I am now 65 and have had polio since a baby. I had 1st PE at 24 after birth of my son. I had 5 miscarriages and 2 more PEs followed by 13 DVTs . Was put on Warfarin for life - before 3rd PE and many of the DVTs. Had total Hysterectomy with ovaries removed at 28. Have had constant fatigue and most of the symptoms that others have related to.
My GP diagnosed osteo-arthritis at 33 and advised living in a warmer climate, which I did for 10 years. Returned to UK in 2000 and quickly became very unwell - could hardly drag myself around and spent days at a time in bed. Was staying with my daughter so she took me to see her GP - one of the best I ever came across - she asked me to write down a full medical history for her and after reading it all took numerous blood tests. She diagnosed Antiphosphilipid and Lupus coagulant and CFS. My BP was 201/100 at that time and she referred me to Lane Fox Unit at St T. There they also diagnosed Obstructive Sleep Apneoa and a heart murmur. This all happened during 2001/2. Later diagnosed as Type 2 diabetic. Following a balloon insertion to lose weight in Feb 2012 had kidney failure and diagnosed with fatty liver. I still attend Lane Fox every 6mths and the Sleep Centre every 3mths but at no time since my diagnoses have I been referred to anybody to help me cope with all these issues. I was last year diagnosed with Fibromyalgia (only because nobody knew what was really causing all my problems). I have my INR checked every couple of weeks but only by a finger prick - haven't had a venal since in hospital last Feb. They also said I was Vit D deficiant and put me on ADCAl 2 daily and a one a month tab.
I am lucky that I have a wonderful friend who lives in and cares for me but some days I just want it to be all over, but then I think of my children and don't want to leave them. I keep myself occupied when I feel up to it by designing and knitting baby and doll outfits but the symptoms don't go away and I struggle daily.I take huge amounts of pain meds including 600mg Gabapentin 3 times daily and Fentanyl patches, tramadol and others, as well as many other meds including the Warfarin (40 years now).
What I can't understand is why am I not referred to somebody who understands how these illnesses work together and how can I lead a better life. When I asked the GP for a referral to somebody who could tell me exactly what situation I was in now I was told they have been told not to refer people!! For all I know I could be taking totally wrong meds - maybe some of my conditions don't need meds now whilst others could be getting wrong ones. Can anybody help me overcome this feeling of helplessness. Sorry to pour all this out but I really can't cope with it any longer.