Well, I finally made it to the pain clinic in hopes to resolve some of my pain issues. I mentioned to Linda what I had been getting in rehab in regards to pain control and how it had been helping. We discussed that though non-conventional, IV Benedryl had the greatest effect. Linda was open to the idea. I basically told her how frustrated I was to go from nearly absolute pain control back to complete out of control pain again. Had I not had the time in rehab and had not had my pain effectively managed, that would be one thing. Prior, I hadn't known pain management. The Fentanyl patch is an improvement over the oxycotin, however, the lowest my pain level has been since coming home has been a 7. In rehab, I was able to maintain a 4 or at most maybe a 6, if severe. I used 4mg po dilaudid ~ 2-3 time/day, and some days didn't need breakthrough medication at all. To me, it is unacceptable to have to live this way. She did not want to switch to 4mg tabs of dilauded citing that she wasn't comfortable with such a huge dose increase. Apparently dilaudid even po is much stronger than percacet. But she was willing to write for 2mg po dilaudid 4x/day. I know that this will probably not be sufficient, but it is a start and a move in the right direction. One of the things I have learned when dealing with the pain clinic is try to be conservative with changes, be willing to accept smaller changes than you suggested in hopes of working towards your desired outcome, make suggestions as if someone else (VVNA, doctor, other person of noted authority other than you) had the idea and thought it would be helpful, back it up with evidence as to why it may be helpful, appear gracious and understanding when agree to change even if it it's not exactly what you were hoping for, and be willing to compromise. Yes, the ideal would have been 4mg but in seeing what I had taken while in rehab, she was willing to switch from Percacet to Dilaudid, which is the important thing. One step at a time. Often this is frustrating. It shouldn't seem necessary to play such games. It shouldn't be necessary to take each step and not just go right to what is known to be effective, as I am the one that suffers in the meantime, but it is the way of it. On the plus side of things, she was open to IV Benedryl as a help for my pain and was willing to write for it, so long as she talked to Dr. Steingart because he basically maintains my port and she wanted to make sure that he would watch things - didn't want me to get an infection, or clot, or whatever and has no knowledge of ports. This seemed reasonable and understandable. So I left there full of hope.
Well my hope came crashing down a few hours later when she called and told me the Benedryl would not be possible. She had talked to Dr. Fejos, who her license is basically under, and he wouldn't let her write for it because it is not "traditional" treatment for pain management. Well honestly, it doesn't get any more frustrating than this. Here is a non-narcotic treatment that seems to help manage my pain, which in my book is a good thing for two reasons - it helps manage my pain, and it is non-narcotic. I hate taking narcotics and being dependent on medication. Then, despite having a valid prescription wouldn't get it because of a possible side effect in the possible future. Then, the pain management specialist was willing to write for it, but was vetoed by her boss because it's not "traditional" treatment. It's all one roller coaster ride - up, down; hope, despair. Of course, we have to remember that I nearly left the pain clinic because of Dr. Fejos.
Interesting to think that I first went there just about 1 year ago. I initially went there because the pain in my bones and joints had gotten extremely sever and none of my doctors would write for pain medication. I was living from ER script to ER script. I had seen a couple of "pain specialists" who were not truly pain specialists. Most were spine specialists. One guy had me in spine surgery within less than 5 minutes of walking in the office. Shook my hand and was like, "so when are we scheduling your surgery?" My surgery? What? Um.... no thanks. No one is touching my spine, thank you. Interestingly soon after that I ended up at Bristol spine and Pain Center. The problem with finding a pain clinic is that most centers aren't truly pain management clinics. They deal with spine problems, or back injuries or accidents. They don't do true pain management and not from a chronic condition such as a primary immune disorder. If you can find a cancer center, sometimes that is best, but some only take cancer patients. Others don't do medication management. How is this possible, you ask. They one do
"interventional" pain. This means spinal shots, never blocks, physical therapy, even biofeedback - no medication. It was so frustrating. The other problem they don't deal with generalized body pain, and my pain affects just about every area of my body. Once you do find a pain clinic, you can't just make an appointment. You have to get your doctor to call in a referral, ect. When you're in massive amounts of pain, all of this is difficult.
Finally, I got into see Dr. Fejos. The first thing that was important to me was that he did medicaiton management - Yes. Okay, good. Then I asked if he had heard about primary immune deficiencies - yes. Another gold star. Had he had any experience with primary immune deficiencies - yes. Maybe two gold stars for this one. Some doctors had heard about them, but few had any experience. Did he have any current patients with PIDD - No. Okay, but there's nothing against that. We are a rare breed. How many patient had he treated in the past. Well none. Wait a minute, I thought you said you had experience. Well, what experience do you have? Well, I read a case study in a textbook back in medial school. The ultimate let down. That's not experience! I went on to talk about my pain. How it was in nearly all my bones and joints and due to my immune disorder. Explained that I'd had to stop doing jazzercise and been in the ER multiple times, and that my pcp was uncomfortable writing for pain medication. He asked what was helpful, and told him 4mg po dilaudid. He then said that it was beneath him to write such a low dose. That had I needed 15mg, that was worth pain management, but 4mg certainly not. He said, that any monkey could write a script and that could be the job of any med student, not someone of his caliber. When I once again explained that my pcp would not write, he said that he would talk to her, but that he wouldn't write such a low dose. Ah .... again, back to no option. I was so frustrated, and in my opinion, case closed. Wasn't going back there again.
