As part of an ongoing series, I am interviewing people with chronic illnesses and telling their stories. Today’s interview is with Fiore, who deals with a multitude of health problems.
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What is your first name?
What is your chronic illness/injury?
My illnesses and conditions are as follows: Fibromyalgia, degenerative spine disease,
including stenosis, arthritis, sciatica and damaged back muscles due to surgeries.
Inter tibia rodding of left leg with permanent loss, atrophy and deformity. Cervical
partial fusion with permanent damage, loss and disc disease. Failed rotator cuff
surgery with loss, chondromalacia of the right knee, myofascial pain syndrome,
temporomandibular joint syndrome, carpal tunnel syndrome, headaches, essential tremors, chronic fatigue syndrome, cognitive dysfunction due to fibromyalgia, nerve pain, arthritis of the lumbar, cervical spine, knees, left hip, shoulder and hands. Restless leg syndrome.
When were you diagnosed?
I’ve been repeatedly tested and diagnosed mostly by specialists since 1994 to present.
What are the symptoms you deal with?
My symptoms consist of widespread pain in limbs, feet, trunk of body, back, neck and face, fatigue, tremors, headaches, joint and muscle pain, tingling, burning, numbness, insomnia, fatigue, headaches, leg pain and weakness, pain and tingling in hands and short term memory loss.
What alleviates your symptoms?
To alleviate my symptoms I use and have tried many self help and alternative methods
such as massage, meditation, stretching, walking, hydrotherapy, TENS unit, physical therapy, healthy diet, and listening to music.
I also use medications as alternative methods alone do not help. Gabapentin to control headaches, some nerve pain, and essential tremors, as well as some fibromyalgia symptoms. Robaxin to control severe muscle cramps. Tylenol.
The only pain medication I am prescribed, tramadol, helps very little. Due to the opioid restrictions tramadol is all the doctors will prescribe.
What exacerbates your symptoms?
My symptoms are exacerbated by sitting, standing and/or walking for any length of time. Any part of my body I rest on more than ten minutes, inability to sleep due to uncontrolled pain. Damp, humid and cold weather. Bathing, shopping and driving are painful. Any lifting and sometimes stress.
Do you take pain medications? If so, how do they help you?
I currently take tramadol for pain. It helps very little.
In which state do you live?
I currently reside in New York State.
Have you been affected by opioid laws in your state? If so, how?
Due to the current opioid laws and restrictions I cannot get the proper pain medication for relief. I suffer continuously and needlessly, making it nearly impossible to function and sleep. I do push myself as I always have; however I am severely limited to get my necessary tasks done. Standing, walking, sitting, bathing, dressing, typing, and light shopping are torture now.
I have been to numerous pain management doctors and specialists for consults and as a patient with the result of little relief due to the restrictions.
I have endured spinal injections,epidurals and procedures. The injections and
epidurals are excruciating and cause much distress on my body from the chemicals in them and they give little to no relief. It seems all pain management is giving patients these injections stating they will help and is procedure in order to give a pain medication prescription.
Before the restrictions I was prescribed adequate pain medication of which I was never became to nor abused in any way. I’ve always been responsible with all my medications and tried to rely on all alternative methods in unison with my medication. My doctors always made sure I was educated on proper use, other methods and procedures and mentally fit. They also ensured that I took a part in dealing with my health conditions outside of medications.
The proper pain medication gave me a quality of life I would not otherwise have. My pain was controllable enabling me to perform necessary tasks and get restorative sleep. Now, sadly not so.
What is something you wish people understood about your illness/injury?
My wish is that chronic pain patients stop being labeled as addicts. That the public is
educated to realize opioid pain medication is necessary to many sufferers for quality of life. That we are prescribed the proper pain medication as many chronic pain patients are being denied pain medication or are being severely cut down or abruptly cut off who have never abused their medications. That doctors can responsibly prescribe proper pain medication without fear of losing their licenses or being told not to.
I understand there is an opioid crisis, I acknowledge and agree that illegal drugs and bad doctors must be stopped. I acknowledge prevention and treatment of addiction, and feel badly for addicts and their loved ones. Chronic pain patients are suffering needlessly as a result of restrictions, myself included.
Do you have any advice for other people going through a chronic illness/injury?
The only advice I can give to sufferers of chronic pain and illness are: research, pray, learn, educate, continue to try to get the proper help but for the most part be prepared for more suffering and disappointment.
Hopefully someday quality of life and dignity will be restored.