Beth Primus: A Journey Through Pain
This post is long; but the journey I walked was 5,000 miles longer. I write it for those who are on a similar journey with no end in sight; for those who have been struggling to find relief from their suffering, dangling from the end of their rope for so long, they are thinking about cutting themselves lose.
Chronic pain affected EVERY single aspect of my life; emotional, spiritual, mental, social, and physical. It affected all my loved ones lives and my relationships with them.
The following is my story: beginning in the years when my pain started before my diagnosis, following my diagnosis and surgery, and ending with how herbs changed my life.
The First Signs of Something Wrong
I first started experiencing the pain between my shoulder blades when I was in high school. It would hurt for days to a week and then be gone for months. In my medical records, there are 2 x-rays taken of that area from that time and I reported that I didn't know what caused the pain to start.
When I was 21 years old and pregnant, the pain became unbearable. The doctors said it was common during pregnancy. The pain subsided for a couple months after the birth of my son in January 2008 but then worsened.
2008-2011 became the years of diagnostic testing, waiting to see specialists, frustration, and ever-increasing pain. The symptoms became more systemic through the years (no longer just located between my shoulder blades) which forced me to keep pursuing answers; I had nausea, constipation, pain in fingers, toes, behind my knee, my hips, my sciatic.
Misdiagnosed & Dismissed
I was diagnosed with many things in those years and treated based on each diagnosis with no relief. I had MRIs, x-rays, cat-scans, blood tests, endoscopy, colonoscopy etc. I had second opinions, and saw more specialists than I could have imagined existed. In between each one was a wait game when I would put my hopes on the upcoming appointment that was finally going to give me answers only to be told "good news, you are completely healthy". This answer didn't take away my pain like they seemed to expect it would.
I was put on a gluten- and lactose-free diet, I did many hours of physical therapy and chiropractic, I was prescribed heartburn meds, muscle relaxers, prescription strength NSAIDS, and tried having my IUD removed.
This entire time I was still farming with my dad on a 60 cow dairy farm. I baled hay, milked cows, picked rock, and cared for the animals. The fact that I could do this confused me as well as the doctors; This type of work did not make my pain worse, but I could not go running for any distance without excruciating pain.
I coped with the pain by keeping my adrenaline pumping. When I was too physically exhausted, I slept the only way I could—standing up in the shower. I took 12 ibuprofen a day. The pain was taking a visible toll; I weighed 94 pounds and I had wrinkles from permanently grimacing.
Here is an entry in my journal from 2011:
"It's 2 a.m. The wolves are gnawing on my spine again. I feel like blowing my heart out with the shotgun. It seems to be the only reliable answer. I am already dead; I'm sure I'm in hell. Yet I remain shackled to life by the guilt of leaving my son… and so I remain, in pain."
In January 2012, I went in and demanded another MRI of my hip, which had been causing the worst of the pain at that time. She rolled her eyes as she ordered it because by that time she thought I was crazy.
I got in the same day due to a cancellation. I laid in the tube for 10 minutes before the noise stopped for a long time. I was pulled out of the tube and was surprised to see my doctor standing there. She explained that they had found a large "spot" while running the overview locator scan. It was between my shoulder blades and was compressing my spinal cord (T11-T12) causing the pain I had. The MRI I had years earlier didn't detect the tumor because I didn't have contrast dye and it was still small.
She told me that she was changing the order to inject contrast and scan my thoracic spine. I requested one for my lumbar spine as well, but she said no because the compression would be causing that pain too. For whatever reason, she did do the lumbar as well and they found another tumor (S1-S2).
No Relief in Knowing
I'm probably one of the only people who first reacted to the news of a tumor with absolute relief and joy. I thought it was over. At least now, they could fix it.
One week later, I met with the neurosurgeon; one week after that, they removed the first tumor. I was told the second tumor was “just a spot on the MRI”. When the pain didn't go away in a couple months, I went down to the Mayo and that’s when I learned; the 'spot' was a tumor and I had Schwannomatosis, a progressive and chronic disease whose description fit me entirely.
