Our Third Month at Spero

Joe is a Thief

During one of my pain psychology sessions last year, my psychologist called me a professional “time traveller." I am an expert at “traveling” into the future and worrying about events that haven’t happened yet as if they are true threats to me in the present time. This anxiety would perpetuate this familiar cycle of: worry, pain, pressure, self-criticism, and more pain. Over the last three months, I’ve come to realize that I’m not the only time traveller here. Many Spero patients battling CRPS and Fibromyalgia are as well, suffering from paralyzing anxiety and all-consuming worry.

To be frank, I have been traumatized by my pain. I think my friends at Spero would agree with me that, over time, we began to see our bodies as nothing but sources of pain. We constantly scan our bodies for threats — these threats manifest through symptoms such as burning, stinging, cramping, throbbing, stabbing, color and temperature changes etc. This hyper-vigilance becomes a habit and we fall victim to a constant state of high alert and become paranoid of every little twinge or sensation in our body. I feel held hostage by my symptoms: “Is this a sensation or pain? Is something wrong? Is this an isolated event? What did I do to bring it on? How can I make it stop?” These questions swirl around in our heads and only contribute to more pain, which strengthens and solidifies those pain circuits aforementioned.

“Neurons that fire together, wire together.” It’s hard to wholeheartedly believe that even though my pain was and is created by my brain (CRPS is a neurologic condition) that same brain has the wherewithal to heal its faulty wiring.

The fact of the matter is, there are still so many questions people with CRPS and their caretakers wish to have answered: In which cases is true remission possible. What does remission look like? How hard will we have to work to maintain it? What are the “best” modalities for treatment? How much does our improvement depend on which therapist we are paired with or which clinic is delivering the treatment? How strongly does improvement depend on our positive attitude and openness to being healed?

Unfortunately for me, and other people like me who are plagued with chronic pain, chronic pain affects everyone differently. (To be honest, I still can’t believe I find myself in this situation, coming to terms with this diagnosis has been an on-going battle). There are a multitude of causes in the body and mind for which the medical community has no “right” answers.

What we do know is that injury wreaks havoc on the nervous system on multiple levels: in the body, spinal cord, and brain. “Higher level brain centers” of the human brain associated with complex processes like perception, mood, judgment, planning, and decision-making can obstruct pain or intensify it, promote recovery or make pain chronic. In the words of Alan Gordon, a psychotherapist and the founder of the Pain Psychology Center in Los Angeles, “those higher level brain centers create our personality, our emotions and our perception of who we are, and where we belong in the world. So, in a very real way, chronic pain is entangled with our understanding of what the pain means to us and our outlook for the future” (Gordon & Ziv, 2021). We, whose resting state is pain, look forward to the future, when we aren’t suffering anymore.

So, I ask: can you blame me for “time traveling” so often?

The hardest part for me has been coming to terms with the fact that my diagnosis has not only taken my future as I knew it away, but it’s also stolen any idea of what my future with Connor might have looked like. I became a patient overnight, and Connor became my caregiver. Four years ago, neither of us envisioned being unemployed, in Arkansas, fighting for remission and the future we had planned together. Having a chronic illness not only burdens you, but you are weighed down with knowledge that you have become a burden to the ones you love. I truly didn’t know how much of an emotional battle this would be. There is so much pressure to “get well.” I am constantly hoping to wake up the next day pain-free so that we can press the play button, so to speak.

During the first two months of treatment, it was more difficult to stay in the present, remain optimistic, and have faith that my chronic pain can be cured. Will I get to zero pain? If I do, will the pain come back? How will I be able to handle a job without relapsing due to stress or exertion? Do I need to live near my care team? Will I be able to have my own children? If I do, will they inherit my CRPS? Will my immune system get stronger once my nervous system is healed?

