Just wondering if anyone has had any advice about outdoor work. I am a PE teacher, and have found that I am really starting to struggle with my dry eyes and voice towards the end of term. Has anyone been told of any long term effects of working outdoors with Sjogrens.
At our school there is no shade so I wear sunglasses, put eye drops in and have sun cream on.
I was diagnose when I was 22, I am now 35 I take Plaquenil, which helps my sore joints but I am very light sensitive, and have virtually no tears or saliva.
I am thinking about a career change for my own health?
I saw my Ophthalmologist today, she told me to try different eye drops, but did not really tell me if outdoor work has long term effects.
Any advice would be appreciated,
Anne
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AnneB123
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Hello....well done for surviving all your outdoor activities..as a sjogrens sufferer for a few yeass now i have found outdoor exercise hardwork as i struggle with my eyes in the wind and the sun.i used to regularly run and bike ride by the coast which has now become impossible. Personally i dont think eye drops are your solution as i have tried every one on the market and they all relieve for a short while but certainly arent a cure! I too am on plaquenil but not sure if this makes me feel any different. ..sorry i cant b more helpful
I too spend a great deal of time outdoors and find that wearing wrap around sunglasses diminishes the drying effects of the sun and wind. Have you tried tear duct plugs yet? Over the last 2 years I have used both upper and lower plugs. .They make a huge difference the moment your eye doctor puts them in. The only drawback is that with time they can fall out and you need to have them replaced. check with your eye doctor. They can be put in in the office in less then 5 minutes.
Hi Anne. I have exactly what you have. For 22 years I built up and then ran our own plant nursery. It was my passion. My skin kept cracking, just anywhere, and the lesions started, and they are painful. You already suffer the rest so I won't go through all of that. I now have to go to a neurologist. because of extremely low blood pressure, vertigo and now terrible shakes on my right side. My hand my leg ect. It is probably around 3 years ago, that one of my specialists told me. no more than 5 minutes , direct sun per day. If I have to go outside, then full body cover. Long pants, long sleeves ect. Day and Night, plenty of moisturizer, and cut back on your soap in the shower. I use Q V instead. I don't have the butterfly roseatior across my face and nose. I have it from my elbow to shoulder again on my right arm. Dry eye and mouth, is called Sicca Syndrome. There are so many lupus names Good luck Anne. We can talk again.
Hi it is important to stay out of the sun or protect yourself from it make sure you wear a good sunhat. Plaquenil long term can affect your eyes. I have to use eye drops fairley frequently and it is important to keep your mouth moist by drinking water. i have found that taking a course of vitamins and minerals has helped my health and i just take them all the time. People with auto immune problems are usually lacking in that quarter. Get advice from a reputable health shop. You also need to take omega oil suppplements.
Thank you all for your advice. Mu Ophthalmologist has given me a prescription for Polyvisc which she wants me to use every night, as well as get lacritec which is a tablet that has things like fish oil which apparently reduces lacramal gland inflammation, it is only a new product.
There is also the option of eye plugs, although my ophthalmologist was not overly impressed by them, Signat you have made me think twice, since they worked for you.
I will try these new additions out for this term as well as all the usual eye drops, sun protection and plaquenil (which I do find helps me a lot with joint pain). But I think if it doesn't improve, I am going to have to make a tough decision with regards to my career.
I think it might be time to make an appointment with my Rheumatologist again too to ask his opinion.
Hello Anne. I live in Italy so there is NO lack of sun here, as you can imagine! I have been using artificial tears for years morning and night and have no trouble with my eyes at all. I find they give great relief. I also protect my eyes well with extra dark sunglasses. My problem is a dry mouth and swallowing. I more or less live on soup . this is a real hang up for me living in a food culture country.
About outdoor work! Well one cant live indoors for the rest of our lives! But you would have to apply eye drops frequently and drink a lot of water. I use CELLUVISC eye drops (made in Ireland) . Individual ampules which last 12 hours if unused. I go through about 3 to 4 ampules a day and maybe more. These I find are a thicker drops and the only ones which last longer than any other kind. For night I apply Poly Visc ointment.
I guess I'm lucky I got this unfortunate Syndrome later in life. I feel for you having got this at such a young age. I am 74 now and I first got this about 10 years ago.
