Hi there,
before Sj?gren?s caught me I used to be a runner and did Marathons, too. I read here on the forum that many of you benefit from exercise, even if it?s just moderate at best. For me this is so frustrating. My worst Sj?gren?s symptom is fatigue and often times I am barely able to get out of bed, especially when I am experiencing a flare of Sj?gren?s. Running, or any other exercise (like 15 minutes of slow biking) makes everything just worse. I feel terrible after even the slightest exercise.
Can anyone of you relate to that? I also have thyroid issues ("Basedow?s" desease in German)....
About a year before we found my SS-A antibody, and my first rheumatologist, my most FAVORITE thing in the world was cardio-kickboxing. I would spend 8 hours at the gym, easy...and I loved it.
Then one day my lungs began drying out (Sjogren's). I started to see a pulmonologist who put me on Symbicort 160/4.5 ultimately with Ventolin for rescue. I got two further dx's... Chronic bronchitis and COPD. I sleep with air purifiers now. My lungs don't handle the slightest pollution well. I can't tell you how many times I had to stop in kickboxing class because my lungs couldn't handle it. After a downhill progression for the past 3 years I turned in my Gym membership. Two years I gave up but retained my membership until this year reality caught up with me.
It is such a powerless feeling. I understand your fatigue, because it's mine too.
My heart goes out to you and thanks to everyone who answered this because it nearly makes me cry to read these posts. My story, too. I used to belong to several exercise groups including Jazzercise. I am someone who likes to get a work out at home with my push mower, gardening, and walking dogs. All are such a struggle I am having a very hard time adjusting. If I give it a go....say, for a 15 minute spurt of scraping paint off my garage doors so I can repaint (this is a weird example maybe but a current project that I'm having a heck of a time completing), my arms feel like I've been doing heavy weight lifting. My rheumatologist said "you can't sustain lifting arms for any given time frame". But did not explain why.
I get very frustrated when others say "exercise! it will pull you out of this funk!" I am doing my best, as you all are to be who we were.
I used to be a runner too. I miss it. I can no longer run at all. I have just started doing some daily exercise & I'm finding as long as it is not strenuous I feel better.
If I push myself I won't be able to get out of bed. For me it is a very slow process and I'm slowly increasing what I can do.
Exercise that I can do now (if slow & moderate) are: recumbant bike (I'm up to 20 minutes!but very slow pace), free weights (not very many reps), and a little pool "walking."
I am thinking of adding in walking on a treadmill again. I'm trying to build strength & endurance & all around good health.
It is very frustrating for anyone with a chronic illness to try to exercise. First it takes a ton of energy! I literally started at 3 minutes a day.
Exercise has helped with my energy & my aches but if I push it I know I will end up in a flare so if I add exercise on a day, I won't do something else that takes energy.
I think we all understand what you are going through. 2 years ago I was bed-bound & if someone told me to exercise I would have freaked because walking to the bathroom without help took all my energy for the day!
Good luck, I have found slow & steady has worked for me.
I hope you are on medication for Sjogrens. Plaquenil can help with pain and fatigue for some.
I find I can do moderate exercise now...I walk and listen to music often. If helps me sleep through the night as I had problems with insomnia. I too find that if I work out too hard I get occular migraines and feel faint. So no tennis for me anymore. I might pass out. Also I can not take the heat anymore. I walk early morning or after dusk when it has cooled off.
But I am thankful that I can at least walk and enjoy the scenery.
MirkeshCat if you search on exercise and fatigue you should find a question and answers I posed about this a month or two ago.
I too struggle to exercise. Now I walk for shorter amounts of time (I used to walk for 30 minutes, fast, almost everyday), do yoga once or twice a week instead of three or four, and try to use exercise bands. Sometimes I'm good, sometimes I ache for a couple of days. Thankfully, acetaminophen helps with the pain.
After my rheumy told me that what is happening is at a cellular level I realized that dealing SjS is really life changing and to help manage it I had to change my life. The good news is that meds, diet changes, etc. have enhanced my quality of life a lot (I couldn't do much two to three years ago, I now have a life that is more "normal").
Hang in there.
I've been having a terrible time getting out of bed at all. Weekly grocery shopping feels like running a mile. I can swim 15 minutes a day, but lying around has contributed to my weight gain and makes my back and joint pain worse. For the last 2 days I've tried a new plan. I set my timer on my iPhone to 15 minutes and alternate lying down with walking around my house and puttering. I hope I can increase this without setting off a flare.
Has anyone tried taking a really strong pain medicine? Did that help anyone with the extreme fatigue that I have, that the previous posters are describing?
Three years ago I was spending most of my life on the couch. Some days I could barely make it up one flight of stairs. Putting dishes away from the dishwasher was a half-day task.
Now I am on Plaquenil, Methotrexate, and 5mg Prednisone (I hope to eliminate the Prednisone in the fall), I have addressed sleep issues, changed my diet to gluten-free, dairy-free, soy-free, no processed foods, and extremely low grain/sugar, and I feel ALMOST like a "normal person" - I am very active at home, walk my dog 3 miles a day, garden, and work 25 hours a week as a horse trainer. I am absolutely amazed at the change.
For a while I was just on the drugs, and that was not enough - I had to change my diet, too. When I eat the wrong thing - or have too many carbs/sugars, I feel that achy lethargy and fatigue creeping in again. But it is so amazing to feel good again that I seldom slip up anymore on the diet.
I am not saying it is that easy, or those things will work for everybody - this disease is so cruel because it takes many forms and affects individuals so differently....but I would really urge people to continually work with their doctors to push for better quality-of-life - whether that means trying a new prescription, or working with a nutritionist to change diet habits, or seeing a sleep specialist to maximize good rest - or, as I did, doing your own research on all these things and then discussing it with your doc and simply trying things to see what works.
Don't just accept it - always look for improvement! Believe me, I know it is sooooooo hard to do when you are feeling awful. But don't lose hope that there is something out there to help you. You may not run marathons again, but any improvement is worth reaching for.
When I have had very severe pain and couldn't think of exercising, the only thing that I could do was concentrate on my breathing, getting into fresh air, breathing exercise, visualizing how it can help heal.
There are a few good Youtube videos on this kind of healing breathing.
The first website I found on the subject this morning was:
http://www.howtocopewithpain.org/resources/breathing-exercises-2.html
Then there are therapies and programs like yoga that provide insight into breathing methods. I know this all may sound a bit simplistic but it has helped me.
Thank you all for your answers! It feels good to know that I am not alone with my fatigue/exercise problem though of course I am not happy that you guys have problems! I pray to god every day that I will be able to work and exercise again. The fatigue is just too much and I am getting fat due to lack of exercise whilst I used to be a slim and trim person. :'(
I went from couch/bed bound to climbing stairs a half dozen times a day. I didn't start moving more until my pain was addressed. Now I can function and am less fatigued - whether it is the result /side effect of the RX or more moving or both I just flat feel better. I have a weekly pain patch I use and it gave me some life back!
I ran for a few years until this past winter. It was just too cold and it hurt my lungs. Then we really didn't have a spring in PA so my hopes of starting back up in Spring didn't happen. Now it is way too hot and I'm not conditioned.
I did get myself a bike but I've made so many excuses lately. I do want to start back up. Seriously. I do. I miss running.