This blog has come about out of the necessity to be understood; to try and illustrate, through words, the reality my daughter and I live. This is not an up beat blog. No cheerful stiff upper lip encouragement, or hopeful dangling carrots here. This is a chronicle of our journey through the hellish fire that is our lives. In writing this I wish to both illuminate and educate, as well as make available the latest in medical research and therapies. This is not a blog simply about Ehlers-Danlos Hypermobility Type, but also about the multiple systemic diseases and conditions that go along with it. No, I do not have the answers, nor the cure, but I do have extensive experience with not only being chronically ill myself, but raising a chronically ill child at the same time, mostly on my own.

Tuesday, January 3, 2017

Pain - Such Complexity In Such A Little Word!

What most people do not understand is that there are different kinds of pain. To name a few:

1) Acute Pain is pain that is because of an injury, it is really bad, and is pain you have now, but as you heal, it lessons, and if lucky, it goes away;

2) Residual Pain can be nerve pain (neuropathy) from damaged or trapped or pinched nerves, Surgical trauma, Neuroma formation which is disorganized growth of nerve cells at the site of a nerve injury, and so forth;

3) Then there is Chronic Pain, and this can be caused by a multitude of causes, including Residual Pain.

Some chronic pain may be over sensitive or over-amped nerves or brain receptors, but a significant amount of chronic pain is "ongoing injury & re-injury, degradation, malformation, destruction, & damaging" of tissue and bone. Chronic pain is the result of these on-going injuries and tissue destruction caused by many different kinds of diseases, disorders, and malfunctions with in the body.

You can not treat all pain the same way, and with continued tissue damage, you can not just simply be stoic, especially when the spread of damage, as you age, increases, thus involving more nerves and tissue, and encompassing larger and larger areas of the body. Chronic pain takes many different types of treatment, different types of meds, different types of therapy, different types of surgery, and so on, all of which may change day by day or hour by hour, 24/7, 365 days a year. It can be a constant, ever-changing juggling act.

After decades of doing all that juggling, and managing the best you can, it may get to a point where none of that helps or works anymore, like it has in my case after 47 years of juggled management. Nothing works anymore, so now we have to look at pain medication changes and increases. I do not like it, it concerns me greatly, but after trying to find something other than more and stronger meds that would make a difference for the past 5 years (after 41 years of management), I have to consider going on time released morphine. So it has finally come down to either do that, or put a bullet in my brain pan. Torture is torture, whether it is done to you by someone else, or is done to you by your own body. You can only live so long like that before it completely breaks you down physically, mentally, emotionally, and spiritually.

UPDATE: Saw my doctor about the need to change meds and asked about possibly going on time released morphine. After a long discussion about the nature of pain and opiates, and new studies about how they both work and interact, we decided that I would be best served by simply increasing my Tylonal/Codine #3 from 2 pills a day to three. That was last May. My increase in meds apparently jumped me up into the category of pain med user that the government deems needs watching with the passing of the CURES Act a few years back. More on this new wrinkle in my next few blogs.

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