Ok, so the title to this thread is a little melodramatic - but im really fed up! This is going to be a long one so please feel free to ignore me (although any advice or comments will be gratefully recieved!).
Where do i start? Well, Ive been suffering from joint pains and tiredness for 14 years (am now almost 28) and still dont seem to be getting anywhere. I discharged myself from my first rheumy 9 years ago when he suggested that the pain i was in was caused by me being too flexible as a child (at that point i was only getting the pain on one side of my body) - obv im not a dr but it was so ridiculous at the time i didnt go back! The pain became much worse with time and the tiredness has developed to full blown fatigue. When i fell pregnant i happened to go to my gp about it and for the first time in my life, they really took me seriously (perhaps because i was pregnant). I had bloods taken at the hospital after seeing my rheumy and was called back in early as they had found something in my blood and wanted to repeat the tests. My rheumy didnt say what it was that they had found but said that whatever it was didnt mean that i had the disease it was connected with! She wouldnt give me the name of the disease, just said that it was a autoimmune and that i had a connective tissue disorder. I wasnt happy but she would tell me no more. When i went for the second set of bloods (8 months pregnant) im ashamed to say that i read the blood test form and it said that they were testing me for the lupus anticoagulant. I had never heard of lupus and had no idea what it was. I googled it when i got home (i know, its never a good idea) and i found this site. The symptoms of lupus match what im going through more then anything else ever has - even though i have confirmed with St Thomas' that you can have the lupus anticoagulant and not present with symptoms. I still dont have a diagnosis and my rhuemy wont tell me any more. Im reluctant to change clinics as i would have to tell them that i read the form and that ive pretty much self diagnosed myself.
More recently i have developed a rash on my cheeks that is worse when ive been out in the sun.....it is triangular but not always very defined (it was my hubby that noticed it first) and my rheumy has suggested i see a dermatologist - waiting for the appt now......im just so frustrated....i want to know whats wrong with me and i dont understand why my rheumy is being so cagey. At my last appointment she said that my bloods were good and that she only wanted to see me once more - in six months! It doesnt seem to bother her that my fatigue is worse then ever (hydroxychlorquine - plaquenil really upset my tummy so i had to stop taking it) and she has no suggestions as to how to manage it. Im a stay at home mum and i had such a bad flare yesterday (not much better today) that i could barely lift a finger.....thankfully my husband cooked dinner and dealt with our daughter so i could just rest.....even though he had been at work all day himself.....
Apart from admitting defeat.....does anyone have any suggestions? (I cant afford to go private!)
Thank you all so much in advance.....hope i didnt bore you too much!!
Mem xx
Where do i start? Well, Ive been suffering from joint pains and tiredness for 14 years (am now almost 28) and still dont seem to be getting anywhere. I discharged myself from my first rheumy 9 years ago when he suggested that the pain i was in was caused by me being too flexible as a child (at that point i was only getting the pain on one side of my body) - obv im not a dr but it was so ridiculous at the time i didnt go back! The pain became much worse with time and the tiredness has developed to full blown fatigue. When i fell pregnant i happened to go to my gp about it and for the first time in my life, they really took me seriously (perhaps because i was pregnant). I had bloods taken at the hospital after seeing my rheumy and was called back in early as they had found something in my blood and wanted to repeat the tests. My rheumy didnt say what it was that they had found but said that whatever it was didnt mean that i had the disease it was connected with! She wouldnt give me the name of the disease, just said that it was a autoimmune and that i had a connective tissue disorder. I wasnt happy but she would tell me no more. When i went for the second set of bloods (8 months pregnant) im ashamed to say that i read the blood test form and it said that they were testing me for the lupus anticoagulant. I had never heard of lupus and had no idea what it was. I googled it when i got home (i know, its never a good idea) and i found this site. The symptoms of lupus match what im going through more then anything else ever has - even though i have confirmed with St Thomas' that you can have the lupus anticoagulant and not present with symptoms. I still dont have a diagnosis and my rhuemy wont tell me any more. Im reluctant to change clinics as i would have to tell them that i read the form and that ive pretty much self diagnosed myself.
More recently i have developed a rash on my cheeks that is worse when ive been out in the sun.....it is triangular but not always very defined (it was my hubby that noticed it first) and my rheumy has suggested i see a dermatologist - waiting for the appt now......im just so frustrated....i want to know whats wrong with me and i dont understand why my rheumy is being so cagey. At my last appointment she said that my bloods were good and that she only wanted to see me once more - in six months! It doesnt seem to bother her that my fatigue is worse then ever (hydroxychlorquine - plaquenil really upset my tummy so i had to stop taking it) and she has no suggestions as to how to manage it. Im a stay at home mum and i had such a bad flare yesterday (not much better today) that i could barely lift a finger.....thankfully my husband cooked dinner and dealt with our daughter so i could just rest.....even though he had been at work all day himself.....
Apart from admitting defeat.....does anyone have any suggestions? (I cant afford to go private!)
Thank you all so much in advance.....hope i didnt bore you too much!!
Mem xx
