Anyone with Lupus or similar?

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.

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.

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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.

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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 :)

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!

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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.

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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 :D

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.

I agree strongly with the suggestion of making sure you are rested. While I don't have Lupus, a couple of years ago, I thought I might have it. It seems that I probably have Fibromyalgia, with a slightly strange presentation, but I do have some weird genetic markers for autoimmune disease, particularly, colitis, which runs in my family.
I find it's a fine line between exercise making me feel better and making me feel worse. My problem is that I don't necessarily want to "slow down, go easier, do less." My rheumo. once told me to "ride 5 miles..." This from a guy who likes to ride around town in his bathing suit, no shirt, on his old Raleigh with cages on it! I do pay attention to how I feel before a ride or run. My speed is slower, overall, but this year, I rode my most, ever (3,200 miles +).
I now see a pattern. I train for some goal, usually a tour in the beginning of the season. Whenever that is over, it's like my body has done too much and I start getting symptoms, or feeling bad. Late summer/early fall seems to be the time this happens. I'm not going to stop, but I do have to pay attention more.

I was dx'd with lupus 15 years ago. My rhuemie moved & my new rhuemie says it isn't lupus - it's UCTD. The diagnosis of lupus is difficult. I take meloxicam daily for the pain and it helps. I also take a product recommended by my allopathic md called Cosamin ASU (cheapest on amazon) and it helps too. Fish oil is good. Diet MUST be pristine. I haven't had a fast food anything in many years. Chocolate flares me :mad::mad: - so not fair!!

Get good sleep. You will learn to listen to your body. I don't avoid workouts on flare days, but I go very easy. Light spinning on flat surfaces or a mini weight workout. Helps my head - tells me I'm not an invalid.

On good days, most days are good, I will push my workouts. I lift weights to keep strong bones & muscles to support joints. I highly recommend it. I do intervals & I teach spinning. You CAN adjust & adapt.

I just read some stuff on UCTD. It sounds very much like what I have, more than fibromyalgia; I was especially interested in the fact that one of the symptoms is unexplained bruising right under the skin. No one has been able to explain that symptom to me. On the other hand, even though it's been 3 years since I had all of the autoimmune testing, I am pretty sure I did not have a high ANA count, which seems to be standard for UCTD dx.
Well, I haven't seen my rheumo. in over a year, as I pretty much know how to make myself feel better. I've been lazy in following through with the massage and acupuncture, so I really do have to get back to that. All very interesting.

Late posting to this thread, but I have lupus. Everyone is different and what works from some, does not always work for others. My lupus is not really under control and I take a lot of medicine, currently going for infusions of Rutuxin, which has seemed to help. Up until a few years ago I was able to run half marathons and bike for long periods of time. Right now I am happy being able to run for 3 miles or bike for 45 mins. I don't think exercise makes me worse, but when I am not feeling my best exercise will make me more fatigued and achy. My doc gauges how I am doing based on if I am running, lol. No matter what, I do something though. Over the summer I did a lot of walking. I was getting depressed with biking because of how I felt afterwards, but I know even if I rested, I would not feel better. Do what you can. If you have an questions feel free to pm me.

I don't know if you know it, but lupus patients are usually very sun sensitive so make sure you wear good sunscreen. Flares can be caused by the sun. I try to get out early or before daylight (I work and sometimes I have to be out early).

Hello,
I am so thankful to read of other woman that cycle and struggle with Lupus.
I have Lupus, Cryoglobulenemia and Chiari. I had brin surgery four years ago but still get pain from riding. This past weekend was my first century in over a year, I had a horrible flair up. I think it was mostly from the sun. I typically ride 4-5 days a week, with my shortest rides at 25 and until Saturday longer rides at 80. I have a 600+ ride coming up in September to raise money for a non profit, and would love any pointers that you woman can share regarding training and still honoring my body.
I wish there was a way we could all cycle together!!!
With peace,
Colleen

Wow Colleen. You are really inspiring. Amazing.

Take care of yourself.

One of my favorite bloggers, a triathlete with fibromyalgia: http://tribeyondlimits.blogspot.com/...=1311049784801

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Originally Posted by CyclingColleen

Hello,
I am so thankful to read of other woman that cycle and struggle with Lupus.
I have Lupus, Cryoglobulenemia and Chiari. I had brin surgery four years ago but still get pain from riding. This past weekend was my first century in over a year, I had a horrible flair up. I think it was mostly from the sun. I typically ride 4-5 days a week, with my shortest rides at 25 and until Saturday longer rides at 80. I have a 600+ ride coming up in September to raise money for a non profit, and would love any pointers that you woman can share regarding training and still honoring my body.
I wish there was a way we could all cycle together!!!
With peace,
Colleen

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Wouldn't it be great to be able to ride with other ladies with similar issues? I've been tossing around the idea of a riding group for sick chicks in my area. Too often the regular folks just don't get that some days even getting your arse onto the bike can be a major win, let alone riding any distance.