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Old 12-27-2008, 04:16 AM   #1
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Exercise tolerance

I have recently been diagnosed with Sjogren's after years of milder symptoms followed by the past "year from hell" (fatigue, yeast infections, chronic tickle in my throat leading to poor sleep, very dry mouth and eyes). I used to run marathons! My question is, does anyone out there still run or do any "strenuous" exercise?? Would it be harmful for me to push myself? After my diagnosis, the rheumie told me to "go home and read about Sjogren's" and "you need to rest" He also gave me Plaquenil and Evoxac....

 
Old 12-27-2008, 02:11 PM   #2
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Re: Exercise tolerance

Babs,

I was diagnosed while I was a DI athlete and although the symptoms were annoying, it didn't hurt me to compete and train. I pushed myself as hard as my teammates. I also know there is a professional football player with it, I don't know his name but he is a quarterback. Hope that gives you hope. This should not stop you at all.

Happy new year,
Midge

 
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Old 12-27-2008, 04:44 PM   #3
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Re: Exercise tolerance

Thanks. I'd really like to stay fit without getting sicker!

 
Old 12-28-2008, 01:27 AM   #4
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Re: Exercise tolerance

hi i live in uk and suffer from RA for 10 YEARS BEEN ON METHOTREXATE which has given me a new lease of life and kept me working . my out look was keep mobile keep going , actually no one at work knows i have it i dont have any outward damage only my toes are a bit bent . BUT now it looks like i have developed sjogrens my sister has had it for 10 years who had to retire from work because of the fatigue , she is doing ok with the aches and pains but her eyes get her down sometimes when the pollen count is high she has had afew issues with it but i can say she manages very well with it now , she does all her own gardening always shopping i would say she is managing her fatigue very well she told me the other day when she was first diagnosed she should really have given more thought to retiring instead of giving in to it i hav,nt been diagnosed yet going back to my reumatologist soon to see him ,i have constant oral thrush dry mouth dry eyes and this week every joint has been aching i have been so fatigued but back to work tommorrow going to carry on best i can and see what happens , my sister says it affects us all in different ways so just try not to dwell on it and carry on we can,t change a thing so carry on as normal . my sister is 62 now and a widow for 7 years she nursed her ill husband for 1 year so lives alone she is brilliant with her sj i have 3 sisters we all have auto immune diseases thyroid . diabetes ra sorry for going on a bit i am going to take my sisters advice and forget about the whys and wherefors and carry on thanks viv

 
Old 12-28-2008, 05:09 AM   #5
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Re: Exercise tolerance

Thanks, Viv. I feel vindicated that my symptoms finally all can be explained. It seems that as long as I am resting or moving at my own pace I am okay---not 100% but able to function. When I am stressed out or too active I feel like crap! I started on Plaquenil just three weeks ago. Will I eventually feel better and be able to resume my previous activity level?? I usd to run 20 miles a week. Like you said, I guess everyone is different, but did anyone out there "used to" have fatigue that has now resolved??

Last edited by Babs659; 12-28-2008 at 05:10 AM.

 
Old 01-05-2009, 04:47 PM   #6
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Re: Exercise tolerance

hi babs
sorry been away for a while
in answer to your question talking to my sister today she has actually had sj for 14 years not 10 how time flies .. she is fine she gets fatigued i guess but not as bad as she used to . she paces herself . as i am not diagnosed yet i feel ok up to now just the very dry mouth and my eyes are a bit sore but i am coping i work full time and as i have had rheumatoid for 10 years i think the joints are abit more achy than they used to be i assume the sj is a bit responsible for that . i am absolutley determined it won.t get me down i wouldn.t accept i had RA when i was told . apparently i had had it a number of years before i was diagnosed only though a routine xray on my feet my doctor said to me how have you been walking on your feet all your toes are very damaged and the arches on your feet have collapsed i never felt a thing i also refused methotrexate for a few years but only relented when my hands strarted hurting but upto now no deformity in hands and feet i just forget i have it and get on with life ..i try to think positive and not get any negative thoughts about the sj i know every one gets different symptoms and fatigue is a very hard thing to conquer i fought the fatigue with RA A hope i can keep it up with sj as i work full time i need to keep active i think that is the best way to keep focused i know i cant run a marathon but i never could ha ha let me know how you get on sorry to ramble on keep focusted viv

