How I Bounced Back After One Jaw-Dropping Week Changed Everything
How one brutal week upended my care team—and launched a turning point in my pain journey
In one week’s time, I lost my therapist, my physical therapist and nearly got booted from pain management. My pain was worse than ever. And with each kick in the figurative gut, my literal pain escalated.
Welcome to my world, as I share a little of what I did to deserve this (nothing!) and, more importantly, how I used these unfortunate situations to turn my pain around. (Take note, as this pain hasn’t taken a turn for the last three years!)
Let’s take a step back.
I have a chronic pain issue that hit an even more major flare-up 3 1/2 months ago. I’ve been living with 10/10 pain daily. Not all day long, but it hits 10/10 at some point during the day. Usually once the 10/10 pain is triggered, it is there for the day or at least until I lay down in bed for a few hours to give it a break.
This.
Is.
My.
Life.
Dodging the pain, acknowledging the pain, accepting the pain. It pretty much sucks, but I have to find a way to live with it day to day.
I’ve done my homework. I’ve read the books. I’ve seen all the doctors. I travelled to Rochester, Minnesota, to go to the world-renowned Mayo Clinic for answers.
Three and a half months ago, I had a follow-up video visit with my case manager doctor at Mayo, who said, “This must be a flare-up”. This flare-up never flared back down.
Therapy of the Mind
Mayo recommended Cognitive Behavioral Therapy (CBT). Another reputable source recommended Eye Movement Desensitization and Reprocessing (EMDR) and Pain Reprocessing (PRT) therapies. I looked for a therapist who can do all three. Turns out that was a tall order, so I shot for as close as I could get and found someone.
She coached me through different therapies. I uncovered some well-buried traumas from my past and was reminded of some more blatant ones.
She helped me understand why the simple act of getting in bed could result in 10/10 pain, when starting at 0/10 before getting into bed.
Former trauma victims do not enjoy time alone in their own heads. Even though I was getting into bed with my husband, the act of going to sleep is a solo act. Alone time in our heads, for trauma victims, means time to get anxious.
Even if a trauma victim does not remember what happened, or even that something happened, the body remembers. And this surfaces in the mind in the form of anxiety.
In my conscious mind, I have no qualms about my bed. I love my bed and I love my husband who sleeps next to me in my bed. Again, it’s my unconscious mind that knows about the past that connects with my body.
Tricking My Mind
As a result of this newfound knowledge, I took new actions to see if I could convince my unconscious mind that I do feel safe now:
Establish a regular bedtime. I was not always good about this in the past. Another symptom, I found out, of trauma victims. We tend to avoid going to bed for the reasons mentioned above.
I love reading and I love reading in bed. I try to get into bed earlier than my husband and the dogs so I can relax with a good book before lights out.
I got a cozy blanket for myself for my side of the bed. My husband has no interest in a blanket on the bed, outside of our comforter, let alone a “cozy” one. This is a win-win for me. I get the cozy blankie all to myself. The blanket is another way that I’m taking care of myself in a space that I want to feel safe, both consciously and unconsciously.
These techniques seem to help with both the nighttime routine and with pain getting into bed. Sometimes, my mind refuses to be tricked however. For example, let’s say I get a good head start into bed, by 45 minutes or so. By the time my husband and the dogs come up, I’m ready for one last trip to the bathroom before falling asleep. Lo and behold, I’m getting back into bed and there she is again. My not-so-friend friend, the pain.
All in all, I think I made some significant progress with this therapist. But at a certain point, it felt like our opportunity for progress ran out. Last week, we decided to pause our work together due to lack of opportunities to progress.
While I felt sad about this and wondered if there was more I could uncover with someone else, I did not see value in continuing to meet with this therapist. She did promise to send some names of other therapists that may be helpful for a second set of eyes on my situation.
Physical Therapy
I started seeing my pelvic floor physical therapist in January with weekly visits and corresponding weekly homework assignments from her.
Her therapies include manual treatment, stretches, red light, dry needling and only once I have the capacity, strength training. She is an immense proponent of red light therapy, which I’m still on the fence about. I want red light to be a solution and it’s a such a straightforward treatment. Just lie there and let the red lights do their thing.
The red light claim is that they use low-wavelength red and near-infrared light to enhance the mitochondria and produce ATP, repairing damaged cells and ultimately reducing pain. This process takes me back to chemistry, which was my worst class in high school! But now I want to understand it better.
All that said, using the red light once a week at PT sessions is insufficient for it to be effective. She has been encouraging me for a few months to find a low-cost red light solution for home use.
Red light sauna — sign me up!
I experimented first with a franchise chain that opened nearby. I was so excited to try this. I already pictured myself showing up twice a week at my private sauna studio.
