Symptoms: Akathisia, Brain zaps, Emotional blunting, Sexual dysfunction, Cognitive impairment, Insomnia, Suicidal ideation, Tinnitus, Neuropathy, Muscle/joint pain, Dyskinesia, Myoclonic and dystonic movements loss of leg function
Between my first and second daughters’ births, I was experiencing extreme pain, insomnia and chronic fatigue. 1991, Baby 1 never slept.. hubby worked 100 hours a week as a self-employed phenom. I was likely just tired and had zero clue of how to be a mom because of my own crazy childhood. Postpartum depression??? My GP.. a “family friend” sent me to a rheumatologist and together, they diagnosed me with fibromyalgia and my GP started a 30-year cocktail of benzos and SSRIs etc.
After 10 years of the same symptoms with no real improvement and now sexual dysfunction and counselling through the childhood trauma, I complained several times each year that I thought I was misdiagnosed, wasn’t depressed and wanted off the antidepressants because I didn’t feel like myself and wasn’t having improvement with the pain and fatigue. Cocktails, hospital visits to reset my heart twice because I was improperly weaned from Amitriptyline, and more cocktails for another decade adding new counsellors... my mind was stayed on a poor diagnosis, but my friends and family and doctor began to think it was my mind and not my body that was the problem, and I started to disbelieve myself too.
Tons of family loss and drama fit the dialogue, but I began a long journey as a Christian to tackle it differently and felt I was discerning my situation better, and as I began to receive solid biblical counselling on my traumatic childhood experiences I realized it was not my mind that was the problem. I began to see it was the pharmaceuticals that were making me feel sick. I developed “restless legs” so bad that my legs would throw off 25–30 lb weighted blankets I used to try to hold me still so I could manage 2 hours of sleep... wasn’t restless legs at all... it was a side effect of my cocktails, as I have learned in the last 3 years, and my GP added a trial of a drug to my cocktail used for schizophrenia patients that blew everything apart for me.
Incidentally, this family friend doctor also treated my 2 daughters for depression of various kinds (I don’t believe their diagnoses either). My father struggled with opioids prescribed for pain management from surgeries that added to frequent heart failures and disease, all poorly monitored by his “friend.” My brother.. chronically depressed.. same doctor... I saw the pattern, complained.. COVID happened, I refused vaccination because of all the research I was doing and the distrust I had developed of my own treatments and diagnosis... and they all, my family, one by one, bought into the “she’s crazy” dialogue. Marriage suffered, every relationship suffered, I kept declining, gained 100 lbs from meds only to be told I was now fat and that’s why I was in pain, full of inflammation and now tremors.
Tried cannabis with some success, but with such high doses of THC I lost my ability to drive. The tremors made it too difficult and painful to sit in a vehicle, and so isolated. Tried naturopathic medicines with some success but now experienced debilitating giant dystonic and myoclonic movements and landed in the hospital 2 weeks after I fired my old doctor because I told him I wanted fresh eyes on my diagnosis and wanted to stop all meds. He refused to reassign me except for the medical cannabis, which failed first try with those he referred me to, and they dropped my case. I found my own new doctor. 2024.
My nearly perfect husband in my nearly perfect marriage suffered terribly because my “disease” was now undiagnosed, worse than ever because I was improperly weaned from the benzos, antipsychotics and SSRIs, and the tremors required 24-hour care, hospital stays, a walker, 20 hours a day in bed. I couldn’t even ride in a car, had to lay down in the back seat. 5 neurologists, bad plasma transfusions, suicidal thoughts I would have NEVER entertained, and treating myself with high doses of THC to control a modicum of my symptoms and reading every medical journal I could get my hands on.
I went all organic, dropped 75 pounds, hit the pool with a PSW, and then lifted weights with my best friend, 31 years old, who believed in me... got a functional neurological disorder diagnosis by a phenomenal doctor in London, Ontario (5 neurologists later) and started following UK science he introduced me to.. cognitive behavior therapy... fired my doctor about a year or 1.5 years prior and read and read and believed in myself against all of my family. The diagnosis was solid, the treatments slowly working, triggers identified, but never a causation discussed because that’s not what the Canadian medical system provides.
Abandoned.. completely... my husband dutifully served me as best as he could, but he began with elevated and terribly high blood pressure and symptoms that were not being treated well. That reared its ugly head, and I also have come to believe that his 2 COVID vaccinations (he finally saw their dangers and propaganda) contributed too, and he began to suffer cognitive impairments and personality issues.. added to the stress of the love of his life suffering and him a powerless “fixer” and no help from doctors, friends who believed I was nuts, or menopausal, or high (the goal posts of blame shifted to everything but pharma injury) in his ear, and he died of a massive stroke. I couldn’t drive to his funeral. At about the same time, I had started to make good progress. We made some great gains just weeks and days before his stroke that the family knew nothing of. Just he and I and our therapists and 1 good doctor.. and then he died.. my best friend.
By the grace of God alone and a will power to believe I could be well and believe my own discernment in what God was doing, I am now off every pharmaceutical. I kept reading, charted my prescriptions in AI from 2002 and went back to the neurologist 2 weeks ago with my medical journals, pharmacology and hypothesis that I had been misdiagnosed and poor drug management was the causation for my FND and left brain injury. Still alone.. more alone but a few good friends... only 1 that really stands out... cold turkeyed the cannabis in February.. zero... zero.. zero symptoms and in the best shape I’ve been in since being a highly competitive teenage basketball player... completely healed at 59 years old as a widow... and I blew the neurologist away. He wept. He has invited me to address a study group of 12 patients he is treating on a trial of a more holistic approach to FND in the near future, and while he will not (sadly) write the causation, he verbally agreed I had a solid hypothesis, and he wept for me and it broke my heart.
I have seen a psychologist who agreed I was never depressed or anxious and was wrongfully diagnosed with any mental disorder. I have a high IQ, score incredibly rare in personality tests suggesting high cognitive function and high leadership and relational abilities... My GP is in palliative care. I wish him well and leave him in the hands of my Jesus who saved me 40 years ago, and have forgiven his ignorance and all those who moved the goal posts, misdiagnosed, lost faith with the girl inside me who knew better than they. While I still mourn the loss of my best friend who tried so hard to be the world’s best husband and who lost his way for a hot minute and beat me to Jesus, whom he loved and served so diligently and faithfully.
I PRAY HARD for my 3 beautiful grandchildren to grow up in a better understanding of medicine, real medicine, and that they will someday see me as a trailblazer. I pray my neurologist will take me up on studying the recent research I provided him with from your website and Dr Peterson’s experiences which mirror some of mine.. he would do what Canadian doctors aren’t permitted to, and I am praying he will be true to the scientific curiosity that led to my recovery too and trailblaze a new path. Thank you for your and your family’s courage and faith and tenacity. I am praying for your father. A hero to Jeff and I for different reasons. In it together. If my story can bring help, share it, vet it. I am an open book and loneliness is a killer.. you, Reader, are NOT alone. God bless you and keep you and make you a trailblazer.