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Sjorgrens Syndrome

Posted , 7 users are following.

mandy95
mandy95

I have recently been diagnosed with Sjorgrens and was wondering what symptons other people with this condition are experiencing.

Thx,

Mandy

2 likes, 22 replies

22 Replies

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  • maureen42261
    maureen42261 mandy95

    Posted

    Gritty eyes, dry mouth, achey joints, and very tired. Are you the same?
    • mandy95
      mandy95 maureen42261

      Posted

      Hi Maureen,

      I have the same as you plus Muscles in shoulders hurt, had chest problems since last September.  I am on Steroids at the moments.

  • margery03727
    margery03727 mandy95

    Posted

    Hi Mandy

    Well you didn't say whether it was Primary Sjorgrens or been brought about by another Auto Immune Disease ie Lupus, Rheumatoid Arthritis, Crohnes Disease. From my experience ( I have Primary Sjorgrens ) it affects sufferers in different ways. Dry eyes, Dry mouth, Vaginal Dryness, Fatigue, Aching joints and muscles, Gastric problems, tooth decay, Oral Thrush ( due to not producing enough Saliva ). Swallowing Diffuculties, the  list goes on, I would suggest you google it and get as much information as possible. I joined the BSS ( British Sjorgrens Society ) which has been extremely helpful with how to deal with it. GP's are not fully aware of how to manage it - I assume you have a Rheumatologist! I manage mine with chewing sugar free gum, use Biotene replacement saliva, Eye gel for the dryness, take water out with me everywhere and don't over do things otherwise you'll get very tired. Avoid stress as much as possible ( difficult One )as that only increases the symptoms. Do get plenty of fresh air and some excercise each day and eat a healthy diet. Avoid sugar as much as possible, don't drink caffeine related drinks - coffee, tea, cola etc. I always ask for de-caff tea and coffee when out and is readily available everywhere. I always eat foods with moisture, as my problems started when I could not swallow any food at all ( for 3 months ). I hope this has been a little help for you Mandy - it's not life threatening and can be managed, but you have to be prepared to adjust your lifestyle if you want to remain healthy. Good luck

    • mandy95
      mandy95 margery03727

      Posted

      Hi Margery,

      Mine is Primary Sjorgrens.  Do you take any medication? I was perscribed Hydrochlorquinn but it seems to be affecting my eyes when I try to read.  I have all the symptoms that you listed and are not feeling that great at the minute.  Can the fatigue hit you at any time? and seem to be really tired all the time.  Just doing the ironing and I need to sit down.  feeling frustrated at the minute.

       

    • margery03727
      margery03727 mandy95

      Posted

      Hi Mandy

      I do not take any medication other than the biotine and viscotears. Do get your eyes checked with an opthamologist and tell him your on that medication. It is supposed to help with the fatigue but I don't know how long it takes to work. I prefer not to go on medication if I can avoid it - I'm already on thyroxin for hyperthyroidism and HRT patches and then when I get a flare up of Oral Thrush I'm on Fluconazole. I have been taking something called Saccharomyces Boulard11 it is a pro-biotic aimed at keeping thrush away - and seems to be working. I also take Udo's Choice - Digestive enzymes blend which help the breakdown of proteins, fats, carbs and fibre. I had a lot of Gastric problems but seem to have them under control at the minute.

  • maureen42261
    maureen42261 mandy95

    Posted

    Hi Mandy, I strongly recommend you have plugs fitted in your eyes, they make a great difference. Best of luck!
    • mandy95
      mandy95 maureen42261

      Posted

      Hi Maureen,

      I had the plugs in my eyes when I was 29 in America.  They actually had fell out last summer, so I had another set put in this January.  But, I must say they don't seem to be as effective as my original set as I am having to regularly put drops in the eyes.

  • christine26761
    christine26761 mandy95

    Posted

    Hiya Mandy, have had it for 22 years, Marjery pretty much said it all I'm just the same..have fibromyalgia too sometimes I never knew which was causing the pain muscle spasms/cramps...I don't take anything for SS, I just do the eye drops for eyes and the same mouth moisture as Margery, do hope that you find plenty of answers...be blessed..have a lovely day..:-) xx
  • cazeraz
    cazeraz mandy95

    Posted

    Hi Mandy 

    my symptoms have been swelling of my saliva gland, along with dry eyes and a little dry mouth, but the problem that seems to bother me most is my nasal dryness, I now have a nasal spray (nasonex) to help which I must say gets me through the day without having to put my face into very hot water to help me breathe through my nose. That drove me mad,  I honestly hope you have minor symptoms coz I would not wish this dreadful condition on my worst enemy.

    • mandy95
      mandy95 cazeraz

      Posted

      Hi cameras,

      pit seems to be affecting me everywhere at the moment. Has anyone experienced heavy feeling around the chest wall?

