Sjorgens syndrome/ depression

[Ninarina]

Morning, after a crappy few years my beloved Mum passed away and that left me with all sorts of issues. Now I've been diagnosed with Sjorgens. I used to wonder how come I never once saw her cry and it was because she started off with this condition undiagnosed it developed into scleroderma and killed her. I feel so so guilty that I didn't listen to her when she said she was ill and part of me wants to suffer to punish myself but at the same time I have people who need me and I have to stay alive for. I want to know it anyone has this condition and if any natural remedies helped. Thanks for reading

[gingeroots]

Ninarnia I'm so sorry about your mum and that you're feeling so low .

I think you're being unduly harsh on yourself when you say you didn't listen to her ,you clearly did .It wasn't your responsibilty to get medical care and a diagnosis for her ,it was hers and her doctors and the amount of anguish you are expressing now make it obvious that you didn't lack in caring about her and being her daughter .

Without wishing to minimise your feelings ,I think we often do feel guilty and regret when someone close to us dies .In your case it sounds as though this is really troubling you and I wonder if you could ask your GP about counselling ?

Please be kind to yourself and don't think about punishment .Talk to someone ,a friend or relative .



PS I'm not sure that scleroderma is caused by Sjorgens ,it sounds a horrible disease and you must have had a tough time with your mum .

[Ninarina]

Thank you gingeroots yes I'm having counselling and I'm still a wreck!!! I can't stop the feelings of guilt and remorse. Maybe one day I will wake up and feel better but it's hard going at the moment. Thanks for replying x

[Monkeyinshoes]

So sorry about your mum

It often comes so naturally to blame ourselves for things and look for what we could have done differently. You are not to blame and I'm sure she wouldn't want you to suffer.

Gingeroots is right, scleroderma isn't caused by Sjorgens. They are both autoimmune conditions, they can occur together or on their own. My grandma had Sjorgens but not scleroderma, my aunt had scleroderma but not Sjorgens.

I don't know of natural remedies, my grandma had eye drops and doublebase gel prescribed because her eyes and skin would feel dry. She'd drink a lot because her mouth would feel dry. I'm not sure how much more it affected her, she didn't let it show.

[redannie118]

Hello nina I hope I can put your mind to rest a little :) I have Sjorgrens andi scleroderma, they go hand in hand and are even used as a diagnosis for scleroderma. Your mum will have had them both for a long time and not even her or the doctors will have known as scleroderma is much harder to diagnose. ( I will state not everyone who has Sjorgrens will develop scleroderma )as for treatment , it depends how it effecto you. Eye drops and lacrilube eye cream is best for eyes, drink lots of water and suck sugar free sweets for the mouth, take a high dose vitamin d capsule as well, after that you are looking at Meds like anti inflammation or something to dampen the bodies immune reaction. Have you seen a Rheumatologist yet? I think it would really help you to talk things through with one. Also check out health unlocked- it's a online community for people with various health issues and has given me loads of really good advice and support ( it's also the only one my Rheumatologist recommended ). For your mum

[Ninarina]

Thank you Monkey and Red it helps to hear of other people's experiences. I feel like my mum definitely had Sjorgens and then she developed the scleroderma because as you say it was undetected for decades. She suffered a lot and we used to think she was just a hypochondriac. It's like a knife in my heart when I think what she went through and how dismissive we were. I won't ever forgive myself. I've had one appt with rheumatologist who said about managing symptoms but I'm not too bad at the moment. I have had unexplained joint pain in the past and it was seeing my mum go through hell that alerted me to little niggles. I'm 40 and my mum was 69 when she passed so it feels like I've got all that to come. I suppose on the plus side my symptoms will be monitored. Thank you for your replies. Xxx