Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Hi, My sister has experienced very severe pain. She even had a fractured foot due to extreme muscle spasms/rigidity. Th pain started a couple of years ago, first in her leg but then moved throughout the body. She has gone through all kinds of physical and occupational rehab. She went to the hospital on March 20 to have a feeding tube surgically placed in her stomach as she could not swallow. She has gone completely downhill since then. I rushed home....I have never seen another person in such pain...it was like a leg cramp, but all over her entire body and constant. This pain lasted for the entire two weeks I was there....I stayed at the hospital for the night shift....I pressed the pain pump every 7 minutes because no longer has control of any part of her body...not even pressing a button under her finger. We all were terrified of what we saw.....someone we love so much suffering that way. That caused a real test of faith for me personally. The doctors then gave her so much morphine that the internist thought it would kill her as it would stop her bowels and intestines from functioning. So they ultimately placed a pump surgically in her spinal column that gives her a derivative of morphine called Dilauded. At this point her body is completely rigid. She receives all meds including pain meds via her feeding tube and then has the pump in her spine. She cannot communicate much now, so we really do not know what pain she is experiencing. Or if she is completely aware of what is going on around her. I apologize for this horrific story.....it is unfortunately what can happen to others as it is happening to my sister. You are so right....it is heartbreaking. Sharon ~~~~~~~~~~~~~~~~~~~~~~~ Sharon Marsh, CMP Manager, Internal Events PeopleSoft, Inc. 4411 PeopleSoft Parkway P.O. Box 9001 Pleasanton, CA 94588-9001 1-800-380-SOFT (7638) (tel - direct line) (fax) www.peoplesoft.com ~~~~~~~~~~~~~~~~~~~~~~~ " Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. " --Dr. Seuss dawnmorleyus <dawnmorley@minds To: shydrager pring.com> cc: Subject: Celeste & Pain 11/13/2002 05:31 PM Please respond to shydrager For those who responded, Celeste's pain seems to be all over but it is worst in her legs. The pain is so excruciating and I guess I just don't get the idea like other people on the list have that much pain. Am I wrong about that? or have I just not been listening well enough. The pain comes in waves. She gets relief and then it comes on and lasts for hours..and she likens it to electrocusion. Does anybody else experience this or is a caretaker who has an ill person they are taking care of who explains this. The pain is actually worse since she has been in the hospital I think. One of the residents put her on Urecholine (sp?) which she took for 2 days and she felt worse after that. My friend looked it up and it is contraindicated in with Parkinsonism (duh!!). I don't know how long this drug will stay in her body. I think she took it for 2 or 3 days. Best Regards and thanks for your concern. It is heartbreaking.... Dawn Morley If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Hi, My sister has experienced very severe pain. She even had a fractured foot due to extreme muscle spasms/rigidity. Th pain started a couple of years ago, first in her leg but then moved throughout the body. She has gone through all kinds of physical and occupational rehab. She went to the hospital on March 20 to have a feeding tube surgically placed in her stomach as she could not swallow. She has gone completely downhill since then. I rushed home....I have never seen another person in such pain...it was like a leg cramp, but all over her entire body and constant. This pain lasted for the entire two weeks I was there....I stayed at the hospital for the night shift....I pressed the pain pump every 7 minutes because no longer has control of any part of her body...not even pressing a button under her finger. We all were terrified of what we saw.....someone we love so much suffering that way. That caused a real test of faith for me personally. The doctors then gave her so much morphine that the internist thought it would kill her as it would stop her bowels and intestines from functioning. So they ultimately placed a pump surgically in her spinal column that gives her a derivative of morphine called Dilauded. At this point her body is completely rigid. She receives all meds including pain meds via her feeding tube and then has the pump in her spine. She cannot communicate much now, so we really do not know what pain she is experiencing. Or if she is completely aware of what is going on around her. I apologize for this horrific story.....it is unfortunately what can happen to others as it is happening to my sister. You are so right....it is heartbreaking. Sharon ~~~~~~~~~~~~~~~~~~~~~~~ Sharon Marsh, CMP Manager, Internal Events PeopleSoft, Inc. 4411 PeopleSoft Parkway P.O. Box 9001 Pleasanton, CA 94588-9001 1-800-380-SOFT (7638) (tel - direct line) (fax) www.peoplesoft.com ~~~~~~~~~~~~~~~~~~~~~~~ " Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. " --Dr. Seuss dawnmorleyus <dawnmorley@minds To: shydrager pring.com> cc: Subject: Celeste & Pain 11/13/2002 05:31 PM Please respond to shydrager For those who responded, Celeste's pain seems to be all over but it is worst in her legs. The pain is so excruciating and I guess I just don't get the idea like other people on the list have that much pain. Am I wrong about that? or have I just not been listening well enough. The pain comes in waves. She gets relief and then it comes on and lasts for hours..and she likens it to electrocusion. Does anybody else experience this or is a caretaker who has an ill person they are taking care of who explains this. The pain is actually worse since she has been in the hospital I think. One of the residents put her on Urecholine (sp?) which she took for 2 days and she felt worse after that. My friend looked it up and it is contraindicated in with Parkinsonism (duh!!). I don't know how long this drug will stay in her body. I think she took it for 2 or 3 days. Best Regards and thanks for your concern. It is heartbreaking.... Dawn Morley If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Thghts. About The Pain Mine was in the front mainly lower part of my legs (below the knee.) Also, in my digestive area and bladder. Thghts of pancreas, kidney stone, UTI, impaction, neuropathy come up every time. Everytime severe impaction way high, nueropathy worsens, took cipro, drank my ensure 4 cans a day, gatorade, water, carnation powdered milk, chicken broth, and yogurt, and Golghtly. It was bad. Eventually my intestines, ect. cleared, my legs felt better, the lighting and stabbing went away (like a big gauge needle point jabs me and leaves i.e. when some nurse tries to use a 18 or 20 gauge needle in my arm it hurts, a 23/24 butterfly doesn't hurt as much. It has been 2 weeks. My legs are slowly hurting more again. I hate the liquid diet. For infections, I take cipro or bactrum. When I am in the hospital sometimes they just have me go NPO for a few days and pump with IV and tubes until they figure what the heck is going on. Then my lunch of pureed chicken and sauce , apple juice, ensure, clear soup with a few teaspoons of instant mashed potatoes spread over the afternoon. I can't eat alot all at once. I get full easily. The doctors have to write orders for the assistants and nurses to keep my food and give it to me over the afternoon as oppose to throwing the tray away and writing 'patient didn't eat lunch.' My physicians have told me that I don't have to eat too much to get these pains in the digestive area, and the leg pain (neuropathy) is part of the disease process. They explained about the autonomic system, ect. I understand, but the pain is bad. I bit my pillow sometimes, take my hydromorphone or ultram, have someone rub upward on the side of my lower leg -very softly and only upwards- up and down makes my legs overheat and hurt more. It is hard because I want to keep eating the little I can, walk the little I can, and poop,ect. If I don't move, I just shut down and the pain worsens. This last time was the first time I had the electric jolts and needle jab. The pain would come and go like when I was in labor. Then it got worse and worse over 3 weeks. I finally went to the ER. When a physician calls 2-3 times a day for 3 weeks and is running every test , it was time to go to the ER. The next time though, I was informed that a Cat scan with contrast is going to be taken at that moment. xray doesn't do it and it as to be taken pretty high up than normal. The pain is so intense like u wouldn't believe. It was worse than the kidney stones and labor. That is the only way I can describe the intensity. Other things I thght. of ... Have they done the urine culture?, blood in urine?, has she been urinating less than normal? OR drinking less than normal?, The new med... decreased it or something?? ask the staff physician personally, Have a pillow or something behind her knees if she is on her back or between her knees if she is on her side maybe. Some here like their sheet or hospital blanket over the side rails so they aren't 'heavy' on the patients ankles or legs. The neuro. also increased my anti convulsive med for the neuropathy at night and spread out the dose during the day because I hate sleeping so much during the day. I am on Lamictal. Neurotin ended up retaining fluids dangerously high unfortunately. What is she on for leg pain? Does she have neuropathy? nancy dawnmorleyus wrote: > > For those who responded, Celeste's pain seems to be all over but it > is worst in her legs. The pain is so excruciating and I guess I just > don't get the idea like other people on the list have that much > pain. Am I wrong about that? or have I just not been listening well > enough. The pain comes in waves. She gets relief and then it comes > on and lasts for hours..and she likens it to electrocusion. Does > anybody