I really enjoy running and have set out to train for a half marathon twice, but can't seem to stay uninjured long enough. Just curious to see how others w sjs who are runners deal...
Wish I could run. Last time I did was about age 3. That's 40 years ago.Good luck to you! Hope you get well enough to put your running shoes back on.!
Hi there. Yes, I'm a runner. I've been running for about 22 years and I have been racing on and off since 2004 (in between my two pregnancies). In the past two years I've done a slew of 5Ks, 5 milers and 10Ks. Last spring I trained for and ran my first half marathon. It was incredible. Then I was diagnosed with SjS in August. I stopped running for several weeks because I was so bummed but then I decided to say screw it, I'm doing it anyway. It's the least I can do for my body right now....maybe it's crazy but I feel like I can be healthy in this one way since I'm not in others. Who knows what the future holds, either, I may not be able to be active at all eventually. It's hard enough to get up in the morning as it is.....My mouth gets dry when I run so I try to chew gum. I always carry chap stick and layer on the sunscreen. I also have a chronic cough, not sure if it's asthma or just general dryness in my airways, so I use an inhaler before I head out. When I'm motivated I run about 2-3 times a week and cross train on the other days so my body doesn't get strained from any one thing. I just decided to sign up for another half marathon in April and am running with a group of mom friends who will be running their first. I'm actually wondering if there's some way to raise money for SjS research or the Faustman Lab through my race. I'd love to chat more with you about training plans, etc.
I used to run cross country.
I used to swim a lot too.
Not a chance now ...
I'm lucky to be able to go downstairs to do my laundry.
Yes! I've run 13 marathons, between 1999 and my last one in 2008. I started having problems breathing and with muscle fatigue and dizziness so had to really cut back. But after two years of treatment I'm getting back into it. I MAY try to do a half in March, we'll see. I definitely feel a lot worse and more achy when I don't exercise.
I also said "screw it!" and decided not to give in to fear, and keep doing what I love for as long as I can.
Nice to hear from you :)
I used to run a bit - not nearly marathons or anything else. I mainly don't because of time right now (3 kids and had a job - lost it but am looking; and now it's too cold for my tastes to run).
I run too,, from one doctor to another, I think from now on i;l walk
Can always count on you for a good laugh right before bed. Thanks Navydad.
Bless all you runners who can still do it. ;) I say, keep up with whatever you can and go for it.
I used to LOVE to run, just for the fun and exhileration of it. I ran on track teams in school and loved it. Used to play tennis...oh, well that's in the "used to" list now. I'm in that catagory now that if I can possibly get the vacumn run about once a week or walk into the grocery to get a few things, I'm excited. ;D And it can't be both on the same day... (:
I'm also a runner. I WAS training for my first half-marathon, and even signed up for it and paid, and discovered
much to my chagrin that I couldn't seem to get past the 5-mile training runs...would get SO exhausted and out-of-breath
that I had to stop...well, a few weeks later, I was diagnosed with Sjogren's. Then it made sense. Anyway, on the
prednisone, I ran a fast (for me...I'm a fairly slow runner...9-minute-miles) and terrific 3 miles a few days ago, and was
so encouraged by that. I'm HOPING when I switch to Plaquenil that it will ease my symptoms enough that I can continue
running. I'm with those of you that said, "SCREW IT! I'm going to run." :) We've got to keep trying...
I gave up sprint triathlons at age 50. Everything breaks and tears now.
Hi,
I'm a newbie on here and was looking for some sort of indication about Sjogrens and exercise. It seems that I have been really lucky, although disgnosed with the condition and get flare ups of the pirotid and lymph glands occasionally, the dryness and joint pains I seem to be relatively free form the really debilitating things.
I was wondering if exercise prompted flare-ups or if they were just random. Certainly I haven't really established a link from my own experience but I would like to hear from other 'active' members.
The most difficult thing seems to me to be mental, overcoming the desire to not do it. Again is this a common experience?
Should mention that I train for triathlon for 30 - 60 minutes, usually every day. I have a full time job too.
Many thanks
Bob
I haven't really made a connection between exercise and flares, except when I am flaring, the desire to do any kind of exercise quickly goes out the window. That's one of the hardest things to fight I find. Exercise can help you feel better by the endorphins, but the fatigue is a killer.
Last year I was a size 4, one year later I doubled my weight and I can't hardly walk.. I worked out every day, loved it then, I crashed and I never went back!
Navydad you say it the best.. that's all I do now!!! SAD so SAD :-[ :-[ Last night I went for a walk around the block with my husband, I was up all night long in horrible
pain...I will keep trying because I know I need to try!
Mary
Hi, Bob. I'm still trying to train for a half marathon (see my previous post), but 8 miles feels like a death march. I keep trying, but I do notice my motivation is not what it used to be.
I used to LOVE long distances, but can't seem to get back there. Not saying it's the Sjs, may be just a mental block.
Let's keep hashing it over and maybe together we'll figure it out! ;)
I can't run, but I'm a "mean" walker! I have a hard time in the winter due to asthma, but really enjoy walking during my lunch hour in the Spring, Summer and Fall.
Keep it up guys/gals! Fresh air is amazing for the psyche.
Hi Babs659,
Thanks for your post.
I am curious about the exercise and pain part. Also very interested in the motivation levels too.
The reason I am doing as much exercise as I am is because I have committed myself to a number of competitions. AND told everyone about them too so there is now an embarrasment factor involved as well. Training leaves me achy, but at the moment only what I'd expect for the effort put in.
Just running 8 miles is tough, and as you say not quite enough if the target is 13.2 Would it help if you committed to an event to see if the motivations gets you through the discomfort?
