Symptoms appeared abruptly and out of nowhere

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i just joined the group. I've read multiple posts about people doing the lip biopsy and having false negatives. by with my symptoms alone i am convinced i have sjögrens . the first doc i met with insisted i dont have it and said its very rare - then i had blood tests done, i tested negative for SS- a and b, negative for Anticentromere antibodies and negative for sedimentation rate but showed very high for RA factor, but i have no joint swelling ! symptoms came on abruptly one day out of nowhere 3 weeks ago- i immediately had a very dry mouth where it felt like i had a mouthful of cotton. its been the same ever since with painfully dry stinging eyes that are the worst when it gets late at night or when i first open my eyes- i feel like i have film on my eyes because if i have something in my eye there is no liquid to move it out of the way- the mouth situation is torture- i cant eat certain foods because my tongue and mouth cant take it, wine tastes weird and even gargling and rinsing with water feels awful. im curious when anyone else first had symptoms did they come on gradually or was it abrupt for you? any thoughts? thanks

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  • Posted

    Hi Lynn..

    i am similar to you.

    Mine started 2 years ago with ghosting to my vision.

    A short time later my eyes started to run my nose to run and a permanant dry mouth.

    Also ibs and joint/muscle pain

    Got nowhere with doc after all the blood tests came back ok..

    Finally saw rummy specialist who although did not say it gave me the ss booklet

    Muscle and joint pain comes and goes. but eyes and mouth are permenantly affected.

    Worse at night as eyes sting

    .use drops and sugar free sweets.

    belveze

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  • Posted

    hi there. firstly, i would never have a lip biopsy performed. never. ever. it is unreliable and can damage your nerves in your lip.

    secondly, i tested positive for ana and sjogrens b. i am officitially diagnosed with undifferented connective tissue disease.

    yes. my symptoms came out of no where and was hospitalized with oancreatitis, unspecified. no drugs or alcohol in my system btw

    so to best anwer your question. for me, ir did come on very suddenly. you mentioned wine? if you truly have skigrens; alcolol, even in the smallest if doses is not your friend. trust me; i felt so bad i trief to feel better drinking some wine. just made ut worse.

    the good news is that quite possibly you are having your first "flare" and will feel better very soon

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  • Posted

    but. it is the worste i have ever felt. and as i kid i had a crazy horse that kicked me and broke my knee in half. sjogens feels worse. i just want you to know it will get better. i wanted to die when i was in the "flare". i am so much better now. fingers crossed i will continue to improve

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  • Posted

    Lynn, I have a condition called polymyalgia rheumatica. Have had it almost 23 years. Also have osteo-arthritis. For several years I have had what I called dry mouth. Have been drinking enormous amounts of herbal fluids. Then, about two months ago, my eyes became so dry and painful, I decided to see my GP. My eyelids would stick together in the morning. My skin was also dry as dust. Told my doctor I thought I was metamorphosing into a toad. He said, "No, Sally, you have Sjorgen's Syndrome." I have two girlfriends who have it. I looked up the symptoms on-line, and I have 9 of the 10. Also the sores in the mouth are highly annoying. I think it lies in our systems, and then comes popping out. Drink lots of fluids. I worked with herbs for years, so I make a concoction that aids my arthritis and Sjorgen's. You are correct about the 'cotton mouth'. It affects taste. Nothing is the same any more. But the mouth sores are very annoying. I have put myself on a very restrictive diet, and it especially helps the mouth sores. Also use eye drops, Lynn. I have been using ones I make myself, plus 'Soothe,' which I buy at Wal-Mart. Remember to put them in before you go to bed. Hope that helps you.

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  • Posted

    Hi all!

    This was a interesting thread so thought i would reply. I'm a 44yr old male. Based in Finland.

    I was diagnosed with Fibromyalgia back in 2002. Went through some tough times in the beginning. About 5 years ago i started going to the gym very routinely. About 2 years ago I found crossfit and began doing that. Was actually in pritty good shape. So almost did not think about fibro to be honest. I could have a flare here and again but not very often. Felt as though exercise has and had been the best medicine for me. So last few years have been in the best shape of my life.

    Then this summer, beginning of my summer holidays i started to feel a bit down, slightly even depressed. God knows why. Around the same time i started noticing when i spoke my tongue would get sore. So sore tongue and then my mouth started drying out. Had quite a lot of stress at work before the holidays and i put this all down to stress.

    I have read that some ppl with fibro have dry mouth as a symptom but its not something I have ever had before. This has stopped me in my tracks. Really scared me and right now i'm sort of wondering what i did, or why this happend. I'm wondering can a dry mouth be some kind of flare that is just temporary or is it here to stay. Somehow though I don't think this is fibro. This feels different. I do not have any issues with my eyes. Aside from my mouth pain im having some awful burning on the very tips of my nose. So the nasal passage. Skin is also dry on the sides of my nose.

    So this definitely is something that is entirely new to me as symptoms.