"Schwannomatosis is a rare genetic disorder that results in tumors (called schwannomas) that grow on the peripheral nerves throughout the body [including the spinal chord]. It is recognized most often in people over the age of 30. Schwannomatosis can cause severe, debilitating pain and neurological dysfunction." -Johns Hopkins Medicine(1)
I got answers, but they were bleak. “There is no healing, there is only learning to cope with pain, monitoring for tumor growth and removing them when necessary.” I could no longer cope with the pain by being physically active all the time. They had to remove part of T-11, T-12 vertebrae to get the tumor out and there was no long term future for me in farming.
Giving up Dreams & Changing My Life Around
In August 2012, I gave up on my dream of farming and began to take online generals to become an RN. It was hard to concentrate through the pain. I began to search, once again, for pain relief. More physical therapy, traction, ultrasound, yoga, TENS units, lidocaine creams and patches, gabapentin, pregabalin, duloxetine, prednisone during "flare-ups", ibuprofen, hydrocodone, nerve ablations, epidural injections, triggerpoint injections, breathing techniques, etc.
Countless trips to the Mayo and yearly MRIs to monitor the tumors. (A few more appeared which are all growing on the dorsal roots of my spinal cord. There is conflicting opinion about whether the first tumor is recurring or if its scar tissue.)
I had cycles where I would try something new for the pain, then recover from it (because many of the things I tried caused more pain) then give up for a few months, then decide I couldn't live like this, then try something new.
In 2015, four months before graduating college, I wondered if it was even worth it to finish school. I didn't think I would be able to work enough or even at all. Every day ended at 2 p.m. When I was done with school, I would have to lie down and was unable to get out of bed to even feed myself, all I could do was "breathe out my pain".
A Daily Regimen of Coping
At that time I was on 600 mg of pregabalin, 60 mg of duloxetine, 2.5%ketamine/10% amitriptyline topical cream, about 5 hydrocodone and 8 ibuprofen per day. The only time I spent with my son was when he would lie beside me and I would read to him, play board games or just talk; my partner took care of him.
I did graduate and got a perfect part time job doing pediatric homecare. It was early September 2015 and the pain was managed, but I wanted to get off the opioids; it wasn't managed without them.
Late September, I went completely downhill. I was sure there was another tumor or the ones that were there were growing. I went to the Mayo, I had an MRI, no answers, I was put on hydromorphone (14 times more potent than morphine). I was on it for 3 months until the doctor said I had to go off it.
I'm a nurse, I'm well aware of the dangers of opioids, but I also know extreme pain and it is very scary to have the only thing somewhat controlling the pain be taken away without an equal alternative. The doctor did raise the amount of ketamine. It helped enough to get off the hydromorphone and still breathe, but I was back to sleeping in the shower, barely working 12 hours a week with nothing left for anyone.
Change & Hope & Taking Control of My Future
The late spring/early summer of 2016 marked a changing point; the beginning of a healing that I had been searching for. It arrived in an envelope with a "keep your chin up" card from my sister. In it was a bottle that read "prickly ash" with instructions to take 3 drops morning and night. I took it faithfully without really thinking it was going to do any good.
Two weeks later, I was surprised that I was able to last longer into the day without the pain bringing me down and I was also able to be more active throughout the day. I was really excited, but also hesitant to allow myself to be. I ran out of the prickly ash, so I tried to contact the person my sister had got it from, Clare, and I also ordered some off Amazon. (The stuff from Amazon made me really sick the one and only time I tried it, but by then I had received more of the herb from Clare.)
I continued to feel better. Some days, I would look at the clock surprised to see how late it was and realize that I had only needed two pain meds all day. I began to pick up more hours at work.
