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Suffering with Sjogrens

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hayley87179
hayley87179

Hello, am a 46 yr old female - presently suffering with sjogrens. I was diagnosed last year and didn't feel any real symptoms coming on at first. I'm now suffering with painful wrists, dry eyes and

dry mouth, I have thrush and also fatigue. I've had 12 teeth removed. I read up that any

stress can make sjogrens symptoms progress. I believe its also affecting my concentration too.

I am trying to stay stress free at the moment. Although its difficult as I have just lost my job, through

illness. My doctor has confirmed that everything I am suffering with at the moment is down to sjogrens. I feel quite overwhelmed. I was wondering if anyone knew of any dietary changes that I can make, to help me manage my current symptoms

please?

I am greatful for any advice or information, on what to do next

3 likes, 100 replies

100 Replies

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  • lily65668
    lily65668

    Posted

    I'm inclined to agree with Sweetness - you only need to go gluten-free if you have coeliac disease. I don't think I have it, though I have noticed that I'm less and less drawn to wheat-containing foods as I grow older. Nowadays I only occasionally eat breakfast cereals and only a couple of slices of bread per week. And I've never eaten a lot of cakes and biscuits because I don't have much of a "sweet tooth". On reflection, maybe cutting back naturally on the gluten foods even had something to do with my remission. Who knows?

    Like Sweetness says - practically everything has gluten in it anyway so if you try to give it up completely you're in for a pretty miserable life. However, there's no harm in eating gluten-free bread, biscuits, cakes, pasta etc. And I'd advise cutting back severely on ready meals if you've been relying on them. Apart from gluten, they're loaded with salt, fat and the worst kind of sugars (even the savoury dishes).

    Unlike Sweetness, I eat most things - including red meat three or four times a month - though I do eat a lot of green, leafy veg. I don't think dairy affects me much either way, though that's another thing I'm not really drawn to - apart from pigging out on high-fat cheese from time to time! I use a small amount of butter in cooking and on my rare slices of bread too. I once worked for a major food company, so I know what goes into those "healthy" spreads! I drink plenty of weak tea (which also contains caffeine) but no sodas at all. They really are the worst thing if you have serious problems with dry mouth. Oh, and I admit I drink more than the recommended amount of wine - both red and white!

    While it's a good idea to try and identify foods which make you feel particularly bad and then avoid them, it's also important not to get so obsessed with your diet that you make yourself miserable. Food is one of our great pleasures in life.

  • samantha1951
    samantha1951

    Posted

    There is no special diet as I know of . I have not been officially diagnosed yet but have all the symptoms, and they are AWFULL? The mornings are worse when I cough up gunge and can't speak for a while. My eyes are bad but my mouth worse, I also have no appetite at all. I see my specialist soon as I believe that although there is no cure there is medication . Do you take any?

    I am desperate!

    Regards

    Sammy.

  • lily65668
    lily65668

    Posted

    Hi Sammy, sorry you're feeling so bad. (Hope this doesn't get posted twice, btw - I had a mini-crash while typing it and found it had disappeared when I got back in!)

    I believe there are medications that are quite effective, but I've never been prescribed any, even in the bad times. I live in a country where Sjogren's isn't taken very seriously, but if you're in the UK you'll probably fare better.

    As I've said elsewhere on this forum, you should avoid sweet, fizzy drinks, and even smoothies, like the plague! They really are the worst thing for dry mouth. Drink small quanties of water at regular intervals thoughout the day. And try to identify any foods which make it worse.

    One thing I've learned is not to eat dairy during the evening - though I don't eat a lot of it at any time of day. Eating cheese, cream and particularly milk chocolate seems to fill my throat up with thick mucus that threatens to choke me in the night. If it's very bad - usually because I've forgotten my own rules and eaten something I shouldn't - I take an over-the-counter mucolytic (something that breaks down mucus) before going to bed, which helps a bit. I can't give you any product names as they're all different over here, but you can ask your chemist about it.

    I'm sure you'll get help for this once you get your diagnosis. The best thing to do is try and stay positive, however rough you feel and especially try not to put too much attention on your symptoms. This is an auto-immune disease and is therefore very easily influenced by your general mood.

    • chris39732
      chris39732 lily65668

      Posted

      Hey all. Some good posts on here. I've been struggling myself since last July. Mainly with dry throat and dry mouth. I pritty much have to chew gum all day long. If i dont my mouth and taste in my mouth goes very bad, as well as super dry fast. I was tested for Sjögrens but i did not have the antibodies present. They did the lip biopsy thing. I was diagnosed with Fibro when i was about 20. Now im 45.

