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Chronic Pain Whatever the cause, support for managing long term or intractable pain. |
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11-09-2006, 01:37 PM | #11 | ||
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Kevin/OH http://KevinArnold.us/ |
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11-14-2006, 06:26 PM | #12 | ||
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I had a spinal fusion three years ago, shortly after an orthopaedic surgeon told me it was all in my mind and that I had a low pain threshhold. The neuro fellow I subsequently insisted on seeing did an MRI which shoed no disc at L5/S1, and degeneration elsewhere. After that things went from bad to worse. the neuro fellow kept saying I was fine. I kept suffering awful pain. Like you I could always touch my flaming toes, because I am hypermobile. I was the kid at school who could do the spilts, the crab, handstands, handsprings, etc. Fat lot of good it did me!! But I do not have arthritis, or rheumatism, and I am not stiff, I just have nerve pain which is aweful. To be double jointed is certainly not a gift. So I am being treated for neuropathy, and eventually reach the top of the list for a spinal stimulator for pain relief.
Eighteen months after my neurosurgeon devoutly denied that anything might be wrong, all my abdominal organs tried to leave my body by a southern route. Bladder, uterus, etc etc etc four in all. I had them all repaired. Then exactly a year later my bowel finally packed up, it had been trying very hard to do so for a long time. I have just come out of hospital having had four feet of colon removed. Twelve days post op. and I have permanent runs. I know anyway the rest of it is not working and I will have to go back in the new year and have an implant to provide electric impulse, to help whats left. Apparently I have spinal stenosis. I also have DDD. Nobody likes putting a name to anything, because as soon as they do, they are opening the floodgates for dollars/sterling to be spent on your condition. I have been desperate for someone to tell me what is wrong with me because I felt like a hypochondriac. When I went into hospital this last time I expected five inches of bowel to be removed. After the op, when the surgeon came to see me and I asked him, he held his hands far apart. I got such a shock. Nearly all of my colon had been removed. if not all. I have had permanent D. ever since. I never ever thought I would have to worry about maintaining my weight. but hey. Suddenly I do, and its not nice, all I can manage is mashed spuds and gravy. My neck is also going which has an effect on my left arm, and hand which I notice especially as I play the piano. Also I will not be able to carry anything for a long time, or even drive the car. I am Lucky though because finally I have landed with a good team of docs who work together, and who consult each other every step of the way. I must admit the original spine neuro does not belong to that team. He was arrogant, and money orientated, and I had issues with him which enter into another chapter altogether.!! What am I trying to say. It annoyed me when the neuro would do these stupid sciatic nerve stretch tests. I could put my leg up around my ear on a good day, which at 55 is not bad.! Even after spinal fusion I could bend over and place hands flat on ground without bending knees. I am supple. Also, I can collapse at the local newsagents with an electrical sciatic storm, or just be in agony for a whole day with nerve pain. Where is the logic.!! The thing is, a lot of these docs dont understand, they dont have the patience, the empathy, the tolerance level, and they are over worked!. I am lucky. My lot listen to me, (most of the time.) small country town you see!!# FOOD. Suddenly I can only eat nursery food. Well thats ok by me. I'm not a gastronome anyway. OK I've gone on a lot about me. I didnt mean to. But take good heart. There are a lot of us out here. Got to go to bed now take care. M.x |
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11-17-2006, 11:50 AM | #13 | ||
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Yep!!! I recognize the symptoms. After about 13 years of testing, and numerous docs telling me that nothing is wrong, and then finally getting a Fibro dx, then being told it doesn't exist, then being told that some spinal problems were found, and then some docs saying that there should not be much in the way of pain with that, and then being told that I have polyneuropathy, then told by a neuro that he guessed I would just have to get use to pain, then being told that I have osteoperosis...that would only cause mininmal pain, then being told that I have osteoarthritis...but, why so much pain? Then having about 16 new blood tests run along with a new MRI on my brain, I know that nothing will be found to account for the severe pain that has progressed since (actually) 1983, and has destroyed a very active life of one who was promoted twice by an international company on the stock exchange, and owned her own business. Oh, yes! Yes! Yes! I will give all of that up for the expensive attention I am apparently looking for!!!
You are right. It is frustrating. It makes you wish they would find a deadly disease just so that you do not look like a joke. But, don't let them get you down. You KNOW what you are complaining about, and nobody has the right to accuse you for their inadequacy of finding and fixing the problem. Remind yourself of that. Your friend.....sally |
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