Again was living off ER pain meds. I would ration them and when I ran out i would have to go back to get another script. It was not a good system, but I had no other choice. I looked for other specialist but couldn't find any. Finally, I went back to Bristol to try again. This time, I got an appointment with Tammy, the PA. She was more helpful. She ordered an MRI of my hips and spine; my pain originated in my hips. Then, gave me low-dose percacet. The MRI was a disaster. I didn't know how claustrophobic I was until I got in and freaked out; ended up crying hysterically. The MRI didn't show anything earth shattering - some arthritis in my spine, but not much more than that. The arthritis had been expected, and wasn't severe enough to cause the degree of pain I was experiencing. I didn't expect to have ligaments, fractures, or anything like that. I hadn't had a back injury or accident. The problem was deep within my bones and joints. The problem was the chronic, debilitating pain all over. In December, the VNA got involved. They were concerned with the extreme pain level and I was put on oxycotin - a long-acting pain med in addition to the short-term med. Then, I was also switched to seeing Linda, the nurse practitioner. Seeing Linda changed everything. Of course, it also helped that I was able to show her the article that was written about me and lung problems. After reading the article, she seemed to "get it."
It's just so frustrating because in rehab my pain was managed and now it's not. It seems so easy but because it's not "traditional" treatment, they won't order it. It could be standing on my head, and so long as it worked. I'd do it. I just don't want to be in agony all of the time.
Unless a person has lived in pain, they cannot understand the devastating effects it can have. One of my friends termed it, "pain brain." All you can think about is the pain. Sometimes, the pain takes over my body. It's as if I can feel the nerves firing in my body, down my spine. It is unbelievable. Every part of me hurts. It over takes all my thoughts and I think that surely, if this continues, I will go insane. It's unbearable. My thoughts become muddled so that the only thought that continues to exist is the extreme pain. I forget things because the pain takes over everything. All I want is to curl up in a ball and sleep, but I cannot sleep when my body is in such deep pain. I do not want to move because doing so just makes it worse. I fear to even breathe. It takes over my life. I cannot stretch or do pt. It effects your emotions. You get depressed. Everything becomes tainted by it.
When I saw Linda, it was as if she expected the trach to have fixed everything. Before I had severe lung pain. As my lungs have gotten worse and begun to fail, I suffered with severe lung pain. She expected this to be gone. But though the trach has helped my breathing, it has not fixed things. It is not a cure. It will not stop the deterioration or progression in my lungs; however, it will make it easier to breathe. It will give me more time. But my lungs are still failing. They still hurt. The area around my trach hurts, and though she expects that things are all better, this isn't the case. She thought that since being home, my pain would be less than it was in rehab; however, this is not true. At first I didn't understand. I, too, expected it to be less since I wasn't getting as intensive therapy. But it is not, it is more. When I thought abut this, it does make sense. Though I am not doing as much therapy, I am in fact doing more. In rehab, you do therapy, but when you're not in therapy, you are either sitting or laying in bed. Here, I do things all the time. I am in the wheelchair most of the time, but I am constantly doing things. I wheel myself from the bedroom to the kitchen, get my drinks, prepare my food, put dishes away, ect. I am constantly doing things and pushing myself from one place to another. By doing more, this is going to cause more pain. Granted this doesn't change the fact that only a certain amount of medicaiton is prescribed. It is frustrating how others don't understand that. the trach was not a cure. Things are not all better. I just wish what anyone else wishes, to be free of pain.
Showing posts with label Pain Medication. Show all posts
Showing posts with label Pain Medication. Show all posts
Friday, September 9, 2011
Saturday, September 3, 2011
What a Pain
Since I've been home, I've been in so much pain. It's been absolutely horrendous. I am in agony all the time. My bones and joints hurt. My lungs hurt. My trach hurts. I just can't win. I am taking pain meds non stop. I take them every 4 hours, as frequently as possible. Often it seems as if I am looking at the clock, waiting for it to be time for me to be able to take pain medication. The lowest my pain has been since coming home is a 7.