      I do crossfit but now am struggling due to the dryness..Makes it hard to train when my throat is so dry. Just feel like i dont have the strength i used to have. I still have this feeling that i do have Sjögrens even though i was not officially diagnosed with that. Or it could be symptoms of fibro. Ive heard the dry mouth thing exists with that too.

      Im surpised that smoothies would be a bad thing. Why is that?I make very healthy smooties every morning with various berries, oat milk, nuts, flaxseed. Suprised that would be a bad thing. I do find with these forums that everyone is different. So just my oppinion but its hard to perhaps say not to eat this, or to drink that. As we are all different, and our bodies surely handle things differently as well.

      I was on pilocarpine for about 2,5 months but it did nothing for me. Has anyone had similair experience that it just never worked?

      Im also having painful dryness on both sides of my nose..have to put cream there daily. During the night i have been using xyli melts which i put in my mouth and push up to the corners of my gum. This helps a bit for the night with the dryness. All the best to you all!

  • angie51763
    angie51763 hayley87179

    Posted

    Hello there, I was doing an internet search on Sjogren's and came across your posts and it is very helpful to read about other people's journey with this disease.

    I am a 51 yr old female and have been suffering from Sjogren's for about 3-4 years now - mainly the dry mouth but just recently, the eyes have been quite bad. I was diagnosed with Oral Lichen Planus back in 2006 and often patients with OLP also suffer from Sjogren's. I guess with these autoimmune type diseases you don't just get one - they like to give a few freebies along the way :-). I have a very high ANA count which on the blood test forms points towards Rhuematoid Arthritis or Lupus but so far I have not had any cofnirmed diagnosis on either of these. Last year on top I was diagnosed with sector RP - retinitis pigmentosis and just recently been struggling with my eyes.

    What I have found is that every 18 months or so my body will often have a flare up and especially during menopause it seems to trigger a lot more of these symptions. Some days when the pain is so bad they can be I know, really difficult days. I guess I just wanted to share with you that when you are going through one of those tough times - and oh, I know about those tough times - there's been a few for me - one right now, but I keep telling myself that this will pass - things will get better, life may not ever be the same as it was before but the days can be much better than they are right now.

    Believe in yourself, trust your own instincts and what your body is telling you. You are the best judge of it. One of the hardest things about living with these sorts of conditions is the isolation of not knowing anyone like yourself. That's why it was so nice to come across these posts.

    Would love to hear how everyone is doing now as it's been at least four months since the last post - maybe things have improved for some? :-)

    • lily65668
      lily65668 angie51763

      Posted

      Hi Angie, Interesting to hear about the Lichen Planus. They thought I had it back in 2008 - though not in my mouthwink - but discovered on biopsy it was fungal. They eventually cleared the worst of it with a mixture of different creams and pills but it still recurs every few months. Another of the joys of Sjogren's, I imagine!

      Sorry to hear you're going through a bad time at the moment. My own bad times are well in the past now (so far, anyway!) but I still remember what it was like. Sometimes I could hardly open my mouth to eat because of the bleeding sores at each corner. Same thing in the corner of one eye, endless attacks of conjunctivitis, waking some mornings with my left hand a painful claw that I couldn't open till midday, etc. etc.

      I've been fine for the last five years, apart from a bit of stickiness in one eye, the odd attack of Reynaud's in one hand and the usual aches and pains we can all expect at 70.

      I'm interested in what you say about trusting your own instincts. That makes me think you'll go into remission too eventually. I'm a former nurse and started noticing quite early on in my career the connection between body and mind, in most diseases but particularly the auto-immune kind. I couldn't tell you how it works, but I know I can influence my own symptoms. It's nothing as simple as "thinking positively" (though that never hurts) but rather that I try to acknowledge that I'm aware I'm doing this to myself somehow and at some level. That doesn't mean I'm blaming myself of course. And it definitely doesn't mean my symptoms (or anyone else's) are imaginary. You can die of a psychosomatic illness.

      I suspect you're the kind of person who may be working with affirmations. I've used this method to help with other things, though it didn't seem to help with Sjogren's.

      The turning point for me came about five years ago when something happened that was so extraordinary, there was no longer any escape from realising I was somehow in control. I've posted this in another Sjogren's forum but I'll re-post here at the risk of boring everyone to death.