When you are completely overwhelmed by the negative you lose sight of what it is to be positive, and there have been a lot of positives this past month. I’ve started to titrate (cut down) my pain medications. I was taking 400mg of Lyrica (Pregabalin) daily when I got here, and now I am only taking 100mg a day. I have been on Lyrica for about a year. Although it was a game changer in terms of relieving my CRPS symptoms and pain, it had many negative side effects on my mind and body. A very good doctor in Springdale, AR, is overseeing my care and we’ve been aggressive, but listening to my body. Next we will target Cymbalta (common among spero patients for pain and depression) and Relafan (a strong NSAID). I wish I knew to titrate before coming to Spero (one gripe I have with the clinic), because I believe there is a big chance I might not have been here this long — as we would have been working with my true pain.

Titrating hasn’t been perfect. As I cut my pain medications, I am feeling more pain and my symptoms are presenting in places they haven’t affected me before. My right foot and leg shows CRPS symptoms, and sometimes I feel arbitrary pains in my right hand, left wrist, and left cheek. It’s been tough coming to clinic, getting to a place where I am holding 0-3 pain, and then 12 weeks in, my baseline pain has shifted up to 3-6. It’s cruel, but this is the process, and I am trusting the process.

Another positive is that I wouldn’t say I am as fearful of my pain anymore. Lately, it’s been more that I feel beat down by it all. After my diagnosis, I started to think of my life as a pendulum: existing in pain, or fearfully waiting for the pain to strike. Worrying that every sensation is a potential threat is exhausting. But a chiropractor at Spero who I see twice a week is working with me on catching my negative feelings and unfounded fears, acknowledging them, saying thank you, and popping them like balloons. When you are too busy being grateful, your brain can’t dwell on pain. Instead, I am working on focusing on the positive sensations and meditating on the times when my body isn’t in pain, so that I can remember that pain isn’t my natural state.

One other thing is that I think I am time traveling time less and less. I decided to hang my time traveling suit up and fight for my future by staying in the present and working hard at clinic. A few things contributed to this shift in me. One pivotal change was undergoing Cereset. Cerest is a treatment offered by Spero that works to “reset” your brain's balance, using only sound feedback. When your brain is consumed by fear and your body is stuck in a flight or fight state, the stress to your mind, body, and overall well-being are considerable. Cereset assists the brain in getting “unstuck” and returns it to a state of optimal functioning. It’s fascinating and very effective, but I won’t go into more detail here. If you’re interested in reading more, I’ve copied the official website at the bottom of this post.

A few important things to note. I just had my three month evaluation and my new progress report estimates that I will need 8 more weeks of treatment.

Read more about Cereset and how it may help you here: https://cereset.com

Connor and I have identified the following birds this month: Eastern Bluebird, Brown-headed Cowbird, Common Grackle, Ruby-crowned Kinglet, American Robin, Carolina Wren, Red Bellied Woodpecker, European Starling, Red-shouldered Hawk

Our Second Month at Spero

Battle Weary

To tell you the truth, I found my second month at Spero to be extremely difficult. I felt like Sisyphus pushing an immense boulder up the side of a mountain. But instead of being punished for cheating death twice, I was beaten down by a chronic pain disorder that I did not want or ask for, and I was pushing while suffering from shocking, burning pain.

I began my fifth week with a bacterial infection I caught due to an ingrown toenail (which plague me often)… that believe it or not, greatly impacted my treatment. I didn’t know it yet, but my body’s inflammatory stress response would slow down my progress.

As someone who suffers from CRPS, I have a compromised immune system. This means my central nervous system cannot govern my immune system correctly– my stress level is sky high, I always have a cold or stomach issues, I’m chronically fatigued, and I battle frequent infections that take forever to treat. An infection wreaks havoc on my body– hampering my vagus nerve function and causing massive inflammation, which negatively affects my nervous system and GI tract (which has the daunting task of maintaining immune homeostasis).

I was pulled out of a few therapies, and wasn’t allowed to start new ones because an infection is a contraindication – it would not have been safe for me. Not only was I removed from therapies that calm my sympathetic nervous system, but I was set back in my NMR treatment, which I will describe in full detail in my upcoming post “NMR.” To sum it up, the infection made the NMR pads feel like my pad placements were on fire and the stimulation did not travel far from them. So the treatment was concentrated to one area, making it extremely difficult and painful to manage the physical therapy.