I met with Clare and she tested a few new herbs on me. She adjusted my dose of prickly ash, and I started on cleavers, catnip, elderflower, horsetail spray to use topically on my back, and dandelion flower oil for my legs. Each one had their separate purpose.
Two months after starting prickly ash, I also researched vitamins that were good to take for nerve health and chronic pain. I was shocked that a doctor had never suggested these to me while "get a good night's rest” and “try a different style bra" were. I started taking vitamin D, lipoic acid, vitamin B12, CoQ enzyme and a multivitamin.
A Serious Reduction in Pharmaceuticals
In my experience, a nurse tends to be more holistic and open to alternative medicine out of all the professions in western medicine, but I did have a hard time wrapping my understanding around the obvious power of herbs when all other things had failed me.
About 3 months after I began the herbs, I quit my duloxetine without side-effects because I was so happy to feel good again that depression was the farthest from my mind. I would have a bad day and panic that it was another flare-up and that the herb had quit helping, but it never lasted longer than 2 days.
On my support group, people with my disease were discussing pregabalin. I had gained 45 pounds while I was on it, but was under the impression that I couldn't live without it because, if I missed a dose or before I was due for my next dose, I hurt so bad all over that I would get nauseated. Someone posted an article about pregabalin causing terrible long-lasting withdrawal symptoms and people began to share their stories about it. It was the exact symptoms that I was having so I made up my mind to taper off it. I did it over a four week period and it was hell.
I met with Clare again once I was completely off it for a week (I was still very sick at that point). She adjusted my herbs and I also was put on black walnut. My body loved it. 4 weeks from that day, I was completely recovered from the withdrawals. I actually felt better off the pregabalin. I believe it was hampering my healing process.
I was easily able to cut down the hydrocodone to no more than two pills a day. Initially, I tried to cut it out completely and was getting very frustrated that the pain wasn't controlled, but then decided to take it as it comes. Some days I get by with one just fine and I know it will continue to progressively get better. I am no longer using ibuprofen and I don't need the ketamine cream.
Rebuilding a Life
I also got the following things back:
I run 3-5 miles 3 times a week (I don't take a single mile for granted)
I do pilates and strength training
I lost 25 pounds and am now at a healthy weight (I gained 45 pounds while I was on all the medication)
I work full time (my clients got their nurse back)
I go out for social events (my friends got their friend back)
I build forts and play pokemon go with my son (my son got his mom back)
I got hope back. I got my life back. Should another tumor grow that I need surgically removed, I know that there is hope.
Having to remembering how bad it was, all the horrible events I went through made writing this difficult. It was the first time I've shared my experience. I have come so far, I am no longer the same person I was.
The bad times made me a stronger, wiser, more determined, empathetic person. My experience navigating the medical system turned me into a powerful, fiercely protective advocate for my patients and their families. It led me down a career path that I am happy with.
However, I was unable to use any of those attributes when I was consumed by physical pain. To be honest, I would gladly give up those attributes and not have gone through any of this, but it's not an option.
Suggestions on How to Help a Loved One in Distress
A person gets so many well-intentioned suggestions when it comes to their health problems. For those of you who have loved ones who are suffering and you are looking for answers for them, here is a word of advice:
Whether it is an herb, a vitamin, acupuncture, massage, oils, etc. Don’t just suggest it, give it to them.
Give them a gift certificate, but the product itself is better. A person receives so many suggestions, they are overwhelmed, scared to hope, and have no energy to pursue what they view as another dead-end. I would never have pursued this as a suggestion. As it was, I received it in the mail. I was out nothing by giving it a try and I was lucky enough, out of all the herbal options, to be given the one my body really needed.
Another important point is that, if you decide to try herbs, googling your symptoms and ordering whatever herbs come up isn't the best way to proceed with it. It is far worth your time and money to see a professional herbalist for advice. It will help eliminate the frustration of trial and error, save you money by not buying herbs that won't help or make you feel worse, and prevent you from writing all herbs off as just another thing you tried that’s failed you.