Before going to rehab, this was somewhat acceptable. Since I never seemed to get complete relief from the medication, any relief was okay and acceptable. I just figured that for whatever reason, I was a person whose pain couldn't be adequately managed. I had pretty much given up on pain management. As long as my pain wasn't a 10, I was okay. It was when it got above this, that I couldn't deal with it. All of this changed when I went into rehab. In rehab I had adequate pain management. I was getting IV Benadryl around the clock. I was also getting oral Dilaudid as breakthrough medication. Though my typical pain management schedule was for Percocet as breakthrough medication, the Benadryl and Dilaudid combination was more effective. With the Benedryl, I needed less medication to effectively manage my pain. It helped the narcotic pain medication work more effectively. With it, I was able to need less narcotic pain medication. I was only needing 2-3 doses of the Dilaudid per day. Some days I didn't need any. My pain was well managed. This was a miracle to me. I had never had adequate pain management. I had pretty much given up hope that it would exist.
When I was discharged from rehab, they wrote a prescription for me to get the IV Benedryl. Before going to rehab, I had been taking oral Benedryl several times a day to control the itching attacks that I get. On an average day, I was taking 6+ doses of breakthrough narcotics and at least 5-6 doses of oral Benadryl. In the hospital, I was only needing ~2 doses of breakthrough narcotics and 2-3 doses of IV Benadryl. Once home, however, Kathy, my infusion nurse, didn't want me to use the IV Benadryl. She said she was concerned because it carried the risk of possibly developing a dyskenesia, or abnormal muscle movement. She said with the challenges I was already experiencing, this was the last thing I needed. Now while I love Kathy and she is an excellent nurse, she is also very opinionated. When she has an opinion about something, she gets stuck on it. Well this was one of those things and she contacted Dr. Giannini about the fact that she strongly felt that the IV Benadryl was not a good idea. I understand her concern, and if I was a typical patient, it would be valid. Of course, if I was a typical patient we wouldn't be discussing it because traditional methods would be successful, but I am not a typical patient. In my opinion, 2-3 doses of IV Benadryl is much better than 6+ doses of oral. Using IV Benadryl, which seems to make the pain medication more effective and thus make it so I require less narcotic pain medicaiton and help control my allergic reactions, seems better than needing 6+ doses of narcotic pain medicaiton. I also don't understand why IV would have this potential side effect if oral did not. Wouldn't you develop it much faster with the 6+ doses/day than 1-2 doses/day? Isn't it better to use non-narcotic medication vs. narcotic pain medication? I also have a hard time understanding why we should veto using IV Benadryl and its benefits for a potential side effect that could occur in the future. This is not even something that will happen, but something that "may" occur as a "potential" side effect. Let's face facts, I'm not going to live forever. My life expectancy just with the CVID alone is 20 years after diagnosis. I have been diagnosed for 5 years. I will be lucky if I get another 5 years out of this situation. During this time I want to be as comfortable as possible. I have a hard time justifying not using a treatment based on potential side effects in the future. I am more concerned with right here, right now. I want to be comfortable. I don't want to be in agony constantly. Being in this much pain is not fair to me. I can't do the things I should and need to do. I can't do as much physical therapy as I should or need to because I'm in so much pain. Pain makes physical therapy and exercising near impossible. The pain completely takes over my body and my life. It's all I can think about. I can't do the things I enjoy because all I can think about is the pain. It is constant, never letting up or giving me a break. Sometimes the pain is so severe that I can't endure it, and worry that I will go crazy from it. No one should have to live this way. It's not fair. It's not a quality of life. I hurt all over. It's depressing. It dampens your mood, and it makes it hard to concentrate on things. Thoughts of pain consume every aspect of my life. The most frustrating thing is that it doesn't have to be this way. The pain can be managed. I have proof of this because it was well managed the entire time that I was in rehab. There is no reason for me to have to suffer. It wasn't difficult to treat. IV Benedryl is a benign medication. It's not difficult to obtain, nor is it a highly regulated medication like many narcotics. It is a simple antihistamine. In addition, it is easy to administer, something I'm capable of doing without a problem. There is no reason for me to be in so much pain when the solution seems so easy. Of course, since Kathy didn't support it, she called Dr. Giannini, my pcp. My pcp listened to her because she is a nurse and obviously knows what she is talking about. When the VNA later called Dr. Giannini to try to get it set up for me to administer the IV Benadryl at home, Dr. Giannini refused to accept the script in support of it. Therefore, I am not able to get it as a medication. So, though the medication helps manage my pain effectively, and with it, I need less narcotic medicaiton and my pain is managed effectively, I can't get it. Instead, I must suffer in agony. It's horrendous to have something so simple, so available without complication, and yet unable to get it. I wish sometimes that they would live in my shoes and see what it's like. Maybe then they would be more understanding, and stop limiting potential treatments by thinking outside the box to improve my quality of life.
