Exercise and Recurrence

• By jmaze
• Posted July 10, 2008 at 12:16 pm

Hello. I'm actually considering cancelling my gym membership until I feel better. Before my sarcoid re-reared it's ugly head, I was working out to lose weight and firm up somewhat aggressively. 4-5 times a week and I actually paid a trainer to work some stuff with me for 4 sessions for firming and strength (like you, not body building). Now, I can hardly handle the tread mill and light weights. My pulmonary doc tells me "good, stay active and get your exercise" but it's getting to where I would rather save my energy for work and family.

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• By Michele5
• Posted July 10, 2008 at 1:47 pm

I used to exercise daily, and also lift weights about three times a week. I don't have that amount of energy any more, although I keep telling myself just to get back into it. But the last two times I used the weight machine at the gym I got nauseated and dizzy. Using the treadmill and walking outside are a lot easier, and I think that doing that kind of exercise would be the best way for me to go right now. It's a habit that I have to get back into.

So to answer your question, yes, my workouts decreased with time, from high energy aerobic classes to walking on a treadmill. I've never been a body builder, but I used to be able to do upper and lower toning with a weight machine no problem.

Michele

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• By anxious
• Posted July 10, 2008 at 3:46 pm

I was diagnosed with sarcoid back in 2001, and stated weight training in late 2002. The first few years I felt good, but recently (since last year) I have found myself getting tired quickly and feel drained after most workouts. I changed my routine around a bit and still keep changing it around. I've gone 5 days a week (strictly heavy weight training) to 3 days a week and now back to 5 with cardio...this gives my body a good rest as I switch about every 2 months. Also, went from doing 4-5 heavy sets with 10 reps to 3-4 sets with 10 reps but not as heavy...then do 30 mins cardio after, either walk or combo of jog and walk on the treadmill...seems to work for me...but there are some days I don't feel like doing anything so I just rest.
Good luck!

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• By SarcoidPrincess
• Posted July 10, 2008 at 5:11 pm

I joined Curves a year ago. I was doing good going three times a week religiously. One day I couldn't walk and then the breathing thing started. Since then its been all most impossible for me to excersice. I try but after a few days I get a flare-up of symptoms. For myself its depressing because I really need to loose weight!

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• By hil
• Posted July 10, 2008 at 5:54 pm

It is so nice to hear similar stories! I was diagnosed with pulmonary sarcoid in 2004. No symptoms other than a cough which quickly went away. But for years I've also had asthma, allergies, and sinusitis and general fatigue and "not feeling well" that hit me for a couple of days to a couple of months. Not sure if the general malaise is sarc or not but it all seems interrelated. Anyway, if I go to the gym when I'm feeling crappy or push myself too hard when not quite at my best, then I will predictably get these fatique and feeling crappy symptoms for several days after. So, the key is to listen to your body and don't push it. As TG said in another thread, do what you can on the days you feel good, but listen to your body and give yourself permission to feel crappy and rest when necessary. If I'm feeling only mildly unwell and I'm really tempted to go the gym but suspect it might be too much (like today, sigh) I choose to go for a long walk and do some yoga instead. Its frustrating because I'd rather have a regular schedule of cardio and weights. But I do find mild exercise really helps to combat those feelings of depression (and weight gain) that are associated with NOT exercising. I try to remind myself that I don't have to be a triathlete or a body builder, I just need to stay active to the best I can and be easy on myself when I can't.

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• By seaswmr
• Posted July 10, 2008 at 6:00 pm

Thank you all so much for the input. It makes me feel so much better to know I am not the only one. Walking and yoga may be my next plan. Thanks again.

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• By jbrock
• Posted July 11, 2008 at 8:20 am

I couldn't add anything else to this. You guys are right on the money! I exercise 5 times a week (if I'm tired) then I don't. I'm thinking that i need to step up my exercise routine though! You guys have me beat! Take care and I'm gald that you feel better. I've always wanted to do yoga.

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• By RuthfromOz
• Posted July 13, 2008 at 8:50 pm

I have always enjoyed long walks, even when they happened from necessity rather than choice (no car after my first marriage ended, then lost my licence when diagnosed with epilepsy). Two years ago I had a pretty massive sarc flare-up and suddenly walking 500 metres (about 550 yards) to the nearest bus stop became a struggle. Even the slightest thought of going to a gym was laughable - I wouldn't have made it in the door! I spent 20 months on prednisone and have now been on methotrexate for almost 6 months and am finally getting to the point where I can walk 2 blocks in my lunch hour without almost collapsing, although the aches, pains and other weird stuff in my knees and feet make it problematic sometimes.

