I have been attending a pain management group as I have spondylosis and disk problems in my back and neck. They talked about de conditiong as you tend to do less because of the pain. I explained I had muscle weakness as part of my lupus, she said it was the same.
It made me feel lazy as I am unable to work anymore due to lupus and how it affects me. So they made us run through a couple of gentle exercises yesterday, after a few seconds of the first exercise, (raising your elbow to your shoulder. I have weakness in my right arm and both legs.) my arm dropped and refused to move at all, then I felt dizzy as if I was going to pass out. I did try the other exercises, but they involved lifting legs, my legs won't due to the weakness.
My husband picked me up and I had to go to bed. Today I am so weak, I can barely keep my eyelids open, and my body is like lead. Next week we are supposed to run through the exercises properly as if in a class. No one else in the group has lupus or any similar illness. The physio doesn't seem to get, how it affects me. So am I unusal? Or do other lupies react similarly? I understand the need to maintain a level of activity and not to get weak from a flare. I do try, but it is very hard.
I can walk with a walker which I try to do as exercise. However moving specific muscle groups is an absolute no no for me, due to the weakness. Repetitive movement is impossible. Unable to iron etc due to this. Do others find this? I am being tested for a muscle weakness disease as well.
Thanks
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dizzy2
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Hi I did the pain management and the physio let me sit while doing exercises I was exhausted but decided that this was going to benefit me in the long term Anyhow I continued and the physio was great Durng this time I took TA and was put on steroids Tho I've had many bad days and a bad flare I then went on to join the exercise class where everyone has some disability So we all do to our own level . Somedays I honestly am so tired and sore but I enjoy the social interaction and no I'm not running marathons but I know that I am not damaging anything and if it helps keep me mobile then I will continue. I do hope that you continue and get the best out of it Tai Chi is also a good gentle exercise but I had to give that up as it was one thing too many On another note I find Any wheat or gluten in my diet impacts greatly on my joints and pain I also had to give up lots of other foods Nightshade foods and MSG are big no nos for lupus sufferers as is any soya based foods Dont know if this helps but I hope you get to enjoy your exercise Take care Ps I walk with a stick and do my little work out while using my stick
Ask next visit what they know about Lupus if they do not i suggest they learn before dishing out your Physio as they could be doing more harm than good.
Hi I had a physio that scared me to so much I didn't go back again. She was trying to assess me and had me walking on a treadmill. What's wrong with that I hear you ask. Well I had my big toe wrapped up from an in growing toenail op and I was wearing flip flops. She was so intent on getting me to exercise she closed her eyes to any danger. Things progressed and got worse - step ups it was ridiculous I ended up shaking and crying and leaving early and vowing never to go back
I have joined a gym and I find the recumbent bike wonderful. You sit down and cycle at your own pace it got me started for a while but flare stopped the progress trying to get back into it
I totally agree with your previous replies. I have been managing scoliosis & spondylosis in my upper & lower spine all my life: tried everything, been there done that. Am 60 this year, with my spine condition reasonably under management, but it did take me many years to learn to cope the way vouton, janiceray & twist are recommending. for sure: if Any exercise you try aggravates your symptoms, best to stop, think again! Take care
Thank you everyone for replying. I want to be mobile, keep flexible and build up strength and stamina, but not at expense of causing a worsening of my symptoms. I can walk with difficulty, and am working on building up the frequency and length of my walks, as my main exercise. However, specific repetitive exercise for my weak muscle groups seems to cause extreme aggravation. Swimming is out for me as my body doesn't work in the water. Strenuous exercise is out due to a heart problem.
If you are taking statins (can cause some awful side effects) this may be the reason for some of your problems. Side effects can be bad muscle weakness - but also fatigue and brain fog...
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