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How dry is dry

Posted , 5 users are following.

charlotte1824
charlotte1824

Can someone tell me how dry one needs to be to consider sjorgens. At the moment My mouth feels uncomfortably dry, my eyes feel dry, my nostrils are bone dry. My throats feels like it sticks when I swallow. My glands hurt.

Sounds silly but if I lick my lips or my arm there is wetness and I can get some saliva by sucking my mouth but my mouth still feels dry and it's sore, my gums feel Sore and burning.

This isn't the first time that I've had this problem but it has eased up in the past although I do get tonsil stones a lot and my nose very rarely runs. I always have a drink with me whenever I go and I've had problems for about 7.5yrs now where I ache and hAve fatigue most days. I have had positive ana's in the past several times but then Further tests like inflammatory markers don't show anything.

1 like, 12 replies

12 Replies

  • lily65668
    lily65668 charlotte1824

    Posted

    Hi Charlotte,

    I don't think you even need total dryness to be diagnosed with Sjogren's. I only had a very dry mouth for the first year, but it's never really been a problem since then, though I often get dry nostrils, sometimes with quite brisk nose bleeds. The dryness moved on to my eyes, where it's been coming and going ever since (definitely coming again at the moment). I suspect dryness is also playing a part in the asthma that's been developing over the past couple of years. However, like some other SS sufferers, I have more trouble with tendon pain and peripheral neuropathy than actual sicca symptoms these days.

    It's a very wily disease and affects us all in different ways. As I've stated before in these boards, my inflammation markers are all over the place. I can have perfectly normal results when I'm clearly in the middle of a flare-up, and I regularly show high anti-salivary gland antibodies, even though I haven't had a seriously dry mouth for 20 years!

    I think we just have to manage our symptoms as best we can, with medical help where necessary.

  • tj268
    tj268 charlotte1824

    Posted

    Hello charlotte, I am somewhat similar to lily whereas I didn;t have dry eyes at first but had problems swallowing and choking (even on air it seems) but have horrible joint, muscle and tendon pains. Lately my eyes feel like there are tiny rocks inside but I just use OTC eyedrops nd it helps. As far as nosebleeds, I did get one out of the blue. Kinda bad. Like Lily says, it affects each of us differently. I am still dealing with crazy symptomes now I don't know if they are realted or not. My best advice is keep getting the bloodwork and if you haven;t , suggest SS to your Dr. There are other ways to determine it though perosnally I wouldn;t do the lip biopsy. Keep us updated and wishing you the best.

  • charlotte1824
    charlotte1824

    Posted

    Thank you both for your answers. For some reason I didnt get an e-mail notification so didnt know anyone had replied.

    Thats really good to know, you have given me a small bit of hope also that this really dry sore period might ease up a bit, at the moment im drinking all the time and chewing gum, sugarfree sweets and using eye drops but my gums feel so sore. I can cope with my stingy eyes which feel like ive been in a swimming pool for the last week but my mouth is really irrititating me.

    I feel at the moment that im comimg down with the flu although i know it will unlikely develop into a cold or flu from past experience many times. I have some blood tests tomorrow and I told the GP that i highly suspect Sjorgens.

    I also for the first time told her that I need a Dr that once they see bloods that are ok dont just wash thieir hands of me. A rheumy before thought I had lupus and gave me steroid injection and hydroxycloroquine but then discharged me when my bloods were ok and i said ive never had a rash, so i stopped the hydroxy after a couple of weeks. If it turns out to be Sjorgens then Im going to kick myself for stopping as maybe it would have warded off some of the fatigue and body pains.

    Do either of you take any medications like hydroxy and does it make anything better?

    Can I ask why you say you wouldnt do the lip biopsy? 

    Thanks again.

    • lily65668
      lily65668 charlotte1824

      Posted

      Hi Charlotte,

      I suspect the email notification went into your junk mail. My notifications from this site have been doing this for some months now, though they never used to. I check my junk mail every day ever since they "improved" Hotmail yet again (sigh...) a while back. It seems to have become over-sensitive to what it thinks is junk these days.

      To answer your question, I've never taken any DMARDS like hydroxyquinolone, so can't say whether or not they'd make a difference. As a former nurse, I'm a bit resistant to the idea of taking any medications that I don't feel are essential.

      The only prescription meds I regularly take are L-thyroxine for an underactive thyroid (a common problem with all autoimmune conditions) and, more recently, a steroid inhaler for asthma. This only started around the age of 70, but I understand that lung inflammation can be another symptom of Sjogren's. I also use OTC eyedrops several times a day for my dry eyes.

      Why did I never have a lip biopsy? Mainly because by the time I got anyone to take any interest in my ragbag of apparently unrelated symptoms, dry mouth was no longer a serious problem for me. It was my first SS symptom, and was very severe for about the first year, but then it largely cleared up, to be replaced by peripheral neuropathy and dry eyes. The various other symptoms came later. It was 10 years after the first symptoms before I got a diagnosis - which I gather is about par for the course.

      Other reasons for not having it were the risk of nerve damage, leaving the individual with permanent tingling or loss of sensation in the lower lip, and the fact that it can come up negative in people who clearly have SS. For me, it didn't seem worth the risk, especially as I had no intention of taking DMARDs or immunosuppressants if it came back positive. But we all have to make our own decisions. Interestingly, anti-salivary gland antibodies still show up in my blood from time to time - sometimes quite strongly - even though I haven't had a serious problem with dry mouth for 20 years. I'm afraid that's Sjogren's for you! As I've said elsewhere, it's a devious disease.

