By: Vickie Kean

I hope this isn’t too long but I wanted folks to hear my story in hopes that it might save someone from having to jump through all the hoops I have over the years…just to get an accurate diagnosis. I was just diagnosed with Fibromyalgia in February 2024. I have suffered from chronic pain since 2003. That first began with Carpal and Cubital Tunnel Syndrome. Then in 2007, I tripped on a settled sidewalk falling forward, and unable to catch myself I literally bounced my chin off the concrete. It resulted in just a few stitches in my chin and crushed two teeth… and 21 years of pain and counting.

A DAY IN MY LIFE
When I get up in the morning, I can barely move, every joint in my body aches, even my fingers. I have what feels like a thousand needles poking in the left side of my head. The pain begins above my left eye and radiates around the left side of my head to the base of my neck often accompanied by an extreme heat sensation. It extends behind my ear and at times causes such a sharp, electric shock-like pain in my ear that it causes me to physically flinch. The severity of this “headache” as some doctors call it, rarely changes always at least 8-9. I have chronic neck and shoulder pain felt over the entire left shoulder down my arm, under my armpit, and down to the front of my chest. It is a prolonged, sore, aching, throbbing, burning, and sometimes unbearable pain. My hips and knees ache and don’t always want to work right. This pain is constant; it’s exhausting, nagging and unrelenting. You feel imprisoned and frustrated. Grief is real, and when you have enough energy…you cry. This is repeated each and every day. The guilt is sometimes overwhelming; you feel like such a burden in life, like a failure that you aren’t able to deal with this pain. Your week’s allotment of energy can be used up in a single morning so you’re sure to make every moment count.

This pain affects every aspect of my life, my sleep, my work, my social life, my ability to concentrate more and more, and even my intimate relationship with my husband. I don’t get much sleep, maybe 3-4 hours of interrupted sleep on a good night. I am often forced to sit up on the couch to try and sleep as it is painful to lie down. It’s like a vicious cycle…you hurt so you can’t sleep then it’s more difficult to fight the pain the next day because you haven’t gotten the sleep you need…Repeat. I am so fortunate to have an amazing and patient husband that on days that I’m barely able to make it off the couch, he brings me what I need, he does the grocery shopping, cooks meals, and is understanding when I am unable to lay next to him in bed. He purchased a hot tub for me, purchased a massage table, and learned to give massages. Always without a single complaint, he is my rock! On a good day, I wake up with pain that most people would stay home from work, but I must push on. I must maintain some normalcy in my life to realize I am living.

Often despite the pain, I look fine and happy on the outside, but I’m counting down the minutes till I can go home and crawl into bed and just not have to pretend anymore.

I sometimes wish people knew what a feat it was for me to even show up for work on some days. That they would understand what an accomplishment it was for me to get through an entire workday, then a workweek, even when I felt like taking those days just five minutes at a time. I don’t know what it’s like not to be in pain, to have refreshing, unbroken sleep. I have not had a pain-free day for 21 years. It’s amazing how well one can fake feeling OK for the benefit of others.

DIAGNOSIS/TREATMENTS
For the first five years of my chronic pain, doctors couldn’t find a real cause for the pain, well maybe it could be this or maybe it could be that, and when my pain did not react positively to whatever treatment they tried…I was made to feel like I was imagining the pain. Doctors tell you… “Oh, that’s normal,” and you listen to them. This “in-between” stage of trying to figure out what is wrong with you is torture — all the tests and procedures and blood work. You feel like a scientific experiment. You know as soon as you find out what’s wrong with you that the relief of an actual answer will be like the entire world lifted off your shoulders. It’s not all in your head; you’re not exaggerating everything you’ve been feeling. I have a long list of diagnoses related to my chronic pain…Occipital Neuralgia, Cervicogenic Headache, Cervical Facet Arthropathy, Spinal Arthritis, Myofascial Pain Syndrome, Cervical Radiculopathy, Post Concussion Syndrome, Complex Regional Pain Syndrome, and the list goes on.

I have an even longer list of treatments, EMG, MRIs, Steroid Injections base of scull, Occipital Nerve Block Injections, Electric Stem Shock, Myofacial Release, Radiofrequency Ablation, Dry Needle Trigger Point Injections, Lidocain Infusion, PT/OT, Chiropratic Treatments, Acupuncture, Magnetic Therapy, Salt Cave Therapy, High Intensity Lasar Treatments, massage and much more. Unfortunately, many of these treatments are not covered by insurance and we have spent thousands of dollars in search of pain relief. The medications tried are endless and of course, with each new drug comes side effects, Amitriptyline, Prednisone, Ultram, Baclofen, Flexerill, Elavil, Tramadol, Celebrex, Gabapentin, Indomethacin, Topamax, and Butrans Opioid Pain Patch to name a few.

THE ADDICTION
Until 2018 I was on a Butrans Pain Patch, which is a long-acting, extended-release opioid pain medicine. I was on 20 mcg/hr, which meant this patch was pumping 20 micrograms of opioids into my body every hour, of every day. I trusted the doctors and faithfully put this patch on every week without question but continued in pain. I was originally prescribed the Butrans by a pain specialist and then by my General practitioner, I was on this dose for 8 years. In 2018, after allowing my General practitioner to prescribe the medication for four years the insurance company decided they would not approve it unless a pain doctor or oncologist prescribed the medication. Upon entering the pain clinic I was immediately required to take a drug test. You see people with chronic pain are often assumed to be addicts until proven different. After reviewing my x-rays the doctor decided I had severe arthritis on my spine and Cervicogenic Headache, Cervical Facet Syndrome, Cervical Facet Arthropathy. He decided that the Butrans was not the correct treatment for me and chose to abruptly discontinue this opioid that I had been on for 8 years, stating that since it had been a week since I had a patch…”I had been through the worst part”. He couldn’t have been more wrong, you see this medication stays in your system for about a week after the patch is removed, so I had not even begun to go through withdrawal.

