Recovery MlleButtercup's recovery story- 24 years chronic pain and fibromyalgia

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MlleButtercup

Administrator
Staff member
The backstory

Although my chronic pain story starts in 1996, there were premonitions of what was to come for several years prior to the summer when the pain came and stayed. I have always been an anxious, sensitive person. As a child, I was cautious and fearful. Family photos document that I hid under blankets when my mom vacuumed, cowered when the windshield wipers were turned on, bit my nails to the quick, and slept with the lights on. According to my baby book, my first phrase was “Afraid of it!”. I believe I was born with a hyper-vigilant mind and that circumstance, combined with a strict, religious upbringing that emphasized perfection and magnified guilt, wired the neural circuits in my brain in such as way that I would later become susceptible to chronic pain. As I look back on my life, there were plenty of events like mysterious fainting spells, back spasms, anxiety attacks, and chronic insomnia during my teens and young adult years that can now be identified as stress-related precursors to neuroplastic pain.


The beginning

In 1996, I started experiencing pain in my ears. It felt like someone was drilling holes in the sides of my head. My doctor, prescribed some anti-inflammatories and advised me to take better care of myself. He also sent me for an x-ray, just to be cautious. The radiologist who initially read my x-ray was alarmed. I have what appeared to be a congenital fusion at C5-C6 and he thought that this anomaly was the source of my inner ear pain. I was sent to a neurologist where I received my first pain diagnosis: radiculopathy (compressed nerve pain). I view this as my first experience with what I now call medical traumatization. According to the doctors who were treating me at the time, there was something seriously wrong with my neck. I was given a list of things to avoid doing. I was told that additional trauma to my neck could result in paralysis. I felt overwhelmed and afraid.

Fast forward to the following summer. I was boating with my dad near my parents’ home in Houston, Texas when my neck started to hurt a little bit. I was enjoying a lovely day on the lake, so I ignored the sensation until the pain became so severe that I was unable to turn my head. I was still immobile the next day, so I went to an Urgent Care where I was referred to a pain specialist. The following morning, I got my first cervical epidural steroidal injection (CESI). I felt better within hours and was able to make the 2 day drive home pain-free. Unfortunately, the relief was only temporary.

I soon started suffering from a variety of painful conditions that came and went. I had migraine headaches for about three years, extremely dry eyes, shoulder spasms that pulled my left shoulder up almost two inches higher than my right, irregular heartbeat, back and neck pain, numbness in my left arm and hand, sciatica, knee pain, and a weak left ankle that I sprained severely at least twice a year. My left shoulder and hip started popping out of joint. I received several diagnoses, some terrifying, some vague. I was prescribed and tried several medications. I received CESI injections, trigger point injections and endured multiple painful tests. I tried traditional Chinese medicine, and consulted herbalists, nutritionists, massage therapists, homeopaths and naturopaths. I experimented with non-traditional treatments like the Guaifenesin Protocol. I sought out all kinds of specialists, did physical therapy, and got osteopathic adjustments. I had my gallbladder removed. It was exhausting and discouraging. No matter what I tried, my pain was getting progressively worse and my ability to cope was declining. To make things worse, because of my highly conscientious and perfectionist personality, I felt as if I needed to maintain a front of normalcy in my personal and professional lives. Only the people closest to me knew how much I was suffering. I felt isolated in my pain and very alone.

In April 2019, I made a momentous decision; I would take a medical leave of absence from work to try one last time to get well. I couldn’t keep the pretense that I was managing. I was no longer able to sit in a chair to work. I was laying on my stomach on my students’ desks after school to grade papers and plan lessons. I wasn’t sleeping well. When I got home, I would head straight to the medicine cabinet and then sit in a hot bath for an hour so I could relieve the pain enough to make dinner. After eating, I took more pills and went straight to bed. Every day took on a sameness. It was all about enduring. My life was tedious. I was miserable. I felt like the window of opportunity to get better was also getting smaller. It was obvious that I was too dependent on medication and that it was only amount of time before I was going to be disabled.


How I recovered

While I was having my epiphany, my husband was starting a new work project focused on treating chronic pain. His team began looking at recent studies and researching successful pain clinics and treatments. In May, though my own research, I found Curable and listened to the education modules about how pain was generated in the brain. I was skeptical but curious. In the meantime, during the early stages of his team’s chronic pain investigation, my husband visited a functional rehabilitation clinic in Dallas, Texas that had an excellent record of helping people recover from chronic pain conditions that develop after an injury. I enrolled in the program and moved to Texas for 10 weeks. It was a transformative experience. I learned not to be afraid of movement. I also learned about the role of stress and emotions in chronic pain. I was taught how pain is generated in the brain and how chronic pain is different from acute pain. I was trained how to use breathing to calm my autonomous nervous system. I became confident in my physical body again and I felt strong for the first time in 20 years. The doctor who supervised my case was a retired orthopedic surgeon and he taught me that although my cervical spine looked terrifying on an MRI, the anomaly at C5-C6 was not the cause of my chronic pain and why. He also started tapering my medications. I was still in discomfort, but I got my mojo back and gained confidence to continue pushing forward with my recovery.

