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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 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 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 Thanks for reading
2 likes, 20 replies
ally82777 topsy-turvy
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topsy-turvy ally82777
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ally82777 topsy-turvy
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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 ally82777
Posted
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 frustrated61
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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 ally82777
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Frustrated
babycham ally82777
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frustrated61 topsy-turvy
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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 frustrated61
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ally82777 frustrated61
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frustrated61 ally82777
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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
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Frustrated
cazeraz topsy-turvy
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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
topsy-turvy cazeraz
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frustrated61 topsy-turvy
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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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