Hi, this looks like a really useful way of sharing and passing information. I wonder if I could ask a question about exercise while here.
As a quick intro, I am male and 61 in March. I was diagnosed a couple of years ago following a rather strange dose of RA which dated back to 2005. I think I may have had Sjogrens symptoms for years without really knowing.
A few years ago I took up running and more recently triathlons. At the end of last season (September 2010) I managed to get the mother of all swellings in my left parotid gland that took a month in hospital to get under control, and various tablets through to this January. Having for the last month been hard training again for this season I seem to be suffering another flare up.
The question I'd like to ask, is there any known link between exercise and flare-ups?
Bob
Hi Bob
Glad you've joined us! I think exercise probably can induce a flare. I know for me, walking further than usual can make me feel really unwell in the following days.
I think you will get lots of replies from different people as we are all so different, even though we all have similar symptoms.
Kathyx
Bob,
I don't know the answer to your question, but I'm married to a marathon/triathlon devotee, so I know how important it is for you. Chances are that you would have had the parotid problem even without your running. Sometimes a flare seems to follow a period of stress - physical, emotional, or whatever - other times there is no apparent rhyme or reason. I hope that you are able to keep up your training through this. Good luck!
Cheryl
Cheryl, that was the perfect answer, thank you.
I've been looking round the forum and can clearly see that a lot of people seem to be suffering more debilitating conditions than mine. For the most part I feel okay, a bit achy from time to time. It's this flare up of the pirotid that stops me working and the darn tablets and drips that mess with my motivation.
However I guess I should just be incredibly grateful my condition appears not to affect the things I love doing.
Bob
Welcome. I lost my exercise fetish decades ago. I still practice range of motion, like Tai Chi, and isometrics.
Hi BobC50,
Let me also welcome you to the SJS World and family! I'm glad that you've had a chance to look around the ethers here, and I lose myself there when I can. :D
Take care of yourself -
Patze
Hi Bob :)
Welcome to Sjogren's world from me too!
Take care - Scottie :)
Hi Patze, and thanks for the welcome.
What is taking me by surprise is a) the amount that people know about their condition and b) how wide ranging the symptoms and degree of severity seems to be.
It does look like I am really lucky having what seems to be fairly mild symptoms so I can get on with doing the things I want to do. As far as exercise goes, and I do a fair amount of it, the most difficult part is putting the trainers on in the first place. Once they are on I might just as well get on out and do the exercise.
In the unlikely event that anyone is interested my typical week is working from 07:30 until 16:00 and then:
Monday Swimming 1000 - 2000 metres
Tuesday Jogging 30 - 40 minutes
Wedensday Swimming 1000 - 2000 metres
Thursday Running 30 - 40 minutes (more speed than Tuesday)
Friday Gym 10 minutes on treamill to warm up and an hour on the weights
Saturday Cycling 60 - 80 minute bike ride plus immediately a 10 - 20 minutes run
Sunday Cycling 75 - 120 mins slow ride.
No smoking or alcohol, vegetarian diet. (not sure if that is relevant?)
For 2011 I have entered a number of Triathlon competitions and I think it is this that keeps me very highly motivated. It also makes me think that my level of severity is on the low side on the scale of horribleness.
Bob
Wow Bob, I'm seriously impressed!!!!! The amount of training you do is just amazing! There are days that I can barely get out of my own way. ;) :D
If you ever want to bottle your energy and sell it, I'll be one of the first ones in line to buy it! ;D
I'm glad that you've found us, and I hope that you'll be able to join us in chat one day soon. You can get the chat by clicking on the chat opinion in the top middle portion of this page.
Take care of yourself -
Patze
Hi Bob - welcome.
Wow, you have a tough workout to keep yourself in shape for the Triathlons! :o More power to you if you can do all that. You might need to give your body a rest in-between some of that rigorous workout.
There have been other members who did Triathlons and running. If you put that into the search box at the top left of this page, it will take you to previous threads about it. The search box is good for any kind of information you are looking for. If you can't find what you're looking for, by all means, start your own thread.
Does your Sjogren's affect your eyes or mouth? That would be something you also have to take into consideration if you are competing in Triathlons - to keep yourself hydrated and your eyes comfortable.
I hope you find this site helpful to you in your Sjogren's journey.
Bucky
Hi Bucky,
Many thanks for the contact.
One of my early symptoms was the dry mouth, I couldn't eat anything like a biscuit without additional liquid. I have been in the habit of having one of the large water bottles that cyclists use with me at all times. Not that practical when swimming though ;D
The dry mouth is a double edge sword really, at least I don't spit like most sportsmen but I do have to plan liquid intake when exercising for more than 30 minutes. I do suffer with dry eyes but it doesn't seem to trouble me very much.
Thanks for pointing me to the other posts, I'll get right to it.
Bob
Bob - here's a link to one of the discussions: https://sjogrensworld.org/index.php?topic=14185.0
Bucky
Welcome to Sjogrens World Bob.
