Quote:
Originally Posted by mrsD
I wish I could offer some help, but this seems pretty serious now to me. Could you have more going on besides the CMT? That is always possible. I'd get a doctor's opinion on it all.
Susanne, you are always a strength for members here, so I do hope you get some help with this new round of pain.
Long term users of opiates you know make more receptors, and that then requires higher doses to fill those. It is the tolerance spiral.
Once things get this complicated, your only recourse is going to be medical and doctors' opinions.
Debi... you are really lucky to have such a wonderful family to step up to the plate for you.
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The meds are still working, at least for now, and I am saving switching off to something else for when it gets really bad. I was away from home yesterday, had carried all my meds to my appointment to show the doctor, then forgot to refill my purse pill box and was out all evening. Sometimes I really wonder if any of this helps, then a night like last night shows that I am still getting quite a bit of benefit from the medication. Between no medication and being in the car it was very tough.
I am disgusted with doctors in general. The local neurologist had said to come back if something changed but she had a very narrow view of what were acceptable pain levels and symptoms for CMT, ideas that have recently been disproven, and I do not really want to go back. The chest pains are evidently a common symptom once it advances. I am more concerned about the movement of pain, numbness and weakness into the trunk.
The medication is a double edged sword and I am always evaluating, testing my mental acuity, trying to go with less, but for now I am able to function better with them and I need to function. There has been a study on morphine and Gabapentin as an effective combination for PN.
http://www.ncbi.nlm.nih.gov/pubmed/15800228
For now I seem to fall within the population that benefits from this.
My PCP knows little about CMT, but does work with a lot of diabetic neuropathies. He basically trusts my research and feedback, occasionally I get Mr. Hyde instead of the kindly Dr. Jekyll, but I am quite certain I could have a heart attack in his office without his noticing. I know that I am lucky to get pain management as so many people have trouble. I would be very depressed and possibly suicidal without it. At least I can think about other things beside the pain.
This is my only daughter, ( I have four sons), and she has worked so hard all her life, masters degree in education, high school teacher in the inner city of Philadelphia, and has so little to show for it. Her husband is coming up small in this crisis and I think the increased chest pain may have more to do with stress than CMT.
I would never be able to do this without my husband, who works at home, and my 15 year old homeschooled son, who is magical with his nephew and helps with everything.