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Sjögren's gets me down

Posted , 8 users are following.

topsy-turvy
topsy-turvy

Hello.  I'm 48, diagnosed with Secondary SS last month with RA.  My mum, 83 has been suffering with the dry symptoms for 30+ years, diagnosed properly just over 10 years ago.  Seems like I am noticing more and more symptoms recently, increasing and I am not happy about it coz it hurts sad  To help I am a pescetarianism (very occassionally I eat cod, tuna, mackerel or trout) 2 years ago, I eat mainly raw foods or subtley cooked foods (vegetables), Rice, Pulses, Quorn products are good too.  Water, sometimes with a little PLJ (lemon) or apple and elderflower juice.  I now love Rye and sunflower seed bread too. I avoid gluten as best I can. More products are wheat / gluten FREE here in Cardiff but so much more expensive sad  I quit smoking 4 years ago, Massively cut out sugar (frustose), No to cow products, Yes to Soy, I still have coffee with vanilla soy or tea with plain soy, I still have a Merlot wine or twos, still like a kit kat or twos, love New York style cheesecake from Waitrose ooopsy !! but can't resist it!  I work part time, still walk my collie dog twice a day albeit much slower and can no longer climb steep, slippery hills or run alongside him without moaning out load "I'm dying!".  I slipped yesterday at home and nearly did the splits ! OUCH!! My right knee made 2 bone cracking sounds but fortunately not broke.  Sore and limping like an old, old lady today and more moaning "I'm Falling Apart!".  Taken me over 2 weeks to get better from bronchitis / laryngitis (viral) which I often had as a child around stress (exam times), whether this is significant I am not sure.  My SS symptoms are escalating: In no particular order: Rheumatoid Arthritis, Dry Eyes, Tiredness, Sweating, Hoarse, White Tongue, Acid Reflux, Brain Fog, Heart Palpitations, Swelling, painful feet, Dry hands and feet, Swollen lymph nodes in throat and left armpit, Peripheral Neuropathy (numb) in right knee, Irritable Bowel Syndrome, Teeth cavities, Mouth ulcers, Swollen eyes AND more recently DEPRESSION.  And so to bed to rest some more .. this forum is a good place to de-stress smile Thanks for reading razz

2 likes, 20 replies

20 Replies

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  • ally82777
    ally82777 topsy-turvy

    Posted

    Topsy turvy,, I worry about my children developing symptoms. Is there any sort of genetic testing that anyone knows about ? I would hate for them to ever go through this xx
    • topsy-turvy
      topsy-turvy ally82777

      Posted

      I been reading lots lately (not good for dry eyes right!)  and there seems to be contrary opinions.  The belief I came to is it's a mish mash of of genetics, a common virus trigger (my regular is bronchitis which leads onto laryngitis and pharyngitis).  Other factors include lifestyle and diet, age related - loss of the oestrogen hormone.  My mum said she had many x-rays due to a thyroid complaint and had one or two x-rays when she was pregnant with me, so I am thinking this too may have made me the way I am.  The inheritance pattern of this predisposition is unknown.  You can search for a genetics professional in your area if you want to go down that route but I prefer to encourage my 12 year old daughter to live a similar healthy lifestyle to me .. prevention early.  There are regional groups you can join for a £25 membership fee (!) here British Sjögren's Syndrome Association based in Birmingham http://www.bssa.uk.net/regional-groups.asp.  Or like them for free on Facebook.  There are other support groups in Facebook if you use it.  Helps me to read other people's stories.  I just typed into Google Sjogren's genetic testing Wales and came up with a forum with 3 haemotologists so there is help out there.  Do your research I say, but also keep the stress at bay (she says typing from her comfy, warm bed at 6pm cheesygrin
    • ally82777
      ally82777 topsy-turvy

      Posted

      Hi ,,, 

      I am really struggling to accept this disease at the moment. My consultant told me I have to listen to my body so this is currently day four of bed !!! That's all I've done is clean up n go to bed. 

      I feel like I've just lost me. The girl who was up at four to do yoga ,, then cleaned her house from top to bottom got kids out to school got ready looked quite ok !!! Went to work , great job responsibilities,, flirted with everyone ,, lunch with colleagues ,, came home ran round looked after parents kids dogs house exercise n then maybe bed !!!! I'm just a shell of my former self ,, my hair cut short as I just couldn't cope with the pain of blow drying etc !!! The pain the body falling to bits I guess I use my humour to get through. But I'm really struggling at the moment. I'm surrounded by people I love n who love me back ,, it's so hard as they worry constantly anyway. 

      Did anyone else go through this ? Is it normal is it acceptance?? 😣😣😪😪😪😪

    • frustrated61
      frustrated61 ally82777

      Posted

      Hi Ally ~

      I hope this day finds you well, or better in anycase.  I hear you about your life "before S" which parallels mine or did.  I think this is why it is so hard for people like us.  Being so active prior to S, made it that much harder to deal with.  I'm hearing you describe your day as much as it was like mine.  I always smiled.  Always, laughed. Always, looked decent.  Always cared.  Now, I rarely smile, laugh, present well, but I still care.  I care about everything important to me and that's family and friends and e-friends too.