      One of my earlier symptoms, starting a year or so after the dry mouth, was an unpleasant tingling sensation in my right big toe. This got steadily worse over the next few years until the toe was almost completely numb. The numbness was real, not imagined. My GP established this by poking my toe with the sharp and blunt ends of a needle when I couldn't see what she was doing. She wasn't interested - said it was peripheral neuropathy due to old age. (I was in my early 50s.) By this time I had a whole ragbag of apparently unrelated symptoms which no one - GP, dermatologist, dentist, ophthalmologist etc. - had managed to put together. I hadn't spotted it myself either - Sjogren's is one of the less common autoimmune diseases and I had no recollection of ever having heard of it!

      Over time, I got used to taking extra care of my numb big toe, just as a diabetic would, but then another problem developed. Every time I touched the area where the nerve runs along the inner side of the instep to the big toe I got a terrible feeling like an electric shock. I had to psych myself up to wash and dry my foot every day. Putting on shoes - and especially boots - was agony too, but I used to find that once the shoe was on, the sustained pressure didn't hurt any more.

      I took this on board as well, and assumed it would always be the same. Then one day, the electric shock sensation wasn't there. Just like that! And I had normal sensation in my big toe again. It hadn't been gradually improving - the agony of touching my foot had been very much there just the day before. As a nurse - and one with specialist neuro training as well - I knew proven nerve damage couldn't suddenly heal like that, especially after more than ten years. But it had.

      That night I was awoken by a terrible tingling sensation... in my left big toe. It felt exactly the same as when it had started in the other big toe all those years earlier. I sat up, put on the light (the bedside one - the light in my mind had already gone on by this time!) threw off the covers and said out loud to the offending toe: "No, we're not doing this!" Then I went back to sleep. After three or four days the tingling stopped.

      Over the next few months, all my other Sjogren's symptoms subsided then virtually disappeared. I realise they might come back one day, of course, but this experience gave a real boost to my confidence in dealing with my own immune system.

    • angie51763
      angie51763 lily65668

      Posted

      Hi Lily

      It was really great to read your post and most interesting hearing about your journey. It's amazing how these auto-immune diseases react and attack our bodies differently but similar in the same vein and I find it fascinating to learn about other people's experiences.

      Sorry to hear Lily that you get oral lichen planus also and yes, I know it appears in different parts of the body ;-). Mine seems to attack the inside of my mouth and it appears as a white-patchy colouring on the inside of the cheek and along the side of my tongue.

      When I am having a really bad episode the OLP cuts away the side of the tongue (usually it attacks only the one side at a time) and both sides of the cheeks and even the roof of my mouth down the throat which it feels like lots of tiny mouth ulcers so you can imagine how painful that is. When it's this bad let's just say I'm pretty miserable lol but thankfully I haven't had a really bad outbreak like that for a number of years now.

      Amazing though that when the body stops attacking itself, things heal up and things like the tongue actually healed themselves. I still have the OLP inside the cheeks of my mouth and my gums no matter what I do, never look that nice pinky colour but it's manageable and my flare ups don't seem to last nearly as long. They use to last months and I am under a specialist at the hospital who checks me out every four or so months just to make sure it's not changing so I am thankful for that.

      It was really interesting reading about your toe numbness and how it just went away like that. It made me think of my own flare ups and a line of thought I have is that the body finally gets sick of attacking a part of itself as if it says, "you're no fun anymore - I'm sick of 'attacking you' - I think I'll go and find some 'other' part to attack' lol. I'm just so pleased for you that it didn't attack your other toe and decided that it had done it's dash.

      This is what I often feel and I joke about with family that it doesn't get it's kicks out of attacking my mouth so much - the OLP so it goes on to attack my eyes now. Hopefully with my eye condition I won't go blind (but there are no guarantee's - but I'm optimistically hopeful given my age and length of time I have needed to wear glasses). The trouble I find though when you have one condition that it doesn't always typically follow the symptons that you might expect because of other autoimmune type conditions. This I find with my eyes.

      With sector RP your peripheral vision starts to go and I have some peripheral loss but I have a spanner thrown into the mix in that the flare up with Sjogren's clouds (lol now that's a pun) my symptons and not only is my sight lessen-ning but it's also quite painful. My eyes burn and the muscles around the eyes don't work nearly as well and finding the right prescription is very difficult for me. I can't seem to tolerate progressive lenses nor can I wear heavy type frames because the nerves around my eyes seems to be very sensitive so I'm not sure whether this is part of the Sjogren's side of things or not?