Mid-October, when I got home from Texas, my husband gave me a copy of Dr. Howard Schubiner’s Unlearn Your Pain. As I read and worked through the exercises in the book, I started feeling less discomfort. In November, I traveled to a training with my husband his team where Dr. Schubiner used me and my medical history to demonstrate how to diagnose neuroplastic pain. That experience gave me more evidence and solidified my belief in what I already suspected to be true; I had brain generated pain.

I made excellent progress in the first weeks using Unlearn Your Pain, but stalled at about 60% improvement. I was elated with my success but frustrated that I was still having issues with pain increasing as the day progressed and waking up in pain during the night. In April 2020 I started researching Alan Gordon’s work on the TMS wiki and tried some of his suggestions. I found his approach easy to understand and implement. I believed in the process. It made sense. I decided to start working with a PRT therapist from the Pain Psychology Center. She taught me how to adapt pain reprocessing therapy to fit my individual needs. She showed me how to be more effective at somatic tracking and helped me figure out some of the reasons why I have chronic pain in the first place. She gave me confidence to set healthy boundaries with family, friends and work colleagues. She encouraged me to rediscover what makes me happy and to focus on reintroducing joy into my life. Not surprisingly, I started progressing again and am currently about 90% recovered!

Now that I am mostly pain-free, I feel optimistic about life in general and am living abundantly again. My twenty-four year chronic pain journey is finally ending. I am excited about my future and looking forward to an active and enjoyable retirement.
 
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kim2021

New member
Yes, thank you for sharing your story. It gives hope that even after suffering for years, recovery is possible.
Some of the things you said resonate with me, especially “I have always been an anxious, sensitive person.” Me too, for as long as I can remember.
 

Forest

Administrator
Staff member
Thanks for posting, Mlle B!

If I may ask a follow-up question, what do you think helped the most in your recovery? Relatedly, do you have any tips for people working through their own recoveries?
 

MlleButtercup

Administrator
Staff member
Thanks for posting, Mlle B!

If I may ask a follow-up question, what do you think helped the most in your recovery? Relatedly, do you have any tips for people working through their own recoveries?
The is the most commonly asked question I get when I share my story. It's a bit hard to pinpoint exactly what helped the most. I can share a few things that I think were essential for my recovery and maintenance.

1. I move my body at least 5 days a week. The endorphins I get from gentle exercise keep me feeling strong and energized.
2. I spend time every day grounded and in the present. I especially enjoy leaning into sensations and my favorite practice is opening my senses one at a time to the world around me. Staying in the present moment is especially important for my brain training because I tend to worry and ruminate. Both worry and rumination are problematic for chronic pain.
3. I try to experience a joy every single day. When I first started this journey I didn't know myself well enough to identify and articulate what really made me happy. One of the best parts of my healing has been becoming more knowledgeable about myself.
4. I set healthy boundaries for the first time in my life. I'm a pleaser and I let people take advantage of me because of my inability to say "no" and my unwillingness to stand up for myself. Learning that my feelings matter and that it's ok to say what I want and need has been extremely important.
 

MlleButtercup

Administrator
Staff member
Yes, thank you for sharing your story. It gives hope that even after suffering for years, recovery is possible.
Some of the things you said resonate with me, especially “I have always been an anxious, sensitive person.” Me too, for as long as I can remember.
You are welcome! I think sensitivity is a superpower!
 

vedra

New member
Your story certainly gives me hope. Thank you. I've found the curable app helpful and Howard Schubiner's book but have just hit a wall. Trying to wean myself from tramodol (down to 1 per day) I go for a few days without and then anxiety, pain, panic return and I don't know what to do. Did you find it better to keep on with painkillers and work through the programme or did you do it without medication? I know no two experiences are the same but I need to feel that I'm talking about it to someone who understands as bottling it all up and pretending I'n not in pain is probably adding to the stress.
 

MlleButtercup

Administrator
Staff member
You are asking a really good question. I weaned off the last of my meds after I started feeling better. It takes time. It’s important to maintain a feeling of safety throughout the process. Honestly, for me, going off meds was scary. So I went really slowly, especially with the opioids. The last thing you want to do is put your brain into worry, catastrophic thinking mode.

Please don’t let prevailing attitudes about opioids make you feel bad or shamed or that you need to rush. I really dislike how chronic pain patients are made to feel bad about themselves because they took the medications their trusted physicians prescribed for them.
You do what works best for you. You will eventually get to a place where you feel safe enough and in control enough to do without the meds. Tramadol is particularly hard because it has an SSRI component as well. So very slow taper with this one. It’s ok either way.
 

vedra

New member
Thank you. I was so glad to read what you wrote and that it corresponded to my gut feelings. As you say we are made to feel bad about ourselves because we 'took the medications trusted physicians prescribed'. I received a warning letter from the health board, uk, (a standard handout) with dire warnings of dependency, likely escalation and possible addiction and yet my doctor still gives me a prescription. My fear also is that this will be discontinued and my stockpile is dwindling. This makes me feel worse. Do you think 50mg per day, 100 on abad day is excessive? This follows a pattern which has been going on for mor that 15 years, with months of not needing anything at varying times of year. I'm 78 now, still very active, sea swimming, jogging and walking, so feel that 1 per day until I die is not a long term prospect! You don't need to reply, I just need to write this down and imagine someone is reading it and understands. Best wishes.
 
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