I currently have autoimmune hypothyroidism, autoimmune urticaria, pcos and my blood tests have regularly come back as being 'within the average range'. However, I find that I'm losing hair by the bucket loads and am struggling to keep positive and don't have the energy to take on daily tasks in life. My fatigue is such that if I was to go to the gym (rare nowadays) or participate in physical activity, I am shattered for a few days afterwards and need to cancel all plans to recuperate. I went to the Dr yesterday and saw her face fall as she realised it was me again. However, she went through my medical history and wants me to be referred to Rheumatology as she thinks I may have lupus which they've struggled to identify. The trigger factor for he going down this path was that I always have cold hands and feet and one Dr years ago said I may have Renauds Syndrome. I've also got a stiff neck and shoulders which causes me migraines and am receiving physio for this- the Dr thought this might fit a patient with Lupus profile.
My question is: have others experienced a nightmare in getting diagnosed? I'd love a family of my own one day but I'm petrified considering my complex medical history and if I do have Lupus, I'm scared of further complications to me or the baby- how have others coped with pregnancy, health complications and beyond? Am I being anxious when there's really not much to worry about? I had a friend who died aged 25 because her Lupus was impacted on her life severely- I think I have that in the back of my mind which is not helping.
I'd appreciate any input from others in how they're living their lives- the challenges and any positives of a lupus diagnosis.