Join Date: Mar 2012
Location: Washington, DC
Hoping doctor will weigh in, no idea what to try next
I'm brand new to the group, but have appreciated the chance to review previous threads. I'm very eager to hear advice on how to proceed with chronic pain management. Afraid this may be a long post; thanks in advance for allowing me to lay it all out.
I'm 34 and have five kids (ages nine years through nine months). I have a "slightly" bulging disc and "some suggestion" of degenerative disc disease, which runs in my family. No diagnosis more serious than chronic SI and facet joint pain and related "itis"es. No big injury or malformation, just a lot of kids quickly.
My life is affected by pain in a number of negative ways: having to assemble everything for the day each morning so that I don't have to go upstairs until night time; avoiding carrying the kids, who all are young enough to appreciate being picked up and cuddled; sitting down in a number of circumstances when others are standing; being caught grimacing even though I'm feeling happy and engaged...
My pain ranges from 3 to 9 each day, depending on activities and medication. Severe enough to make me cry, but lame enough to make me wonder how cancer patients and trauma victims can handle what they must face.
I began receiving treatment for chronic low back pain in 2008, during my fourth pregnancy. I have had a series of trigger point injections, acupuncture, acupressure, chiropractic, facet joint injections, SI injections, and physical therapy. Evaluating each one-by-one, I would say I have received excellent care. But overall, I've had no relief.
I have never had medication-only treatment. But concurrent with other treatments, I have taken a series of medications: I began in 2008 with Tylenol III, prescribed by my OB/GYN. I was referred to a DO during that pregnancy and was given 60 doses of (10 mg) Oxycontin, which I took over a period of about three months. Following delivery, I began seeing a neurologist, who referred me to physical and chiropractic therapy and prescribed Vicodin ES, about 30 (7.5 mg) every month or two. No real relief, but livable pain, and a level of treatment I felt comfortable with given the fact that I was nursing a baby, had three other young children, and had a full-time (high-pressure but telecommuting) job. I couldn't then, and still can't, accept medication side effects that will slow me down.
After there was no resolution with the therapies and medication, the neurologist referred me to a pain management clinic in 2011, following my fifth pregnancy. I maintained physical therapy, home exercise, chiropractic, acupuncture, and grin-and-bear-it therapy, along with Vicodin (one or two 5 mg. per day during last month of pregnancy).
Once I delivered our fifth baby, the pain management doctor (part of a large, well-known practice), changed my medication to Opana (10 mg.) once per day. From what I read, and what I experienced, this was a poor choice, because the medication is formulated to last only 12 hours, leaving the other 12 hours open for pain and narcotic withdrawal. I was prescribed 1 (5 mg.) Vicodin per day for "breakthrough" pain, which I suppose occurred in the 12 hours between Opana doses. I asked to replace the Opana with a shorter-acting medication, such as the Vicodin ES I'd been taking, but was told, and understood, the reasons that was riskier on a long-term basis.
My family and I moved from one city to another during this time, and since August 2011, I have been prescribed this cocktail: 1/2 Perarfon Forte per day, 4 Tramadol per day, 2 Oxycontin (10 mg.) per day, 1 Oxycodone (5 mg.) per day, and 1 Oxaprozin (50 mg.) per day. Simultaneously, I've been undergoing physical therapy as often as possible (as often as twice per week, as infrequently as once every few weeks). The physical therapist is tremendous and has given me home exercises, which I do religiously twice per day. I've also had dry needling during this time.
Even with so many medications, my pain is literally the same as when I began treatment in 2008. I don't know if it's increased, keeping pace with the therapies, or if it has stayed the same and I have just not found the right therapy combination yet.
My pain management doctor is moving across the country and closing his office, which gives me this opportunity to try to fix this situation. These are my considerations, and I would be so grateful for the community's advice:
1. With five kids, I am not going to modify my lifestyle to the extent necessary to solve my pain in the short-term. The kids, even the nine-month-old, are very independent and aware that I can't lift them as often as I'd like. But I'm not in a position to totally limit activity.
2. With the kids and a more-than-full-time job, frequent appointments are a terrible inconvenience. I can't continue committing to weekly PT appointments, and monthly PM appointments are difficult to justify when my pain is not significantly decreased by medication.
3. I have not had significant side effects from any of the medications. And I don't have any philosophical problem with taking them if they help. But to pay so much money and jump through so many hoops for ineffective treatment--which comes a stigma--is difficult to justify.
4. I have at least three (often five) kids with me for appointments. The kids behave as well as adults, but that is a large number of people to have in an exam room! Am I wrong in thinking that Vicodin or Percocet are potentially as effective as long-acting drugs but would require fewer follow-up appointments?
5. I have asked for shorter-acting medications that are subject to fewer regulations (monthly appointments, urine testing, expense, etc.) and been told that this "does not meet standard-of-care." Is it not possible to take a higher dosage of Vicodin or Percocet (up to 10 mg. ever four hours) as needed and pursue other treatments as often as I am already? I exercise and enjoy physical therapy, manipulation, massage, acupuncture, etc. Can I not use medicine as a tangential treatment through a primary care physician?
I do feel I need medication every day of my life, but I don't feel committed to a lifelong treatement of this, and to ever-increasing dosages. I don't understand the far leap from Vicodin to Opana, for instance. Especially when there are different levels of Vicodin, then Percocet, whose efficacy could be explored.
6. Is it possible to find a primary care physician in Northern Virginia who would understand that medication is just one part of the approach? And would a family care physician be more sensitive to the fact that the kids and our family are the focus here? I don't even believe in a cure anymore. I would like to find a family doctor who recognizes that my pain is just one part of the family landscape.
7. I can't go through it again: the urinalysis, the describing my pain, the commitment to come each month with kids in tow and describe how I'm still in pain, the effort to not be defensive when the doctor asks why I'm not going to PT six times a week when I've got so much else to balance, the assurances that I'm actually happy and this is not a byproduct of stress. My life is busy, but it's nice, and I don't want to have to keep defending how many kids we have!
8. Medication is the one part of it I can't handle by myself. I exercise, I limit strain, I go to other treatment providers, I practice biofeedback techniques...I believe in all of this. I just would like to find someone who understands that my goal is overall pain relief.
Is this possible through a PCP in northern Virginia? Is there more I could be doing as a responsible patient? I am feeling more and more defeated. And I'm someone who's had comparatively good care. I shudder to think about those of you who haven't.
I will be so grateful for your advice on what to do next.