else experience this or is a caretaker who has an ill person > they are taking care of who explains this. The pain is actually > worse since she has been in the hospital I think. One of the > residents put her on Urecholine (sp?) which she took for 2 days and > she felt worse after that. My friend looked it up and it is > contraindicated in with Parkinsonism (duh!!). I don't know how long > this drug will stay in her body. I think she took it for 2 or 3 days. > Best Regards and thanks for your concern. It is heartbreaking.... > Dawn Morley > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Thghts. About The Pain Mine was in the front mainly lower part of my legs (below the knee.) Also, in my digestive area and bladder. Thghts of pancreas, kidney stone, UTI, impaction, neuropathy come up every time. Everytime severe impaction way high, nueropathy worsens, took cipro, drank my ensure 4 cans a day, gatorade, water, carnation powdered milk, chicken broth, and yogurt, and Golghtly. It was bad. Eventually my intestines, ect. cleared, my legs felt better, the lighting and stabbing went away (like a big gauge needle point jabs me and leaves i.e. when some nurse tries to use a 18 or 20 gauge needle in my arm it hurts, a 23/24 butterfly doesn't hurt as much. It has been 2 weeks. My legs are slowly hurting more again. I hate the liquid diet. For infections, I take cipro or bactrum. When I am in the hospital sometimes they just have me go NPO for a few days and pump with IV and tubes until they figure what the heck is going on. Then my lunch of pureed chicken and sauce , apple juice, ensure, clear soup with a few teaspoons of instant mashed potatoes spread over the afternoon. I can't eat alot all at once. I get full easily. The doctors have to write orders for the assistants and nurses to keep my food and give it to me over the afternoon as oppose to throwing the tray away and writing 'patient didn't eat lunch.' My physicians have told me that I don't have to eat too much to get these pains in the digestive area, and the leg pain (neuropathy) is part of the disease process. They explained about the autonomic system, ect. I understand, but the pain is bad. I bit my pillow sometimes, take my hydromorphone or ultram, have someone rub upward on the side of my lower leg -very softly and only upwards- up and down makes my legs overheat and hurt more. It is hard because I want to keep eating the little I can, walk the little I can, and poop,ect. If I don't move, I just shut down and the pain worsens. This last time was the first time I had the electric jolts and needle jab. The pain would come and go like when I was in labor. Then it got worse and worse over 3 weeks. I finally went to the ER. When a physician calls 2-3 times a day for 3 weeks and is running every test , it was time to go to the ER. The next time though, I was informed that a Cat scan with contrast is going to be taken at that moment. xray doesn't do it and it as to be taken pretty high up than normal. The pain is so intense like u wouldn't believe. It was worse than the kidney stones and labor. That is the only way I can describe the intensity. Other things I thght. of ... Have they done the urine culture?, blood in urine?, has she been urinating less than normal? OR drinking less than normal?, The new med... decreased it or something?? ask the staff physician personally, Have a pillow or something behind her knees if she is on her back or between her knees if she is on her side maybe. Some here like their sheet or hospital blanket over the side rails so they aren't 'heavy' on the patients ankles or legs. The neuro. also increased my anti convulsive med for the neuropathy at night and spread out the dose during the day because I hate sleeping so much during the day. I am on Lamictal. Neurotin ended up retaining fluids dangerously high unfortunately. What is she on for leg pain? Does she have neuropathy? nancy dawnmorleyus wrote: > > For those who responded, Celeste's pain seems to be all over but it > is worst in her legs. The pain is so excruciating and I guess I just > don't get the idea like other people on the list have that much > pain. Am I wrong about that? or have I just not been listening well > enough. The pain comes in waves. She gets relief and then it comes > on and lasts for hours..and she likens it to electrocusion. Does > anybody else experience this or is a caretaker who has an ill person > they are taking care of who explains this. The pain is actually > worse since she has been in the hospital I think. One of the > residents put her on Urecholine (sp?) which she took for 2 days and > she felt worse after that. My friend looked it up and it is > contraindicated in with Parkinsonism (duh!!). I don't know how long > this drug will stay in her body. I think she took it for 2 or 3 days. > Best Regards and thanks for your concern. It is heartbreaking.... > Dawn Morley > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
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