    Now I have had to put my crossfit on hold entirely. It feels with the dry mouth that quite rigurous exercise might be a little much at the moment. If this is some kind of first flare, i sure hope it gets better from here.

    Hardest thing is my mouth which feels like its on fire. I think if i would not have to talk i would be ok but seems the tip of my tongue and then palette of mouth gets sore from speaking at work now. But yes this whole thing sure sort of came out of the blue. Its like someone switched off the faucet for me. Thanks for listening everyone.

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    • Posted

      Hi Chris in Finland. This is Sally in BC Canada. I never had those biopsies done, because I had almost all the classic symptoms. Drink lots of fluids, herbal if possible. I know it's annoying, because what goes in must come out. You must keep yourself hydrated. SS often accompanies other auto-immune diseases, and since you have fibro, it seems likely you do. I worked at a health food store for years, so I use a lot of herbs. My only 'treat' is gingerale. I make my own tinctures too. Keep exercising. Do not give that up. I think it might help you. Yes, talking does upset your mouth. I sing, so I have my thermos with me always. Otherwise I cough. Very annoying. I don't want to upset you, but so far I have never met anyone who has found a cure for SS. Keep positive. It really helps. Best regards to you.

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    • Posted

      Hello Sally in BC. Many thanks for taking the time to write me. I used to live in BC myself back in the 90's. Tsawassen actually. Yes I really feel as though exercise is so important. However with this now it has really made that hard. Sort of really disrupted everything. Amazing all the effects a dry mouth can have on activities.

      Sally do you take any fake saliva like Salagen or Pilocarpine by any chance?

      Im also having very sore burning skin next to the nose which hurts like heck. Been putting vaseline there when i am home. But boy does it burn. Only slightly red but very annoying. Many thanks!

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    • Posted

      No, I do not take anything but the herbal drink I make each day, plus soothing herbal teas. I also cheat and have one instant coffee with organic milk each morning. There is a cream called Penaten. I started using it when I was a young woman living in Heidelberg, Germany. I find it very soothing. I'm afraid you can't escape the dry mouth. I get up during the night and drink water. I call it 'cotton-wool mouth.' Hope these help you. I have a joke about Tsawassen. If you can spell it, you are amazing. If you can pronounce it correctly, you receive an A+.

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    • Posted

      I also started CF after being tested for everything under the sun and it all coming back normal.. They also told me it was fibromyalgia but Im pretty sure that is what they tell us when they have no idea what is going on.. CF saved me!!! I have since developed extreme dry eye and mouth.. I spray my mouth with biotene before the WOD and chew gum the whole time I do CF. I wouldnt be able to swallow if I didn't. I hope you find some answers and can get back to doing CF.

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  • Posted

    Also forgot to add that i have had now the 2 blood tests for Sjögrens. They were this A and B type thing. Those were ok. Also the RA or athiritis test was negative. Now just waiting for the lip biposy. But whatever this is, i want some relief for it. So whatever name this has attached to it I dont really care. Sort of seems like these blood tests and lip biopsies dont carry much weight as from what i have heard you can get SS diagnosis either which way results go.

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  • Posted

    Sorry meant to also ask. We are all different so surely this again may be a hard question to ask but im only learning now. Alls i know about now is that maybe tomatoes arent the best thing for sore mouth. Alcohol and coffee are bad. Anyone have a more extensive list of foods to stay away from? Im sure i can assume obvious stuff like colas, crackers, chips etc junkfood are bad.

    Fish, fish oils, olives, avocadoes good. I eat pritty healhty anyhow. But still a bit unsure if there is something that i should definitely not be eating. Thanks again!

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  • Posted

    Could it be that a negative result come when not in the throws of a flare-up? In other word, should lip biopsy be done when inflammation is high?

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  • Posted

    Hi Lynn

    My symptoms started roughly around October 2011 to February 2012 with the earliest symptoms being arthralgia (joint pain) in my knees and knuckles, fatigue (weakness), myalgia (muscle aches), inability to breathe deeply/chest pain, skin rash, stinging, gritty eyes and dry mouth. At the beginning I had a number of really unpleasant symptoms relating to my head and neck and ability to concentrate and process information. I could not think straight and was unable to leave my house for several weeks because I seemed hypersensitive to my environment; everything was too fast, too loud, too many people - my senses felt completely overwhelmed to the point of sensory overload. Thankfully I don't have this symptom now.

    It took several years to get a diagnosis and whilst I tested positive for Primary Sjogren's Syndrome on lip biopsy, I was told that I had a diagnosis of 'Likely' Sjogren's Syndrome because I don't have the autoantibodies. Hydroxychloroquine has not helped and I have not been offered any alternative medication by my rheumatologist although my dermatologist prescribes me Mepacrine, an antimalarial drug which helps a little.

    Pushing myself too hard can cause a flare up of my symptoms. I love being in the outdoors, running and fell walking, however if I do too much exercise I can have an increase in my symptoms for several days. I have seen so many different Consultants based on my symptoms however they don't really have answers and I don't think they understand how debilitating this condition is.

    Take Care.

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