Chronic Pain Runs in My Family
/By Victoria Reed, PNN Columnist
While I was growing up, I knew my mother used a lot of over-the-counter pain relievers. At the time, I didn’t think much of it. As a child, I didn’t view my mother as sick, especially since she rarely went to doctors.
I knew she had a history of major back surgery, and besides being frequently tired and living with sore muscles and a lack of sleep, she seemed to just carry on without the help of doctors.
Now as I look back and take a closer look into the past, I believe my mother suffered from the same or similar chronic pain conditions as I do: degenerative disk disease, fibromyalgia and possibly rheumatoid arthritis.
Two of my sisters also suffer from degenerative disk disease, fibromyalgia, RA and lupus. My brother had severe scoliosis and longstanding chronic back pain. He lived most of his life in pain and died at a relatively young age. In addition, a maternal aunt had chronic pain from multiple sclerosis and eventually died from the disease.
I often wondered if there was anything I did to earn my many diagnoses, but knowing my family’s history has answered that question for me. Studies show that some chronic pain conditions and autoimmune conditions do, indeed, have a genetic origin. This genetic predisposition can be activated by something in the environment, such as a virus, and subsequently could trigger the onset of an illness.
When one of my sons was 6-years old, a respiratory virus caused his immune system to attack his kidneys, resulting in renal failure. He had glomerulonephritis, a condition where the kidneys’ filters become inflamed and scarred. The result is that waste products build up in the blood and body. He had only 15% of his kidney function remaining at the time of diagnosis.
Unfortunately, my son received three misdiagnoses in the two weeks prior to receiving the correct one! Being a fierce advocate for him and knowing with a mother’s intuition that something was seriously wrong, I pushed for doctors to not dismiss his symptoms and look deeper for the problem, as he had begun to swell up. Without proper treatment, he could have ended up on dialysis, the kidney transplant list or suffered from chronic kidney disease for the rest of his life.
Fortunately, after finally getting an accurate diagnosis and quality in-patient supportive care, he began to recover. Today he is a healthy, active 19-year-old with no residual kidney problems.
My 16-year-old daughter has also been diagnosed with fibromyalgia. She suffers from muscle pain, soreness and severe fatigue. I have seen doctors unwilling to take her complaints seriously and unwilling to treat her with anything.
Furthermore, one of my sons also has scoliosis, and having seen what my brother experienced, his future concerns me as well. Many people with scoliosis suffer from back pain throughout their lives.
I am concerned about what my children’s futures may look like, in light of the difficulties that many chronic pain patients face today. As a mom, I will continue to advocate for my daughter’s care and encourage her to advocate for herself as she grows up. It is my hope that compassion and willingness to treat patients properly will return to the specialty of pain management. Parents should not have to fear that their children will be allowed to suffer.
I’m sure that my family is not unique. Families with multiple chronic pain conditions should rally together for support, understanding and most importantly, adequate pain care!
My sisters and I often compare notes and discuss our various treatments. We support each other through our toughest days, and just having that emotional support from each other makes a world of difference. However, many in our chronic pain community do not have that kind of support and are either not believed or taken seriously. Support groups can be very useful in these situations, and I have found that they are helpful. Being a part of a support group assures me that I am not alone in my struggles.
I encourage anyone who feels alone to reach out to someone or join a support group. With social media, it’s now easier than ever to be connected with people when there is no family support.
Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.