Unfortunately I live in a dry area too. Ideally I would love to live at the coast where it's more humid but I don't see that happening.
Hi - I have Sjogrens and have Photosensitivity to sun and Florescent lights and I can not do sun shine for more than 15 minutes wearing a sun block - I can do about 2 hours with same block in flouescent lights. I have no Antibodies to La or Ro ( Anti A and Anti B I think ) BUT I still get the the reactions. I wear glasses which have Photo Gray lens in them to protect my eyes and I use Restatis Eye drops 2Xs daily and have started to make more tears - when I sneeze or allergies kick in. I also have skipping heart beats not bothersome or DX as trouble and have nothing to do with Sjogrens. I also have allergies to everything since I came down with this 21 years ago. I also have Fibromyalgia which brought that " Fog " to the brain with no concentration - the allergies gave me the dissy vertigo thing. It seems it all came about at the same time BUT so many symptoms with no direct connection to Sjogrens ? Maybe they will find connections later on. So Docs treat the symptoms with meds. Sleep is more important than I ever believed it could be and I need 9 hours a night. I also have OA and I am on a Study Drug for RA - watch your time in the sun and take Vit D3 to substitute for being outdoors less. Drink water to keep as much moisture in you, use Biotane Toothpaste, mouth spray, gum, mouth wash, and make sure you keep up with the dentist - the lack of saliva can make fighting cavities difficult. You can buy Clothes made with UVA & UVB protection ( Coolibar is one brand ) online. Pace yourself to help fight the fatigue symptoms that can also bring on the brain fog feeling even without Fibromyalgia. Listen and learn from your body signals whatever they are - take meds prescribed regularly, talk to your doctor and see what he has to offer. Hope things improve for you and you find your way through these times !!! Diane 😃
I have found something fantastic for dry mouth: xylimelts, which I buy on Amazon US. They are small discs which l place on the roof of my mouth and they last for many hours.
Wow, thanks for that, haven't heard of them. I am going to see if I can find them tomorrow, if not I guess I'll have to wait a bit longer to get the order from Amazon. It's wearing me out physically and am very depressed about the constant waking up in the middle of the night, the water doesn't really help much even when I guzzle heaps of it, then of course waking up again to go to the toilet after drinking so much of it. My mouth feels like the Sahara and my teeth are buggered.
Yes, dry mouth is a horrible, horrible thing. When you use these disks, don't drink any water once they are in your mouth because water dissolves the disks.
It is very hard to take your mind off this problem but if you could, you might feel a little less depressed and anxious. Could you possibly try this? Imagine a dial (or knob) with numbers from 0 to 10. Ten would be the driest and most horrible your mouth could ever feel and 0 would be 100% comfortable. Place yourself on the dial somewhere, say "5". Imagine how you would feel if the dial could just go down to a "4". Keep that feeling in mind. The breathe in for 7 counts and out for 11 counts (with a very slow, sustained breath) and try to move the dial down to four. Repeat. If you can get to 4, then try to get down to 3, etc. This sounds nutty, but it works for me if I am not too wound up. Let me know how it goes. Wishing you all the best, Tinypixie
Thank you so much for your kind reply. I'm a bit scared now to think I can't drink water or I will dissolve the disc. Such unbearable thirst! Your idea about the dial numbered 1 to 10 doesn't sound nutty at all to me, I use (EFT) for various problems in my life, and that, too, starts with you attributing your problem on a 1 to 10 scale and then seeing if you can bring it down. I will definitely give your suggestion a go!
Aaah, sweet tinypixie (oh how I love that name!) you are like your name, a tiny pixie, whispering good advice in my ear. I probably sounded like a drama queen when I said it scared me to think of not drinking, I guess if I do, the worst that will happen is that I need to use another one. Still intend to try them out. I tried the Biotene toothpaste, didn't notice any appreciable difference to regular toothpaste. This stuff sounds worth a go, too many nights with too little sleep is really taking its toll and messing with my mind.
NOT to mention trying the '1 to 10' dial. Definitely believe the mind is a BIG part of all this.
You are so kind and I wish you the merriest of Christmases in our crazy world.
I can really understand your panic over dry mouth! It's a huge shock when it happens and it takes quite a while to come to terms with it, so don't think you are a "drama queen." It's only natural to feel extremely upset and alone. It took me about two years to get over the initial shock. Now, many years later, I just see it as a nuisance and it's actually improved quite a bit after the initial total dryness, so I hope this can happen for you, too.
