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Suffering with Sjogrens

Posted , 81 users are following.

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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  • jenny55563
    jenny55563 hayley87179

    Posted

    Sjogrens, rheumatologist (first meet) said he thinks I've got this? And told me to use some eye drops and sort my periods out, as far as consultations go he's the best! I cannot work, I've given up martial arts, when I'm really bad I just have to sit and read. I also explained while I get dry eyes I'm quite frankly a dribbler, with no mouth ulcers! I'm not convinced anyway he'll see me in two months sad I'm with a gastrologist also I've had a huge number of tests the only thing that came up with anything was high inflammation in stool, and occasionally low calcium, low cortisol, high igA, primary hypothyroidism with high antibodies (treated for a year bloods all normal now) symptoms (it's quite a list), fatigue, headaches, migraine,  joint pain, sometimes can't bend a joint, hands are becoming weaker, symptoms upper ab pain lower left an pain, random infections never experienced before (cellulitis, uti, gallbladder infec, boil on my ear!?) very cold hands all the time.  Had following tests: upper ab ultrasound (gallbladder), synachen stim test (cortisol), hyper parathyroid anti body screen, rheumatoid factor, thyroid ultrasound (thyroiditis but resolved now), colonoscopy/biopsy, camera pill endoscopy (awaiting results), glandular fever, usual bloods liver function, kidney function b12, vit d etc. All essentially normal apart from raised white blood cells also have swollen glands and petechia rash.  Now I understand that's quite a lot but lim pushing them, I want to get back to work and fitness what I'd like to know I'd does that sound like sjrogens to you guys? Thanks x
  • kimberley_89054
    kimberley_89054 hayley87179

    Posted

    Hi All.

    Delighted to find this thread. I have had auto-immune immune problems most of my life. Vitiligo since nineteen. That was hard. Hypothyroidism since about fifty. I am fifty eight now. I have been struggling with common sjorgens symptoms for two years now. Both my parents have died during this time,so difficult to distinguish between grief and fatigue.

    I have a history of bulimia, and feel this has somehow caused my salivary glands to die off. I have been pxd Salagen five mg four times a day. It helps but it still feels as if my saliva has been replaced by thick salty mucus. I long for the cool flow of clean saliva.

    Lily65668 writes inspirationally about mind over matter. I am particularly interested in diet. I get low and eat too much of the wrong stuff to comfort myself. I just love whipped cream and I know it's bad for me. Historically I have done well with diet change to improve my health. I'd love to know what others find helpful. I'd especially like to hear from Lily65668 again. Thank you and best wishes fellow dry mouth sufferers.

    • Sweetness
      Sweetness kimberley_89054

      Posted

      Hi Kimberly,

      I just lost my mom last month, it was so stressful for me that I got the flu and got pneumonia . I was diagnosed 5 years ago but the meds help me a lot . I take supplements like fish oil, vit c, magnesium, and d3. Diet is key for your overall health. But what works for me might not work for you . Stay positive proper diet and

      exercise try one thing at a time see which one makes you feel better.for dry mouth stay away from acid foods makes it worst. Drink water little bit at a time and use a toothpaste for dry mouth like Biotene and mouth wash. Hope this help.

    • kimberley_89054
      kimberley_89054 Sweetness

      Posted

      Hi there. Thanks for your reply.

      Can I ask. What meds are you on. How long did it take for them to help?

      It's good to connect. Thanks again

    • pam_87693
      pam_87693 kimberley_89054

      Posted

      Hi I am Pam from the UK I think you must be in the U.S. My Conustant suggests Plaquinel as a first choice for mild DMARD, also many find a mainly vegetarian diet helpful. If your in the U.S. You may have difficulty getting non GM fruit, veg and cereals. Many people follow the low sugar, lows carbohydrate diet. I make porridge with almond flour for breakfast. Obviously avoid fast food when possible. Perhaps try nut milks, and cook with a quality vegetable oil like olive. Drink pleanty of water, and protect your teeth. I use a very high fluoride toothpaste. Do you have IBS? Of course stress as I am sure you know feeds AI problems, hopefully despite your sad loss, now your life may become less up and down. I lost both my parents at a young age, but was saddled with my husbands elderly aunt and mother until 8 years ago. 
    • Sweetness
      Sweetness kimberley_89054

      Posted

      Hi

      I take plaquenil twice a day. But at first when I was diagnosed I was on methotrexate and steroids to get inflamation down . That work very well for me . Now with plaquenil have no complain my joints are not aching just feel little fatigue but have to pace myself and rest . Can I ask Pam what is the name of the toothpaste I have problems with my teeth always hurting . Keep in touch

    • pam_87693
      pam_87693 Sweetness

      Posted

      IF your in the UK you can ask your dentist or GP to prescribe 💖
    • lily65668
      lily65668 kimberley_89054

      Posted

      Hi Kimberley, You are on thyroxine for your hypothyroidism, aren't you? (Just checking!) I can well understand that the grief you must be suffering is making the Sjogren's worse. Any kind of stress will do that. Mine got much worse for a while after my mother's death but then went into remission a few years later. Just lately I've been dealing with a stressful situation concerning a friend with dementia who I've been looking after since all her family are on the other side of the world. And sure enough, I've started getting Sjogren's symptoms again after more than five years of being practically symptom-free. However, I'm glad to say they're not too severe - nothing remotely like when it all started 20-odd years ago - and I feel I'm on top of it.