I know if I overdo myself by walking the dog further then I normally do, or playing with the kids more then I should do, I get extremely tired and my joints really start aching, and this can last quite a few days.
So I would presume exercise can bring flares on.
Hi Bob,
Allow me to also welcome you to the forum! :) It's wonderful that you are able to be involved in triathlons! My husband and I have a nephew who's a triathloner, and he's very dedicated to training, as it certainly sounds as if you are.
You wrote that you were surprised by:
1) the fact that so many of us are aware of our condition.
To that I would respond that for some it has taken years for us to get someone to diagnose us and treat us properly. For me, I feel empowered by the fact I finally know what's wrong. Now I know what I am fighting... ;)
2) the range and severity of issues and symptoms.
That's really a correct assessment! Some people have very few symptoms and go on with their lives without many issues. It runs the gamut here from that person to those who are severely debilitated by this disease. I'd say more of us here have moderate-to-sometimes severe issues. As a wise person here once stated, those who are out living their lives without many problems aren't here on the boards. They are out working, running marathons, and living their busy lives!
Those who are doing very well like you are just as welcome here as anyone else. And it's good to hear that you're doing well. We always can use some good and positive outlooks! Good luck in your training. As Patze said, if you ever want to bottle some of your energy, I think you'd make millions just from us! ;D
Melinda
Hi Melinda,
Thank you very much for responding.
Firstly I do realise that my condition is pretty mild compared with a lot of people on here, and I guess you are right that a lot of people with very mild symptoms are not concerned about joining in the forum, but getting on with things.
On another thread on this forum I have had a couple of different answers about exercise and flare-ups, again there seems to be no constant rhyme or reason for what people are experiencing at the moment.
I'm going to try and ask some questions to tease out whether pain after exercise hapens sometimes or always, or never of course, and then see if I can whittle that down to whether the pains are related to just the limb/muscles used or whether everything is affected. I don't think it'll move our knowledge on much but I am fascinated to know.
Bob
Hi Bob,
My name is Elizabeth. I'm now 33 yrs old and was diagnosed summer of last year. I have been on Plaquenil and have noticed a big improvement. Knowing what I do now about the disease, I know that I've had it for many years. My last half ironman was in the fall of 2005. I started going down hill shortly after that. I just attributed all the exhaustion and nerve, muscle and joint pain to my work schedule and over use. But I just couldn't bring myself to exercise anything like I did to train for tri's. So I didn't do another one until the summer of 2009 (when my son was 7 months). It was all I could do to finish a sprint. I was glad I did it, but extremely hard on myself for my terrible performance.
Now that I feel a bit better I'm getting in to training again. My week looks nothing like yours, as I have three kids to take care of, a full time job, and a dirty house to come home to. I just don't have the energy to put in the time anymore. I can't bring myself to get up early enough to work out before getting the kids up. I still have bad fatigue, some nerve and muscle pain, arthritis in my ribs and collar bones, and bursitis in both my hips.
What I have found about exercise is that it exacerbates my flares. I'm on the tail end of a flare, so I decided to run outside. At the end of three miles, I felt terrible. My nervous system is affected by Sjogren's. I get that intense butterfly feeling in my extremeties, especially my arms, that won't go away. And you know that feeling you get right when your hair is standing up on the back of your neck, or you're getting goose bumps? I get that intense feeling all over, and it won't go away. It happens whenever I run outside. And that feeling stays for at least an hour after I get back inside. I used to think it was a side effect of Evoxac (and it may be), but it's the UV light. Like lupus sufferers, photosensitivity can trigger or increase a flare in several autoimmune diseases. I work in an office building with fluorescent lights, and during my flares I can barely bring myself to work in there. Being outside in the shade (or being in the dark) makes me feel better within minutes.
I have also found that, physically, exercise makes me more tired and therefore less able to forget about pain and discomfort. Sometimes I know that I just shouldn't work out, and instead just make myself go for a walk. The biggest battle I still fighting is comparing my old abilities to my new abilities. I still haven't accepted the fact that I will likely never run a half distance again. And if I do I shouldn't even be bothered with the time it would take me to race. I still find that I check my watch after every workout session, only to be disappointed that I'm so slow (compared to my former self). I have two sprint races coming up next month and am seriously worried that I will spend most of the race walking.
So my comments to your problem with working out are: 1) It's possible that your outdoors workouts are really making you sick. For days you're not feeling right, I would stay inside (away from fluorescent lights), or run and bike at dusk (with reflective clothes :) ). 2) Stressing your body does make you feel worse. I'm still working on changing my mindset that I can't do everything I used to; that even a little is better than nothing; and that some days it's better to go for a walk.
I wish you all the luck with your upcoming races (I'm jealous). And I'm very glad you do have the energy to do what you are currently doing. I would suggest that you look in to altering your workouts to take advantage of drills and other practices that increase the quality of your workout. You may be able to cut some time/miles while still achieving your pace and distance goals. And less sun exposure, and less stress on your body, may help lessen the negative aspects of your exercise routine.
Elizabeth