I have a pain pump. That might not seem like a big deal to say, but like so much when you are sick, it became something I didn’t talk about.
I could see & feel the shock from other people at how “extreme” it seemed to them. I almost felt embarrassed I needed it, as if no one with MECFS (or the list of other illnesses I now know I have) could possibly be in that much pain.
When I met up with an old friend years ago & he started making fun of me for wearing a fanny pack, I said nothing. It was bad enough I was sick, I hated that having to wear the pump in a bag around my waist advertised it in a way I couldn’t control. I barely heard from or saw old friends anymore, it seemed better to let him think I wanted to rock a fanny pack as a fashion statement, than to say it was a morphine pump. As patients we hide our real lives to make it easier on others… and ourselves.
Pain was always one of my worst symptoms. I was just a kid when I got sick so I tried all the natural approaches first, then moved to Advil, prescription NSAIDS & eventually basic pain medicine. It didn’t work & the pain continued to get worse & I continued to get sicker. When I finally traveled to see my MECFS Dr I entered his office in a wheelchair, weighing a scary 96 pounds, bedridden but unable to sleep or keep food down the pain was so bad. He admitted me to the hospital that day.
For 2 weeks he tried to figure out something to help me. Like so many reactive patients, I reacted to everything he gave me. I had blackouts, lost control of my arms & legs, had severe seizures, the list went on & on. This led to trying Morphine. My Dr had a theory that Morphine would actually help me, not just my pain but the illness itself.
Note: “Further studies on the effects of morphine on the immune system have shown that morphine influences the production of neutrophils and other cytokines. Since cytokines are produced as part of the immediate immunological response (inflammation), it has been suggested that they may also influence pain. In this way, cytokines may be a logical target for analgesic development”.
The morphine didn’t just help my pain (yes, for the first time in many years I didn’t want to cry all day long & I could finally get real sleep) it also helped me start to get stronger, to gain weight, to do better & stop being at death’s door (something my Dr actually said).
Since then I have been on Morphine via a CADD Pump. A bag of morphine attaches to the pump, the tubing goes to a small needle I put in the muscle in the top of my arm. Every few weeks you get a new bag, every few days you change the needle. I put my pump in the smallest black fanny pack it would fit in. But being tied to something that’s a constant reminder of your illness every second of every day, isn’t easy to hide from yourself.
Pain medication has become a huge issue. Many patients that genuinely need it, can’t get it as more and more general Doctors aren’t willing to prescribe even the most basic options. Recently my GP sent me to a pain specialist. I was lucky to find a great one. He didn’t question my needing the drug for 1 minute. He simply questioned how I was getting it. He said a CADD pump shouldn’t be used on a long term basis as the risk of infection is too high. He insisted I switch immediately to an Intrathecal Pump.
Delivering the medicine IM (inter muscular) with the CADD Pump, you have to pump a lot of the drug throughout the body in order to get a very small amount of it to your brain to work on the pain receptors. An intrathecal pump puts a very tiny amount of medication right into the spine to the brain, to control the pain without flooding your kidneys & the rest of your body with medication. Not only can it relieve more pain, it’s much safer.
Intrathecal Pump Procedure:
Step 1: No more modeling
Getting a pump isn’t a one stop effort. My Drs office required I get the “all clear” from a psychologist first (if you are thin, the pump might be able to be seen through your abdomen to some degree). I thought they needed to make sure I was okay giving up my bikini modeling career but it was just to make sure you understand the procedure & the way it works.
Step 2: Test drive
They need to make sure it will work before they go ahead & actually implant it into your body & all. So the Dr makes a small incision & puts a catheter into your spine, leaving the tubing & the pump on the outside (I see a second fanny pack in my future… don’t be jealous). You go to the office a few times after that to get the dose adjusted & make sure it works for you.
Step 3: Just do it!
Having the pump put in is surgery. Most people go to a clinic & have a surgeon do it. But I am difficult as always & they fear my reactions to the anesthesia. So I will be doing it as an outpatient at a hospital to be safe. A needle inserts a catheter into the intrathecal space of the spine. Then an incision is made in the lower abdomen or lower back to insert the pump (the pump is about 4-5 inches wide, another reason they need to make sure you understand what the scar will be like). The thin tubing from the catheter is then threaded from the spine down inside your body to the pump.
Step 4: Living
The pump is set up at a constant rate. But every patient with pain knows every day is not the same (I didn’t mean for that to rhyme!) You are given a magic little wand you put over the pump & when you click it, it gives you a very specific extra dose of medicine. Depending on the programmed rate of your pump, you go to your Doctor’s office every 2-4 months to get it refilled. The small circle in the middle of the pump is a self healing reservoir. The Dr takes a needle & inserts it through your skin into the port to refill it.
Now that the pump is being implanted & I can hide it, I am going public & that irony isn’t lost on me.
One of the few people I told about the upcoming surgery asked if I had considered talking about it? Horrified I said no! And then I wondered… why did I say no? What did I have to be ashamed of? Shouldn’t I be proud I found something that helped me survive? And shouldn’t I share something that’s rarely talked about that might help other patients? Like every option, it has risks & it’s certainly not for everyone.
For me, a pain pump saved my life & I’m not hiding that anymore.