Suffering with Sjogrens

Hi Hayley that is certainly SS it loves stress! It is not just dry eyes and mouth it's systemic and quite nasty too. I do suggest you join the BSSA the charity for Sjögren's as this will help you I'm sure. The President is my Rheumalologsit and understands people with Sjögren's and understands it's far from just being dry. She even agreed to my having POTS that means your may have neuropathy that feels like tingling or cold feet or hot feet, you have a condition called Raynaulds where your fingers can change colour. I have a much rarer problem I'm double jointed, she has added that too. The books are good but you really do need to join an organisation for SS and meet others who have the same problems. I suggest you ring Heather at the BSSA and tell her Pam suggested it. I have been a member for 18 years now. Tel: 01214780022

Hayley Sjögren's is a systemic illness not just dry eyes and mouth. You really need a Sjögren's Conultant in the UK to explain this to you. Are you a BSSA member. 

Im having trouble with the dryness. Have been drinking coconut water which helps a little but my food tastes terrible and its like eating cardboard. Does anyone else have that problem?

Hi. thanks for what you are sharing here - it's inspiring. deep hug to all of you courageous ones!

I am 29 and I have been diagnosed with Sjögren’s yesterday. For three years they thought I had an RA because of joint inflamations. I suffered from a "horse" depression which led to apathy and brain fog. So, I had to quit my doctoral studies and change majorly my lifestyle. I live in sunny spain so the flare-ups are just exhausting. Trying to stay afloat.

I am fond of natural treatments. So here in Barcelona there are two women I admire: one cured herself from Lupus and aother one from RA. They do a stict dieting and i am sure their conditions were worse than mine (maybe that's why I am being lazy to go all the way that strict).

They basically do the cleaning of lymph nodes and full body detox. They follow a raw vegan lifestyle for many years now.

I myself became a vegetarian 1.5 years ago and observed some changes (not major but observable). Now after the last joint pain I am willing to try a full body detox and juicing. I heard chlorophyl does miracles. Anyone tried?

Yesterday I though that death is the easier way out but it isnt worse the journey.. keep up, stay cool and stay hydrated.

Feeling quite bad for you. I was diagnosed 6 years ago but didn't believe it as I have no dry eyes or mouth but experience pain and fatigue. I have been diagnosed with IBS as well and therefore cant eat much fibre vegetables. I avoid gluten and lactose in general. I also have fibromyalgia which contribute toward the pain. One thing I note now is that I am prone to chest infections which has been 11 times in 7 months and investigations now show that I have inflammation in the lower lung. It is a catch 22 situation of eating healthy and exercising and being able to do all this. I have taken health medications for years for osteo arthritis and am on plaquenil and endep. Some days are better than others. 

It has been good to find this forum and hear what others are going through as well.

I quit wearing makeup, so as to not irritate my eyes, I avoid hotdogs, sausage and pizza because when ever I ate those things my eyes got drier to the point of getting infections.  I suspect sugary things do the same thing, but I have avoided sugar for a long time so I can't be sure.  I use a cool air mister by my bed and it helps to not get so dry.  I use restasis and also Muro the cream form, as the drops just made my eye ache.  I couldn't do without any of those things.  I did take some meds for restasis of the cornea, that while rare was keeping my eyes irritated no matter how many thick tear drops I use.  I use the 1%  - look for the description for severe dryness or read the lable.  Just recently I sent for some lubrication I put up inside the vagina because I was getting so dry it hurt all the time.  I was getting yeast infections as a result of the dryness, but now I have gone for 10 days without that gel and am so far fine.  I think there are times the dryness gets worse.  I believe the theory is if you have one autoimmune, you will develope another.  I have RA but both Sjorgrens and RA came at the same time.  Also watch the fatigue because it can mean you have low thyroid.

I, 61 yo female, suspect was having symptoms for a while, dry eyes, rash on the face. And then amazing aches and pains, a diagnosis of ross river. However this morphed to lupus. A period of high anxiety culminating in losing my house and i tipped into sjogrens, dry mouth, fogging thinking, and so tired..... Now On medication of methotrexate 1 and a half tablets, and hydroxychlorine 200 mg and i work 40 hours and only the dry eyes, which is a pain! Dont give up and dont give in.

But also we are all different and i am grateful to be able to work.

