Wednesday, April 10, 2013

Answer to New Massive Pain in the First "Square" We looked at? Back to it I think...

Morning All... Well for me it may be back to square one on the massive new pain issues. After all I have been through for months now, over the past two days, the pain is so bad, once again I am now thinking this pain pump is not doing something correctly. I have once again trying to survive this gnawing, burning pain, much of which is in my legs and feet, but I am also having pain all over my body, even the joints that I have had surgery on. I have noticed even my arms and legs feel, "weak", as if they are almost like rubber at times. I felt at the very beginning of this in January, it was all due to the "flu". From there I was totally convinced the pain pump had stopped, or done something to make the medication not flow all the time or correctly. We changed the medication in the pump, there have been no "warnings" from the pump itself so far, but my body is certainly warning me something is wrong. When I had the pump put in, in late 2010, it was just a matter of a few weeks of medication "titration" that I was a different person. Of course nothing will "cure" any kind of chronic pain 100 percent. I do not think that is even the way anyone with any type of pain issue should feel, unless it is acute pain, such as a tooth ache, broken bone, etc... something temporary, that can be fixed, and heal. With Chronic pain, there are so MANY CAUSES, so many things that can effect it, from weather, to what you do or do not do, stress, and the list goes on and on. Nerve pain and RA pain... the pain of FM, CFS, and so forth, they are all never completely gone, but lots out there can lessen them to the place that you are able to "deal" and live in enough relief mode to have a half way normal life. But, as with myself, all too often it takes years, and many doctors, many tests, and doing the same thing over and over again, giving the same information, trying 100 different medications, alternative therapies, and you name it... before you find just the thing that works for you. I went from not even having to take an oral "break through" pill after the pump was correctly dosing my meds, to now even strong pain medication orally, along with whatever this pump is doing or not doing, is not giving me relief enough. I am "sequestered" (seems like the proper word) to pain, even worse than it was before. It is insanity. I have been though enough tests again and doctors for a small army. EMG's, NCS, blood work, a artery biopsy, (they have not done a muscle biopsy yet), more CT scans, 4, yes I said 4 NEUROLOGISTS, my pain specialist, my regular doctor, and I have lost count of just how many times I have seen them, including my Rheumatologist, and had tests ran. I have "other" issues, like new "nerve pain" stuff, from what the EMG shows, it seems there is a possibility my RA medication may not be doing its job as it should, and I have an issue with some abnormal blood work, that leads to muscle destruction, which can cause severe pain, yet at this moment we are not even sure why it is going on. They took me off my "statin", because they are known "rarely" to cause this anomaly, but after I came off of it, even the last test was still positive for something that should not be there. I had another test ran last Friday, but do not have results yet. I guess I am going to have to ask again myself what the results are. I am still in severe pain, and something it just plain wrong.
I began researching my pain pump again this morning. Their web site is full of great information, and can be a terrific help when it comes to these incredible machines. And there are times they do "fail".. either from the machine part (it is a microprocessor of course, and then the catheter can fail, by kinking, pulling loose, eroding etc... not something that happens often, but all do happen and sometimes the only warning is like myself, sudden new pain, that does not really make sense.
Life is just not fair at times. For some, life is just not fair and can be rotten more than others also. I question my "actions" in life, trying to figure out why I feel I am being "punished". Have I lived in such a horrid way, that this is my "cross" to bear? To live in horrible, almost inexplicable pain, and can't find answers, or reasons, or some fix that does not go away? It is a burden I have carried off and on through out my entire life. It seems to wax and wane, almost as the rivers, mountains, seas, and moon. Coming and going, ebbing and flowing. In between I have beautiful glimpses of life without suffering. Those moments I cherish. I hope to have some today, yet I am already suffering, and trying to ignore it. The realms of our bodies can be a blessing or a curse... thus mine tends to be cursed more than blessed.....

Rhia

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