Living in Pain

Many patients with PIDD live with chronic pain issues. Pain is often thought of as the fifth vital sign; however, unlike blood pressure, pulse, respiratory rate, and temperature, it is a little more difficult to objectively assess a patient for pain. This can cause pain to go untreated. Untreated or poorly managed pain can lead to other medical complications and problems. Doctors are not sure as to why patients with PIDD suffer from chronic pain issues, and the type of pain PIDD patients suffer from varies widely from patient to patient. Some research suggests that the immune system plays an important role in the development of chronic pain. This may explain why many PIDD patients struggle so much with chronic pain issues.

I have struggled with chronic pain issues for over two years. Mainly it has been my hips and joints that are the problem, though recently it has been much more than that. I have seen a rheumatologist and been told I do not have RA (rheumatoid arthritis). I have had CT scans and MRI's of my hips, neither of which show structural abnormalities. I have done physical therapy, which did not help at all. Basically, once again, I am a mystery. I had been prescribed pain medication by my primary care physician until recently when I had to switch doctors because I moved. My current PCP has told me that she is not comfortable prescribing pain medication.

Now, I have never been very fond of pain medication. I would much rather not take it if at all possible, but when the pain becomes so debilitating that you are nauseous, throwing up, curled in a ball in the middle of the floor, and praying that it just ends soon, there really are no other options. You have to live and be able to function. It is at those times that pain medication is necessary. I do not take pain medication and even though it is a narcotic, I have been at the same dose for those two years. Since my PCP will not prescribe pain medication, when the pain has gotten too bad, I have had to go to the ER. The problem with that is many ER physicians are reluctant to prescribe pain medication due to the bad rap they have gotten from addicts. On several occasions I have been told that I am just drug-seeking. Well my response to that is that the ER physician only ever sees me in pain because who goes to the ER if they are healthy? Second, if I was an addict would I not need more and more of the medication to achieve the same result? If I was an addict would I be able to have 15 pills last me a month - two months, when they are prescribed to be taken every 4 - 6 hours? My pain has never been managed, but rather been treated on a crisis basis. I have been so fearful of running out of pain medication when I desperately need it, that I don't take it when I should. Pain medication should be taken before the pain gets bad to prevent it from doing so. You should not wait until you are a 10 out of 10 on the pain scale to take pain medication. Yet, this is what I do out of necessity.

Finally, in the past year, I have tried to seek out pain management doctors in hopes that they would manage my pain. The first doctor I went to see was supposedly a pain management doctor. When I called and talked to his office, I was assured that he treated pain, not just spinal disorders, and that he did do medication management. Well once I got there, it was a different story. I was told that he did not do medication management. He never prescribed pain medication. In fact, the only thing he did do was spinal surgery. Um.... no thanks.

So, on to the next pain specialist. First of all, I must say that there aren't really genuine pain specialists in my area. There are doctors that treat spine disorders and doctors that do spinal surgery, but no one that deals with pain management. So my next step was to find a pain clinic. I set up an appointment down towards the other end of the state with a pain clinic. Again, I had talked to someone in the office and was assured the do pain and medication management. I had been referred by my PCP who had other patients who had been to this pain clinic with positive results. Well, guess I wasn't so lucky. I met with the doctor, whom didn't even examine me. I sat on one chair, he in another, while he asked why I was there. Well, because I am in pain and need it managed. Hello? Why else did he think I went to a pain management clinic? It was not because I have a sore throat. I stated the obvious and told him my story. He said he had seen the MRI and CT scan reports and neither had revealed any structural abnormalities. Again, something I already knew. I told him the source of my pain was likely as a result of my immune disorder. I, then, went on to tell him about PIDD. I asked him if he has heard about primary immune disorders. To which he responded, "Yes." Okay, so now I feel hopeful, but he still has that puzzled look on his face as if to say he is not sure how this is relevant. So then I ask him if he had any PIDD patients. "No." Well, maybe he just didn't have any current patients. One can have hope, right? So then I ask if he's ever treated any patients with PIDD. "Well, no." Okay this is not a good sign. My good feeling is quickly fading. So then I ask if he knows about primary immune deficiencies and their complications. "Yes." Now I'm confused. He has heard of them, he supposedly knows about them, he does not have any patients, nor has he ever treated a patient with PIDD, and he has that completely mystified look as if to say, "why are you wasting my time with all of this." So then I ask, how he knows about primary immune disorders. To which he says, "I read about it in a case study in some textbook back in medical school." Um... not exactly the same, and I would not classify as "knowing" about them or being an expert in them. I attempted to explain PIDD to him, but with no amount of success.

In the end, he refused to write a prescription for pain medication, nor even discuss pain management. I did not have a structural abnormality and thus, in his opinion, no logical cause for my pain. He went on to tell me that it was "beneath him" and a "waste of his resources" to prescribe pain medication. In his words, "any monkey can prescribe pain medication." He then suggested I get my PCP to write for it. Well, that is why I was there, because my PCP would not write for it because she was not comfortable doing so. He said that she should have no problem writing such a little amount (15 - 30 pills every month - 2 months). Yes, I agree, but that is not the case. He then suggested that if I couldn't get my PCP to write for it, I should seek a new PCP. Easier said than done. Would he like to call the 100+ PCPs on the list my insurance company has and find one that will prescribe pain medication. Should I ask that question of them before I get the appointment, or does he really expect me to go in for 100+ new patient visits to find one that will prescribe? And why again, can he not prescribe? Is this not his specialty?

So I left, in pain, and quite discouraged. Here I had hoped that this would be my answer, and yet I am still in the same place I was before. I go home and then decide to call a few of the other pain clinics in the state and even one out of state, but within traveling distance. Who minds traveling if you get good treatment. In total I talked to four other pain clinics. I had now seen four pain clinics in the past year, two of which were spine centers because I did not yet know the distinction between a legitimate pain center and a spine center that dealt with pain, and talked to an addition six clinics - a grand total of ten clinics/doctors. Out of the phone calls I made, I got similar responses from everyone. Yes, they deal with pain and medication management. No, they do not just treat spine disorders, but other types of pain. No, they do not prescribe pain medication. Okay, how can you say you treat pain, deal with medication management, but do not prescribe medication? Finally, I asked the obvious question, well if you don't prescribe medication, what do you do? I was told they all do interventional pain management. Now, what is interventional pain management? Spinal blocks, nerve stimulators, and surgery. All of which, to me, seem to have some sort of invasiveness. They certainly seem more invasive than prescribing a pill. You would rather stick a needle in my spine, or even cut into my spine and insert a machine, or do some other type of surgery, then prescribe me a little pill? Does this make any sense? Maybe they make money based on how many spines they operate on or stick needles in, therefore prescribing a medication is just not lucrative enough. Then, again, if my pain gets any worse, I might be inclined to let them stick things in my spine or operate on it. If they screw up, I won't be in pain anymore. I may not be able to walk or feel anything else either, but I certainly won't be in pain. Not really sure how any of this would help if I had cancer, and there are certainly many types of chronic pain that are not related to the spine. Wonder also how these spinal therapies would help widespread chronic pain, such as mine, except by doing just as I fear, cutting off the feeling in my entire body. I guess if you gave me a nerve block in my cervical spine, the rest of my body wouldn't hurt. Of course, I wouldn't feel anything and I probably wouldn't be able to breathe because it would block the nerves to my diaphragm and breathing, but I wouldn't be in pain....