      Talking to the specialists I find is often frustrating in that they can only 'see' what appears to be going on for you but unfortunately they cannot 'feel' what you feel that is going on and so I often come away knowing that they really have no answer on what is taking place lol. That's where I have learnt to trust myself in these situations. I'm hoping that this recent flare up which has been going on for some weeks now will eventually burn it'self out and let me get back to reading my books lol which I hate not being able to do. I believe that my body will let this latest flare up pass by and so normal (well, as normal as my body will allow :-) ) transmission will resume.

      Thanks again Lily for sharing your journey and I appreciate your posting. Hope the weather where you are is nice - it's pretty cold down under lol.

    • tinu
      tinu lily65668

      Posted

      Hey Lily, your viberations are strong enough to give you what you want, excellent.

      I've only just being diagnosed with Sjogren syndrome, with very little symptoms, and surfing the net to find similar experiences from others, first one was here and I read your post, brilliant !

    • lily65668
      lily65668 tinu

      Posted

      Hope your symptoms don't get too bad, Tinu. Not everyone suffers agonies with Sjogren's, though I appreciate some people have a terrible time. Even if they do get worse, don't despair - just hang in there and try not to give the condition too much attention. (But enough attention to things like dental hygiene, reasonably healthy diet, moderate exercise etc.) Hope you come out at the other end of the tunnel, like I eventually did. So far, anyway!wink
    • george23539
      george23539 angie51763

      Posted

      Hi there,  been reading post, and your right best way to deal with s. s. is to trust your own body and instinks. ive had sohgrins, for around "6years or so, but only found out that i had it around 3years ago, all the usual dry mouth, eyes skin hot red feet ears, bowel disorder chronic ibs. Problem with my liver also cysts in bladder, chronic nasal problems, brain fog,  chronic saladantist, the list goes on and on,  but i find most general medical people, havent a clue know very little about this horrid illness and while trying to treat a medical problem, give medication that can make things worse while trying to treat the problem that you go with. So now now i just do what i think is best for me, and seem to help me anyway,  maybe ive become to know my illness so well now, im the best judge to know what to do, i drink plenty of water all day long eat lot of fish salmon ect,  plenty of fruit, and lot of sea air,  as often as i can get sea side, and use very little in way of meds, i try to go for more natural ways to overcome some of these horrid illnesses, for me it seems to work, kind regards to you and all s. s. sufferers 
    • jnecamp1978
      jnecamp1978 angie51763

      Posted

      Wow, angie, it was a very notable in hearing your story and situations with Sjogren's. I too have it and noticed that the insides of my cheeks really hurt sometimes, but I figured it might be due to the fact that where the sores are, there is a missing tooth there. Now, I have more insight on what is going on in my oral cavity. I have something else to share with my rheumatologist. I will also bring this up to my dentist as well!
    • jnecamp1978
      jnecamp1978 george23539

      Posted

      Hi, George..thanks so much for sharing your diet. I was trying to figure out what will work best for me with condition. I have extreme fatigure as well
    • Sunsetstuff
      Sunsetstuff lily65668

      Posted

      Hi Lily! You posted 7 mos ago on body-mind connection. You are a nurse with a science background - Im a retired Deputy Coroner, so I am as well.

      I was just diagnosed with Sjogrens (secondary - I have Hashimotos). I just wanted to know how much your post helped me to confirm my own belief in mind body reality! Thank you so, so much!! I know I will be better and life is good. Have a great weekend, week, life knowing you helped someone so much!  xoxo Monika

    • lily65668
      lily65668 Sunsetstuff

      Posted

      Thank you, Monika! It was so kind of you to write.

      I'm convinced the knowledge that we can exert some degree of control over our bodies is very powerful in the case of auto-immune and, indeed, other diseases. I believe practically all disease has a psychosomatic component anyway. To my mind, we haven't even scratched the surface of the nature of the immune system, as opposed to its functions (T-cells etc.) This falls more into the sphere of philosophy than medicine so I can't see the medical research establishment, which is largely funded by big pharma, ever taking an interest in that one.

      I'm sorry to hear you now have Sjogren's, but I feel sure that someone with your attitude will be able to keep it under some kind of control.

      You have a great life too!

      Lily

    • ashwani99192
      ashwani99192 angie51763

      Posted

      Hello Angie,

      I also diagnosed with OLP this year and mouth is like someone cutting my mucosa with knife .

