Hi there everyone, I'm Fran (the S bit is my surname).
I was diagnosed with Discoid Lupus back in 1998 when a little was known about it but not as much as now a days. SLE was not well researched then either. I became a contact for DLE on the Lupus News Letter as there was no other contacts back then at all whatsoever, quite a few for SLE but not Discoid. I felt very alone as I was told that it just affected the skin & it was only with SLE that you got aching joints, headaches etc. That made me feel like a fake & that me aches & pains & tiredness were 'in my head'. Once I had my number publisised on the newsletter I had lots of calls from other sufferes with Discoid only & we all had the same problem - all the symptoms but no doctor would agree they were linked to our Lupus.
Anyway, after a few years it cleared up & went away. I had flare ups every so often but was on plaquenil to control it.
Throughout the past 4-5 years I've felt ill off & on, with cold/flu like symptoms, mouth/nose ulcers, 4 day headaches/migraines, fatigue so that all I can do it go to work & come home & sleep 14 hours, tummy problems (like IBS symptoms of when you gotta go you gotta go!), flare ups of the discoid rash, depression, aching & stiff joints/seizing up sometimes, various things that show my body is 'low' like ecsma (?spelling!), infections, flu (as I've said) etc etc...I'm sure there is more! Oh gynaolgical probs but nothing found as well.
With hope, as the knowledge of this disease has increase as has awareness, I've been to the Dr a few times & the last time he was sure it had gone into SLE but did a range of blood tests & nothing showed up, not even a raise inflamatory marker or if it was up it was only up slightly.
At the end of my teather as these bouts of tiredness/aching/various body failures are coming more often & are more severe. I'm so tired at the mo my memory is shot to pieces. My work life, relationship with partner, relationships with friends/family, social life etc are all suffering to.
I've seen the list of 11 symptoms of which if you have 4 then you can be diagnosed but my doctor says you have to show up positive on the blood tests.
Banging my head against a brick wall & feel like a fake & that I'm inagining it now & making a fuss.
I didn't mean to say all of this here - just meant to say hi, but its out now! Apologies if its in the wrong place.
Help please, I really would appreciate it.
Fran
x
I was diagnosed with Discoid Lupus back in 1998 when a little was known about it but not as much as now a days. SLE was not well researched then either. I became a contact for DLE on the Lupus News Letter as there was no other contacts back then at all whatsoever, quite a few for SLE but not Discoid. I felt very alone as I was told that it just affected the skin & it was only with SLE that you got aching joints, headaches etc. That made me feel like a fake & that me aches & pains & tiredness were 'in my head'. Once I had my number publisised on the newsletter I had lots of calls from other sufferes with Discoid only & we all had the same problem - all the symptoms but no doctor would agree they were linked to our Lupus.
Anyway, after a few years it cleared up & went away. I had flare ups every so often but was on plaquenil to control it.
Throughout the past 4-5 years I've felt ill off & on, with cold/flu like symptoms, mouth/nose ulcers, 4 day headaches/migraines, fatigue so that all I can do it go to work & come home & sleep 14 hours, tummy problems (like IBS symptoms of when you gotta go you gotta go!), flare ups of the discoid rash, depression, aching & stiff joints/seizing up sometimes, various things that show my body is 'low' like ecsma (?spelling!), infections, flu (as I've said) etc etc...I'm sure there is more! Oh gynaolgical probs but nothing found as well.
With hope, as the knowledge of this disease has increase as has awareness, I've been to the Dr a few times & the last time he was sure it had gone into SLE but did a range of blood tests & nothing showed up, not even a raise inflamatory marker or if it was up it was only up slightly.
At the end of my teather as these bouts of tiredness/aching/various body failures are coming more often & are more severe. I'm so tired at the mo my memory is shot to pieces. My work life, relationship with partner, relationships with friends/family, social life etc are all suffering to.
I've seen the list of 11 symptoms of which if you have 4 then you can be diagnosed but my doctor says you have to show up positive on the blood tests.
Banging my head against a brick wall & feel like a fake & that I'm inagining it now & making a fuss.
I didn't mean to say all of this here - just meant to say hi, but its out now! Apologies if its in the wrong place.
Help please, I really would appreciate it.
Fran
x