A few days into the antibiotics I experienced a high fever, chills, body aches, and a 48-hour migraine. For the first time since being here I flared to a 6/7 pain. That flare, that fire alarm, was designed to warn me of danger. And like an alarm, if my pain could be ignored, it wouldn’t be doing its job. Its sole purpose was to let me know that there was a problem, even if I couldn’t see it. And when my body tells me there’s a problem, it makes sure I listen. I asked Connor to take me to the ER… you can never be too conscious with an underlying chronic pain condition.

I had a terrible experience at the Washington Regional ER. The doctors and staff didn’t know what CRPS was. I was poked by 8 different nurses with no luck. I have heard stories of CRPS spreading to patients’ limbs where they had been jabbed by needles. They told me to drink more water, re-test myself for COVID and the Flu and I would be fine. “Fine” is what we say when we’re trying not to disturb the peace, make anyone uncomfortable, or call attention to an offense or harm. But I wasn’t fine. I knew something was wrong, but they said otherwise. I don’t think I received the care I should have. They let me go without any diagnosis or reassurance. Advocating for yourself at 25, on a hospital bed, at 4 am, when you are sick, tired and in pain, is difficult enough to say the least.

The next morning, I woke up with full body hives after taking my last pill of Bactrim. I wasn’t able to make it to the clinic for two days. I would say that was my lowest point so far. Worry, pressure and criticism. Somehow I spun this narrative that this set back was the end of the world, life or death– I always go to the worst case scenario – I believed I was slowing down my progress and I would never reach remission with all of these roadblocks.

After some investigating and a quick trip to the Urgent Care, we realized I was having an allergic reaction to Bactrim. I couldn’t take prednisone because it’s an immunosuppressant, which can have powerful effects on the body. Only having Benadryl and calamine lotion to rely on, my rash overstayed its welcome and in turn my skin was very sensitive. I was set back further in NMR and taken out of therapies again.

Seven weeks in Scar Tissue Therapy (PZO) was added to my treatment regiment. In PZO Jen uses a machine to find and break up scar tissue in my body with Shockwave therapy, which uses acoustic sound waves to increase blood circulation to the affected area and break down fibrous scar tissue. Because my allodynia (nerve pain due to sensitivity to touch) at that time very low, we started on my left ankle (the source of my initial ankle sprain). Since then, we have worked on my low back, knees and feet. It’s the most painful treatment at Spero, bringing grown men to tears, and professional athletes to the verge of passing out. However, everyone would agree it’s one of the most powerful and effective.

According to Spero, scar tissue may present as an invisible obstacle to healing, as it blocks the normal flow of nerve communication from cell to cell. Scar tissue can cause tightness, limited movement, and sometimes pain, which affects how far stimulation from the ARPWave machine in NMR can travel in your body. We’re trying to build a stronger-mind body connection, which means the more stimulation I feel throughout my body, the better.

I didn’t think about the holidays when I accepted my spot off Spero’s waitlist; I put my pain first. I soon realized it was a tough time to find ourselves in Arkansas, 1,000 miles away from our closest family. That sentiment was felt throughout the clinic. Thankfully, Connor’s parents Anne and Leo visited us for Thanksgiving. It was my first time co-spear-heading Thanksgiving with Connor. It was delicious. There is no unit of measurement that can grasp how thankful I am to the Wilson family. They are the reason I have a chance at remission; they are saving my life.  We cut down our own Christmas tree and decorated it Connor’s grandmother’s needlepoint ornaments and with bird ornaments Connor’s god father bought us after bird sightings during our trip. Our airbnb started to feel like home.

After Thanksgiving Dr. Hannalie analyzed my blood work and performed a standard food sensitivity test make personalized dietary and supplement recommendations regarding specific foods that may be inflammatory to me.