      Could you please help me what exactly you do to overcome this problem

      Thanks

      Ash

    • gayle19455
      gayle19455 ashwani99192

      Posted

      Hi Ash. I'm new to this disease but also have had brain surgery for extreme shaking of. Head and arms. And most of my 71 years have lived in pain with fibromyalgia and cervical dystonia. After my brain surgery i began having extreme pain in my eyes when waking up from dryness and what looked like thrush and sore tongue and mouth and i couldn't thhink very well. I went to an eye doctor. Who diagnosed me with Sjogrens an put a patch in my right eye (which was the most painful ) that had stem cells to repair my eye. It worked...still dry but not painful. After getting on this post I also began rinsing my mouth with Benzoil peroxide and putting salt on my tongue and. Brushing my tongue. It has helped a lot. I still have burning mouth but some of this is exacerbated by the eelectric currend going through my mouth by the Deep brain stimulator. I have lost a lot of teeth also. Now I'm waking up with hip or shoulder pain...have to take a narcodic pill daily or i feel sick. I also am now taking vit d, fish oil borage oil tumerick pilllls (for inflammation) lutein fior eye health and a good multi vitamin. Im on plenty of drugs but none for Sjogrens. There are many days I am not sure if I can make it but i work a few hours a day helping my son with his business and work in his garden. I dont socialize because of my shaking and can't speak without slurring because of the deep brain stimulator. Because of. My burning mouth i constantly want something cold and will give in to ice cream daily...know this isn't good but sometimes we have. To have something we enjoy. I hope a few of my. Suggestions will help you.

    • pam_87693
      pam_87693 gayle19455

      Posted

      Hi Gale oh dear you have been through a great deal. I'm not quite sure where to start. I had a friend who had the same problems as you, she was much older than you gale before they started. Back to your problems the cervical Dysuatomnia is I think because you have had neck problems possibly related to you being hyper mobile of something similar. I know my friend could sit on the floor at 92! Back to your Sjogrens, yes neck and shoulder pain again relates to you being hypermobile as does the other pains too. However I think you must have a form of arthritis be it caused by being hypermobile or RA or indeed PsA. Re your Sjogrens you do need help. You need to see a rheumatologist who deals with Sjogrens Syndrome. My consultant Dr. E. Price is a very kind lady and is the President of the BSSA the charity for Sjogrens. You need help to stop your pain, proper medication for that and mouth sprays, toothpaste etc. I really do suggest you see a Sjogrens expert assuming you live in the UK you could see Prof S. Bowman who is in Birmingham and London, Prof Ng who is in Newcastle, Dr. N. Sutcliffe who is in London too. I also think it would be useful to join the BSSA as they are wonderfully supportive and if you do ring Heather on 01214780022 and say Pam suggested it. I run a FB group for the BSSA called BRITISH SJOGRENS/SLE/APS/EDS as I have Sjogrens, Lupus and I'm hyper mobile too! Your most welcome to join us. 

    • gayle19455
      gayle19455 pam_87693

      Posted

      Thank you Pam.  I live in Seattle, USA.   I see a rheumatologist today but I don't think He's the best and will probably try to see someone else too.  Thanks for all you suggestions.  I will put it to my doctor today.  I find I have bad restless leg symdrome when I try to sleep at night.  I suppose this is another symptom.  I inherited the Dystonia from my Mom and out of 8 kids I'm the only one who inherited it of which I am glad.Doctors think I have had the Dystonia since I was a teen.  i have been a single Mom since 1994 with 3 sons so I have had to be active.  Now, though, I'm grateful my sons are taking care of me. I find the brain fog to be most unfortunate now however, since I am helping my son with his business, and I have to be very careful not to make mistakes.  The gardening helps me because I forget all my concerns when I'm digging in the dirt! smile

    • lily65668
      lily65668 gayle19455

      Posted

      Hi Gayle,

      I have no suggestions but would just like to express my admiration for how you're coping with all these problems! I hope you can get some help from the rheumatologist.

    • gayle19455
      gayle19455 lily65668

      Posted

      Thanks Lily. No help from my rheumatologist.. have to find another one I guess.
    • jessica83786
      jessica83786 gayle19455

      Posted

      Hello Ms. Gale, my name is Jessie, and I just read your post about all the different health problems you are going through, I am so sorry to hear about all your pain and shaking and the many health problems you have to deal with. I can't imagine how hard that must be for you.. it's nice that you are still able to help your son and enjoy some activities like working in the garden. However I know you must wish you were able to do more.

      I see that you posted this a few years ago, but I hope you are doing well and able to still find some comfort despite your pains. You mentioned that you have to take many different medications, but I wish you one more- joy. "A joyful heart is good medicine." (Pr 17 22) Plus it doesn't have any side effects 🙂 I hope you continue to find things that you give you joy, and I wish you the best. -Jessie

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