      For me, the key to getting in touch with my own immune system, and thereby staying ahead of the condition, is to acknowledge that there's a massive psychosomatic element to all auto-immune diseases (and many others too). And I can't stress enough that psychosomatic doesn't mean imaginary. You can die of a psychosomatic condition (though not Sjogren's, fortunately). The only link between the two is that worrying excessively over your health can of itself lead to psychosomatic conditions.

      I'm not doing anything in particular to overcome my current minor flare-up as I try to maintain a reasonably healthy lifestyle anyway. Apart from a couple of attacks of conjunctivitis due to dry eyes, for which I use over-the-counter drops, joint and muscle pains are the main problem at the moment. I'm dealing with this in the usual way - making sure I walk for at least 15 minutes every day even if I'm in pain, longer if I'm not, but being careful not to overdo it. The trick when dealing with joint conditions is to exercise enough to maintain mobility while avoiding over-stressing your joints during flare-ups.

      You shouldn't beat yourself up for the odd dietary binge. You know the old saying: "A little of what you fancy does you good". It's sometimes good to spoil yourself just a bit, as long as it doesn't get out of control. And why do you say whipped cream is bad for you? If you do a bit of research, you'll find that a lot of the old received wisdom on diet is going out the window lately. (I never believed half of it anyway!) We used to be told we shouldn't eat eggs or dairy fat, now we're being told they're good for us in moderation. However, you should be wary of the pre-sweetened spray stuff as sugar isn't good for a dry mouth and it usually has a lot of additives too. If I fancy whipped cream, I whip it myself then mix it half-and-half with unsweetened full-fat yoghourt. Yum!

      Of course, if you find eating dairy makes your symptoms worse, then you should restrict yourself a bit. Personally, I don't find it makes any difference unless I eat it late in the evening, when it can thicken up my nasal secretions and cause sleep apnoea. The only thing you really need to look out for is sugar (including fruit sugar) especially in the form of fizzy drinks and smoothies. But that's not to say you should start beating yourself up if you drink the occasional glass of Coke. Can't stand the stuff myself, I'd much rather drink wine !cheesygrin

      Be a bit kind to yourself. Allow yourself a few food treats without feeling guilty about it. And give yourself time to recover from your parents' deaths. These things can take a long time. My mother died nine years ago and I can still get a bit weepy now when thinking about her last weeks.

    • pat3760
      pat3760 Sweetness

      Posted

      does anyone suffer from bad breath due to dry mouth!!
  • jefferson89822
    jefferson89822 hayley87179

    Posted

    Hi Haykey, i am Jefferson (in Cambridge). A grest post! It took 4 years to home in on my also having Primary Sjogrens Syndrome. My GP/hospital/consultants had to rule out Glandular Fever, Tuberculosis, Toxoplasmosis.... my platelet and iron levels were borderline low, crash fatigue...etc. Concerning dietary requirements, i highly recommend going GLUTEN_FREE. Whe it domes to 'dry mouth' i alwayd gargle with warm salty water and floss, because the disease causess dental problems as you have experienced. For 'dry eye' this can be awful. I use CELLUVISC eye drops 3 times/day. The joint pain can be bad too. I use a topical IBUPROFEN gel 3 times/day on all my joints. It does help a lot but isn't the total answer. Stress will affect any disease but it has a big impact on 'Sjogrens' increases the fatigue. Try reflexology (hand or foot). The worst thing about this disease is the chronic fatigue. It dictates your life, ruins your concentration ass you say. There is no cure for this currently. I spent a year on a clinical trial, but to no avail. Regarding concentrstion, i read a lot now and try to remeber 3 facts each day. This disease can really mess around with the mind. Lots of love from me and keep you chin up!X
    • lily65668
      lily65668 jefferson89822

      Posted

      Hi Jefferson, Glad to hear you're keeping on top of your SS, but I'd say go a bit easy on the ibuprofen gel. You absorb almost as much through your skin as if you'd taken the stuff by mouth. The gel has even been known to cause stomach ulcers in some people! I'm also assuming you have read up on some of the latest thinking on the lesser-known side-effects of all the NSAIDs?
    • jefferson89822
      jefferson89822 lily65668

      Posted

      Hi there...hello! I agree with you. I don't plan on continuing to use the gel. It is designed to see me through until the end of this month when i'll be taking a new set of tablets. I had a steroid injection in my backside to tide me through. I do get a lot of stomach pains. You are very knowledgable!x
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