Hi, I have had Sjorgens symptoms for many years, why is it taking so very very long for me to be sent to a RA?

Hi,

I've had so many ill problems over the years, ie terrible back pain that comes and goes, chronic fatigue and depression. Anyway nearly 3 years ago my eyes started to get dry, then dryer, then my mouth so dry again. Then my upper arms and chest began to itch and burn. It got so bad I had to put ice cubes on them so I could go back to sleep as the pain was like i was being eaten alive by red ants, it was awful and no exaggerating. After numerous annoying trips to the GP i finally changed surgeries. Now they have changed some of my medications for my depression and the itching has calmed down a lot but not the eyes, mouth, chronic fatigue and now another addition, I am constantly running to the loo all night long. I try not to drink but my mouth is sooooo dry it's impossible. My new doctor has given me ointment for night time for my eyes and gel for the day times. At nights each time I wake to run to the loo my eyes hurt me so much that I run back into bed and smother them with ointment as the pain is so bad and after a little while I go back to sleep but then wake again run to the loo, run back to bed and use the ointment again and again all through the night. I have now been referred to see an Opthamologist because of the pain. I have seen a urologist but he seems to think that if I could get the dryness sorted out it'll probably sort out the waking at night as I won't be running back and forth from the bathroom. I think I'm a little frustrated as I think it's clear I have Sjorgens Syndrome and I don't understand why it's taking so long to be referred to a Reumatologist as I'd like to get help to make myself feel more comfortable. Sorry if I sound like I'm moaning but I'm frustrated more than grumpy. Does anyone else feel the same as myself that I may have hit the nail on the head with Sjorgens even though I know I'm not a Doctor. I did mention this to my Gp and she said that she would just mention Sjorgens in her referral letter. Thanks for reading :)

Giny

8 Replies

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  • Giny,

    My sjogrens was diagnosed at the Eastman dental hospital which I still attend - and I was referred to Moorfields eye hospital for my dry eyes - this is secondary to Scleroderma.

    I use numerous saliva stimulating potions and gels but find that none really work that well - I do drink a lot of water throughout the day and really find this best of all. I drink at least 1.5 to 2 litres a day.

    For my eyes I was given HYlo-tear for the day and have also had plugs put into the tearducts to help stop the tears draining from the eyes. I also use Lacri-lube at night - its a bit greasy but keeps the eyes moisturised during the night.

  • I am similar to Anteater. I am seen at Leeds dental hospital for the dry mouth part. I was given pilocarpine to stimulate what little I have left of the salivary glands, also have an annual scan of them. Have also been given gels, sprays. mouthwashes etc. But I have been by an opthalmologist for the eyes, have had plugs into the tearducts and use various drops and ointments. I think you need to see a range of different specialsts. I dont think it is possible "to sort the dryness out", only to help you to be more comfortable. I feel that you are being fobbed off by the urologist!

  • Thank you Anteater and Yorky and yes I agree with you about the urologist and will inform my GP. I use lacri-lube at night and sometimes in the day when my eyes are really really bad. I also use the visco tears gel during the day but have noticed the redness on my under eye (inside both eyes) is still a little red most days and my eyes have been dark red blood shot appearance. I am dreading winter as this is when my back plays up with a vengeance and life just seems to hard at times as the pain killers I am given don't seem to do much at all. I use co-codamol with Ibuprofren. I used to use co-codamol and Tramadol but found the Ibuprofren works better but still doesn't work to well. I will be seeing my dentist again shortly so I will ask her if a referral is needed as she is very keen to know if Sjorgens has been diagnosed yet, actually she sounded so frustrated the last time I saw her she may just referr me herself, can she do that? Anyway thanks for your thoughts and info and I will see my GP soon about my urologist.

  • Hello, I can sympathise with anyone who has Sjogrens Syndrome and Chroninc Back or joint pains.I also have Raynuds and Peirphiral Neuropathy. and have had joint replacement spinal and neck surgery. My GP has sent away special Blood Tests to see if she can diagnose Sjogrens with the blood tests. I believe that 60 per cent of people with Sjogrens can be diagnosed by a blood test. However the blood test does not help with diagnoses for the other 40per cent.

    There are other tests that help to diagnose Sjogrens such as testing for dry eyes and the salivary glands.

    I also find it particularly annoying at night waking to have a drink or put in eye drops and visit the toilet.

    I also choke regularly at mealtimmes as I cannot masticate my food properly because of the lack of saliva. I keep a glass of water by me at all times.

    I use Biotene Mouth Wash and Biotene Gel and this does seem to help with the plaque that forms on your teeth when you do not produce enough Saliva. The are available on prescription or online at Amazon.co.uk.

    I was prescribed a spray for my mouth but this did not help.

    I think you should be firm with your GP and really let her know how upset you feel. You can request to see an RA Specialist.

    Let us know how you get along.

    Best Wishes

    Jessie122

  • Hi Jessie

    I have honestly only just seen this here, so please accept my sincere apologies. Gosh yes I always have to have water by my bed and even though I sip on it I still run to the loo soooo many times during the night and have to put in my lacri-lube every time. Today I saw my first specialist and as predicted I had no moisture in my right and 2.5mm in my left (or possibly the other way round lol) nevertheless it mounts to severe dryness as I just researched on the computer :). He's putting tear duct plugs in soon :) :) :). And thank you Jessie for informing me that I can request a RA appointment as this will be my next step. I have posted another question regarding todays hospital visit. Thank you so much for your reply and once again 'sorry' for the delay :( :) :)

    Giny

  • Have you been tested for Primary Biliary Cirrhosis ? ( i also have this) Its symptoms are extreme itching and very dry eyes/mouth. You would need to be tested for anti mitochondrial antibody X

  • Hi Inkedup, I can see why you have suggested they test me for that as I do have most all of those symptoms. Can I actually ask to be tested for it as they can make you feel like you shouldn't ask to much as they're the Doctors and not you, I don't want to cause them anymore bother than necessary as they get really mean and take it out on you in different ways ie, make you wait longer for your appt etc etc. But it's not their life is it so I will ask anyway. Will let you know of any developments and thanks again. Hope you'r e feeling ok.

    Giny

  • Hi inkedup

    I did it to you to so I hope you to will please accept my sincere apologise. I will research what you have suggested as I am not familiar with it at all, but thank you so very much for bringing it to my attention. I will keep you updated. Coronation Street is half way through so I will snoop around on here later tonight or tomorrow as I am shattered :)

    Big thanks and will keep you posted.

    Giny :)

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