 
Old 01-05-2009, 04:51 PM   #7
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Re: Exercise tolerance

hi babs forgot to ask did you have oral yeast infections i have had it afew times now wondering if it is the dry mouth that is the cause thanks viv

 
Old 01-06-2009, 04:51 AM   #8
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Re: Exercise tolerance

I have had a number of weird symptoms in 2008 that I never had before. I had a tooth that cracked even though I take really good care of my teeth and gums. I have had little white and sore spots (canker sores?). I did have a bad vaginal yeast infection that I never in my life had before. For years I've had a dry mouth and eyes but only in the past few months has it been very bad. Does that mean more problems are coming?? Thanks, Viv...

 
Old 01-07-2009, 12:10 PM   #9
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Re: Exercise tolerance

hi babs
i know / and i forgot to mention that my sister had avery near escape regarding her teeth she nearly lost them all through sj as we have non or very little salava our teeth are at risk of decay . my sister wasn.t diagnosed for a few years because our good old british doctors hadn.t heard of the disease . what happened was the dentist did mention that her mouth was very dry . and even he didnt know what sj was so every 6 months she was getting more fillings until she was finally diagnosed and then sent away for all the info for sj
loah and behold that was the reason for the tooth decay then she read in amonthly magazine . which said she can get referered by her dentist to a special dentist consultant around 35 miles away she then asked her dentist to refer her and when she went the consultant x rayed her mouth she was appaled nearly all her teeth were so decayed inside she wasn.t sure she could save them but after 2 years of root canal fillings special cleaning going every week they managed to save them all she wasn/t informed by our doctors to clean her teeth 1 hour after every meal the consultant told her she must be meticulas with her oral hygiene and try to cut down on sugar because it is so harmful to the teeth i have been following this regime to the letter i clean my teeth every time i eat after 1 hour i have stopped taking sugar in my tea and coffee and you have to use a flouride toothpaste also and no alcohol mouth wash i chew sugerless gum a lot it produces a bit more salava i go back to my dentist in march i am going to ask him to refer me i have had 4 fillings in the last two visits in 1 year i am not going to wait as i have always been fussy about my teeth i have natural very white teeth also so i hope this has been a help to you any more questions i.m happy to answer thanks viv

 
Old 04-30-2011, 01:43 AM   #10
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Re: Exercise tolerance

Quote:
Originally Posted by Babs659 View Post
Thanks, Viv. I feel vindicated that my symptoms finally all can be explained. It seems that as long as I am resting or moving at my own pace I am okay---not 100% but able to function. When I am stressed out or too active I feel like crap! I started on Plaquenil just three weeks ago. Will I eventually feel better and be able to resume my previous activity level?? I usd to run 20 miles a week. Like you said, I guess everyone is different, but did anyone out there "used to" have fatigue that has now resolved??
I started with changing my diet and so much improved, we are working on changing habits and exercise around my day and fatigue and it is better. Already I have felt stronger, when I have examined my life and reactions to things I notice a definite pattern and family history of immune disfunctions. Eating right alone has given me the energy to exercise, now in just a short while I can better assess my days. If I fall off the wagon and eat chocolate for example, I start to not sleep right. Check out Dr. Fred Bisci, you need to undo what has been done and move forward, just don't get stuck, just pace. You do get better, but remember we all get older, but not necessarily dead yet. I now can exercise better than my kids and tell them to back off with their nonsense, I have a $.10 fee for harassing behaviors and feet on the furniture, laugh if you must, but they are stopping and I now have a fund to clean the furniture, not much but it pays for the soap. There is life after processed food, also note that third world countries suffer less with immune dysfunctions, and no not because they don't live long, that is a poor statement by obnoxious people who have never left their own lives or country. Keep an objective journal about diet and habits, and just observe any food allergies, it can make a world of difference, I still have dry eyes, but now I get days they are normal. Godspeed, speaking of God, King David raised a strong army on veggies alone.

 
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