I think if you can exercise at all, you're doing fantastic. Enjoy what you can do and on the days you're feeling good, do a sit-up or two for those of us who can't.

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• By bmonkmom41
• Posted July 13, 2008 at 11:09 pm

I have never joined a support group before. I have been diagnosed since 1992. I gained a lot of weight from steroid use off and on. I had a lap band and started exercising with weights 3x week and cardio for 1 hour a day x 6days. Now I have pulmonary hypertension and can not exercise. I plan to try yoga and mild pilates to keep active. It is nice to see I am not alone.

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• By Tawney
• Posted July 15, 2008 at 9:33 pm

Back in the "good old days" I guess I was a bit of an exercise junkie. I'd do something aerobic before work in the mornings and go for a long walk after work (which I found relaxing and a great way to stomp off the day's stresses) and then throw in a ballet class here and there. In the early days of wishy washy symptoms when I still in denial that something was wrong, my aerobic thing then was running up and down steps at home. I kept finding that mid-run, I'd be trembling from head to toe and couldn't stand up any more and the next day I'd be semi-comatose. Then I suddenly lost too many kilos and I gave in and gave up the step running. Then the arthritis set in and my muscles started cramping and there went the dance classes. So it's just walking now for me. Have to keep half a thought on keeping my breathing regulated whilst I'm walking because it gets knocked out of synch really easily these days and it's a bit embarrassing gasping for air at the side of the road. Walking is good for me - keeps me moving, keeps the blues at bay and I just feel better knowing I made the effort. It's true what they say, the hardest part is putting your shoes on...the walking bit is easy!

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• By Tewa
• Posted July 15, 2008 at 11:01 pm

Yeah - at least we are all trying, right?

Worked out today for the first time in seven months...like theGardner said: sarc and flab or sarc and muscle (or words to that affect.)

I have a sign on the wall between my weight machine and the treadmill. It says:
I WILL start over again
If I have to
Every time I have to
But I will
Not
Quit

In the past year and a half (since first autoimmune dx) I have "started over again" approximately seven times. I kid you not. I have lost and gained back 20 pounds of fat and muscle...
This latest dx of Sarc threw me into a deep dark pit of depression (I'm sure you all are familiar with it), BUT reading all of your posts for the past two weeks has (thankfully) reminded me to read my poster, get off my butt and at least try. For that I thank you all. Going to daily Mass has helped a bunch as well.
So - if it helps - hang up your own poster...get this: I wrote that for a character in the novel I'm working on then decided I needed it every bit as bad as he did. :)

I will not quit - not today.
be well - have a better day tomorrow.
T

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• By Greenhulk
• Posted August 13, 2008 at 5:38 pm

hi, i have been lifting weights for over 20 years but the Sarcoidosis makes it harder for me to train, i feel okay doing a workout, but if i do too much 2 days later i feel depressed and i become agressive and angry, could the Sarcoidosis be affecting my hormones?

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• By Tammy5
• Posted August 14, 2008 at 3:44 pm

Hi! I was reading all of the comments and wanted to add my own... I was diagnosed with pulmonary sarcoidosis in Feb 2005. It was a difficult thing to learn. Prior to diagnosis I suffered from exhaustion, coughing, shortness of breath, chest pain.. all the usual symptoms (I still suffer from them). The most challenging is being tired ALL the time. Regardless, I go to the gym 5-7 times a week. I work with a trainer (strength training) and use the treadmill to work on cardio. It is challenging and difficult. I have such a hard time breathing and making things work. I have had to stop workouts because I am shaking and can't catch my breath.. or coughing so hard I vomit. I still make myself go... every day. Slowly, my endurance has been building. The first time I could walk up the stairs at work without gasping at the top.. well, I felt like I had accomplished so much. I am now up to walking 2.5 miles a day in 37 minutes. Any variation in my respirations sends me in to coughing fits... My life has become working, gym and sleeping. I am always sooo tired. My endurance is increasing and I am breathing deeper than I have since my lung surgery. I think it's worth the pain and exhaustion to get here.. as always, check with your doctor FIRST before starting any exercise program.

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• By jbrock
• Posted August 14, 2008 at 4:43 pm

wow! I admire you! Exercising 5 days a week even if you feel crappy! I'm trying to decide if I should go to the gym today or just go home. I think I'll go home. Maybe i'll walk when i get home. That's interesting to know that your endurance increases though. I really love to exercise and try to but....

I don't know maybe i will!

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• By Boendoek
• Posted August 15, 2008 at 3:37 am

I found out that I risk a serious flare-up when starting exercising (I used to do a lot of mountainbiking). My doctor told me that I should get into remission first and taper off the prednisone before even thinking about exercising again. I live in the Netherlands so maybe doctors here think different about this issue?

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