Hi all, I am yet to be diagnosed but feel totally confused and upset with the length of time it is taking and how slow the consultant is in dealing with me.
I had been feeling poorly for about 6 months, exhausted but had difficulty sleeping, flu like symptoms but kept dragging myself to work and trying to carry on with normal life, I am also a single mum to one teenage daughter.
I started with raynauds 5 years ago, then high bp, then severe dry eye and extensive bilateral dedication staining to lower cornea, I have been prescribed Hylo Forte for this, my limbs and feet ache and my joints are so painful especially my left knee that it is sometimes difficult to climb the stairs. My mouth cracks at the sides and is constantly dry I sip water constantly.
In August I went to my gp as I thought maybe my iron was low or Vit D but instead gp made me an urgent appt to see a rheumatologist as ANA was extremely high, anti centremere antibody.
Rheumatologist sent me for tests on all organs, I already suffer from Gerd and take Lanzoprazole I have hiatus hernia which was confirmed by tests, I have ibs and barium meal showed evidence of slight impaired mobility.
I recently went back to see the rheumatologist who said he can’t diagnose yet as not enough symptoms but thinks Sjögrens and Crest overlap.
How can there not be enough symptoms plus positive ANA which is really high !!
I’ve been in sick since September and I feel work don’t believe how poorly I feel.
The crippling fatigue is the worst if I do too much I suffer for days.
Rheumy has taken more blood and wants to do a test on my heart as something cane back borderline and see me in 4 months that doesn’t help with work ! The stress of all this just makes my symptoms worse.
Sorry for the long post I just feel so upset and frustrated. My parents are great and really supportive but I feel others just think I’m faking and really not that bad.
Any advice on your journeys to diagnosis would be greatly appreciated x