I found out I have a minor intolerance to many of the foods I eat on a daily basis such as chicken, gluten, lactose, white beans, honey, and yogurt – which all increase inflammation in my gut. When you have a food intolerance or food sensitivity, it means your digestive system has a hard time digesting (breaking down) a food. Certain foods prompt the immune system to create internal inflammation. Persistent inflammation eventually leads to symptoms ranging from annoying to somewhat debilitating, including chronic fatigue, frequent or recurrent infections; joint and muscle pain; Insomnia; gastrointestinal diseases, such as acid reflux, constipation and diarrhea; and anxiety and depression.

Since being diagnosed with CRPS, I have done a lot of investigating into my gut and inflammation. I will write a post that summarizes what I have learned, in the hopes of promoting other people suffering from chronic pain to adopt an anti-inflammatory diet.

Happy holidays to you all. Hopefully, I will have more cheerier news about my journey next month. Progress is not linear!

Connor and I have identified the following birds this month: Killdeer, White-throated Sparrow, White-breasted Nuthatch, American Goldfinch, Canada Goose, Great Blue Heron, Dark-eyed Junco, Black Vulture, Turkey Vulture

Our First Month at the Spero Clinic

 

“Someone drowning in six feet of water is just as dead as someone drowning in six inches. Drowning is drowning. You belong here and you deserve treatment just like everyone else.” – Dr. Hannelie at Spero Clinic

 

It rained as we walked into my first day at the Spero Clinic; I think that is good luck. As we sat in the waiting room, I was fighting this feeling that I was an imposter. That I didn’t belong there because I wasn’t in as much pain as the other patients I met. I felt choked up the entire day; I was on the verge of tears for hours. I was so isolated in Los Angeles not knowing anyone with CRPS and now I found myself suddenly surrounded by more CRPS patients than I can count — and I still felt like an outsider. I know that if I were to stop taking my medications I would be in excruciating pain just like everyone else; my pain would manifest itself physically as swelling and redness on my leg so everyone could see it, and I would belong. I voiced this to Dr. Hannelie as she was taking my intake X-rays. She reassured me that even though it didn’t look like I was sick, I was just as deserving of pain relief and a chance to have my life back.

One of the first things they did was perform a Static EMG Scan on my back to identify any disturbances to my motor nervous system (which controls the movement of muscles and overall posture). The scan determines how well my motor nerves are functioning and if they are working symmetrically. A few manifestations of central nervous system dysfunction in CRPS include reduced voluntary motor control and increased motor abnormalities. These can cause weakness and atrophy (muscle shrinkage) in affected areas.

My scan results are displayed below.

Figure 1: Displays what the EMG scan would pick up from a “normal” person.

Figure 2: Displays my EMG scan taken on my first day at the clinic. The colored bars indicate the level of severity of abnormality — white is considered within normal limits, while green is mild, blue is moderate, and red is severe.

Figure 3: Displays my EMG scan data as a percentage imbalance, to either the left or right of my spine. The color coding is the same as Figure Two.

After my first week at the clinic I realized how little my old doctors and I actually knew about CRPS. I had no idea a drop in barometric pressure caused flares. I was under the impression that CRPS wasn’t auto-immune related. I thought CRPS couldn’t spread because it was only localized to a specific limb.

I befriended people in wheelchairs and on feeding tubes who suffered from full body CRPS, which affected everything from the bottom of their feet, to their stomach, spine, and eyeballs. Every treatment up to the Spero clinic had failed to bring them relief: pain medications, ketamine, spinal cord stimulators, physical therapy, you name it. They traveled here from all over the world: Australia, England, Canada, Italy, etc. to seek care by professionals who took their pain seriously and who believed they could reach 100% remission.

Unlike me, very few of the patients I met were on pain medication. I struggled to grasp the idea that I was making any real progress. How could my therapists work with my real pain if my medication masked it so well? What effects were my therapies having if my brain and nervous system were shielded by a fortresss of medication? How would I know being pain-free would stick when I stopped taking them?

