How long have you lived with the illness? Does the condition, with management gHowet easier as you get older?, (women - post menopause) - is this in remission?
I will go first!
I think that my Sjorgren's Syndrome, (and possibly Lupus SLE - but not 100% sure on this auto immune disorder), commenced when I first went onto the contraceptive pill at 16yrs old. The affects were almost immediate! After a yr or so of being on the combined pill - my GP changed this to the mini pill, which seemed to help. ****My I add that at this time I had not been diagnosed with any of the auto immune disorders that I currently have!***
Then after reading a report in the news about a young lady who passed away with blood clots in Merseyside, ( I was 21yrs old at the time), because of the same mini pill that I was currently taking - I stopped taking this medication with my GP's assistance.
Not long after stopping the contraceptive pill my immune disorders started to take affect.
Over a period of 2 to 5 yrs - I got Glandular Fever - which knocked me off my feet for months, then Chicken Pox, Viral Meningitis and believe it or not German Measles twice. Even though I had had the GCB and Rubella at school aged 11yrs. At 25yrs I had to have the above vaccines again.
I then started to suffer with fevers, shakes and high temperatures, muscle aches and pains, severe fatigue, (but was also a full time student and working part time - so put all the stress/tiredness etc down to this). At this time I was also diagnosed with IBS. The only medical treatment that I received was Fibrogel - which made the IBS worse for me and Mebeverine for the IBS.
At 27yrs old I fell pregnant with my first baby - unfortunately, my son, Robert, was still born at 7 and half months. As you can imagine mine and my partners life could never be the same again. Complete and utter devastation does not come into it. I was diagnosed with Protein S Deficiency, (a blood clotting disorder) and Anti Phospholipid Anti Bodies.
Fortunately, with expert medical treatment, (aren't Dr's fantastic!), went onto have my daughter - with twice daily Fragmin Injections and 75mg per day aspirin.
Not long after having my daughter, (she was 10 weeks old), I was admitted into hospital with severe pelvic pain, shakes, high temperature and fevers - I had an internal infection after a c-section. But my blood markers were also off the scale - so much that two Rheum Consultants came to see me as they suspected I also had Lupus!
I was monitored for 2 and half years, (with no treatment or medications), and was finally informed that I had scored 3 out of 4 on the Lupus test, ( I am going back 10 yrs ago now), and did not have Lupus. As I also suffered from severe dry eyes, dry nose and mouth, Re active arthritis, muscular aches and pains, from time to time skin rashes and fatigue - I was diagnosed with Sjorgren's Syndrome at 33yrs.
However, i noticed that over the years my symptoms and flare up's were more frequent, lasting longer, taking longer to get over. I would question my previous Rheum Dr again, HAVE I GOT LUPUS - which he would reply NO!
My I add that I was told to take NSAIDS, regular exercise and that was it?
From Nov 2009 to June 2010 I was so poorly and was undergoing a series of tests at the hospital. My GP thought that I was pre menopausal.
In June 2010 my SS symptoms were so severe, ( and it was also a blessing that I acquired a new Rhemu Consultant), that I was prescribed Planquenil, but had to cease taking this after 4 months as my body couldn't tolerate it.
After picking up either another viral or bacterial infection in Aug 2010 - my health deteriorated so much that I was admitted into hospital in Oct to Dec in ITC. I have been very lucky - I have since been diagnosed with Lupus SLE and now in reciept of medication - AT LAST! Finally being diagnosed at 39yrs! Medications - MMF 500mg 2 x per day, Steroid recently reduced to 10mg per day, Rampiril 2.5mg 2 x per day, (since the attack have slight heart abnormality), 5mg Folic Acid every day and Calcichew Tablet every day.
I have been quite candid, BUT, you DO NOT have to be if you don't want to.
Thanks in advance for any comments made!
Kind regards, Lulabelle