Posted 9/23/2012 10:08 PM (GMT 0)
Hello to everyone. I've just joined the site and I'm glad I did because it lets me know that I'm not the only one that's dealing with chronic pain and suffering. Even though we're not supposed to allow pain to rule our lives (according to my psychologist so I'm like, "Yeah, right - you don't even know the half of it, sister."), I can say that it's ruling mine at the moment and I need some advice on what to do.
I developed peripheral neuropathy in my left leg last year in May. I developed it by way of suicide (an absolutely LONG story to tell), which had me in the hospital for about a month and a half. At first, I couldn't walk whatsoever - I had to have assistance. When I was released from the hospital, they didn't set me up with physical therapy, so I had to teach myself how to use my left leg again, and it wasn't easy. I'd say it was akin to what Uma Thurman portrayed in "Kill Bill: Vol. 1" when she escaped the hospital - I had to sit there and tell myself to wiggle a toe. However, and quite obviously now, I'm able to walk okay, but not as well as I was. I've had low back pain since I was a elementary child (I'm 18 now) from carrying heavy textbooks home to study. At that time, I knew nothing about chronic pain - I just knew that my back was always hurting and my mother dismissed it to me to say that it was from the heavy textbooks, but she also said that back problems ran in my father's side of the family - that almost everyone has had back surgery for one reason or another.
After being set up with a new primary care doctor in the hospital, he began working with me to help me manage my peripheral neuropathic pain. I was started on 10 mg oxycodone and 60 mg duloxetine (Cymbalta) in the hospital, which he continued after my release. After 60 days, I was on 20 mg oxycodone because the pain got more intense and my tolerance began to build. So, he suggested that we start me on a long-acting opioid (which he suggested at the very first visit, but my insurance will not pay for SR [sustained release] opioids until you've been on an immediate-release formulation of an opioid for 61 days), and he started me on 30 mg morphine sulfate ER (MS Contin) b.i.d. for coverage and 15 mg oxycodone IR for breakthrough pain. This combination worked well until August, where school was starting. I was being a bit stubborn because I didn't want the school to know that one, I was taking pain medication, and two, I didn't want them to label me as a disabled child because I didn't want anyone to necessarily help me. However, both things happened - because the campus was so large and you had to walk long distances, it put a lot of pressure on my leg.
So my doctor switched my prescription to 30 mg morphine sulfate ER (MS Contin) t.i.d for coverage and 30 mg oxycodone IR for breakthrough pain. As the fall/winter season was arriving in 2011, we eventually switched me to 40 mg oxycodone ER (OxyContin) and 30 mg oxycodone IR for breakthrough pain. They also recommended physical therapy and at first it was okay, but out of the twelve sessions that my insurance would pay for, only half of them really helped. By the beginning of November, I began to get weaker, and my physical therapist noticed and recommended that I go back to my doctor and tell him to send me to a neurologist to have me further diagnosed because I was becoming stiff. My doctor wouldn't hear of it - he said that the neurologist that looked at me back in May said there was nothing they could do but just manage my pain with opioid medications and physical therapy. So he made the ultimatum that I could not receive opioid medications whatsoever unless I went to physical therapy. He and his attending physician would call weekly to my physical therapist to see if I went to all the sessions the month previously before they would write my prescription. Well, obviously, I'm not the only patient that the physical therapist sees, so sometimes she was unable to return their call. They would hold my prescriptions from me until she or the receptionist returned their call. Well, in May of this year, my doctor made another ultimatum that if I didn't get back into physical therapy (regardless of insurance paying or not paying for it) before I came back next month, he was going to go on ahead and have me terminated from the clinic.
I told him I understood and that I would set up the appointment, but I couldn't guarantee him that I was going to go because I didn't want to have to pay for something that my insurance would not cover until he did the proper paperwork. He said as long as I had an appointment set up, he didn't care. Well, the following day after that appointment, I got into an accident due to a motorcyclist swerving in front of me, so my car was in the shop for a few days. I immediately called my doctor's office to inform them, but his nurse never returned my calls to follow-up with me during the month of May (I called the day of the accident - the 9th - and I called the following week twice) to let me know what my doctor or his attending physician that day thought would be the best course of action. They never returned my calls. So in June, when I requested my refill, I was verbally informed by my doctor's nurse that they had terminated me last month at my visit. I didn't understand because I never received a letter in the mail from the clinic informing me of that nor was I under the impression that I was terminated that day and he was no longer my doctor. So I had to endure opiate withdrawal for a few days because the CMO (chief medical officer - the physician who was in charge of the "Internal Medicine" and "Pain Management" clinics - my doctor's boss and head attending physician) had to think about it before he would allow any physician to write the prescription. Because of the knowledge of my pain and the kindness of his heart (I guess), he allowed for one last refill for the month of June and that I was under the clinic's care until the 1st of July. In this time, I could not find another primary doctor nor a pain management doctor that would be willing to take care of me because I was under the care of another doctor.
Cut to today, I have found a new primary care doctor and I'm having issues with her. She hasn't requested my medical records from the hospital nor from the clinic to assess and manage my pain. Before I was "fired" from the clinic, my doctor had entered into my medical records that I probably didn't have peripheral neuropathy anymore - that my pain had progressed to CRPS. I found this out after requesting a PDF file of my records. I've informed my doctor of this and her nurse who's sweet as can be, informed me last week that my doctor and the attending physicians think that I'm feigning my pain only to receive opioid medications. I said to her nurse, "What 18 year old do you know that has pain request oxycodone to relieve their pain unless they were a cancer patient (which I was at one point - another LONG story)?" I had no idea about medications until I was dealing with what I do now all day and all night. What I don't understand is that if I'm feigning my pain, then why would I continue to ask for relief of pain to the point of suicidal ideation [the thought of suicidal actions, but no plan in place - I think you're allowed to have the thoughts as long as you don't act or plan on them]?
If I'm feigning my pain, then why would my prescription monitoring record for the state have that I picked up my schedule II medicines on a certain day every month for a year straight? I know doctors don't prescribe the strength of oxycodone that I was on easily, but if I'm telling you what I took before and it matches up correctly, doesn't that honesty count for something? I'm just tired of hurting...my pain has taken over my life. I used to be the most outgoing person, but now I'm reclusive. I don't like going out anymore, I don't like talking anymore, and I just don't like having fun anymore. I have to put on a facade to get through the day because I don't want people to ask me what's wrong and I tell them that I'm just in pain. Regardless of if my pain is completely neuropathic in nature or has progressed to CRPS with MDD, doesn't a doctor have a duty to take care of their patient in the best way they feel possible?