Old 05-01-2009, 08:34 PM #16 (permalink)
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Tim stays in a lot of pain. For a long time now. He does have an air mattress. He is on Lyrica and Celebrex which seems to help. We are going to some stronger pain meds now that he has no muscles left.

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Old 05-06-2009, 03:40 PM #17 (permalink)
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My mom doesn't have any pain yet but when the nero told her there was no pain with ALS she said "My ass there isn't any pain". With all this information from you guys how can those doctors actually say there is no pain? I wonder where they get their information.
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Old 05-06-2009, 06:16 PM #18 (permalink)
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Quote:
Originally Posted by GlenBrittle View Post
most of the time no , only when I fall over
I should be careful when I say things like this : I fell over last night and I am still feeling the pain in my back.
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Old 05-06-2009, 07:51 PM #19 (permalink)
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Update. My mother now has been switched from Lortab to Oxycontin. We also received a bottle of highly concentrated morphine for quick relief. My mother is now sleeping and /or spacey most of the time. They also upped her neurontin. She is just existing at this time. The sad thing is that she could die tonight or she can languish on for months. This is a dreadful disease!
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Old 05-06-2009, 08:49 PM #20 (permalink)
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Sorry about your mom kylisa! Y'all are in my thoughts and prayers!
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Old 05-13-2009, 02:43 PM #21 (permalink)
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Many times the doctors will tell you there is no pain. When my husband was diagnosed it was his arms and hands first. This made him very top heavy for balancing issues and it was not very long till he was wheel chair bound. Within 6 mos he was bed bound and the pain was terrible. He lost a great deal of weight as time went on, and the pain was in the bones. We used the Fentenyl patch for pain, he had a cathetar put in early on. His swallowing was difficult after the first year. Many modifications had to be made to maintain his eating, but it can be done. With our ALS Society in Canada I was able to get a bed that has a cushion lift foam in it, and it was a life saver. I did lots of turning to prevent bedsores, and lots of massaging legs, arms, back etc. If she is having problems swallowing do you have a suction machine? I also had a bi pap machine for breathing . Hope this will help you
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