Longtime Lurker, First time Poster
Posted: Tue Sep 11, 2018 4:03 pm
Hello people,
I am posting today to introduce myself, and because I am lacking the social and emotional support that I need right now. I have been suffering with PN since 2005. My story is long, but writing is therapeutic for me, so feel free to click your back button and move along.
My original injury occurred during an advanced level modern dance class or the following yoga class at age 40. As a former professional dancer, my brain was *right there*, but my old and de-conditioned body was not. I had immediate severe pain at Alcock's Canal on the right side. At first I thought it was a high hamstring injury, but was repeatedly turned away from orthopedic doctors due to the location of the pain. My GYN knew nothing either. It took 2 years of research to finally find a pelvic pain specialist--a doctor who was willing to treat me. Diagnosis: PN.
For the following 5 years, I tried every treatment option that was offered to me. NSAIDs provided some relief until I developed colitis. No more NSAIDs for me, ever. I endured 3 dedicated rounds of pelvic PT (2 with "Pelvic Guru"), which only flared my pain with every visit. I had a uterine ablation to reduce period-related pain flares. I tried an intrathecal pain pump. Ad infinitum. At the end of this 5-year period, I was having some success with Nucynta and Zanaflex, and decided together with my doctor that a hands-off approach kept my pain levels lowest. I quit my job to facilitate increased rest. Eventually my pain reached a tolerable level, with all of the lifestyle modifications and cushions and ice packs and braces I could buy. I continued to visit my doctor regularly, and she continued to prescribe pain medication. Since I could tolerate the pain, I considered the PN to be "in remission". I was able to travel, to dine out, to attend cultural events and sporting events, to walk my dog 3 miles every morning, and have a social life.
Fast-forward to March 2017. I had been keeping an eye on a dull ache on the top of my right foot near the toes. Apparently a stress fracture was brewing. On the 15th of that month--a day that is forever burned into my memory--I took my mother out to get routine pedicures. During the massage portion, my pedicurist broke my toe. Metatarsal, actually. Generally slow to heal, I spent 12 weeks in a walking boot/cast. During this period, my PN acted up. My pelvic pain doctor had closed her private practice and moved to the local VA Hospital, where I have no benefits. Out of luck and in increasing pain, I finally found my way to the only specialist in my state, thanks to the extensive research conducted by my lovely foot doctor.
The first time that I saw this new pelvic pain specialist, I was still wearing the boot on my right foot. My PN pain was off-the-charts excruciating--pain levels that I had *never* experienced before. I was bedridden with pain, laying on my belly (the only tolerable position I can find, still), with my foot dangling off the edge of the bed. The doctor and I began our professional relationship and treatments. Nucynta and Zanaflex. Four nerve blocks. Two costly stem cell surgeries. PT. Seven trigger point injections to the pelvic floor. Discussions of Botox. Monthly visits.
In March 2018, I phoned for an emergency appointment with him due to extreme levels of pain. It was four months after my second stem cell procedure (twice the amount of stem cells, at twice the cost), and I was in complete relapse. At this emergency appointment, I expected to schedule a third round of stem cells. The second procedure had in fact provided me with three weeks of complete relief. Instead, the doctor wrote me my final prescription for Nucynta along with tapering instructions. There are other pertinent details of this visit, but I'll spare you and just say that it was traumatizing. Next the doctor pulled my scripts for Zanaflex (which I had been on for over a decade, and is so very benign) and Neurontin (which wasn't helping anyway). Long story short, I never heard from his office again.
In the following months, which lead up to now, my neuropathy is spreading far and wide. Previously right-sided pelvic pain has spread to the entire pelvis. Both ischial tuberosities are screaming. Both sets of hamstrings are throbbing. Both psoas muscles are tender and sore. The iliac crest stings like a bee. On the right side, the pain extends to the lateral side of my foot and sometimes the sole. My spine, from coccyx to cervical spine are killing me. And I've been reduced to Tylenol and ice. Sucks to be me right now.
I have taken some proactive steps to seek further treatment. My PCP has referred me to a pain management doctor. I am also scheduled with an out-of-town specialist. Appointment is a few weeks out. Meanwhile, I wait in bed (and try to figure out how I will travel). I'm severely depressed, big surprise? So depressed that I have no appetite and zero hunger signals. I've dropped 40 lbs off my petite frame without intention. My family relationships are strained, particularly with my young adult children who are temporarily living at home. I'm sure that they are scared and sad to see Mom like this, but it's easier to express anger and be judgmental. They truly do not understand, and have no inclination to do any research of their own about PN. They think that I'm 100% identified with my pain and depression, and that I just need to do more, power through this, and stop being so dependent on their Dad for physical support. I am attempting to accept that their point of view is valid for them, without taking it personally. But I am taking it personally, and it hurts so very much.
I talk to a psychotherapist weekly (often by phone from my bed) and have a longstanding relationship with a prescribing psychiatrist for antidepressants and anti-anxiety meds. I am seeing a nutritionist and have gained 4 lbs. But the desperation for pain relief is real. I am sure that you all understand this, but no one else does. Even my beloved husband, who does everything good for me, cannot know how it feels to have a dagger in his crotch along with pain up and down his body. I'm currently isolating from everyone in my life. The depression is so deep that I could probably benefit from inpatient therapy at this point, but there's no way on earth that my body could tolerate participating in these types of structured programs.
I swear I'm doing my best here. The feedback I'm getting is that I'm not doing enough to get well. All I can rely on is my own knowledge that I'm doing my best in a terrible situation, that is also having negative fallout on the people I love. Sometimes that truth only feeds the depression.
Mental health aside, the simple fact is that this pain will not subside. And I'm at my wit's end. So here I am, finally registering an account in another attempt to improve my health. If you've made it this far, thank you and congratulations! It's nice to meet you!
