Patient & Physican Feedback
My Chronic Pain Journey — Harvey
My name is Harvey, and I’ve been dealing with intractable, constant pain for over 25 years.
I’ve had more misdiagnoses than proper diagnoses. The diagnosis I was first given didn’t “fit” with my most challenging symptoms. My condition involves structural issues of the head and neck (complicated by nerve involvement), possible intracranial hypotension, cerebral spinal fluid leaks, and craniocervical instability.
This all started with a one-story fall that caused two concussions, followed by a sporting injury about a year and a half later. I have pain while sitting or standing upright that recedes when I lie down, pains in my head and neck, and peripheral nerve pain in my lower arms and hands. I also deal with vision and balance issues, brain fog, and tinnitus, which I have been dealing with for 26 years.
I divide my life into three pieces. Life #1 was normal until the chronic pain started in 1994. Life #2 was fighting to survive, pretending to be normal, not whining about it, whining about it anyway, and trying to be all that was expected of me; this eventually left me broke, broken, and couch-bound. Life #3 started in 2006 when I finally found a naturopathic procedure that helped. For the last 14 years, I've been recovering from the first 12. Even though I still have constant pain, it's not nearly as crippling as the first 12 years. Those years were debilitating.
What was life like before you received a proper diagnosis?
Since I couldn't get a proper diagnosis and I couldn't work sitting or standing anymore, I got little understanding. I was in terrible pain. I couldn't sleep at all. I would sleep for a few minutes from exhaustion but I didn’t get a full night’s sleep. I couldn't get a diagnosis that made sense, I couldn’t get disability, and I couldn't work effectively with that level of pain. I couldn't sit, I couldn't stand, I couldn't sleep, and I couldn't explain it to anyone. People would get annoyed when I tried.
I lost my career as a software developer and since I couldn’t get disability, I found jobs that paid little and “put up with me” for my computer knowledge. I’ve begun a slow comeback in programming and found music to be my power source for recovery. It’s easier for me to stand than sit, so I perform as a local musician.
Since I discovered my pain is due to CSF leaks, I started programming from a lying-down position with a laptop mount over my head. It's not perfect, but I am three-to-four times more productive than when I tried to program while upright. It's a game changer.
I met a girl just before this pain started. She stuck with me a long time, and we had a son together. My pain tore us apart, but we're still the best of friends.
How is life now?
I have new confidence about what my condition is and that a proper diagnosis and treatment are possible. I limp along making the bare minimum or less, especially in the days of COVID-19. I was alone with these symptoms for 24 years, but now I know dozens of others with the same condition (although it presents in widely varying ways). This is a much better place to be.
What advice would you give to someone just starting their journey with chronic pain?
The pain you are experiencing is real. There is a treatment for it. Someone will understand. Don't let anyone tell you that you are imagining it. Stay confident; you are right!
How has the PainScale app been helpful in dealing with your chronic pain?
I really appreciate PainScale’s efforts. Many varieties of pain and invisible disabilities exist, and only by combining efforts will things improve for people with chronic pain. Technically, PainScale is “the bomb,” and as a software developer, I recognize a well-created app and website.