      To be able to do, oh what I'd love to do more than a "firefly"!  now I'm lucky enough to be able to sit at the table for longer than 10 mins w/o pain or tearing up.

      But, there's tomorrow.  I've always told my girls while they trudged their way through high school, where kids can be kind or cruel.  I've always told them not to judge the moment by today, sleep on it and tomorrow, I promised would be different...and it always was.  So, if I'm good enough to give this information, I have to be good enough to accept it, right?

      Because, as we both know, one thing is guaranteed, tomorrow WILL be different!

      Take care my friend, warm hugs

      Frustrated

    • ally82777
      ally82777 frustrated61

      Posted

      I can only say thank you with all of my heart ❤️❤️❤️

      Oh ,, and for a lady who has no tears I really can cry !! Warm hugs and hoping today is a good day for all us S suffers xx

    • frustrated61
      frustrated61 ally82777

      Posted

      I also have plugs in the upper and lower tear ducts and I can shed tears.  I'm not sure why someone who has plugs cannot shed any tears?

      Frustrated

    • babycham
      babycham ally82777

      Posted

      Hiya I understand totally where your coming from, like you I used to be always on the go! Running around cleaning cooking always there to help. looked after my Mother/ Father. Now the tables have turned, my family tell me I'm crying as I haven't taken tablets. I am constantly being told to accept things have changed, but I wish I could just carry on as before. I am trying to, as I know I will get my family annoyed &also I don't want them unhappy. Take care all
  • frustrated61
    frustrated61 topsy-turvy

    Posted

    Hi Topsy

    I read your post and many of your symptoms, I have had for many years, although not dx'd until 2012 with sjogrens.  I also have sarcoidosis.  I'm wondering if you have been checked to see if some of you symptoms are from sarcoidosis.  Although it would be good to know as that effects different parts of the body than sjogrens, but both are treated the same way, steroids.  This time around with me, I told the doctor I would not take steroids ever again.  I had so many secondary problems from the steroids that I wasn't sure what was worse.  He assured me that methotrexate and plaquenil will do the  job and if not, I just may have to go on steroids for a short time. 

    The depression from these diseases is overwhelming and very lonely.  My partner (husband) is pretty healthy although he does have hemochrometosis but other than that, he's fine and he's even fine with that.  He, however, I'm definitely sure is tired of this going to and from doctors (as I am) and this is the depressing, lonely part of this.  I still have to address my teeth because I also have sarcoid of the gums and I've had many issues with my teeth.  I brush all the time but that doesn't help this kind of a situation.  It's not our teeth are "dirty" they are just "broken", breaking down from the diseases. 

    It's a lonely plight any way you look at this.  I guess surrounding  yourself with people who love you unconditionally (which is getting harder and harder as the longer this holds onto our bodies).  People think, you look good, nothing is obviously broken, what's the problem!?! right?  I don't believe it does anyone any good to follow that as a rule because it adds to depression and on and on and on...wishing you luck and hope.

    Frustrated

    Ally, I haven't found that this disease is hereditary, have you found this to be true?  I'd be very interested in that finding! 

    Be well and carry on!

     

    • ally82777
      ally82777 frustrated61

      Posted

      Hi. No. I've not but as a mum of four I am really keen to see if any tests can be done. My son shows some symptoms !!  But typical man refuses to go the doctors which is worrying xx
    • ally82777
      ally82777 frustrated61

      Posted

      I am struggling at the moment. Your last post to topsy Turvey could have been written by myself ❤️❤️
    • frustrated61
      frustrated61 ally82777

      Posted

      I'd check with the doctor. I'm thinking it isn't because it's autoimmune driven.  But who knows?  Just keep an eye on your son and see how he feels in 6 mths, if he's still showing signs, just do that mom thing and beg! lol

      In the US, if one is dx'd and the other family members are tested (for any health issue) and they test positive, that goes on the health records and is shown to be a chronic/previous disease and therefore they could not get insurance from anyone to cover that particular problem.  Did that make sense lol

      I am a mom too and I hear your concerns but I guess you have to trust that maybe he's not feeling quite as bad as he's presenting (?)

      Prayers for your family,

      Frustrated

    • frustrated61
      frustrated61

      Posted

      sorry for the "lol" but I'm definitely going to get off this because I'm far too tired to be here.  Will write tomorrow.

      Frustrated

  • cazeraz
    cazeraz topsy-turvy

    Posted

    Hi topsy-turvy 

    i am am really sorry to hear you are having such a ruff time of it, I do understand  that thing just get on top of 

  • frustrated61
    frustrated61 topsy-turvy

    Posted

    Hi Topsy ~

    How are you today?  I'm hoping you're finding a good place to at least make you a bit happier!

    Frustrated

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