just wait.”

The office NP (who is lovely and knows me) called later that day. She told me that no one called me because they knew it was a false positive. I exhaled two days’ worth of anxiety as she chatted cheerily. She hung up and everything was fine and I needed a nap to recover.

I have actual nightmares about medications and treatments that help keep me stable being taken away because my doctor retires or moves away or just doesn’t want to give it to me anymore. This terror is reality for most rare disease patients and probably plenty of patients who don’t have rare diseases. All of us, even those with solid care teams, are at the mercy of these providers and their personalities and these systems that see us as numbers and statistics that can’t really be in pain for so long.

I would like to say that I think things are improving or will improve for people like me but the truth is that I doubt that will ever be the case. Not every person who needs pain management is drug seeking but you would never know that in these united states.

Deconditioning, orthostatic intolerance, exercise and chronic illness: Part 1

Deconditioning (also called cardiovascular deconditioning) is the acclimation of the body to a less strenuous environment and the decreased ability to function properly under normal conditions. This basically means that when you have less physical stress on the body for a certain period of time, like seen in bed rest, the body adapts to that level of functioning, so when you want to engage again in normal physical activities, it is difficult for your body. Deconditioning makes multiple systems of your body less functional.

Bed rest is the typical situation associated with deconditioning. Patients on bed rest lose muscle mass and strength rapidly.  1-3% of muscle strength is lost per day, with 10-20% decrease in a week’s time. If completely immobilized for 3-5 weeks, a patient can lose up to 50% of their strength. Loss of muscle mass is also a problem. Upper legs can lose 3% mass within a week of bed rest. The lower back and weight bearing muscles in the legs are most affected by loss of mass.

Within 24 hours of bed rest, your cardiovascular system is changing. In this time, your blood volume decreases 5%. In less than a week, 10% is lost; in two weeks, 20%. Resting heart rate also increases 4-15 bpm within the first month of bed rest. Laying down for so long means that blood that is normally in the lower part of your body is moved to the trunk. This causes excretion of water and salt, resulting in less plasma and blood volume.

In healthy controls, when you change position, your body rapidly moves fluid from one part of the body to others. This phenomenon is called fluid shifting. Normally, when moving from a laying position to standing, 500-700 ml of blood are moved from the trunk to the legs. This movement of fluid is called “functional hemorrhage”. Special nerve clusters called baroreceptors (which measure pressure in the blood vessels) tell the nervous system that there is less blood in the chest.   Your body then increases the heart rate, the force with which your heart beats, tightens up vessels so that they are less “leaky” and tells your body not to make urine temporarily. All of these functions allow your body to keep a normal blood pressure and adequate blood supply despite this large movement of fluid.

In healthy controls, when you lay down after standing, the reverse happens. 500-700 ml of fluid is rapidly transferred from the lower body to the trunk. This is called a “central shift”. This increase in fluid in the chest results in the veins returning more blood to the heart, increasing blood pressure. When the baroreceptors feel more pressure than usual from this added fluid, the heart rate and force with which the heart beats decrease, the vessels are relaxed so that fluids can move out of them more freely and your body begins to make urine again.

When you are deconditioned, your body does not make these changes correctly when you change position. The hallmark of deconditioning is reduced orthostatic tolerance. This means that when you change position, your body does not compensate correctly to maintain necessary blood pressure and adequate blood supply to the brain. Deconditioned patients often do not have sufficient blood volume to maintain blood pressure when standing. When they stand, their heart pumps out less blood than normal, so the heart starts beating faster to compensate. When it beats too fast, it is called tachycardia.

In addition to inability to maintain blood pressure correctly when changing positions, deconditioned patients also exhibit decreased blood volume pumped out by the heart, atrophy of heart muscle and decreased maximum oxygen consumption. These patients often have other forms of vascular dysfunction, diminished neurologic reflexes and reduced ability to exercise. A number of other systems are affected by deconditioning.

Though prolonged bed rest is the model with which deconditioning is most often associated, there is significant evidence that chronically ill patients may often be deconditioned, including those with chronic lower back pain, chronic fatigue syndrome, and rheumatoid arthritis.

References:

Munsterman et al. Are persons with rheumatoid arthritis deconditioned? A review of physical activity and aerobic capacity. BMC Musculoskeletal Disorders 2012, 13:202

Eric J. Bousema, Jeanine A. Verbunt, Henk A.M. Seelen, Johan W.S. Vlaeyen, J. Andre Knottnerus. Disuse and physical deconditioning in the first year after the onset of back pain. Pain 130 (2007) 279–286.

De Lorenzo, H. Xiao, M. Mukherjee, J. Harcup, S. Suleiman, Z. Kadziola and V.V. Kakkar. Chronic fatigue syndrome: physical and cardiovascular deconditioning. Q J Med 1998; 91:475–481.

Hasser, E. M. And Moffitt, J. A. (2001), Regulation of Sympathetic Nervous System Function after Cardiovascular Deconditioning. Annals of the New York Academy of Sciences, 940: 454–468.