I have secondary Sjogrens sydrome and i am 18 yrs old, was diagnosed late last year. I am constantly ill, my immune system is extremely low that when i get cold i can get an infection. My eyes are constantly gritty, to the extent that i put eye drops in and 10 mins later if i stand near air conditioning the are completely dry again- i have 0 moisture in my eyes. My salivary glands are 50% functioning so my teeth and organs have not been coated, leaving my mouth so dry. I have deep groves in the back of my teeth which indicate early decay. My glands are constantly swollen. I also have the start of oral slceroderma and either pelvic inflammatory disease or emdometriosis. My muscles and joints are constantly hurting and i have trouble breathing usually, which i gather is from fatigue but im not 100% sure.
I was wondering what other peoples experiences and quality of life is like and how you deal mentally and physically with the condition, as i am really struggling to stay healthy. I can't use western medication as i react to everything. Has anyone tried any herbal remedies and found them effective?
Ive been feeling so lost and have just started uni and am studying a double degree of business & law, which has been a little diificult with the condition.
It would be great to hear someones response!
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andi93
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I also have secondary sjogrens, was diagnosed in 2005.
I Experience all the symptons you have described.
I am working with doctors to find treatments but as you experience, no western meds react well for me. I am trying to find a good understanding rheumatologist who treats Lupus disease as its very similar to Sjogrens.
You must see a dentist regularly and clean your teeth often as well as a flouride gargle.
I joined a really interesting Sjogrens Group on FaceBook, you might find some alternative herbal medication info on there if you join the group.
I have Sjogrens also. I found a great immunologist and dietician who put me on a salycylate free diet and my symptons virtually disapeared within about one week. The most common foods with high salycylate content are beer, wine, tea, coffee, mint (including mouthwash/toothpast/gum), herbs and spices, commercial sauces and gravy etc. Lots of fruit and vegies are a probem too. The connection between salycylates and Sjogrens are only just being discovered, but the results of a low salycylate diet are amazing. Dr David Sutherland in Newcastle is my immunologist. if you're going to try the diet see a dietician as the info on the internet about salycylate content of food is unreliable.
I've just noticed you're in the Newcastle area, I really recommend you get a referral to Dr David Sutherland - and the dietician I see is Kim Kelson in Hamilton.
Good Luck andi93, you are very young to be dealing with this. I was 41 when diagnosed, and I found it difficult to come to terms with, but with time and a complete change in diet I'm in a much better situation now. If you need any tips re the diet, let me know.
Im in the Newcastle area too and was diagnosed in my 20's and i am now 41yo. Though most of my childhood i had issues too. I have had a tumor removed and my parotid gland due to the tumor, constant body aches, eye/mouth issues, sleep problems, 9 operations (one i nearly died after) due to it attacking my tissues.. 3 of which were in the repoductive/female areas, over active nervous system that causes "wiring" issues with my heart, fatigue, headaches and bowel issues, itching etc.
I just try to find the things in life that bring me joy such as dance and music. I meditate and do tibetan yoga, I have found that Astragalus 8 (a chinese herb mix) and Olive leaf extract is great for my immune system, Magnesium Glycinate (from compound chemist for aches and sleep) Vit B6, massage and some other practises i have all help. I have been to countless specialist and none that has been able to help too well.
I think it is so individual how your body will react, i have tried a few diets without a great deal of success, but all things are definitely worth trying as we are all different.
Its important to understand our fuel is lower than most people so we have to use it wisely so that it doesn't run out when we really need it. Listen to yourself, eat healthy, surround yourself with positivity as much as possible, rest and exercise and find the beauty in small things.
I allow myself a good cry sometimes and then keep moving forward. At times this journey has almost broken me, but we all have gifts to share and i found i wouldn't be who i am today without the lessons Sjogrens has taught me...though i wish for some peace sometimes
I think also from my experience that it is not about striving for a cure, but finding the things that help you function at your optimum and creating a life that doesn't bring too much stress physically, mentally, emotionally and spiritually.
Sending you much healing thoughts (sorry for the essay)
It sounds as though you have had a horrible time with Sjogrens. You sound like very strong person to go through that all and still find things that make you happy.
I have just found a chinese medicine doctor in charlestown, and its the fist time i have had any relief. I went 2 days with being healthy, which was such a nice break. I have a long way to go, but i think this can really help. It just gets so hard sometimes, especially with the amount of uni work i get.
Its also a little confronting for me when my specialists say that this is for life, i've been told that if i don't find something that works ill have liver and kidney problems in the next few years, also that i won't be able to have children, though there is a slight possibility if i can get healthy. Sometimes it makes me think that i wont be able to do the things that i want to when i get older - my aim is to become a supreme court judge. Im heavily involved in the community, i hope that my future employers can get past the fact that i have an illness and focus on what i have done and achieved - this stresses me out sometimes.
I have to learn to keep myself balanced when things get really bad. Hearing your story will remind me to stay balanced even when things get tough.
I too have Sjogrens but when I was in my 30's I first noticed dry eye problem when i was in my 20's but only diagnosed when I went to my dentist and then referred to the dental hospital here in the UK. There are plenty of self help groups over here and they do talks and help raise funds towards research etc. and also do trips occasionally. We may have a health problem but don't let it stop you doing what you want to do. Like your other replies say.
I was on a medical trial and met up with other people with S.S doing a questionnaire to help others like ourselves for the specialist to be able to understand us better so as to make the questions more relevant. At that time I felt I would be in a wheel chair I felt so bad, but the variety of patients like myself who were there all coping with different jobs, some able to do exercises, made me rethink my future health problems, and change accordingly. Eventually.
I am 58 now and I find that stress triggers it off a "flare up" I can cope better after a rest. To cut it short its al about managing and recognising how you are feeling.Listen to your body telling you when you are" tired" What have I done to cause this? and what can I do it to avoid this happening.
At your age and going to Uni is the most stressful time for you just now. Sjogrens may be for life -- (I had 2 children and was put off by having another baby as I heard it said that babies could have heart problems. The two boys I had seem o.k . one is 31 now.)
Take one step at a time, do what you can do, when you can, rest too; exercise does help- though to start with I wasn't sure. We are all kept informed by the Doctors and Specialist so we are aware of what could happen. Who can say; if and when it will happen ---"so go for it"
what ever dream you have DO IT as it will be no good thinking 20 years down the line- if only!
Keep cheerful- Yoga or Thai Chi is supposed to be good for us.!
I do have anti-depressants too now, but I was, and still am, an optimist at heart . -
Dry eyes: I find Celluvisc 1% eye drop solution- 30 single use containers, twist top to open are the best ones to use I use then day and night; 3 times day, and when I wake at night with dry eyes. (no preservatives in).
Yes when first diagnosed I thought the same and "why me"
I soon realised there are so many people with S.S. xxx
Hi I have had SS undiagnosed for 11 years but diagnosed now for 6 years. I use the Mannatec natural products of Plus and Ambrotose which helps support healthy cell production. It takes several months of taking it to see results but slowly everything pretty much improves. My Dr here in New Zealand has monitored me through this. I will always have SS but the fatigue is pretty much gone and all other symptoms are varstly reduced. Any flares are short lived and cushioned right down. I manage those now with Panadol. I also take Vit B supplement. Flax Seed oil and good quality Arctic D Cod Liver Oil. I have been on Mannatec now for 5 years. Cost of course is an issue but I am happy to go without certain things to have this quality of life. I am involved closely with my 7 grandchildren I walk and Cycle a lot and also have been able to go back to my main passion of horse riding.
The 0800 phone no. from New Zealand is 0800 333 250 and 1300 361 878 Austalia
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