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Dry Sinus and aching eye sockets

Posted , 5 users are following.

kandypat
kandypat

Hi all, Dry sinuses are part of Sjogrens I believe.  I dont have a cold or anything but I wake up with a pain behind my eyes, my airways are clear.   If I go to the doctors he will say sinusitis and give me antibiotics - which work I must say.  Is there any other way to sort my problem out?

0 likes, 31 replies

31 Replies

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  • judy38388
    judy38388 kandypat

    Posted

    Please please  don't rely on BSSA. I gathered my courage and energy and joined in the spring. I tried to attend a local meeting and it didn't take place. Asked for local contact from BSSA and told they would contact me- nothing. Asked to join' make a friend' scheme which they first of all forgot about it completely  and then when reminded they won't give out any details of individuals and no one contacts you. I am so disappointed and wouldn't want anyone else to go through it, this disease causes enough waiting and depression anyway!
    • mandy95
      mandy95 judy38388

      Posted

      Hi Judy,

      Thanks for the update I was going to join. Do you live in the UK? If so I would be happy to speak with you. I have Sjorgrens myself x

    • judy38388
      judy38388 mandy95

      Posted

      I do love in the UK and would like to speak to you too,  but I can't work out how to do it without posting my email/ phone number on the public forum! I am still working on it or do you know how to do it! I  am not on Facebook.

      but anyway it is nice to hear from you X

    • lily65668
      lily65668 judy38388

      Posted

      Judy - you can send private messages via this site without exposing details of either person. Just click on that little envelope icon under the person's "avatar" (the squiggle to the left of their name).
    • mandy95
      mandy95 lily65668

      Posted

      Hi Lilly,

      I have been taking pilocarpine for the dry eyes dry mouth but it has caused pain in my right armpit and causes it to swell? Any ideas.

    • lily65668
      lily65668 mandy95

      Posted

      Mandy, are we talking about a swollen gland in your armpit? This can indeed be one of the rarer complications of Sjogren's. If you are indeed referring to a swelling in your armpit you need to see your GP or preferably your Sjogren's specialist asap. But don't be fobbed off with a three-month wait for the specialist. In the case of your GP, make sure he understands that you have Sjogren's.

      It's probably nothing serious, but you do need to get this looked at. And I can't think of any reason it would be connected with pilocarpine.

    • mandy95
      mandy95 lily65668

      Posted

      I think it is to do with the medication, it did not hurt or swell until I took that medication. I have had a bad shoulder for a few months now, but the armpit did not swell or hurt until I started this medication.
    • lily65668
      lily65668 mandy95

      Posted

      Well, you might be right. But it could just be coincidence as well. As a former nurse, I stay as far away from the medical "system" as I can. Only had two cervical smears in my life and have never had a mammogram, for example. However, as a Sjogren's sufferer, if I found anything I thought was a swollen gland anywhere in my body, I'd get it checked out immediately.
    • mandy95
      mandy95 lily65668

      Posted

      Hi Lilly,

      i am at the Dr,s tonight.  So hopefully will get some answers. X

    • pam_87693
      pam_87693 judy38388

      Posted

      Hi Hudy I am Pam Newman from the FB group British Sjogren's. We are run by members of the BSSA the UK charity for Sjogren's and SLE sufferers. If a young likes in the UK I suggest they join the BSSA to get the best information on medications etc. If you live in the UK please join British Sjogren's, I have just returned from a 2 hour chat with the BSSA president Dr. E. Price myself! 
    • pam_87693
      pam_87693 lily65668

      Posted

      Hi Lilly are you a BSSA member? We have a FB group for BSSA members, if you would like to join us it would be great to have another nurse! I have just returned from a 2 hour chat with my consultant who is the BSSA President Dr. E. Price! You are most welcome to join our Facebook group British Sjogren's. 
    • pam_87693
      pam_87693 judy38388

      Posted

      Hi Judy I run a Facebook group called British Sjogren's for BSSA members! Please join us, we are a friendly group! I have just returned from a very long chat with Dr. E. Price the BSSA president! She realises all the problems they are having. I said you do need to do FB again, she said she will put it to the medical committee! Hopefully they will ask the members at the conference in London, where I, my Husband and another BSSA member are attending. We all know the problems that Sjogren's gives us, and the importance of help and information!!!
    • lily65668
      lily65668 pam_87693

      Posted

      Thanks for the invite, Pam, but I've never felt the need to be on Facebook and I don't think I'm eligible to join the BSSA as I'm not a UK resident. To tell the truth, I'm not even sure if I'm British any more as I haven't bothered to renew my UK passport in years. Memo to self: must look into that one! For the record, in my adoptive country doctors and dentists are no more alert to the possibility of SS than they are in the UK. It still took me 10 years to get a diagnosis.
    • pam_87693
      pam_87693 judy38388

      Posted

      Judy I am Pam, a BSSA member! I run a FB group for BSSA members. We are NOT medically trained if we were we wouldn't be able to run FB. We do however have a weath of knowledge about Sjogren's and its attendant problems. I do understand your frustration, and apologise on behalf of the BSSA. Sadly it is run by 2 part time ladies as it is a very small charity, who get very little funding. Please do join British Sjogren's and ask for Pam Newman, John, Newman, Adrienne Hirchfeld, Angela Mullally or Caroline MacDonald. 
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