Dr. Katinka said to think of my pain like water coming through a hose. My pain medications and previous interventions in Los Angeles were merely putting a kink in the hose — as in the medications were dampening the pain signals going to my brain — but the problem was still building at the spigot. The true goal of my treatment should be to turn the water off. Spero is going to heal my nervous system as a whole by calming down my sympathetic nervous system, which will turn down the pressure of the hose until the hose is shut off and there is no pain coming through.

The Spero Clinic has worked to balance my central nervous system through many modalities, including: manual vagus nerve stimulation, frequency-specific microcurrent, and magnetic resonance therapy. The vagus nerve is a key part of your parasympathetic “rest and digest” nervous system. It influences your breathing, digestive function, and heart rate — all of which can have a huge impact on your health. These therapies, as well as some others which I won’t have on my schedule until next month, work together to produce a balancing effect on the autonomic nervous system, which is often called the “fight or flight” part of your nervous system, resulting in enhanced feelings of relaxation. Some calm the natural inflammatory response of the nervous system and restore the autonomic nervous system to optimum function, while others treat pain by using low-level electrical current.

Detoxing is a key component to the treatment process as well. Electro-lymphatic therapy uses an XP2 electro-sound therapy machine to replicate the motions used in manual lymph drainage massage, but improves the lymphatic flow and accelerates detoxification from interstitial tissue at a speed you can't do by hand. The ionic foot detox bath is a therapy that uses negative ions to cleanse the body of toxins. The ions attach themselves to the toxins and then are flushed out through the feet, which are immersed in a saltwater bath. These footpaths are critical because an alkaline body is crucial to a person’s health. Diseases and bacteria thrive in an acidic environment, so the more alkaline, the more effort your body can devote to healing and recovering from other therapies.

I also started my neuromuscular re-education (NMR) therapy, arguably the most important part of rehabilitation here at Spero. My NMR therapist uses external electrodes, which are plugged into an ARP Wave machine, to apply a current to my body in order to normalize (or “modulate”) tissue function of my nervous system. Passing bioelectric current through the negatively charged cells in my body encourages healing by reducing the amount of scar tissue built up over the last year due to compensation, atrophy, and improper healing. The current allows for full elongation of the muscles, ligaments, and nervous system, and aids in improved range of motion. Stimulating the muscles with an electrical current boosts circulation, which can reduce inflammation — an effective way in controlling pain. I will go into more depth on my progress in NMR in my next blog post.

It was my first National CRPS Awareness Day on November 7th. I didn’t feel that I had much to celebrate. I’m not happy I have this syndrome. I am sick of being tired. I am tired of being sick. It’s taken the last year of my life; it took 20 from some people I care about here. To say it is a huge burden for patient and caregiver would be an understatement. We hold so much anger and grief for the old life we had.

I am grateful to be at the Spero Clinic among other CRPS warriors. It’s a slow and cruel recovery that requires unimaginable strength and even more hope. Without hope and patience we wouldn’t be able to get ourselves out of bed in the morning. Without a positive attitude, we’re getting in our own way to remission. It is crucial to recognize and celebrate the small victories because if we focused on remission it would overwhelm us. I am watching people fight for their lives here. Chronic pain is an extremely lonely condition, but at Spero I am part of a community where I don’t have to explain or convince anyone of my pain. People just get it and that is a huge relief.

I am proud to say that I have regained feeling and some control of my toes on my left foot. I was told I would probably never regain feeling over those toes due to nerve damage, but after just four sessions of NMR, I can! I can say with confidence that my pain hasn’t spiked above a 5 since my first week, and even my evening flares are short lived. I am hovering between zero and two pain level each morning, which makes me hopeful. I’ve also made it to 75 in NMR this month.

Again, thank you for following along on my journey towards remission. I will publish an update with details from my second month at Spero soon.

Connor and I have identified the following birds this month: Northern Cardinal, Downy Woodpecker, Red-breasted Nuthatch, Carolina Chickadee, House Finch, Blue Jay