Hi, Iv had sjogrens &lupas since I was 26, I'm now 41. Has anyone had problems with their heart and what symptoms were there...I'm scared.

[ronel]

Over the years iv had problems with some of my organs struggling to function. Iv learnt to recognise the symptoms. But now these symptoms are new different and I'm scared. I have a doctors appointment 2mrw. But I would love to hear from all of you.

[MaryF]

As you have Sjogrens, have you had your Thyroid tested, and also have you been tested for Hughes Syndrome/APS? MaryF

[ronel in reply to MaryF]

Hi, MaryF, yes I have. Everytime there's a new symptom it means another prescription. My tests always come back scrambled and back 2 front..lol..i have to laugh, bcos it takes the seriousness away of the sickness.

[Tassa]

I too have lupus and SS. i have been on a natural product called Mannatech sourced from Australia, it helps to rejuvinate the cells in our bodies. Google it up online. I have been on their product for 4 years now and my health has improved so much I do not now suffer from lack of energy and am able to do most things but pacing myself. i take the powder Ambrotose and the tablets Plus together. Since I have been on these along with a vitamin and mineral supplement it has improved my health no end.

We will stilll have problems with our system due to having an autoimmune problem. Our bodies are lacking in vitamins and minerals which help our systems to keep working. Mannataech takes several months to "kick in" but well worth trying.. Hope it helps.

Traveller.

[ronel in reply to Tassa]

Thank you, I will def be looking into it. What would we do without each other

[kerriebn in reply to Tassa]

I live in Australia. Where do you get it from?

[DJEUSA]

I have developed what is called " an innocent heart murmur " and my heart skips a beat every once and awhile. If I lay on my left side I can hear it do it after I exert myself especially. I have no idea if my heart did this years ago and I nor the doc noticed but it was discovered about 3 years ago and has not gone away or gotten worse. I will be 70 in April 2015 and have been dealing with Sjogrens which was mis DXd as Systemic Lupus for 11 years. All the symptoms started in 1994 and I like others have been scared from time to time - especially when some new symptom or problems show up or body gets used to a med that just does not work anymore. It seems just when I am adapted to my previous problems things change. After 21 years I tend to not react as I did earlier in my disease and no one is suggesting it is all " in my head " anymore. My fibromyalgia is the hardest to treat in the long haul - nothing seems to keep it under control for any length go time which becomes tiring and drags me down requiring pacing myself and getting rested more. I hope you get to a Doc and find what new your new symptoms are and find a way to treat them - best wishes - Take Care - Diane ( from the USA ) 😃

[ronel]

Thank so much Diane its reassuring to know that its ok to be scared sometimes.

[Jlog]

I have Sjogren's and have just gone into remission from Graves. I have a variety of tachycardias as well as ectopic beats and a floppy valve that started one day out of the blue. The Drs don't know what causes it. The good news is that through ablation surgeries it has been helped. The fabulous news is that most of the tachycardia isn't dangerous, it just impacts on life (it was happening if I over-ate, bent over, raised my voice etc). It was scary the day it started and until diagnosis but it wasn't dangerous. I hope you find out what it is Ronel.

[Miskymoo]

Im not much help but I'm 27 doctors think I have Sjogrens.

Dry eyes, dry mouth, salivary nodules, and I have also had heart palpitations on and off (a couple of times a week sometimes daily) for years now. Could be related to Sjogrens .. Not sure.