I am a 46 year Africa. American female who was diagnosed with Sjögren's Syndrome in December 2012. My systems are fatigue and achy joints and muscles. I have started to experience dry mouth when I wake up in the. Or nine but not everyday. I take plaqunill once a day and 15mg of presidzone. I am having a difficult time finding a good diet and daily exercise regimen, any suggestions?
Hi Lattice, I've had sjogrens for most of my life and the mouth and eye dryness have started to cause severe issues but I NEVER get joint pain and I only get fatigue after a very stressful time and always recover the next day. So I must be doing something right. I would recommend fish oil supplements and cutting out all meat and processed food. A plant based diet seems to help and some people cut out gluten, but I don't. The best form of exercise is Pilates or yoga that you can do to your own level. You may also want to try Simba capsules that are available online. They are an immune support and really help with fatigue.
Hi Latrice, I will start by saying that all of us are different. What agrees with me my not agree with you.
When I was diagnosed I was very fatigued with painful joints and mucus in the lungs. I was on prednisone for a little while . Now I sm on plaquenil twice a day. I am no longer achy or fatigued.
My diet consist of gluten free cereal with flax and chia seeds with a banana and almond milk with black tea or tea of your choice no coffee. No dairy.i eat lots of grean leafy veg, quinoa and fruits. I stay away from sweets and alcohol. Alcohol makes your mouth drier. I take sips of water all day long. For my teeth I use xylitol toothpaste it's excellent snd help you with cavities. Oops I forget to mention I eat plenty of fish, beans no meat . You can try see if it works . If you can afford it look for organic products. And take fish oil capsules omega 3 with vitamin e. Hope it helps!
Hi
I forget to mention about exercise which is a part of my well being.i go for long walks at least 3 days a week that keeps my joints moving and flexible.
When I wake up I do some stretches.
My problem at the moment is my dry eyes which is not as bad as before I am on restasis eye drops 2 times a day .
Hi Latrice. I'm 70, largely in remission now, having suffered a lot in my late 50s and 60s, and coping well.
As regards the achey joints and muscles, I've always found it important to do regular exercise, but without overdoing it on days when I'm tired. I always make myself go out and walk for at least 15 minutes a day and do an hour or so when I'm not in too much pain. I also do a made-up exercise programme several evenings a week, to make sure I put all my joints through their full movement. Personally, I find afternoon or evening better for exercises, since I'm always a bit stiff in the morning. It's very important to push yourself a bit, but always listen to what your body is saying too.
I think the main thing on the diet front is to stay away from sugar as much as possible - especially sodas and smoothies. Both are terrible for your teeth, which are already vulnerable as your mouth is dry. Better to eat the whole fruit (but not too much of that either). Vegetable juices like V8 etc. are OK though. Also important to drink plenty of water - but NOT in large quantities at a time. Much better to keep drinking small amounts at regular intervals (as Sweetness says). Large quantities wash away the useful chemicals in the little saliva you have and make things worse.
Again as per Sweetness, we're all different. I don't follow any particular diet, though I only eat meat a few times a month and have plenty of oily fish. I also eat a lot of green vegetables and tomatoes (I'm a "tomatoholic"!) Fortunately I've never had a sweet tooth so only occasionally indulge in desserts anyway. I do, however, indulge in wine with my evening meal as I'm from a continental European country! Red is better than white, as it's less acidic.
Be careful about life-style but don't get too hung-up on it. Sjogren's is an auto-immune condition with a heavy psychosomatic element, so worrying about yourself can make it worse. You can still enjoy life, even with Sjogren's!
Thank you so much for the information.
hi, Sweetness
First of all, your forum definitely helped me so much! How long after you began taking the plaquenil did you notice a change in your condition?
I have read a couple of your replies and wanted to thank you. 
I have had Primary Sjogren's since I was pregnant with my 5 year old. I had a terrible flare postpartum with my 2 year old which prompted me to see a doctor. I have a fybromyalgic component along with the PSS. I have a 2 month old, now, am 36 and am teaching full time at a local college. I am in the middle of a flare now, and am in tremendous pain. Your replies are comforting in that I am not alone and as a reminder that "this too shall pass." Thank you.
I'm really sorry to hear you're having such a bad time. I know Sjogren's tends to be worse in younger people and that flare-ups are common in pregnancy. Most of us don't get it till we're about 50, when it tends to be much less severe.
Are you able to switch to part-time for a few months? Two months seems terribly early for any mother of three young children to go back to work, even with having Sjogren's in the mix.
I really think you should cut yourself some slack and not try to "work through" this crisis, even if it makes things financially harder for a time. Sjogren's itself isn't a killer, but I'm sure you know it can predispose to other diseases. Your children are very young and need you to be in good health.
I hope you can find a solution to your problems. My thoughts are with you.
Thank you! I actually have four children--I also have a 12 year old son. I stayed home for about 18 months after my two year old was born, but got this job last semester. Full time teaching jobs are hard to come by in my field, and it took 8 1/2 years for this one to come along, so staying home isn't an option, unfortunately.
