Company’s calling - a guest discusses living with pain
Each Monday, I’ll be featuring someone who is living with or has lived with pain. I hope that their stories will help others find hope and, maybe, learn from each other. If you have a story to share, please email me and we can talk about it.
Our first guest is GT from Guelph, Ontario, Canada.
Can you tell me about when you first started experiencing the pain and what kind of pain it was?
I started to have excruciating neck and head pain a few years ago after an attack of ADEM. Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath.
Did you seek help right away?
I went for acupuncture the morning of the attack. I thought that I had an inner ear infection causing me to have the headache, balance disorder, dizziness that started the day before. The acupuncturist was a Western trained doctor from China. She privately spoke to my husband and thought perhaps I was having a stroke. My husband then got me immediate medical care first with a doctor on call at my GP’s office then later with a neurologist.
What did the doctors tell you when you did seek help?
I was told that either I had ADEM (never heard of it or knew what it meant) or an aggressive attack of MS [multiple sclerosis]. The residuals of the EM set in about two years later. My comments here refer to the fallout from the ADEM re head and neck pain. I have as a result of the ADEM developed osteoarthritis, fibromyalgia, and acquired brain injury.
What have you tried to help you with your pain?
Regular off the counter pain medication Tylenol, Advil, at one time narcotics, regular acupuncture, heat, physio, Chinese herbs, vitamin supplements, hot tub, swimming, other prescription meds, and relaxation tapes.
Can you tell me a bit about what worked and what didn’t
Because of the brain injury caused by the ADEM many things worked for awhile but it is the acupuncture that consistently helps. I go bi weekly now for treatment.
How does having this pain affect you in terms of how you live your life?
I live my life to the best of my ability constantly adjusting or trying new things or ways of dealing with the pain. I get exhausted very easily dealing with it more on some days than others. I need a rest every day. I cannot work. I am waiting to start a course in Mindfulness Cognitive Therapy. My neurologist has also prescribed a new drug Lyrica™ that might help. But it is very expensive and my drug plan so far will not cover it.
What would you say to someone in a similar situation who is just starting to try to find treatment and relief?
Try everything…what works for one may not work for another. Do not close the door on trying new things. Some people find massage helpful, aromatherapy works as well.
Thank you GT for sharing your story. I had never heard of ADEM either and had to look it up to gain a better understanding. We often think of chronic pain being the result of ordinary issues, such as back injuries, or migraines; hearing your story helps us realize that there is a lot more that we don’t know yet.
Tags: acquired-brain-injury, acute-disseminated-encephalomyelitis, ADEM, Autoimmune disorders (fibro, CFS, etc), damage-to-the-myelin-sheath, excruciating-neck-and-head-pain, inflammation-of-the-brain-and-spinal-cord, living-with-pain, lyrica, mindfulness-cognitive-therapy, OsteoarthritisRelated Stories
POSTED IN: Chronic Pain, Company's Calling, Neuro, Pain Management
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