My visit to the sauna studio was a letdown at best. I quickly realize that the one strip of red light from the ceiling will not meet my PT’s specific requirement: the light should be as close to your skin as possible. Sadly, I realize the studio sauna lighting is not satisfactory.
I’ve heard some gyms have tanning beds with red lights. I did not check them out. At this point, I realized that with a frequency requirement of daily, I needed to purchase an at-home solution.
As soon as I realized my PT was cutting me off from her services, I kicked it into high gear, deciding it was time. (Not sure why I couldn’t get to this point sooner, but grateful I finally did.)
My personal red light solution
I found a mat on Amazon that I like; it meets the minimum wavelength requirements of my PT (660-680 nm) and bonus, it was discounted to about $125. Of course, at this point, the hamster wheel was queued up to figure out why it was so cheap. Eventually, I decided that for $125, I could take the gamble (and knowing that Amazon’s return policy is pretty generous), it arrived the next day. I’ve used it every day since, which is about 2 weeks at this point.
If you’re still learning about red light therapy, please see more about it here.
If you’ve tried red light, let me know what you think.
Bye-bye physical therapy, for now
In addition to the daily red light, my PT sent me packing with a rigid daily regimen striving for recovery.
I am fully aware that the reason she needed to discharge me is insurance-related. The insurance company needs to see more progress over a period of time.
On the last day I was in the office with her, I convinced her to set up future appointments with me where we’ll open a new case. In October, assuming PT still feels like a useful tool, I have another series of 15 appointments set up to restart this therapy option.
In the meantime, my new red light mat and I will spend some quality time together.
Pain Management or Bust
I had a new medication I wanted to try (an idea my dermatologist recommended), which is an off-label use for the med. I researched and investigated this med, and the concept was endorsed by all my regular care team that I discussed it with.
My dermatologist would not, however, prescribe the med. He said go to Pain Management.
My neurologist would not prescribe the med. He said to go to Pain Management.
My primary care doctor would not prescribe the med. She said go to Pain Management.
Mayo also wanted me to go to Pain Management, for both the med and if I wanted to continue with nerve blocks.
I couldn’t hear the message any louder. Get to Pain Management.
Just like with meds, I always investigate doctors thoroughly before selecting who I will entrust with my care. With my neurologist’s referral, I researched the two doctors he recommended. They both had glowing reviews. And not just their 4.8 and 4.9 ratings (5-point scale), but the comments supported the encouraging nature of the doctors. Between the two, I picked the one whose comments I liked best. The most resonating review read,
He told me my pain was not in my head.
I got in to see him faster than expected. Even though his medical office is 30 minutes from my house, I enjoyed the drive, anticipating that this was the guy who was going to take my healing journey to the next level. I listened to my favorite Spotify playlist on the way there.
My excitement was squashed as quick as a mosquito on my ankle on a humid summer night as soon as the doctor walked into the room.
Doctor: We’re a spine center. (The word “spine” called out in a James Earl Jones slow and bellowing-like sound. The implication was —- why are you here).
Doctor: Again, we’re a spine center. And he said it a third time before he asked
Doctor: How can I help you?
His whole thing caught me off guard. I became distraught after this gigantic build-up that he was going to be my guy. I started crying. He ignored the fact that I was crying and continued with business. (Part of me appreciated not having to talk about the fact that I was crying. So this part was not so bad.)
I worked through my tears and was able to focus on the needs of being there. Eventually, we got around to medications and he agreed to own the script for the existing med I’ve been taking for the pain. More importantly, he was also willing to prescribe the off-label use of a med after he looked it up and understood the premise.
At last… a partial solution
Amazingly, after cycling through all the doctors who did not want to prescribe this med, now that I could try it, I knew the first day I took it that it was doing something for me. The med’s relief was noticeable.
By no means was the pain gone, and I still get 10/10 pain on most days, but I now have periods during the day with less to no pain where I can get things done. This med was doing more for me than any other treatment, except for the nerve block. It was tied with the nerve block.
Unfortunately, like the nerve block, this med has an unacceptable side effect. I have another med I can flex the use of, and with that, I am currently managing this side effect. It requires careful attention and is administered 3 to 4 times a day, making it a closely monitored treatment.
With the doctor’s inappropriate bedside manner, I had half a mind to kick him to the curb. However, in the short term, I needed him, so I played nice.
Could all these events really have occurred within a week? With each event throwing something different at me, my resilience got stronger. It was like a rubber band getting pulled back so far you wonder if it’s going to break. But then it releases and you see it bounce back. Just call me… rubber band.
I am grateful to recognize the synchronicity of these events. Both my therapist and physical therapy seem to follow a natural progression, which coincidentally happened the same week. And the big news, fortunately, I was able to get a medication that is helping with the pain.
Something is helping with the pain. And I’m taking this med because I persisted. I did not take no for an answer. I continued to pursue it until I got what I wanted. The rubber band has spoken.
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So very true