I did some research on diet restrictions, and I know sugar, caffeine, dairy and gluten can all cause inflammation. I think the restricted diet is the hardest for me to implement, but I am also not ony medication right now. Maybe I should go back to the doctor...I just hate to take anything that hasn't been through ample testing.
Anyway, reading this forum has been encouraging and I am grateful for it--thank you for being part of it!
Well, your quiver certainly is full!
As a former nurse, I fully understand your reluctance to go on medication. However, I can't see any harm if it's short-term, to get you through a difficult period. The one thing I'd recommend you avoid is the steroid group (i.e. cortisone etc.) unless it's just for a few days to kick-start you. Long-term steroid use not only doesn't help, it produces all kinds of unrelated illnesses. I wish doctors wouldn't prescribe these drugs unless they absolutely have to, but I guess they get a bit desperate when patients keep coming back.
On the diet front, I think the jury's still out on gluten and Sjogren's. Gluten-free has become fashionable for all kinds of conditions these days, but I don't think there's a lot of evidence for it, unless you actually have coeliac disease, in which case it's imperative of course. Have you tried re-introducing small quantities of gluten? It's just that it's almost impossible to avoid - it's in practically everything - so it's the one element of your diet that's going to make life miserable. If, on the other hand, you find there's a real benefit in cutting it out, then go for it.
I think sugar is the only complete no-no in SS. Partly because of the effects on your teeth and gums, which are already at risk from your lack of saliva, and also because it's a killer in general. It really is the scourge of the modern world.
I'm personally OK with dairy, as long as I don't eat it in the evening. Even when I'm in remission, I have very thick upper respiratory secretions (yuk!) which can block my airway completely during sleep if I forget myself and eat dairy (especially milk chocolate) late in the day.
I don't drink much coffee, but drink several cups of weak-ish tea during the day, and I've never noticed the caffeine in that makes any difference.
I must say I'm a great believer in fish of all kinds (including oily once or twice a week), not too much meat and large quantities of green vegetables, cooked or raw. I've also taken a daily fish oil capsule (Seven Seas Extra Strength) for the last 25 years. Don't know whether it helps, but I wouldn't want to risk stopping it now. I normally only eat one serving of fruit per day - an orange (not just the juice) for breakfast - as there's a lot of sugar in fruit. But this is on general health grounds, not just for SS.
The most important thing is not to get so fixated on diet that it becomes a source of anxiety and makes your life wretched. That alone can over-stimulate your immune system, which is the last thing we SS sufferers need.
I do hope you can get through this very difficult period without too many symptoms.
Hi Lily, do you cut out grains as well as sugar? I'm having a flare up--first one I've ever needed to be treated for--and am having joint and lung problems as part of it. I've been eating healthier and exercising daily (stretching and walking, but not very long duration yet). But I've been eating whole grains and also a treat once or twice a day of a small bowl of ice cream. (1/2 cup). Am I on the wrong track?
Hard to say, Sunshine. We're all different - as Sweetness pointed out a while back - and things are rarely as clear-cut as we'd like them to be. I'll tell you my story and leave you to make up your own mind.
Around my late 20s, and largely because of finances, I stopped eating meat, then gradually found I didn't need fish either. I also cut back drastically on eggs and cheese, so was eating a near-vegan diet. This meant I had to eat a lot of pulses and whole grains, of course. When my finances improved dramatically about 10 years later, I didn't see the need to start eating meat again. In fact, I'd gone off all animal foods and couldn't get them down, so I continued on my rather restricted diet (which I enjoyed eating) till I was in my late 40s. During this time I got several crippling episodes of arthritis in all my joints, the worst being when I was only 37 - and all of them much worse than anything I get now, at age 71! I saw a wonderful homeopathic rheumatologist, who told me I was exaggerating with the pulses (beans, chickpeas etc.) and also rhubarb and coffee! This turned out to be true. Once I cut out rhubarb and coffee, and cut back on pulses, the arthritis disappeared. This, however, meant I had to eat even more whole grains to compensate.
In my late 40s I suddenly started to crave meat, so allowed myself to eat it occasionally. (My original switch to vegetarian/vegan hadn't been on moral or religious grounds.) I've continued to this day eating meat about once a week, quite a lot of fish, and vegetarian at least twice a week.
At around the same time, I found myself becoming less tolerant of grains in general, which had been a staple part of my diet for 20 years. I still eat a few whole-grain products to this day, but have to be very careful not to overdo it, as they give me a sore, bloated feeling in my stomach.
At the time, I put both these changes down to the after-effects of a fairly early menopause (at 45) for which I've never taken HRT. Around the age of 50, I started getting the first symptoms of Sjogren's (dry mouth, dry eyes, stiff hands, peripheral neuropathy, Reynaud's) but it was another 10 years before I got a diagnosis, like most sufferers.