Before going to rehab, this was somewhat acceptable. Since I never seemed to get complete relief from the medication, any relief was okay and acceptable. I just figured that for whatever reason, I was a person whose pain couldn't be adequately managed. I had pretty much given up on pain management. As long as my pain wasn't a 10, I was okay. It was when it got above this, that I couldn't deal with it. All of this changed when I went into rehab. In rehab I had adequate pain management. I was getting IV Benadryl around the clock. I was also getting oral Dilaudid as breakthrough medication. Though my typical pain management schedule was for Percocet as breakthrough medication, the Benadryl and Dilaudid combination was more effective. With the Benedryl, I needed less medication to effectively manage my pain. It helped the narcotic pain medication work more effectively. With it, I was able to need less narcotic pain medication. I was only needing 2-3 doses of the Dilaudid per day. Some days I didn't need any. My pain was well managed. This was a miracle to me. I had never had adequate pain management. I had pretty much given up hope that it would exist.
When I was discharged from rehab, they wrote a prescription for me to get the IV Benedryl. Before going to rehab, I had been taking oral Benedryl several times a day to control the itching attacks that I get. On an average day, I was taking 6+ doses of breakthrough narcotics and at least 5-6 doses of oral Benadryl. In the hospital, I was only needing ~2 doses of breakthrough narcotics and 2-3 doses of IV Benadryl. Once home, however, Kathy, my infusion nurse, didn't want me to use the IV Benadryl. She said she was concerned because it carried the risk of possibly developing a dyskenesia, or abnormal muscle movement. She said with the challenges I was already experiencing, this was the last thing I needed. Now while I love Kathy and she is an excellent nurse, she is also very opinionated. When she has an opinion about something, she gets stuck on it. Well this was one of those things and she contacted Dr. Giannini about the fact that she strongly felt that the IV Benadryl was not a good idea. I understand her concern, and if I was a typical patient, it would be valid. Of course, if I was a typical patient we wouldn't be discussing it because traditional methods would be successful, but I am not a typical patient. In my opinion, 2-3 doses of IV Benadryl is much better than 6+ doses of oral. Using IV Benadryl, which seems to make the pain medication more effective and thus make it so I require less narcotic pain medicaiton and help control my allergic reactions, seems better than needing 6+ doses of narcotic pain medicaiton. I also don't understand why IV would have this potential side effect if oral did not. Wouldn't you develop it much faster with the 6+ doses/day than 1-2 doses/day? Isn't it better to use non-narcotic medication vs. narcotic pain medication? I also have a hard time understanding why we should veto using IV Benadryl and its benefits for a potential side effect that could occur in the future. This is not even something that will happen, but something that "may" occur as a "potential" side effect. Let's face facts, I'm not going to live forever. My life expectancy just with the CVID alone is 20 years after diagnosis. I have been diagnosed for 5 years. I will be lucky if I get another 5 years out of this situation. During this time I want to be as comfortable as possible. I have a hard time justifying not using a treatment based on potential side effects in the future. I am more concerned with right here, right now. I want to be comfortable. I don't want to be in agony constantly. Being in this much pain is not fair to me. I can't do the things I should and need to do. I can't do as much physical therapy as I should or need to because I'm in so much pain. Pain makes physical therapy and exercising near impossible. The pain completely takes over my body and my life. It's all I can think about. I can't do the things I enjoy because all I can think about is the pain. It is constant, never letting up or giving me a break. Sometimes the pain is so severe that I can't endure it, and worry that I will go crazy from it. No one should have to live this way. It's not fair. It's not a quality of life. I hurt all over. It's depressing. It dampens your mood, and it makes it hard to concentrate on things. Thoughts of pain consume every aspect of my life. The most frustrating thing is that it doesn't have to be this way. The pain can be managed. I have proof of this because it was well managed the entire time that I was in rehab. There is no reason for me to have to suffer. It wasn't difficult to treat. IV Benedryl is a benign medication. It's not difficult to obtain, nor is it a highly regulated medication like many narcotics. It is a simple antihistamine. In addition, it is easy to administer, something I'm capable of doing without a problem. There is no reason for me to be in so much pain when the solution seems so easy. Of course, since Kathy didn't support it, she called Dr. Giannini, my pcp. My pcp listened to her because she is a nurse and obviously knows what she is talking about. When the VNA later called Dr. Giannini to try to get it set up for me to administer the IV Benadryl at home, Dr. Giannini refused to accept the script in support of it. Therefore, I am not able to get it as a medication. So, though the medication helps manage my pain effectively, and with it, I need less narcotic medicaiton and my pain is managed effectively, I can't get it. Instead, I must suffer in agony. It's horrendous to have something so simple, so available without complication, and yet unable to get it. I wish sometimes that they would live in my shoes and see what it's like. Maybe then they would be more understanding, and stop limiting potential treatments by thinking outside the box to improve my quality of life.
Tuesday, August 17, 2010
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....
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....
Subscribe to:
Posts (Atom)