Chronic Pain

by annemariedemyen, posted in Uncategorized
Rory and Grandpa

Chronic pain is part of life for many people. We have a genetic collagen disorder in our family that causes migraines, muscle cramps, IBS and severe joint pain, amongst other things. I, am relatively pain free most of the time. Unfortunately, the same could not be said for my mother and cannot be said for my son Mark, my daughter Jennifer and for her children. This was something that was relatively accepted in our family until my grandson Rory became virtually incapacitated from pain as a young tot.

Rory and Sister Genie

When Rory was an infant he was very calm and quiet. Any amount of activity was followed by a nap. He did not complain or act as though he was in any particular discomfort. He was just a very sweet baby. As he got a bit older, it became very obvious that he had major issues. He had trouble speaking, walking, climbing stairs, his eyesight deteriorated, he had poor dexterity and he had very little stamina. During the day, it was obvious that he was always suffering from some degree of pain. At night, he would wake up screaming in pain. Jennifer started taking him to doctors looking for answers and relief for him.

Rory with his sisters and great grandma.

For several years, Jennifer took Rory to their family doctor, who in turn sent him to one specialist after another, who ordered one test or procedure after another. When tests came back negative for potentially fatal conditions, the doctors would advise Jennifer to give Rory pain medication and more pain medication and to be grateful that he was not dying. The fact that the quality of his life was no great hell did not register as an issue with them.

Eventually, it was determined that Rory suffered from some form of a genetic collagen disorder that he would eventually outgrow – not that my mother, who had lived to be 95, or my siblings who are in their 70’s, or my children who are in their 40’s had ever outgrown their chronic pain – but Rory would.

When Rory was about twelve, he was accepted as a patient by a physician who specialized in pain management. With his help, and a lot of work and encouragement from his entire family, Rory was able to work through his pain to the point where he was able to start building up muscle tone, which helped to make the pain manageable.

This spring, Rory graduated from elementary school. This fall, he started high school where he has been managing fairly well despite ongoing issues. He does extremely well academically. We are all happy for him and for how far he has come in managing his pain. However, it is still an issue and it remains to be seen how well he will function as life goes on.

Rory’s grade 8 graduation

The thing is, how long are medical practitioners going to obsess over the length of one’s life with no concern for the quality of that life? If medical practitioners and medical researchers do not feel that severe chronic pain is an issue worth addressing, who does?

11 thoughts on “Chronic Pain”

  1. Doctors (even here in Europe) are indeed doing a very poor job when it comes to increasing the quality of their patients’ lives and sometimes they are not even that effective (provided that they really care) in helping people prolong their lives because, more often than not, all they do is dole out pills to treat a medical condition after it has occurred without really bothering about prevention and, very often, they themselves set a poor example in this regard eating lousy food and being overweight, smoking etc
    No doctor has ever told me, for example, that I should be replacing refined carbs with whole grain ones and that I should do away with sugars and eat lots of raw vegetables (because they themselves eat bad food). I discovered these things on the internet. I lost weight and solved most of my issues watching videos on YouTube not through medical advice from my family doctor

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  2. Quality years over quantity for sure. Have you tried, or do you have access to, quality CBD oil, from cannabis, not from hemp. It has been a great help for me in relieving my symptoms of Crohn’s disease. Wishing you and your family all the best!

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  3. Thank you. I agree that we have to do everything we can to take care of ourselves. There was a lot that Jennifer and Charlie and all of us did to help Rory. We made sure he (and all of his siblings had a super healthy diet etc). It is the same with doctors here. I had shingles last week because not one ever urged me to get the vaccine. I found out after I had them that using steroids (for asthma) is a huge risk factor.

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  5. There are adults in my family in my family who use CBD oil, etc for pain management but it would not be allowed here for anyone under 18. Also, there are a lot of food type allergies in our family so for some of us it just isn’t an option. Thank you for your comment.

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  6. The affliction in my family is osteoarthritis, and with me it’s in my entire spine, both hips, one shoulder, and my left hand. Still nothing I endure seems as bad as your family’s affliction. I am praying for all of you, and for Rory to find relief so as to have as normal a life as possible.

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  9. Today we eat mostly industrially produced food and unfortunately a lot of vitamins and other neccessary elements gets lost in the process. Personally I have been eating dietary supplements on a daily basis for at least 30 years now, but one cannot just buy any supplement either. The choice is of great importance as some are just about totally worthless. Fortunately mine seems to work perfectly!

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