  • lisalisa67
    lisalisa67 charlotte1824

    Posted

    I dont think the markers mean anything in terms of sicca syndrome. It is how to remoisturize the body that needs to figured out. They have no cure as yet. This creates a whole lot of anxiety too that doesnt help anything. Keep drinking lots of water, throw in a lemon. Im trying to figure out how to het the fluids to moisten everything myself.  My RA is such a kind man he has explained its all maintenence..there are some meds too for the maintence. Its hard. I was going to post how do we get the fluids to do their magic in out bodies. I drink fluids. Maybe not enough. But i try very hard too. I also drink ensure. I figure why not. I wish someone on here was really well read on this and can answer how to rehydrate with this. And many drs have no knowledge of any of this. one dr laughed and said you are dry..it is dryness drink more. Another said menapause does this too. I do have an RA though. I have no answers i feel terrible for everyone with this it makes so many troubles in our bodies. Sometimes i wonder if they hooked me up to an ive and injected fluids where needed if it would help. I have dry eyes, sinus which comes with a host of issues, ear tinnitus,inner ear weird sporadic spasms..just awful stuff. Once i thought it was all anxiety but too many drs kept saying it was not. i will say it triggers anxiety. My hope comes from the people who have had it a while and that they are alive and well. And it can and does go into remission or calm down. My opthamologist explained that to me.  Im so new into all this so i have no wisdom to input but i can relate to the mess it bring on.
    • lily65668
      lily65668 lisalisa67

      Posted

      Hi Lisa (and Charlotte),

      I'm glad the ophthalmologist mentioned the possibility of remission. Not enough doctors stress that. In my 22 years of Sjogrens, I've had a lot of remissions, including one or two periods when I had no symptoms at all for a few months. Mostly though, it's just been that my symptoms have lessened for a while before coming back. I have to say remissions seem to be getting fewer and farther between in recent years, but then I suspect a lot of my current aches and pains are partly down to old age anyway.

      For most people, Sjogren's isn't a seriously disabling disease, though some sufferers undeniably draw the short straw. Sites like this one, though an invaluable support, can give new sufferers the impression it's all doom and gloom. This is because medical forums dealing with any condition understandably tend to attract those worst affected, as they need the most support. The majority of mildly affected sufferers rarely come on forums. In saying this I'm not belittling the very real sufferings of some of the posters on here. I'm just trying to put things in perspective.

      Hydration is a problem for all of us, of course. However, if you're suffering badly from dry mouth you should drink little and often, rather than large quantities of water at any one time. That will just wash away what little saliva you have. Our saliva contains a lot of valuable chemicals, including natural antiseptics, so it's precious. Putting a squeeze of lemon juice in the water - as another poster mentioned - can help stimulate underactive salivary glands.

      I'm afraid IV fluids are only useful if you're systemically dehydrated - e.g. after severe diarrhoea, a high fever, or a period where you were deprived of fluids. There's no way they can be directed at dry areas of the body, they just go into your circulation and out through your kidneys, like the fluid you drink. It is, however, important to avoid dehydration, as it will make sicca symptoms worse.

      I've never come across Ensure before but I've just googled it, and it looks as if it would be a good idea for anyone feeling generally run down. I suspect most of us take a whole variety of supplements. I certainly do. One supplement that's particularly valuable for SS sufferers is omega 3, in the form of fish oil. This is especially good if you're having arthritic joint pains.

      The point about stress and anxiety is a good one. I've always found that my symptoms get worse - and new ones sometimes develop - at times of prolonged stress. I don't believe for a moment that Sjogren's is caused by anxiety, but it can certainly be made worse by it. This is true of all autoimmune diseases. That's why it's very important to try and keep a positive outlook as far as possible, and not worry too much about our symptoms.

    • lisalisa67
      lisalisa67 lily65668

      Posted

      Thank you. This is all overwhelming right now as it seemed to have just come on so fast for me. Had the flu in december then this all began in January. Definitly little signs along the way but now way more obvious and im aware now. 
    • charlotte1824
      charlotte1824 lily65668

      Posted

      Hi Lily,

      Thank you for your words, im glad you are so positive. Its nice to hear someone be positive and I understand what you mean when you say that people on forums are in need of the greatest support so therefore the more positive experiences are less likely to be posted.

      I will definitely try some fish oil once I have seen the dr as i dont want to take anything whilst they are doing tests just incase it lowers inflammation markers etc.

      Thanks again.

  • lisalisa67
    lisalisa67 charlotte1824

    Posted

    I just came across an article i dont know of it is true at all. But if it is i just want to note smokers tend to most always test negative for sjogrens. No clue why. And although it is now treated as almost criminal and hated people do smoke cigarettes. 20% of the population still smokes. And noone would ever imagine an auto immune illness in their future. So i read that and thought I would share it. Oddly quitting smoking rattles it up amd unmasks it  and then they tests accordingly. So i have no clue if this is relative or not but thought id share.
    • lily65668
      lily65668 lisalisa67

      Posted

      Hi Lisa,

      I can't say I've ever heard about this, but then I've never smoked - unless you count heavy passive smoking as a child. Maybe one of the others will know something about it. For what it's worth, my mother smoked 50 a day and had a few possible SS symptoms (RA, Raynaud's) from early middle age, though she was never diagnosed.

    • tj268
      tj268 lisalisa67

      Posted

      Hello, this is really interesting! I am a smoker. I don't drink or do drugs except what is prescribed lol, but it is my vice. I did test positive on SS test ANA, SA and ESR. I would like to still read that article. Can you message it to me if they won't let you post it here?

    • lisalisa67
      lisalisa67 tj268

      Posted

      I do nothing else but have a few cigarettes a day. I dont even drink coffee. So when i saw that it spooked me. I was diagnosed. I didnt save it saw it off anither forum. If i come acriss it again ill send it in messages. 
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