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Old 05-09-2012, 02:01 PM #1
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That is a very interesting article.

It seems similar to MOH, medication overuse headache, which is also a chronic pain condition.
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Old 05-09-2012, 02:53 PM #2
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Thank you for that article. I had begun to question whether the oxycodone was part of the problem, I had increased my use in response to my usual worsening of leg pains during my period, which then turned into this problem. I did not think that my current usage of 7.5 mg twice per day which has only been in the past two weeks could be enough. The article seems to be primarily implicating larger dosages, but does hint at possibilities of smaller doses creating a problem.
I am going to experiment with taking Benadryl and not taking the oxycodone for 4-5 days. I have very little that must be done this weekend. Normally I rely on the oxycodone when I have to get things done, ride in the car, go to church, laundry, shopping, etc. but my usage is not such that I experience withdrawl symptoms, I have not been a heavy or consistent user, so I only anticipate an energy drop and increase in muscle pain due to the CMT which it does help with. Steps are the very devil without it!
It has not helped much, if at all with the sunburned feeling.
I did notice that the article recommended butrans as a substitute for opiates. My doctor had wanted me to try this before, and I preferred to stay as I was with the as needed oxycodone rather than a 24/7 patch. I may need to re-think this.
If it is the oxycodone causing the burning, should I know within 4 days?
Thank you again.
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Old 05-09-2012, 03:38 PM #3
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I should hope you see some change within 4 days... but I don't know if that is enough.

You know that article discusses the NMDA pain receptors, and using a NMDA blocker to help. Magnesium does this.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist
most of the list is impractical for most people, but the DM and memantine (Namenda) are available and also the magnesium, of course.

And MSG....does the opposite...stimulates the NMDA receptor.

Are you using magnesium at all? It might help, if your problem is what the article describes.
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Old 05-09-2012, 04:05 PM #4
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I have the magnesium, have not been using it regularly. Will be more diligent. Does that mean that magnesium may neutralize this particular effect, allowing me to take the oxycodone, assuming the oxycodone was found to be the culprit?

That article and related ones seem to address a much higher usage than mine. Is it even possible that this is my problem? I am not too hopeful, but it is an easy fix, the burning is much worse than the muscle pain, stiffness and weakness.

Also, while I understand that one should only change one variable at a time to gain any real knowledge, I am in such distracting discomfort that I want to do everything at once to see a change as soon as possible. I can always re-introduce things slowly.

This body- wide burning can, evidently, also simply be a symptom of small fiber neuropathy. My skin biopsy did show fibers breaking down at the upper thigh. Since it works in a mirror image fashion, I assume the burning in my shoulders and upper arms is analogous to my hips and thighs, just as the muscle wastage in my feet and ankles is mirrored in my hands and wrists.

Thank you Mrs. D.!
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Old 05-09-2012, 04:57 PM #5
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Susanne C. perhaps the burning is due to CMT. (or partly). Some people (CMTers) experience severe neuropathic pain and require medication to control it. Just a thought. Perhaps it depends on the type of CMT as well. I hope I never have body burning. Legs and feet are enough. Hope you get some relief.
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Old 05-09-2012, 05:34 PM #6
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Thank you Kitt. Actually this is what I think is most likely, and of course I hope it is something else, so I want to try what I can.
I have a question just for you. Why do some websites, like Mayo, say that CMT rarely causes pain? If small fiber neuropathy causes severe pain, and CMT causes serious small fiber neuropathy, why would CMT patients not have pain? Many websites do say it can cause serious pain, but the ones that don't really anger me. My neurologist, who had praised my pain tolerance through a 2 hour EMG/NCS ( much of which I barely felt ) decided once it was CMT that it shouldn't hurt very much. That's just the SFN component. My foot, ankle, leg, hand, and wrist muscles are visibly wasted. My legs have the dead weight and stiffness of cement. I can barely go up steps. How can this not create pain?
The gabapentin had been controlling the burning until now. The oxycodone the shooting leg pains and other muscle pain. I was really getting by okay, in spite of increasing weakness. That was just the way it is and i was okay with it. This is a whole new ball game and I don't want to play if I don't have to.
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Old 05-09-2012, 06:15 PM #7
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I know. I have seen those websites as well. We know there are websites which truly do know and those that do not. I guess that's how misinformation gets out there.

CMT has taken much from me and it still is as it marches (progresses) on. Who knows how a person will end up. No one. It is a scary thing. All you can do is try and deal with the symptoms as they come along - and they do.

I know what you are saying about your legs feeling like dead weight and the stiffness of cement. I have said before that people who do not understand it - well how can they if they haven't walked a mile in the other person's shoes - should strap on some cement blocks and see how that feels to try and walk. I don't do stairs other than three anymore. It just does not work anymore at all. I go down those stairs backwards holding on to handrails as going backwards down the stairs is easier. You can tell when you have overdone.

My Mom used to say that her hands were like a cub bear with boxing gloves on. I am just beginning to find out how she felt. Not my hands so far though. Her feet/legs were affected also but her hands were affected first. And as we know, CMT symptoms vary greatly even within the same family. So true.

I do hope you get to the bottom of what is happening with you. Take care.
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