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Anyone with Lupus or similar?

vkai2011-02-17 23:24:34 +0000 #1
I've been riding off and on for a few years now ever since training to participate in the AIDS/LifeCycle event in 2008. I had an open lung biopsy in February to determine the cause of my breathing problems and ground glass opacity on my chest CTs. Anyway, the biopsy showed chronic inflammation and subsequent scarring (we did it mainly to make sure my job was not contributing to my breathing issues--I use a grinder and work with chemicals and at 28 years old I wanted to make sure I didn't just need to get a different career). While in the hospital, they did a test for autoimmune disorders and my RF came back at 300 something. They then did some other blood test that came back "very strongly" for Lupus, though I don't have all the symptoms. I have been diagnosed with Undifferentiated Connective Tissue Disease.

My question to you all is whether cycling helps or hurts symptoms. I haven't ridden my bike since the lung surgery (I also lost my job and moved across the country for a new job in that time). I am hoping to start riding again, but recently I've had a lot of joint pain from my daily activities. I question how much is from UCTD versus the fact that I'm carrying around about 100 extra pounds of body weight that my joints weren't really designed to carry.

I feel like the exercise should make me feel good, but I'm scared of creating more problems.


zoom-zoom2011-02-17 23:35:56 +0000 #2
A friend of mine who is an amazing cyclist (she's insane...she has been riding for not even 2 years and has already covered something crazy like 8k miles just in 2010. She got her new road bike in April and just posted on FB that she's done 5k miles already--makes my 3300 or so seem lame) has lupus and had her thyroid removed years ago, so she is on thyroid replacement hormones for that.

She was telling me a while back that part of why she bikes is that it makes her feel better and keeps her lupus symptoms at bay. I don't think she has any lung issues, though. I'm asthmatic, so I know what a damper bad lung days can be on anything aerobic.

I would ask your doctor for confirmation, but my guess is that cycling would be good for your conditions. Aerobic stuff definitely will strengthen your lungs and the low-impact nature of cycling would be gentle to your joints, once you have acclimated to the new stresses of riding.
lo1232011-02-18 00:01:13 +0000 #3
Quote:

Originally Posted by vkai

My question to you all is whether cycling helps or hurts symptoms. I haven't ridden my bike since the lung surgery (I also lost my job and moved across the country for a new job in that time). I am hoping to start riding again, but recently I've had a lot of joint pain from my daily activities. I question how much is from UCTD versus the fact that I'm carrying around about 100 extra pounds of body weight that my joints weren't really designed to carry.

I feel like the exercise should make me feel good, but I'm scared of creating more problems.

I have psoriatic arthritis, which until I started riding, caused a lot of issues for me. For a long time I had the UCTD quasi-diagnosis because of my blood word (high ANA). Anyway, I feel MUCH better when I ride. I haven't been riding for over a month due to a wreck, and I'm feeling a little less normal than usual.

There's been some research showing that endurance exercise works as an immunosuppressant - like the drugs I take to treat the condition (methotrexate, remicade, prednisone, etc).

Now for the lung issues, you may want to talk to your doctor. I have asthma too, and riding at certain times of the year can be very challenging for me. It's probably best to make sure
vkai2011-02-18 00:20:24 +0000 #4
Thanks, Ladies. I really hope that riding again will help. Last time I saw the doc he said I can do whatever doesn't hurt. Nice. I do also have exercise induced asthma, so I use the inhaler before doing anything strenuous. I found that out the hard way when I was about 20 miles in on day 1 of the AIDS/LifeCycle. I'd done a couple of 50 mile rides before going, but we didn't have the same hills they have in San Francisco! Kicked my butt.

I have ridden a few days in a row. I shouldn't say "ride," I only went around the apartment complex 3-4 times a day trying to get used to being on a saddle again, and getting my balance on this road bike. I have an old wrist injury that left me with some missing cartilage in the wrist and a plate in my arm, and it's already sore! I am hoping a lot of that has to do with the weather changing and not my tiny amount of time on the bike. I know I'll be putting more pressure on the hands than my comfort bike, but I insist on being able to ride this bike!

I'm still getting used to the whole UCTD diagnosis, and I've been a bit in denial. I tried to tell myself at the beginning that I'm just making this up, but it's hard to make up inflammation and bloodwork! My joints have been hurting a good bit lately and I keep forgetting words (I just stop mid-sentence and can describe the word I want to use, but can't say it). It seems that can be related to the disorder, too

I lost my job during the summer and started a new one recently, so I have insurance again, but I don't want to go to the doc til the new year so everything I spend goes toward my new deductible. . . and it's not a waste. I'll find a doc in January and see what they say. I recently got off of about 6 months of prednisone and my rheumatologist wanted me to start some immunosuppressant for folks who've had transplants, but I was hesitant to start and then lost my job, so I didn't.

Anyway, sorry for rambling. Cross your fingers that riding makes me feel better!
lo1232011-02-18 00:43:19 +0000 #5
Quote:

Originally Posted by vkai

I lost my job during the summer and started a new one recently, so I have insurance again, but I don't want to go to the doc til the new year so everything I spend goes toward my new deductible. . . and it's not a waste. I'll find a doc in January and see what they say. I recently got off of about 6 months of prednisone and my rheumatologist wanted me to start some immunosuppressant for folks who've had transplants, but I was hesitant to start and then lost my job, so I didn't.

1. I'd suggest you go ahead an call some rheumatologists and see how long their wait is. In some areas (like where I live now), it can be 6 months to a year, even with a referral from another rheumatologist.

2. The immunosuppressants aren't that bad. methotrexate is probably the most common one for autoimmune diseases--it's a chemo drug. It's got some icky side effects like mouth sores, nausea, fatigue. But the doses for autoimmune diseases are VERY low compared to anti-rejection and chemo doses. Imuran is another used pretty commonly, but I have no experience with it.

The main thing with immunosuppressants is that you have to be careful about exposure to illness--infections in particular. I pick up every little bug that goes around my office if I'm not hypervigilant about cleanliness. I've been known to spray people with Lysol if they cough in my cube

Anyway, feel free to PM me if you want to talk offline about this. I've been through a lot of drugs and 12 or so years of treatment for autoimmune issues. It sucks sometimes, but life goes on.

Good luck. Keep riding. You just might find it does you major good.
Muirenn2011-02-18 01:38:13 +0000 #6
Agree with everyone

Plus, make sure you are very well-rested. Evaluate yourself before your ride, make sure you feel good enough to benefit from the activity rather than be hurt by it.

You mentioned carrying a little extra weight? That makes me wonder if you are eating very healthy, nutrient-rich food. You need to eat better than the average person to help yourself be at your strongest.

Suggest looking into healthy eating and lifestyle. Maybe check out the nutrition area on this forum?

Remember, every time you eat is an opportunity to become more healthy.

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