I didn't get any help from Biotene toothpaste, either but I do get a lot of help from products with xylitol. I'm in the UK and I use "Smints" all the time to wet my mouth. In the US there is a product called, "Zellies," although I have never used it. Just look for mints made with xylitol and see if they help.
The xylimelts are fantastic for improving sleeping. For me the best place to put it is on the roof of my mouth. You will see that one side of the mint is narrower and that is the "glue" side. The directions say to put them on your gums but I found that too irritating. Let me know how they work for you.
The absolute best thing for me has been keeping busy. Sitting around with my thoughts is very self-destructive. I think there is a lot of hope for you. Just give it a little time.
So sorry didn't reply earlier, had a break from the internet for a few days, then the general panic with Christmas so rapidly approaching and much to do before the end of the year.
Your replies were so helpful! I haven't got the discs, but I got some Biotene mouth spray which contains Xylitol, which you say helps you a lot. Though the toothpaste didn't seem to do much, the spray works pretty well. I was a bit sceptical that a spray could work for any length of time but there's a definite improvement.
Need to check out the 'Smints' or a similar product, they sound good too. If I get the discs, I will definitely take your advice and put them on the roof of my mouth, that sounds much better than the gums.
With Christmas coming, I have been very busy, and as you so sensibly say, it does help take your mind off things.
May you have a wonderful festive season, Tinypixie, and a very happy and dry mouth free New Year, you're the best!
I'm relieved to hear from you and very glad that things are a tiny bit better. It may be quite a while before you feel "normal" again, but it sounds like you are making good progress by keeping busy and trying out the mouth spray.
Please contact me again any time if you feel despairing again. It's so important not to let yourself get isolated.
All the best to you and happy holidays and thanks for your good wishes,
Hi Anne. Have you tried Restasis yet? It determines whether I have a good eye day or a bad eye day. If I stop taking those eye drops, it's back to square one for me. They take a week to really work but when they do, it really helps in my opinion. Also, has your rheumatologist prescribed Pilocarpine to you yet? You may want to try some. It helps with saliva and overall dryness.
Sorry for the slow response, I use restasis and a few of the other brands of eye drops every day, my eyes punnish me when I forget I have not tried Pilocarpine yet, low saliva does not bother me too much as long as I keep drinking water, however it probably is worth asking about since my dental work over the past 10 years indicates that the dry mouth is definately affecting me.
I'm not too sure if this message is meant for me? As it says 'to Anne', but appears in the thread about my Sjogren's experience. If it is meant for me, I do thank you very much for your reply and will keep your very good advice in mind. If it's not meant for me, apologies, just didn't want you to think I'm rude by not replying. Cheers and best wishes for this festive season.
Hi, i also have sjogrens. Light sensitivity is a problem for me. I avoid hot bright sunlight. I take ceveline which helps with saliva production and has helped a lil bit with eye moisture. I have severe dry eye. Ive been taking cod liver oil now for a few months and have noticed a big difference in my dry eye. I also have a regiman of cleaning my bottom lid with a q tip. It seems to clean and unplug the ducts in lower lid. Strange but it helps a lot. I also take plaqunil and now methotrexate is helping. Hang in there
SJogren’s can bring Photosensitivity from the Sun. I am blood Serum negative for the sensitivity but I have it and I have a flare from the sun if out 15 minutes - also have reaction to Florescent lights in stores ... either way I get warm/sweaty in the nape of my neck and then icy cold ( nose, toes, ears ) and muscles all tighten up ( could be Raynard’s reaction also I think ) I drink hot tea, cover up in bed, and then I heat up and all my joints hurt - exhausting - then sleep for awhile or all night ... I use Restatas drops for my eyes and there are Solar Protective clothes, hats, gloves you can buy ( expensive ) that help also. My car and house windows have Solar protection in the glass which helps also ... it’s been 25 years since it started and it took some time to figure out what was causing the symptoms - I compare the reaction to having the beginning stages of the Flu - feverish, chills, body aches and fatigue - at first I thought I was having return bouts of Flu until I thought it through and determined it was the SUN causing the flares ... reduce your time in the Sun to see if it helps you ... 😊
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