Hiya Hayley,All sounds like SS sadly diet wise drink lots+try to stay away from bread and crackers and the like as our "tubes" tend to be dry too,I believe you should make notes of what you eat and how you feel later,always hear if you need to talk...Paul

hi can anyone tell me wot to just for dry mouth well throat i'm constantly clearing mucus out of my throat swallowing loads & the bottom of my throat its feeling so rough

i've been sucking sweets that help natural saliva & drinking water on off but the feeling something stuck & rough like toast

have a spray to that helps slightly but only in the mouth not down the throat

Hello, I am a 52 year old female and sjogrens started after I had Covid (February 2020) but in that time we didn't have covid tests.

I had many strange symptoms, such as shortness of breath, severe fatigue, belly pain, diarrhea, itchy palms and soles, red eyes, enlarged salivary glands, swollen lower lip, swollen eyelids, burning sensation in the vagina and uterus and I had an unexpected bleeding like a very heavy period (maybe because I have uterine polyps). When I was feeling better, I went to the gynecologist, but she didn't detect anything wrong.

After Covid I felt excessive tiredness, some joint pain, muscle aches, dry eyes and dry mouth, excessive hair fall and I experiencing a rapid heartbeat or palpitations… My menstrual periods finished forever and I started feeling that I have a very dry vagina. I need to urinate often and with a feeling of urgency…

Some months after, I was very nervous and I noticed a burning sensation in the wrists, knee and shoulder pain, strong pain in all my muscles and tendons, stiffness of my arms, brain fog... I felt really sick.

I searched my symptoms on Google and I thought I could have Sjogren’s syndrome. I went to my general doctor and I said that I had these symptoms and maybe I could have an autoimmune disease. I did blood tests and my ANA test detects antinuclear antibodies (ANA) in my blood (1:320).

I went to a rheumatologist with many years of experience and I did many blood tests. He told me to take hydroxychloroquine 400 mg, even with negative lip biopsy. I am taking these pills every other day (one pill on alternate days), Salagen (for dry mouth), vitamin D and I am feeling better.

I have some allergies to some meds (like aspirin, ibuprofen and all cross-reacting NSAIDs) and I am afraid of the side effects of some medicines. So, I went to two naturopaths and they told me to take some supplements during all my life: Probiotics (good for gastrointestinal disorders), Omega 3, Magnesium bisglycinate, vitamin C strong (1000 mg) and Vitamin D3 + MK7 (because the level of vitamin D it was too low in my blood test). MK-7 (vitamin K2) help to transport and integrate calcium into bone (avoiding osteoporosis) and less calcium is available for harmful deposits in the kidneys. I am also taking Sea Buckthorn Oil (omega 7 fatty acid).

Now I have an anemia and I am taking Iron bisglycinate 20 mg and Complex B vitamins. I have muscle pain and I am taking some Cannabis (seed oil) capsules (1000 mg) with THC inferior to 0,2% to reduce inflammation.

The naturopath encouraged me you to eat anti-inflammatory foods: plenty of fruits (blueberries, blackberries and raspberries, cherries, pomegranate) vegetables and legumes (lentils, chickpeas and other beans, dark leafy greens, broccoli, cauliflower, Brussels sprouts), sweet potato, avocado, eggs, fish (especially salmon, sardines and tuna), garlic, ginger and turmeric root, nuts and seeds, whole grains (quinoa, brown rice) and olive oil. I should avoid processed foods, sugars (even honey), dairy products such as milk and cheese, soya, refined grains (like bread, flour or pasta). I do not eat red meat more than once or twice a week. Anti-inflammatory diet and lifestyle changes protect against inflammation and now I am feeling better and I have normal heart beats per minute. It is also very important to avoid stress situations.

Hi All,

Any advice or reassurance welcome.

I am still waiting on a official diagnosis after 3 years (covid making the system slow). I suffer from dry eyes (bleparitis), dry mouth (embarrased to show anyone my mouth), thrush orally and also balantitis (nothing is helping and had a ulcer that wont go away), fatigue on and off (comes in waves) when its at its worst I am exhausted. My arms always hurt.

i am going out of my mind at 34 years old. more bloods done recently and ANA negative but for the firsttime i have tested positive for SSB (LA) ANTIBODY but not SSA (RO). from research that means they still cant give me a official diagnosis but not seeing doctor for 3 weeks. anyone had a similar experience? i know this isnt in my head.

i also was on immunosuppressive mediction for 6 months and recently had a strange mole appear on my foot and have beem reffered to GP.

WHY is this so hard?

hi my name is Deborah Hubbard aged 57 and I am really struggling with this too, every test ive had come back normal this is making me very anxious and depressed i have lost 20 teeth over the years and I can hardly walk some days with my joints being so bad my memory and concentration is terrible i have just emailed my dermatologist as i had aggressive skin cancer 4 years ago for a lip biopsy i really want this to be diagnosed