I've recently been having a particularly nasty RA flare-up in both ankles (especially the right one) and my right foot, which is maddening and depressing and all of the other emotions that go along with a major flare-up. I'm taking prednisone again, which doesn't make me happy--I had been completely off of it for four months. But what does make me happy is that it seems to be slowly helping, so that's a relief. Two weeks ago I had to leave work early because the pain and throbbing in my foot was so bad; it was the first time I've ever left work early because of my RA. When I got a new prescription for prednisone filled, I also got a prescription for Vicodin--but only a small about with no refills. In general, I don't usually take it that often or regularly unless I'm traveling and/or doing a lot of walking or having to be on my feet for extended periods of time. With this latest flare-up, I put in the painkiller request with my doctor's nurse and I got it filled, no problem. Yes! Relief! However, my last Vicodin supply isn't proving to be enough with this stubborn foot and ankle.
So what do I do? I'm still taking the prednisone and I haven't been able to start tapering down yet because my ankle and foot are still inflamed more than "normal." I've also been getting terrible headaches again and jaw pain, which are probably stress-related (from dealing with work stress and this flare-up?). Basically, I'm in a lot of pain and I'm out of painkillers. And, I'm afraid to call my doctor and ask for more because I don't want to get reprimanded or look like I'm starting to have a painkiller addiction. So far my rheumatologist has been really great about helping me out with medications and refills so I have no reason to be anxious or hesitant to make the phone call, right? But I am. There is a strong stigma attached to pain medication regarding addiction and I'm sure I'm not the only patient who experiences or fears it in some way.
Referred to by my rheumatologist, I recently started going to a pain management clinic for the first time, through Fairview Health Services. It's a pain management "team" that I'm involved with now; I see a doctor, a psychologist and a physical therapist all at the same clinic. So far I've only had one appointment with the doctor, which was an evaluation consultation and seemed to go pretty well. We talked a lot about my own health problems and how to best manage chronic pain, especially through stress reduction, exercise, and meditation instead of pain medication. I agreed with him about focusing on those things instead of relying solely on drugs. He did, however, prescribe a new muscle relaxer for my headaches and a topical gel for my ankles. So far neither of those seem to be doing much, unfortunately. But, I have now seen the psychologist there twice and the physical therapist twice, and I feel very positive and hopeful about those appointments and my future appointments with them. I fully believe that health and wellness is not just your physical problems, or one physical pain or issue, but that your whole body, mind, and soul are connected and need to be taken care of to ensure optimal health. So while Vicodin does provide a lot of relief for me during especially tough bouts of pain, I do want to be working on other things to help decrease my pain and make me feel better and healthier in general--exercise, good nutrition, good sleeping habits, stress-reduction.
During my first visit with the psychologist at the clinic, we talked about the stress I've been dealing with lately feeling misunderstood by family and friends (co-workers, bosses, and even one of my doctors) due to living with the "invisible illness" of RA. He gave me an article titled, "Surviving A Loved One's Chronic Pain: A Guide for Family and Friends of Pain Patients" by David Kannerstein, PhD and Sarah M. Whitman, MD. The article is full of a lot of good information to help people better understand the nature of chronic pain and the issues that both the patient and loved one face when dealing with pain. If you can find a copy of this online somehow, I recommend reading it and sharing it with others. One of the issues the article touches on is treatments for chronic pain and the risk of addiction from pain medications. A common misconception regarding pain treatment is that many people assume that if you're taking painkillers you're automatically going to get addicted to them. While it's certainly possible to get addicted, that's not usually the case.
Taken from the article, here are some useful definitions:
Addiction: Addiction is a disease with genetic, psychological, social, and environmental factors influencing its development and symptoms. It consists of behaviors such as poor control over drug use, compulsive use, continued use despite harm, and craving.
Physical Dependence: Physical dependence is when the body is used to a certain medication or drug, and withdrawal symptoms occur when the drug is stopped or decreased in dose.
Tolerance: Tolerance means that the body gets less effect from the drug, or needs a higher dosage to get the same effect.
According to Kannerstein and Whitman, addiction involves the abuse of a substance while physical dependence and tolerance do not. Sometimes patients using pain medication or who have used pain medication in the past just need more for a period of time to help manage their pain. To some, this may look like the behavior of an addict and it's sometimes called "pseudo-addiction." So how can you tell real addiction? Some signs that may point to addiction are if the patient repeatedly says he or she has lost prescriptions, he/she gets the same medication prescribed by different doctors and/or gets prescriptions filled at different pharmacies, or gets medication off the streets. But just because you need pain medication or more pain medication doesn't mean you're an addict or that you're going to become one.
A good friend of mine who also has RA has had the worst time trying to get her rheumatologist to prescribe her any narcotic painkillers, even though she is in serious pain on a daily basis. She has tried other pain medications in the past which haven't worked. I've listened to her frustrations about feeling helpless and angry and confused about what to do and I feel bad that her doctor doesn't seem to listen to what her pain needs are. Hopping around to different doctors until you can find one who will dish out the pills isn't exactly a great idea--and it's not easy to just find a new rheumatologist anyway. I know her personally and I've listened to her tell me about her pain for a long time and I know that she is not just some pill-seeking drug addict. She needs relief! Just like I need some relief right now. I don't really like the idea of taking narcotics and my hypochondriac-self worries enough about the dangers of addiction. But sometimes Tylenol and ibuprofen and even Tramadol don't cut it (I realize that Tramadol is also a narcotic, but isn't as strong as Vicodin or Percocet, etc.).
Right now my head and jaw are throbbing like crazy and I want to cut off my right ankle and foot until this prednisone starts to fully kick in (or until I'm forced to increase the dose). I'm also helping to photograph a wedding this weekend during which I'll be on my feet for eight hours. And the next night I'm photographing a concert, which means more hours on my feet. At the end of those nights I'm going to want to die if I don't have something to ease the pain. Should I feel this anxious about calling my doctor to ask for a Vicodin refill? I don't think so, but I do. I'm going to call anyway. I need to be able to function like a semi-normal person right now and I can't do that while having debilitating pain--hopefully my doctor will understand.
Do you expect to see a cure for RA?