any one here with lupus?

B

barbara ann

Member
Hi. I would like to know if anyone here works out with cathe or at the gym and has lupus.I was just diagnosed with lupus--right now I am on prednisone -a nasty drug for sure.For the last 3 weeks,I have not been able to work out---some days it is difficult to even walk and do daily living things like dressing,etc.I have intense muscle and joint pains in my neck ,biceps,triceps,wrists,hips,quads, and knees-basically everywhere but my ankles.That is the way the disease presented with me-very acutely.I have gotten somewhat better with the prednisone but the pain ranges from very bad to bad.The ironic thing was in Jan of this year,at 51 yo, I decided to get my act together and finally lose that 20lbs and lose body fat with the help of a clean diet,joining a gym and hiring a trainer for weight lifting 2/week as well as doing cathe and xtraining with spinning classes ,jogging and boxing.I was really into it and worked out 1hour/day and managed to achieve my goals.Then,this hit me like a ton of bricks.However,I have to face the fact this is what I have now -just want to know how any of you work around it-I am hoping this flare up will subside but as we all know you can't predict anything with this disease.My trainer keeps calling me and because he is not educated on this disease,he thinks I will back at it,since I was his favorite client because I loved working out,worked hard with him,would share cathe moves with him and ate clean and it all paid off.He can't believe I have a problem even lifting my purse,walking,driving,etc.But, I am sliding way back in the matter of 3 weeks in terms of fitness and I don't want to end up where I was in Jan.My doctor was no help-he said do what I want .I am trying to see if there are any websites devoted to exercise program tailored to those with lupus? The lupus organizations just say light to moderate exercise.I am not sure where to turn and thought someone here with lupus can help me out.Thanks in advance for your help
Barbara
 
Just wanted to say welcome. So sorry that you are going through so much right now. Hopefully someone with lupus will chime in and give you some insight. Meantime, rest and I hope you feel better soon!!
 
Hi Barbara - I am sorry that you are having to go through this. First of all, I would find a different doctor, one who can help you. Secondly, I want to ask what medications you are on. My mom was diagnosed with lupus a year ago, or so. It is not so common to suddenly get it at your age, or hers. It turned out to be a medication she had started, and finally she went off of it, and her lupus gradually disappeared. Meanwhile, there are a variety of medications you can take for lupus, aside from the steroids.
 
Hello.

First of all, welcome. Sorry to hear you were recently diagnosed with Lupus. I agree with the other poster, you should find another doctor. One that is more sensitive to your specific concerns and questions. You may be able to get a referral for physical therapy. There are PTs that are well educated in the precautions and contraindications of exercise and Lupus. They could possibly develop a program specifically for you (when you are ready) and monitor you while you are exercising. They could also help answer any specific questions you have.
I know it must be frustrating to make so much progress toward your goals and then not be able to perform activities of daily living. Right now, just rest and don't overdo it. I would definitely get another opinion from another doctor. I wish you luck. Please keep us posted.
 
Hi Barbara!

I have lupus. I'm 39, and I was diagnosed in 2001 after almost 2 years of symptoms. I have worked out regularly for 14 years, usually 6 days a week for 45-90 minutes. You have to listen to your body, and not worry about keeping up with others (especially Cathe!). Some days I overdo it, but most of the time I feel worse if I don't workout. Since you're having a flare, I would suggest keeping it very light, maybe just some walking and stretching. I've found it important to do SOMETHING for both my physical and mental needs.

I'm not sure how long you've had symptoms. Your post said it was acute, and lupus generally takes a loooong time to diagnose, especially since there aren't any conclusive tests for it. I have found that keeping a journal of symptoms has helped in the past, both with my diagnosis and with on-going treatment.

To be fair, my condition is considered mild, as I have no organ involvement. That doesn't mean that I don't deal with pain on an almost daily basis. Be very careful with your body, and you may even want to change your focus from weight-loss, getting in shape, to just making your body as healthy as possible given your circumstances. Stress has been my biggest enemy.

Also, my doctors know that I workout. We've discussed it, but they've never really questioned me about it, or given their recommendations. I just try to learn as much as possible and be aware of what my body is saying. I recommend the "The Lupus Book" by Daniel Wallace. This has been like my lupus bible.

I'm not sure I've been much help, but will try to answer any questions you may have.

--Sharon
 
Thank you all for your input and your support-I really appreciate it.My pain is still here,but it seems to be decreasing in intensity.I started walking for about 30min in the morning the last 2 days.I will take it slowly and listen to my body.Thanks again for all your help
Barbara
 
(((HUGS)))

I would find another doctor. Get references.

Also, you might want to pose your question at videofitness.com. I think they are a bigger community... you might get more responses there.
 
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