Bob
My pain is really minimal. Like you said, if I overdo it my hips, etc. hurt. Right now my biggest problem is this dang NY winter! Makes it real tough to get motivated.
I guess another discomfort is just the fatigue level. Feels like a monumental effort sometimes. It may be that I've deconditioned, but I get kinda dizzy when I run too long or try to keep up with others.
I'm actually afraid to commit to the half because the last time I did it I really suffered for the last 4 miles. I wanted to just sit down on the curb!
Hey guys, I am committed to the Rutgers Half in April. I am up to 9 miles. I was pooped after 5 last weekend but a friend showed up and got me through the next 4. Afterwards I felt amazing (aside from the dry eyes and chapped lips). I was doing yoga regularly up until a month ago and I feel like that helped keep me stretched out. I do a fair amount of stretching after running to combat soreness. I also get dizzy sometimes and try to push through it. Hope one of these days someone doesn't find me passed out on the side of the road. I think right now my desire to tell Sjogren's it can't take this away from me is getting me by. I'll never know which race will be my last and I'm not ready for that yet.
But I used to run and have energy all day afterwards. Now the long runs really drain me. I'd be fine wearing my spot out on the couch the rest of the day.
How about we raise money for research for motivation?
Quote from: shortstuff on February 09, 2011, 02:27:13 PM
Hey guys, I am committed to the Rutgers Half in April. I am up to 9 miles. I was pooped after 5 last weekend but a friend showed up and got me through the next 4. Afterwards I felt amazing (aside from the dry eyes and chapped lips). I was doing yoga regularly up until a month ago and I feel like that helped keep me stretched out. I do a fair amount of stretching after running to combat soreness. I also get dizzy sometimes and try to push through it. Hope one of these days someone doesn't find me passed out on the side of the road. I think right now my desire to tell Sjogren's it can't take this away from me is getting me by. I'll never know which race will be my last and I'm not ready for that yet.
But I used to run and have energy all day afterwards. Now the long runs really drain me. I'd be fine wearing my spot out on the couch the rest of the day.
How about we raise money for research for motivation?
If you want me to research any ways to get motivated,, you can send me the money and i;ll research it,,
Man, I used to love those 20 milers. :(
I say hooray for all you runners!
I'm a walker and depend on yoga to keep me going.
I can go about 3 miles before my hips start screaming!
Run? ;D
susanep
Hiya, it looks like we've nearly got a whole team of runners out there.
I can see the thread of motivation being one of the two major issues, the other is how you are feeing during the run.
All we need is an index for levels of motivation, i.e. 1 = don't want to do it, won't do it through to 10 = wanted to do it and got out there.
Then of course we need something to assess how we felt when out running, and whether there was any subsequent issues.
Does that sound like a start?
Bob
I thought of getting hypnotized because I really think it's mental with me :-[
How well do you get on with 10k (6 miles)?
I just got back from a six mile hilly run. It took me 1:18. Used to do it in 58 ish. I feel better mid way than at the beginning and end, it seems.
I have a real hard time getting going for the first couple miles. Makes it hard to run with others. :-\
A hilly 10k in 78 minutes is no disgrace, and in 58 minutes is something I can only dream about. How long ago were you doing it in 58 minutes?
Generally the first 20 minutes are the hardest while the body adapts, same for everyone really. Then you normalise for a while before it gets hard work. Question though, how keen were you to get out and do it?
In my 30's and 40's I was racing 10K's between 50:00 and 57:00.
Nowadays I am keen to run if I have some company. Chatting helps a lot.
Well, I just ran right though this subject... does that count? ;)
Only if your mind was racing, too! ;)
I was reading one of the triathlon magazines in January and they had a 12 week programme that basically said slow down to get faster.
Having been on this new exercise regime since 21st January the results for me have been really interesting. Before I tell you how this new routine is going I should say that my old regime always left me aching and sore, I felt it was a part of the no pain no gain thing. Also, my performances were not that much improved despite all the effort.
So, the new low effort exercise routine, what's happened? Well I never ache after exercise any more. I have lost 5.2 kilos (11.5 lbs) since I started and I can go further at the same heart rate. Now that sounds like a plan to me.
The essence of it is working to a heart rate zone, Zone 2 to be exact. In my case:
180 - 60 (age) = 120 bpm
So that is it, I do nearly all my training now in this zone. For many people this is likely to be walking pace, it is a very slow jog for me. On the bike it is easier as the computer is easier to read and to adjust the pace to.
Having looked into this a little further I found an article from a guy called Dr Phil Maffetone. It may be of quite wide interest http://www.philmaffetone.com/jumpstart2011.cfm
Good luck
Bob
Hi:
I am not a runner but a dancer. Dancing has helped me sleep better at night and maintain stamina, strong bones.
How do I cope? I take 5mg Prednisone/day to prevent flares, TheraLife Autoimmune - which seems to relief both dry eye, dry mouth, and dry xxxx. I do take a Motrin before going dancing. I figured I better keep on dancing until the day I can no longer.
Keep it up!
Pegasus
Hi,
I have never been a runner but find that I can work out longer than ever before because now I have access to a gym and a buddy to go with me. My joints don't get achy after using the elliptical. Dancing and yoga are also great
Does anyone else have trouble with their heart rate? When I am particularly sluggish I find I can't get my HR to go up. I never tried to monitor it until recently and wonder if there is a connection between the fatigue and my sympathetic nerves not kicking in even though I am moving--feels more like I'm climbing uphill through quicksand.
"Climbing uphill through quicksand" is exactly how I felt at my sickest. I hope and pray I don't get that ill again :(