       

  • carol48450
    carol48450 mandy95

    Posted

    So sorry to hear you are afflicted with this problem I have had it for many years and it took the Doctors ages before it was diagnosed. I find the main problem is the pain in the glands in my neck although I have spells when it eases off. Very dry eyes and my skin needs a lot of moisturising also I find my nails very brittle.

    At the moment tiredness is my main problem and I just have to try and rest in the afternoon or I just feel exhausted.

    • mandy95
      mandy95 carol48450

      Posted

      Hi Carol,

      I to think that I have had it for years. Since the age of 29' but my symptoms are much worse now.  I am currently taking 400mg of hydrochloquinn but this seems to be affecting my eyes when trying to read.  I have also read that this condition can affect the kidneys and lungs.  I am having a CT scan on Monday as I have recently had blood in my urine.

      regards,

      Mandy x

       

    • carol48450
      carol48450 mandy95

      Posted

      What I find strange is I haven't been offered any meds for it only when the Parotid gland gets really painfully I will be prescribed antibiotics. Perhaps the reason is I have had a double heart bypass and some meds would interact with my other meds.

      People are not aware of the symptoms or have heard of Sicca of Sjogren's and Dr's just dont put 2 &2 together to get the full picture.

      As I presented with very sore eyes at first then the rest of the symptoms

      gradually linked up but I had to queery the possibility of it being Sjogrens

      before I saw the consultant. So yes I fully agree with you we have had it for years.

       

    • mandy95
      mandy95 carol48450

      Posted

      Hi Carol,

      I asked for a blood test because I wanted confirmation that I either had Sjorgrens or Rheumatoid Artheritis, and it came back 80% Sjorgrens.  I have since been put on Hydrochlorquinn which everyone seems to say will help the symptoms.  Two weeks ago I was also told that I had thrush in my mouth and throat, so put on antibiotics for that.  Been feeling really run down since last September so I hope that they soon sort me out.

    • margery03727
      margery03727 mandy95

      Posted

      Hi Mandy

      I have suffered quite a lot from thrush in mouth and throat and was given fluconazole. Do make sure you are using Fluoride toothpaste - I use Biotine - for dry mouth. the fluconazole also makes your mouth dry which doesn't help the situation. I have recently been taking strong doses of pro-biotics - which help keep thrush away and also digestive enzymes. I have recently purchased some coconut oil which is good for everything including yeast infections - of the mouth and anywhere else you might get it. Keep off sugar as much as possible as Yeast thrives on sugar and sugar related products and also alcohol. It's trial and error really - took me months to get my symptoms under control, but now I seem to be managing it. Good luck

    • mandy95
      mandy95 margery03727

      Posted

      Hi Margery,

      Which pro-biotics do you use and where did you purchase the coconut oil from?

      Regards,

      Mandy

    • margery03727
      margery03727 mandy95

      Posted

      Hi MandyThe probiotics are called Saccharomyces Boulard11 formerley known as Candi Clear. In Worcs. I showed them to my GP and was familiar with the product. The Coconut Oil I purchased from a local health food shop, but I'm sure is readily available at Holland & Barratt - could check on the internet. It can also be used as a replacement for cooking instead of sunflower oil - I used it tonight to cook some crumbed chicken and also mushrooms. I used it last night to remove my eye make-up, it didn't burn, sting, itch or irritate my eyes in any way at all - a first since Sjorgrens. As Sjorgrens sufferer's can suffer from dry skin it also makes a great moisteriser after a bath or shower. I put some in my mouth before bed to help keep away any thrush, and also keep it moist. Hope this helps

      Emis Moderator comment: I have removed specific product/company names as we do not allow posting of these in the forums. If users wish to exchange these details please use the Private Message service.

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    • mandy95
      mandy95 margery03727

      Posted

      Hi Margery,

      thanks so much for the information I will give them a call.  Do you just use the coconut oil as a mouth wash?

    • christine26761
      christine26761 carol48450

      Posted

      I haven't either, had it 23 yrs too... just told what eye drops and artificial mouth saliva to buy over the counter??? Have a lovely day carol..be blessed :-) xxx
    • christine26761
      christine26761 margery03727

      Posted

      I make my own pro biotics...much stronger and just too cheap...KEFIR and KOMBUCHA. just google it..too long to write about..I use coconut oil inside and out..it's just amazing...coconut flour, vinegar, sweetener, soy like sauce..every part of the coconut is used from the flower to the trunk...you name it, I use it in everything..everyday..even do teeth pulling with it...we eat PALEO -google that too..it's just an amazingly healthy lifestyle...have a lovely weekend Margery it ready Saturday morning here..OZ..be blessed..:-) xx
    • maureen42261
      maureen42261 margery03727

      Posted

      Hi Margery, thanks for info about coconut oil, I'll try anything for this dry mouth. Just feeling soo tired at moment, I wish they could find some cure for this Sjogrens. Have a good bank holiday.
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