Question:
Hi Kristi: I have a lot of muscle loss as I’ve really noticed just over the past couple years. I take muscle relaxers and I always wondered if that added to the muscle loss? Do you take relaxer as well? Do you have a lot of muscle pain? I sometimes am to weak to lift things and sometimes I will shake very bad after lifting something. I use to get it real bad after trimming bushes with the hedge trimmers. The next day I’d be so weak in the muscles it hurt to move… My legs get that way after walking a lot too. Have you asked your Rheumatoligist about this? Are you sure it’s the lupus? Have you been checked for a possible stroke? That could effect your ability to lift or walk on one side of the body. Is their anything else that you have noticed besides the weakness and your leg turning inward? Is your speech been effected? Is your face drooping on that side? IMHO you should call and make an appt to see your doctor. Please keep in touch and let us know how you are. I wish I could offer some more insight on this. Mary/az
Response:
I think the loss of strength is definitely something you want to mention to your doctor. Lupus myositis is a fairly common symptom of lupus. It can cause loss of muscle strength. However, it’s usually not progressive or severe. What you’re describing sounds more severe. It’s also possible, of course, to get a second autoimmune disorder along with lupus such as polymyositis or dermatomyositis. These conditions are covered by the Muscular Dystrophy Assn. (http://www.mdausa.org/research/index.html). You can check their website for more information on these and related disorder. Also, Dr. Wallace tells a little about them in his THE LUPUS BOOK, rev. ed. Keep in mind, I’m not saying that you have any of these. It’s just that what you’ve said sounds very reminiscent of people I know with these disorders. At any rate, I think it’s a very good reason to go back to your rheumatologist and let him know what’s going on. It also wouldn’t hurt to have a neuro consultation. Sandra BTW, muscle wasting disorders will cause a significantly increased CPK. You might want to ask to have that checked. Muscular dystrophy causes increased CPK’s in the thousands. Myositis would also cause increases though not necessarily nearly as big. Additionally, some people also get muscle biopsies for diagnosis; however, they’re not always necessary.
Response:
Kristy, I’m not a Dr., but… have you looked into something neurological? Maybe not lupus related? My neighbor was a prison guard, I know that is not an easy job; it is good that you can be off while you are solving this puzzle. <s> — Nancy <nfarrel…@infree.com> <KL…@webtv.net> wrote in message
news:5369-39F0E0F8-69@storefull-226.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Ok guys I hope somebody out there can help me with this. I’ve never had > this before. Well I have had bouts of it twice I have been so I could > hardly walk but now all down my left side the muscle is cramping up,when > I wake up it is to the point I can hardly stand it . My left arm is the > worst I can hardly lift anything. Went to store could not pick up even a > can of corn.I felt so embarrassed .Always I could hide this type of > thing before but now it is getting so I can’t. In the past when I would > have a spell of my body going crazy it would pass in a matter of days. > This has been going on for some time and I am off work because of it I > work as an officer at a prison and before I went off on disability it > was so noticible that the inmates would tell me I better take time off > before somebody hurts me. > Like I said my left side is the worst, I even walk with a limp and my > left foot is turning in. > The lupus is thru out my whole body I can’t think of anywhere it hasn’t > attacked. I have had it for 20 years and done pretty good but now I am > getting scared I wonder if I’m starting to get to the point that there > is nothing to do for this problem.I guess I’m hoping somebody out there > has had this type of muscle lose and it got better. > So if anybody has suggustions feel free. > Thanks for being there Kristi
Response:
Kristi, You never mentioned what meds yo take. I know pred and the dmards did that to me.I am doing well now after a long haul with antibiotic therapy as it isless toxic and allowed me to get off pred and all the other drugs,. Http://roadback.org has a protocol forthis. Just thought you should know someone is being helped.I am sick 20 yrs too.Been on antibiiotic therapy 4 yrs. Love Marge Marge
Response:
Ok guys I hope somebody out there can help me with this. I’ve never had this before. Well I have had bouts of it twice I have been so I could hardly walk but now all down my left side the muscle is cramping up,when I wake up it is to the point I can hardly stand it . My left arm is the worst I can hardly lift anything. Went to store could not pick up even a can of corn.I felt so embarrassed .Always I could hide this type of thing before but now it is getting so I can’t. In the past when I would have a spell of my body going crazy it would pass in a matter of days. This has been going on for some time and I am off work because of it I work as an officer at a prison and before I went off on disability it was so noticible that the inmates would tell me I better take time off before somebody hurts me. Like I said my left side is the worst, I even walk with a limp and my left foot is turning in. The lupus is thru out my whole body I can’t think of anywhere it hasn’t attacked. I have had it for 20 years and done pretty good but now I am getting scared I wonder if I’m starting to get to the point that there is nothing to do for this problem.I guess I’m hoping somebody out there has had this type of muscle lose and it got better. So if anybody has suggustions feel free. Thanks for being there Kristi
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