So... the point of this long story. Seems to me there are all manner of chickens and eggs in there and I don't know to this day which were which! Did I get Sjogren's because I started eating meat/fish again? Or was it the result of the previous 20 years of eating pulses and whole grains? (The arthritis definitely was, as I hardly have any problems with it now.) Is the fact I don't tolerate a lot of grains now because my body rejects it, knowing it's bad for Sjogren's? Or did I get Sjogren's because I cut down on grains? Confused? I certainly am!
You see what I mean? You're obviously doing the right thing keeping up gentle exercise throughout the crisis. That's always worked for me. Two servings of ice-cream per day might be overdoing it a bit - lot of sugar in it, plus all kinds of additives.
I've been largely in remission for about six years now, though I've had a few problems with dry eyes this last winter (one attack of conjunctivitis). My own policy is to eat as sensibly as possible without overdoing any one element of my diet, and to listen to what my body is telling me. My stomach no longer appreciates a lot of grains? OK, then - I don't eat a lot. But I eat a couple of servings of wholemeal bread a week, and maybe one helping of porridge, to keep up a wide range of nutrition. That goes for treats too, unfortunately. My stomach has recently started telling me it doesn't like wine so I've had to cut down sharply on that! (I live in a wine-drinking country where the stuff is much cheaper than the UK.)
It's all a question of balance and listening to your body. But without getting obsessed about diet.
Thanks, that's kind of how I feel too about not obsessing over the diet. I will definitely cut down to 1 or less treat a day. I just read a lot of comments on various sites of Sjogrens patients about Paleo and gluten free. Not sure what to believe/try. Maybe I should be tested for a food allergy, who knows☺ Thank you for your help and experience!!
Dunno about food allergy testing, Sunshine. 30 years ago a friend got a mystery illness that went on for months, even had to be hospitalised for a while. They thought it was lupus, among other things, but blood tests were always inconclusive. She eventually got herself tested privately for food allergies. I was at her house the day she got the results. It was a winter afternoon and she had a lovely open fire going. The cover letter said she had multiple allergies, which were described on the attached sheets. These were two A4 pages, completely filled with double columns of foods she was supposed to avoid. The test had cost her a small fortune but without even looking at the sheets, she scrunched both of them up and threw them on the fire!
Shortly after that, an unusually alert doctor diagnosed Lyme disease and successfully treated her. (Not that I'm suggesting that as a diagnosis for you or me.)
I don't know whether you could get food allergy testing under the NHS (assuming you're in the UK) but if you can't, the moral of this story is to stay clear of commercial allergy-testing companies. They'll have you existing on water and supplements (which they're probably selling themselves!)
Why not give paleo and gluten-free an objective test yourself? Keep it up long enough to see whether it really works. Not both at the same time, of course, or you won't know which one is making a difference. Personally, I'm sceptical about both but we're all different, and my SS isn't very serious these days.
Good tip about the allergy testing! Somehow that doesn't surprise me, everyone is selling their opinions these days. ! I'm actually in the US...Texas to be exact
. I may try Paleo, but I'm dreading it.
Hmm... not sure about the wisdom of putting yourself on a diet you might hate. I'd say try it for a week. I know the diet I followed for 20 years was pretty restricted, but that evolved very slowly (I didn't tell you all the details above) so the process was kind of organic. It's one thing to eat sensibly and cut back a bit on treats (ice-cream for you, wine for me) but quite another to embark on a diet that's going to make you miserable.
Partly depends on your age. If you're young and getting severe SS symptoms, I guess it might be worth putting yourself on an unpleasant regime to prevent the condition ruining your health at a later stage. If, on the other hand, your symptoms can be managed reasonably well or you're already past middle age, maybe it might be better to live with the condition. Either that, or just make some concessions to the paleo diet without going the whole hog. There was no ice-cream in the paleolithic age!
Good luck with whatever course you choose. And don't forget SS is notoriously subject to spontaneous remissions too.
Thanks! You give great advice☺
HI Latrice.
I was recently diagnosed w/Sjogrens too. I find juicing helps a lot. I experience extreme fatigue and have found that juicing at least once a day helps with my energy level. Good luck to you.
I just recently have more so been more aware of my ongoing symptoms and am now connecting the dots, so to speak. I am 53 years old and now post menopause since 2013, at age 50. It all started a few years ago with hip pain, first in the left then over time in the right. I associate it with being a gymnast in my high school years. Then a couple of years ago I developed a constant cough. My general doctor said it was allergies. I also since I turned 50 have been extremely tired/fatigued. Again thought this was part of menopause. Since January 2015 is when things really started to change. My left shoulder started to hurt and now right shoulder. My internal organs (pancreas, liver, heart and lungs) feel swollen. I developed red eyes and thought it was allergies. Nothing was helping. Went to urgent care centers a couple of times, then eye doctor. They determined I have dry eyes, now I have dry mouth too. So I went back to the doctor and asked her to write a script for me to have blood tests to test me for rheumatoid arthritis. I am awaiting for those results and will find out on June 16th. I have done my own research on the Internet and I think this is what I may have, but I'm not sure. My doctor prescribed me Meloxicam and it helps somewhat. Not sure what to make of all of this. My fear is I may not be able to continue working like this. It has affected my work.