I was first told I had lupus about 14 years ago went through all the initial process of medication and tests. At that time I saw a leading lupus professor who told me that the flares could be huge, long and amount into hospitalisation but also small, totally out of the blue and may resolve after a rest.
I have followed that thought until recently when I saw my GP during my first ever bout of anxiety. I explained to him it's hard to keep the anxiousness at bay when I still need to rest for lupus - his reply ' you are not in a lupus flare because your bloods are good'.
This has really thrown me off balance - which is true??
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BetsieBoo
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u're bloods can show as normal when in flare. I have just had a very severe 2 year flare & even my ANA was neg, despite my rheumy & neuro agreeing I was in flare
I agree with Sher and my Rheumatologist also recently agreed when I returned a blood test with a normal ESR rate but felt and looked like death on legs. Sorry to criticise GPs but IME very few have any expertise in Lupus, nor can most apparently find time or have the inclination to properly research the disease (as I firmly believe they ought). Much easier for them to merely say "well, what does your Consultant think?" and pass the buck. Severe anxiety, along with phobias, depression and more serious mental health issues, are well-known, recognised symptoms of inflammation of the brain due to SLE. This does need to and can be treated Betsie - you shouldn't be left to suffer needlessly. I'd insist on seeing your Rheumatologist on an emergency appointment as any mental health issue is by its very nature of the utmost importance! Good luck in getting it sorted hun and let us know how it goes. oxo
Thank you so much for replying. I'm actually in tears with relief as I've felt, since October, that I'm going mad.
My GP sent my to see a psychiatrist who specifically requested bloods to eliminate lupus but my GP just brushed it off saying "your not fitting - it's not lupus".
I'm going to call my lupus docs tomorrow and will let you know how things go.
Thank you soo sooo much I really appreciate your response.
Hi BetsieBoo, I am sorry you are suffering so. I can confirm that what you are experiencing is related to Lupus. I had severe anxiety coupled with agoraphobia with my first attack of lupus. I thought I was having a breakdown and was sooo scared. I could not leave the house unless someone was with me. My gp at the time refused to give me a blood test and sent me to a psychologist, who in turn sent me to the immunology dpt to get tested for lupus and the test came back positive. Once my lupus calmed down, the anxiety went. I still get anxiety when my flares are bad, but I can cope with it much better now I know the cause of it. I have also been told at times by my doctor that I cannot be in a flare because my bloods dont indicate this. I know that many lupus sufferers experience the same thing. My conclusion is the bloods dont always reflect what is going on with a lupus patient. I wish doctors would listen more to patients, they would learn a great deal more about lupus if they did. I get the impression sometimes that doctors value their own opinions far above the patients expereince and this prevents them from listening.
I was extremely lucky when I was first diagnosed as my rheumy was an expert on SLE as his wife had it so he very big interest in the field. As he told me, the best thing u can possible do is learn 2 listen 2 u're body. A rheumy is NOT an expert in lupus & even a lupus specialist cannot possibly say whether what u're experiencing is right or wrong as sure, they may have STUDIED lupus, but they do not HAVE it. Lupus is not a 'Text Book' condition & the bloods r the biggest joke of all half the time. Until medical experts start LISTENING 2 their patients, they r never going 2 learn a thing, no matter how many degrees they have or books they read :0/
new to this don't know where to start,been having problems for years,had full hystorectomy (endrometrosis) almost 20 years ago since then been hospitalised a few times with bowel (disease )in 1 form or another,bad 1 when living in spain no known cause, been back in uk almost 2 years been hospitalised for 8 days no real reason,got so many symptons and they keep changing can't keep up with myself so can understand why people (doctors think) calling me a hyprecondract only i know i'm not.put symptoms in computer(not good thing to do i know,but was desperate)came up sarcoidosis(rash convinced me,as after spain abdominal was covered in it) after esipode in uk rash appeared again still got it .doc sent for x-ray to rule it out stating i was showing symptoms for lupus. got 1st app to see bone specialist tues.i can deal with anything just need to put a name to it.like so many other people just want to know not going mad
I really did/do think I'm going mad. My memory is shot to pieces I hardly remember what I did yesterday let alone a week ago!!
I have had lupus flare before whare it has affected my kidneys. Another time my lungs, another time my liver. I have also suffered from bouts of depression and at the same time feeling unwell but GP keeps saying its not lupus related?!?!
I honestly feel so relieved that you guys have replied - I now feel there is a glimmer of light at the end of a very very dark tunnel.
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