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Hi All,

I have read and learned a lot on here but have a question or two. I love to exercise and have been lucky enough to be able to maintain an exercise program. Unfortunately I have been having a tough time with lupus lately. Since mid January I have felt bad every day, lots of fatigue and just feeling blah. My doc upped my prednisone to 20 mg a day. Usually I take 10mg along with Plaquenil. In the 4 years of having the diagnosis, just upping my prednisone for a few days and extra rest has gotten me back to being myself. Now resting does not seem to help. I was even up to 30 mg of prednisone but it didn't make much difference.

My doc had me stop exercising for a few days to rest. I took 4 days off of exercise and it didn't make a difference, so I am still working out. Am I being stupid by exercising? Whether I rest or run, I still feel lousy. I do know that the running or biking wears me out but I feel better doing something. Will it make me worse or cause me to stay in the flare longer? I am just wondering if I am do the right thing. No one I know has lupus. The doc did tell me to take it easy and I have cut back on everything. Also, I have terrible aches on my left side which I have always attributed to running and wondering if the aches are due to lupus. Sometimes the pain is awful. I do take Celebrex. Guess I am wondering if having lupus means having aches all of the time?

Thanks for any advice you can give me!
 

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Hi, I too, was heavily into exercise in my day! My Rhumy says do not put excess strain on joints. He says walking is the best exercise and he recommends certain stretching exercise(usually while laying down) for certain joints. I was dx with lupus 11 years ago, but feel I had it much longer. It is life changing, especially when you are used to being active and the fatique takes over. Sounds like you are having a flare-up. Take it easy and rest as much as possible. The pain in left side could be due to running. Sometimes, it takes awhile for flares to pass. When I was first dx, people would say just spend a few weeks in bed, you will feel better. Unfortunately, Lupus does not work that way. I know exercise helps you feel better emotionally. Follow your MDs advice, hopefully he knows whats best. For me the pain is always there, but the degree varies. When I am under stress it is at it's worse. Sending you good thoughts, Rose
 

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Hi Jeannie,

Welcome to the site.

When you are flaring it is very important to get rest. Stopping your exercising for just 4 days may not have been enough. I would follow your doctor's advice and stop until the flare is over. In the meantime some easy walking and stretching should be alright. Listen to your body, it will tell you if even those two things are too much.

Take care,
Lazylegs
 

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Discussion Starter #4
Thanks for responding!

Maybe I haven't been taking it as easy as I should. It is very hard to let go of the old me. My doc told me to rest but all along he has been encouraging. Last time I saw him he did say that he might have been treating me to conservatively and that I am an easy patient because I have been relatively going about my life with no real problems. Running is such a huge part of who I am. I usually run 5 days a week and have done long runs of anywhere from 10-14 miles on Saturdays, I miss it. I haven't felt like myself since August but had good days in there. Now it is just an everyday thing. People don't understand.

Thank you for letting me vent. I know I am very lucky because I can still do so much and I am not stuck in bed. Most days I can do everything but just feel icky. I will try resting this week. I have cut down on running, only ran once this week but I biked a lot. I thought biking would be OK.
 

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I really admire your energy! I have kept in reasonable shape over the years with Aikido and walking but the fatigue has kept me from a lot and the sore joints from others. My great glowing goal is to be able to do my old normal push ups and sit ups. I have been trying daily for a few years!:hehe: seems to express something of how I feel, with just a bit of:worried: and some:mad:. These symbols do make communicaiton easier.
At any rate, I think the rule for exercise is "do what you can but do not even think about doing what you can't or what triggers a flare."
All the best.
Douglas+
 

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jeannie, I would not run!! Your joints won't take it if you are in flare. I am not sporty but would urge you to go swimming instead if you need the "fix" that your excerise gives you. There's also some swivel steppers that are non impact? gives a good cardio workout. I used one of those and i felt great. Such a natural high feels wonderful doesn't it.

Hope this passes for you soon
 

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The Other Illinois Tammy
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Hi,
I guess you do what you feel like doing as you know how you feel. It seems that the hardest part of lupus is the amount of fatigue that one feels all the time. I have not found anyone that can control the fatigue yet. You might consider doing some kinda water exercises to lessen the impact on the joints. I wish you the best in finding a way to continue to do what you enjoy and managing the lupus all together.
 

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Discussion Starter #8
Thanks for responding.

I have taken some books out of the library and read up more than I have ever read. I am taking a break from all exercise and will stop running until I feel more normal. This disease sucks. I was hoping to lead a much more normal life but am finding that will not be the case. Thanks again for your help.
 

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I hear your words, "It is hard for me to let go of being me" and it rings a bell so true for me also. I am NOT the person I used to be, sad but true, and it took me getting very ill to slow down and pace myself. Acceptance is a tough thing and does not come easy for some of us. We want to be the person we used to be and put our health issues on the back burner in hopes that they will go away.

Moving forward I think stretching is ok but when your flaring you need to listen to your body. I always say that our bodies tell a story and the ending is all about how well we listen. I hope that you can relax a little more and try not to put expectations on yourself to be the person you used to be b4 this disease decided to move in to your life.

Take it easy and maybe find a new hobby. By the way, The Lupus Book by Dr. Daniel Wallace is a excellent source of information written in laymans terms for people with Lupus and even friends and family. If you have not read it yet then I would highly recommend you get it and kick your feet up and relax a little.

I hope your pain resolves some and bet if you take it easy it just might.:wink2::wink2::wink2::wink2::wink2:

Welcome to the board and come join us in the chat room sometime.
 

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Water therapy

Warm water therapy in a therapy pool is the only form of excercise that I actually feel better when I am finished with. There aren't a lot of these pools around anymore due to the cost of the up-keep. You can usually find them at the larger hospitals. I need to get back to going. I quit due to scheduling and need to go back. The water is 92-93 degrees and is almost bathtub warm. I can't go to regular pools due to Raynauds. The minute I get into a "cold" pool, I have instant pain. These, I am able to actually reduce my pain in. You might want to try hydro-jogging. You basically wear this belt/type of floatation device and then can basically run in place in the water without the impact to your joints etc. I would definately suggest you talk to your doc before you set up any type of excersize plan. The nice thing about the water therapy is that you start of with a physical therapist teaching you stuff taylored for your health needs and then eventually can go independently.

Amy
 

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Hi Jeannie,
I totally hear you! One of the unifing things of lupus patients is that we also tend to have been Type AAA+++ in our before lupus days. I am guilty as charged!!! Your pain in the side gives me a bit of cause for concern. One of the side lines of lupus is serositis. Well, the peritoneum is a serous membrane and you can develop peritonitis. I battle this on a continual basis. It can be all over the peritoneum OR localized.

Can you use a treadmill for your runs? I know it is not as much entertainment as a road run, but you may find it necessary to use for a time. That way, if your running sets it to acting up, you can stop without a problem of getting back to your "point A."

I can understand you wanting your "old" body back. That isn't going to happen soon, and you need to take care of yourself.

Good luck,
Sally
 

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Discussion Starter #12
Hi Sally,
Thanks for the info. My pain is muscular and no organ involvement. My eyes and mouth are the worst but I also have sjogrens. I have been resting as much as possible and took a week off. Thought I was feeling better and did run one day and did an easy bike ride yesterday but I am still fatigued. I hate this. I will be seeing my doc in 3 weeks but I am wondering if I should go in sooner. Also wondering if I should push a med change since I have only been on prednisone and plaquenil. I was hoping to start feeling better but that hasn't happened.
 
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