The first five days I was curled up with shakes, nausea, hot/cold sweats, and a huge pit in my stomach that felt like someone had punched me. I couldn’t eat, couldn’t sleep, and cried all the time. I emailed the pain doctor and shared what I was going through and his response was…” monitor, if it gets worse go into ER”. On top of the withdrawal symptoms, the pain was no better from the injection he had given me in the base of my skull. By the sixth day, I was able to muster enough energy to get a shower and change my clothes. For the next several days I continued to battle with nausea and weakness and I tired very quickly. I still had that pit in my stomach and my system would only tolerate very small amounts of soup and crackers. But once again, as many chronic pain sufferers must do, I had to push on. I knew I had to keep going or I could sink into a very dark place and lose everything…my family, my business, my career….everything. I got through this horrible period with no assistance from the one person I was supposed to trust when it came to my health…my pain specialist.

After experiencing such horrible withdrawal, I got on the Butrans website to find out why my doctor left me alone during my most needy time, had I reacted differently than others on this medication? The answer is NO. According to the physician’s prescribing information, my current Pain Specialist should never have stopped the medication abruptly. The instructions clearly state, that “when the patient no longer requires therapy with BUTRANS, use a gradual downward titration of the dose every 7 days, while monitoring carefully for signs and symptoms of withdrawal. If the patient develops these signs or symptoms, consider the introduction of an appropriate immediate-release opioid medication.”

There were four lower dose patches that he could have gradually taken me off of this Opioid that I was on for 8 years, but instead, he chose to let me suffer, even after I emailed him.

Don’t get me wrong, I absolutely bear some responsibility here. I didn’t even realize the patch was an Opiod, I just wanted pain relief. I should have done my homework; I should have researched the drug and its long-term effects. I did not and for that, I will forever be sorry. I’m glad I’m off of it and I hope to NEVER take another Opioid medication, but it was not necessary to make me suffer alone the way this doctor did. I am no longer that passive patient; I ask questions, demand answers, and do my research. We all need to trust our doctors, but trust is especially important for someone who has chronic pain. You have to believe your doctor knows what he is doing as there is so much room for abuse. You’re in such pain you are willing to do or take whatever they recommend in search of some pain relief. I have gone to other “pain clinics” even renowned ones but they have had little to offer me, it seems if you don’t fall within their narrow descriptions or respond the way they think you should to treatment they are simply at a loss. I even had one “pain specialist” throw his arms up and tell me “I got nothing except PT for you”.

Because I have learned coping mechanisms to deal with my pain over the past 21 years (sometimes just crying it out in the bathroom), doctors often imply the pain must not be as severe as I say it is and they minimize the effects it has on my life. Not understanding how much energy, courage, and strength it takes to simply get out of bed each day and say, No, I will not let this pain take over my life.

WHERE I AM NOW
I went back to my General Practitioner, whom I trust immensely and he discussed with me the positive results some of his patients have had with Medical Cannabis (MC) and we decided that would be our next step. I have been utilizing MC, primarily edibles, for the past four years. I have a chocolate bar or coffee sweetener that is 10 mg, gummies that are 5 mg, and sweet tarts that are 2 mg, and utilize these edibles as needed to address the level of pain I am having. This has not stopped the pain but has dulled it to the point that I can function more and enjoy life more.

I continue to have breakthrough pain at times that put me right back to the beginning…crying, sleeping sitting up, little sleep, and being unable to participate in day-to-day life. In addition, in November 2021 I began having new pain. This started in the backs of my legs and went all the way to my buttocks. At times it is intense and makes it difficult for me to stand initially after sitting for more than 30 minutes. I also began having joint pain in my elbows, wrists, fingers, hips, knees, and even my toes at times ache to the bone. I struggle to get up from a sitting position if I have sat longer than 30 minutes. Long car rides are extremely difficult.
My doctor listens to me and believes me. When my pain started to spread she quickly turned over all those stones that others missed to rule out autoimmune diseases and consulted with a rheumatologist…they agreed that I have Fibromyalgia. Initially, I just kind of shrugged my shoulders and told myself ok we have another diagnosis. But when I researched FM…I began to cry uncontrollably, it was like the words describing FM jumped off the page. That’s me! It described my pain and stiffness, fatigue, sleeping challenges, problems with concentration, memory loss, and why I am sometimes so emotional. I cried both from relief knowing we finally figured out what was causing my pain and because I’m sad that I have Fibromyalgia.

Chronic pain has forced me to see the world differently. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. One learns to cope with the pain they are in for if you do not you will become nothing more than your pain. You adapt your life in hopes of keeping your life as normal as possible, but you still miss out on so much. You persevere. You are NOT your pain. Your pain does not define you…but you continue to be in pain. You don’t want to burden or upset your loved ones so when you just can’t stand it anymore you go to the bathroom and cry silently so as to not let anyone know you just can’t stand the pain anymore.

I have just begun the journey of finding what dosage of Lyrica might be helpful for me but it is such a relief knowing that my doctor understands and is working with me to address my pain. I will soon be 64 years old and I have to be able to cope with this pain as I age. I will be discussing additional options for me such as cognitive behavior therapy.

What gets me through it? Prayer, support from my husband, hot tub, massage, deep breathing, ice/heat, positive self-talk, and more prayer.

I hope to come back here soon and report more positive news. Stay strong, my friends we are in this together.

Thank you for reading my story.