I am posting today to introduce myself, and because I am lacking the social and emotional support that I need right now. I have been suffering with PN since 2005. My story is long, but writing is therapeutic for me, so feel free to click your back button and move along.
My original injury occurred during an advanced level modern dance class or the following yoga class at age 40. As a former professional dancer, my brain was *right there*, but my old and de-conditioned body was not. I had immediate severe pain at Alcock's Canal on the right side. At first I thought it was a high hamstring injury, but was repeatedly turned away from orthopedic doctors due to the location of the pain. My GYN knew nothing either. It took 2 years of research to finally find a pelvic pain specialist--a doctor who was willing to treat me. Diagnosis: PN.
For the following 5 years, I tried every treatment option that was offered to me. NSAIDs provided some relief until I developed colitis. No more NSAIDs for me, ever. I endured 3 dedicated rounds of pelvic PT (2 with "Pelvic Guru"), which only flared my pain with every visit. I had a uterine ablation to reduce period-related pain flares. I tried an intrathecal pain pump. Ad infinitum. At the end of this 5-year period, I was having some success with Nucynta and Zanaflex, and decided together with my doctor that a hands-off approach kept my pain levels lowest. I quit my job to facilitate increased rest. Eventually my pain reached a tolerable level, with all of the lifestyle modifications and cushions and ice packs and braces I could buy. I continued to visit my doctor regularly, and she continued to prescribe pain medication. Since I could tolerate the pain, I considered the PN to be "in remission". I was able to travel, to dine out, to attend cultural events and sporting events, to walk my dog 3 miles every morning, and have a social life.
Fast-forward to March 2017. I had been keeping an eye on a dull ache on the top of my right foot near the toes. Apparently a stress fracture was brewing. On the 15th of that month--a day that is forever burned into my memory--I took my mother out to get routine pedicures. During the massage portion, my pedicurist broke my toe. Metatarsal, actually. Generally slow to heal, I spent 12 weeks in a walking boot/cast. During this period, my PN acted up. My pelvic pain doctor had closed her private practice and moved to the local VA Hospital, where I have no benefits. Out of luck and in increasing pain, I finally found my way to the only specialist in my state, thanks to the extensive research conducted by my lovely foot doctor.
The first time that I saw this new pelvic pain specialist, I was still wearing the boot on my right foot. My PN pain was off-the-charts excruciating--pain levels that I had *never* experienced before. I was bedridden with pain, laying on my belly (the only tolerable position I can find, still), with my foot dangling off the edge of the bed. The doctor and I began our professional relationship and treatments. Nucynta and Zanaflex. Four nerve blocks. Two costly stem cell surgeries. PT. Seven trigger point injections to the pelvic floor. Discussions of Botox. Monthly visits.
In March 2018, I phoned for an emergency appointment with him due to extreme levels of pain. It was four months after my second stem cell procedure (twice the amount of stem cells, at twice the cost), and I was in complete relapse. At this emergency appointment, I expected to schedule a third round of stem cells. The second procedure had in fact provided me with three weeks of complete relief. Instead, the doctor wrote me my final prescription for Nucynta along with tapering instructions. There are other pertinent details of this visit, but I'll spare you and just say that it was traumatizing. Next the doctor pulled my scripts for Zanaflex (which I had been on for over a decade, and is so very benign) and Neurontin (which wasn't helping anyway). Long story short, I never heard from his office again.
In the following months, which lead up to now, my neuropathy is spreading far and wide. Previously right-sided pelvic pain has spread to the entire pelvis. Both ischial tuberosities are screaming. Both sets of hamstrings are throbbing. Both psoas muscles are tender and sore. The iliac crest stings like a bee. On the right side, the pain extends to the lateral side of my foot and sometimes the sole. My spine, from coccyx to cervical spine are killing me. And I've been reduced to Tylenol and ice. Sucks to be me right now.
I have taken some proactive steps to seek further treatment. My PCP has referred me to a pain management doctor. I am also scheduled with an out-of-town specialist. Appointment is a few weeks out. Meanwhile, I wait in bed (and try to figure out how I will travel). I'm severely depressed, big surprise? So depressed that I have no appetite and zero hunger signals. I've dropped 40 lbs off my petite frame without intention. My family relationships are strained, particularly with my young adult children who are temporarily living at home. I'm sure that they are scared and sad to see Mom like this, but it's easier to express anger and be judgmental. They truly do not understand, and have no inclination to do any research of their own about PN. They think that I'm 100% identified with my pain and depression, and that I just need to do more, power through this, and stop being so dependent on their Dad for physical support. I am attempting to accept that their point of view is valid for them, without taking it personally. But I am taking it personally, and it hurts so very much.
I talk to a psychotherapist weekly (often by phone from my bed) and have a longstanding relationship with a prescribing psychiatrist for antidepressants and anti-anxiety meds. I am seeing a nutritionist and have gained 4 lbs. But the desperation for pain relief is real. I am sure that you all understand this, but no one else does. Even my beloved husband, who does everything good for me, cannot know how it feels to have a dagger in his crotch along with pain up and down his body. I'm currently isolating from everyone in my life. The depression is so deep that I could probably benefit from inpatient therapy at this point, but there's no way on earth that my body could tolerate participating in these types of structured programs.
I swear I'm doing my best here. The feedback I'm getting is that I'm not doing enough to get well. All I can rely on is my own knowledge that I'm doing my best in a terrible situation, that is also having negative fallout on the people I love. Sometimes that truth only feeds the depression.
Mental health aside, the simple fact is that this pain will not subside. And I'm at my wit's end. So here I am, finally registering an account in another attempt to improve my health. If you've made it this far, thank you and congratulations! It's nice to meet you!