About a decade into my battle with lupus and polymyositis, a rare neuromuscular disease that destroyed nearly 50% of the muscles in my legs, I found myself running out of options. By that point, I had essentially made my peace with the fact that nothing could return my legs to their original state, no matter how many renowned specialists I visited.
Yet the loss of function and the state of daily pain were two separate issues. If nothing else, I desperately wanted at least to minimize the latter.
Unfortunately I had tried a myriad of possible solutions, from various Western prescription painkillers to alternate therapies, and nothing much was helping. Sure, some days were better than others, but there was essentially never a single day that I wasn’t in some degree of pain. I did my best to maintain full-time employment, but there were a number of days where I simply hurt too much to think about going. Even on my supposed “good” days, making it through eight hours was something of a victory every time. I would leave work so exhausted from the effort of simply trying to be “normal” that I would almost collapse the minute I arrived home. My doctor had once remarked that he couldn’t believe I wasn’t using a wheelchair, and I really had no answer for him.
Clearly something had to be done. But what?
Around that time, the wife of one of my co-workers was having some major problems with one of her feet. She’d undergone surgery to correct the issue, only for it not to take. As she awaited another surgery, my co-worker told me, she was seeing a pain specialist.
Pain specialist? Up until that moment, I’d never heard of such a thing.
Weren’t all doctors supposed to be pain specialists? Nonetheless, I was intrigued. Perhaps this was someone who might really help me. At any rate, I certainly had nothing to lose, right?
So I made an appointment. A few days prior, I had received a packet of paperwork in the mail, the contents of which rather surprised me. Along with the usual basic background, the doctor’s office heavily stressed the fact that they would not be fooled by anyone simply drug-seeking. I then had to read through several pages of “rules” for being their patient and sign my name. While of course I could understand their perspective, I was also more than a bit defensive. There I was, seeking help in managing a legitimate illness beyond my control, and I felt as though I had to prove I wasn’t a criminal. Although fraudulent use of controlled substances is indeed something that occurs, it’s far more likely the person requesting them is in genuine need. In fact, given the stigma that many face in using prescription-strength painkillers these days, it’s also a safe bet that it took the patient some courage to admit he or she needed them and to finally come forward.
When the day of the appointment arrived, I was pleased to be ushered into a patient room almost immediately. I was less pleased to find myself waiting there for the doctor – in a chilly little enclosure upon a hard chair – for well over an hour. While having to wait past the scheduled appointment time to be seen is somewhat expected in 21st century healthcare, it seemed rather ironic in this case. There we patients were, seeking advanced pain-easing options after more common avenues had failed us, and we were immediately placed in a scenario that seemed likely to contribute to that pain.
Once the doctor finally entered the room, however, I found myself more reassured. Dr. Jones’ (not her real name) manner was both professional and caring as she scanned my health history and asked me further questions about what had brought me to her office.
Her approach was two-pronged. First, she probed for details about my diagnoses, what previous doctors had said, what testing had been done and what treatments attempted. Her goal was first to make certain that I had been diagnosed correctly. I hadn’t considered that until Dr. Jones brought it up, but it definitely made sense. Not having the correct name to my physical problems would certainly impede treatments, and thus alleviating pain. She suggested additional testing I hadn’t yet undergone, such as a sleep study to assess the quality of rest I was getting each night.
Next, Dr. Jones made suggestions about possible strategies. These included Western prescription painkillers, of course, but she also mentioned several alternatives, such as water or physical therapy. We then discussed the pros and cons, as I’d already tried a number of these things, and whether I might consider trying any of them again or perhaps something new.
Although I toyed with the idea of a second appointment, ultimately I decided not to return to Dr. Jones. For the most part, she hadn’t suggested anything I hadn’t already heard of or tried. That isn’t to say I was blaming her; it was merely than over the course of a decade, you tend to see and hear just about everything there is about your illness.
However, going to a pain specialist is an avenue that definitely might be beneficial to others. As everyone’s situation is different, of course, their needs and expectations also differ. If you are a person who’s long battled serious chronic pain, though, you should at least be aware this option exists and is open for you to pursue. It may be a cliché, but it’s definitely true…it never hurts to give something new a try. Who knows? This doctor may be the one to hold real answers in alleviating your pain and raising your quality of life.
Joanna Mechlinski is a former newspaper reporter who now works in education. She is a lifelong Connecticut resident, avid reader and animal lover who has battled several chronic illnesses since her early twenties.
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