What the doctor had to say
As far as I can tell from browsing some of the thousands of web-sites that my search returned, this is what the Dr. had to say.
When a person has a Demyelinating Disease as I have they will experience chronic pain. The problem with treating chronic pain is that pain is subjective. No two people react to pain the same and there isn't a test for pain. I a person has high blood pressure, they can check the blood pressure, prescribe medicine and check to see if the medicine lowers the blood pressure. You can't do that with pain. Also pain can be caused by so many outside forces such as stress, tiredness and weather changes just to name a few.
A Demyelinating Disease often causes a person to become tired to the point of exhausting fatigue. And all of my pain medicines can cause tiredness.
So over the past couple of months, I have tried to decrease the number and amount of pain medicine in an attempt to reduce the exhaustion. I have managed to reduce my Ultram by a half. It was easy to tell if the Ultram was working. When I stopped taking it, the neuropathy pain came back immediately. However, I've found that I can go through the day without taking the Ultram and just take it at night. I now am off the other medicine. However, the Dr. told me that it would take a couple of months before I know if I need to take this medicine or not. Well how do you know? I mean during the couple of months, the weather changes a lot, you have stress and other things that might cause pain. Then how does one know if the medicine would have help relieve that pain or not?
So I think that I have slowly gotten worse. However, on the positive side, it's taken me 2 1/2 years to get to this point. The same 2 1/2 years I've had the Tracheostomy. I really believe that without the Tracheostomy I would have arrived at this point much earlier. But I really do get tired of being exhausted and fatigued. It is hard not to overdo things. I want to get out and get going and doing. Of course as I just learned it took me over a week to recover from Thanksgiving.
Well now you know what the doctor had to say.
2 Comments:
I can relate to not knowing whether a medication is helping or not because of other variables that cause pain. I've just increased my dosage of Neurontin to 1200 mg./day because when I tried to cut back I was in terrible pain most of the day. At first it seemed to work wonders but last night I went into a flare which is continuing so far today. My face pain is the worst (could be atypical trigeminal neuralgia). The weather has changed here so I don't know if that is the cause. And then, I am 52, so maybe it's dem hormomes. I don't know if the Neurontin is working but am afraid to ramp down in case I get even worse. The part of my pain that isn't neuropathic (my lower back pain mostly) responds well to codeine (which I take every 4 hours) so I can definitely tell the difference.
When I read about what you go through, I feel like my life is so easy, though. You are an inspiration to me.
Just wanted to add that I've set my blog to 'private' for now. A family member feels uncomfortable about some of what I've written so I'll have to check all my posts and edit some posts before it's public again.
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