Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Hi, How many of you suffer from physical pain? What are the causes of your pain? What do you think would be the top common causes among us SMA'rs? How many of you have some pain almost as a daily occurrence? Where and when do most of you experience your worst pain? I have pain in both legs at night and lower back and many nights my right arm from elbow to knuckles depending on which position I sleep in. It can be very painful. I wondered if it could be pinched nerves, but then I also have some early to moderate osteo-arthritis. I find that if I lie on my left side and put my knees together that I get pain in my left knee which then spreads down the leg into the foot. It's almost like the pain is caused by the weight of one knee resting on the other? Has anyone else experienced this? Could it be caused by lack of muscle causing the nerves to be closer to the surface? I also wake up during the night with strong pain in my right arm if I lie on my back. This pain starts in my elbow and runs down the top of my arm to the knuckles. The pain is so bad that I can barely bend and straighten my arm. Just curious. I am hoping to see a neurologist soon!! But, he knows less about SMA than I do!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 The pain I experience seems to come in two different forms. First, I have pain from getting stiff, sitting all day in my wheelchair. If I accidently bump my toes against something and get my feet 'out of alignment', I get an ache in my knees especially. I often 'reposition' my feet throughout the day by catching the toe of my shoe on something to either turn my feet in or out. Sometimes my legs also get slight spasms if they are in the wrong position for too long. My lower back also gets stiff when I switch from a sitting to supine position. Second, I get nerve pain. There have been a couple times I have pinched a nerve in my lower back/upper left leg. It was *excruciating* to switch from a sitting to lying position or visa versa! (I actually was prescribed a muscle relaxant for this condition once, if you can imagine.) I often hurt nerves by resting elbows or knees on surfaces that are too hard for too long. If this happens, the affected limb starts to 'fall asleep' and then shooting pains flash up and down it until I reposition. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 I am in a lot of pain, all the time. i have chronic abdominal pain on my left side since 99. they arent sure why but relate it to my scolosis and slow motility in my intestines. i take narocotics for this pain, that is how severe it is. i have not heard of many smaers with my type of pain. i also have bad neck, leg, arm, and back pain. i did not have spinal fusion or rods put in my back so i am very contracted and curved. right now i am having problems w/my left side mostly falling asleep, paralyzing, and cramping up. this is in my hand and left side of face. sometimes it gets so severe my eye twitches, my left hand will not open and hurts, and my mouth does not open well and i can not speak well. we arent sure if this is from an electrolyte imbalance. if anyone else experiences this please contact me. thanks. kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Kimi - I wouldn't say it is a chronic situation with me, but I have from time to time experienced crushing abdominal pain. I have rods on my spine, but if I'm leaning totally incorrectly in my wheelchair when eating, it almost feels like the food I'm trying to digest " gets stuck " . No amount of antacids or the like seems to even touch the pain. I just have to sit in pain until it goes away, and no matter how I'm sitting or laying down, I'm practically writhing in agony! I also get symptoms like these with the stomach flu sometimes. It gets so bad, I'll pray to barf just to relieve some of the pressure. But I never can. I think I've lost the muscles to barf. Weird, huh? Jenn > I am in a lot of pain, all the time. i have chronic abdominal pain on my > left side since 99. they arent sure why but relate it to my scolosis and slow > motility in my intestines. i take narocotics for this pain, that is how severe > it is. i have not heard of many smaers with my type of pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Have you tried antigas pills? Sometimes gas pain, is just that very painful and doesn't always pass very well especially for mobility impaired individuals. You may also want to discuss with the docs the possibility of other organs pushing on the gastro track which may also cause that " getting stuck " feeling. Beth T. the OT Re: Pain? Kimi - I wouldn't say it is a chronic situation with me, but I have from time to time experienced crushing abdominal pain. I have rods on my spine, but if I'm leaning totally incorrectly in my wheelchair when eating, it almost feels like the food I'm trying to digest " gets stuck " . No amount of antacids or the like seems to even touch the pain. I just have to sit in pain until it goes away, and no matter how I'm sitting or laying down, I'm practically writhing in agony! I also get symptoms like these with the stomach flu sometimes. It gets so bad, I'll pray to barf just to relieve some of the pressure. But I never can. I think I've lost the muscles to barf. Weird, huh? Jenn > I am in a lot of pain, all the time. i have chronic abdominal pain on my > left side since 99. they arent sure why but relate it to my scolosis and slow > motility in my intestines. i take narocotics for this pain, that is how severe > it is. i have not heard of many smaers with my type of pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2010 Report Share Posted June 5, 2010 Meg, Please don't assume people are uncaring about your stuggle with pain. I didn't respond because I have no experience with the drugs you were asking about. I think pain is a common experience for many of us whether or not we respond to your specific questions. Some people may choose to be private, while others may not have discovered a solution worth sharing. I hope you find relief soon. Alana > > I guess since my post asking for advice regarding chronic pain medication > got no response, I'm the only one suffering from pain. > > > > You guys are lucky. > > > > God Bless, > > Meg W. > > > > > > Quote Link to comment Share on other sites More sharing options...
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