Lupus? - Utterly confused.

Posted , 6 users are following.

I have not felt "well" for many years, probably since I was about 22, I am now 34. Whenever I go to my GP it has always been diagnosed as "depression and anxiety" as my moods do fluctuate, I am also very tired all the time. Not just a "bit" tired but like I could sleep on a pin. The tiredness comes and goes.

In the past 2 years I have also developed reoccuring shingles, my skin which was always flawless is "sh*t" (my Mothers words ..) with dry red sore blotches especially on my face. I also have coldsores all the time, my hands swell up to the point where I can't wear my wedding ring, I carry a lot of water and find it hard to lose weight, my joints ache, sometimes my knees and legs ache so badly I can't sleep. I also suffer with a sensitive stomach and have been given an epi pen for the excrutiating migraines. In a nut shell I am 35 and feel like I am 100 .. in the past 2 weeks my hair has started breaking and my eyebrows are coming out in clumps.

I have had to leave my teaching job because I just could not cope with the tiredness and constant headaches / exhaustion.

When I go to my GP they presume it is all depression related and I feel like I am being treated like a hypocondriac , all they want to do is pump me full of antidepresants - I feel they have no effect.

I have accupunture for the headaches and the pains in my legs and it was actually her (a registered Doctor in China) who pointed out she thought I had Lupus. I had never even heard of it to be honest and am so worried about going to my GP and asking - what is the proceedure? I presume there will be blood tests. I just don't want to waste their time and wondered if anyone who has experienced the frustration of always feeling rotten and no one believing you had any advice?

Thanks in advance.

Lucy

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5 Replies

  • Posted

    Hi Lucy. Sorry to hear that you are having a rough time of it. I think almost all lupus sufferers would agree, it takes some time before being diagnosed. This disease mimics so many others and is often diagnosed by specialists just on there expertise alone, despite blood test not showing it. You need to stand firm with your gp and demand a referral to a Rheumatologist. DON'T BE FOBBED OFF. As my pain consultant once told me, it is my health no one else's, and as such I need to take responsibility for it.....so true. It definitely sounds like a classic case of autoimmune disease, such as lupus. All the things you mention, I have and do suffer with. I was diagnosed with a autoimmune disease 13 yrs ago and was only diagnosed with Lupus sle two and half years ago. I wish you luck. Remember....stand firm!
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  • Posted

    Hi Lucy, 

    when I was diagnosed at 33, I thought I'd arthritis ! I asked for blood tests and it showed lupus! Don't be afraid, many lupus patience lead a life and learn to manage it. Blood tests show it up. Lupus can effect any part of the body but you need it confirmed to be treated. I'm now 50 and worked until 2 yrs ago, although I really did push myself! Last 5 years was very tough! Stress does not help, or worry!! You need to find out if it is lupus and then you will be treated, and be able to manage pain etc better. As I've had it for years, my advice is slow down, de stress and rest often. My body copes much better when I do this. I try to walk every day. Hope you get sorted soon.

    j x

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  • Posted

    Hi Lucy

    I think you are in excellent company on this site. I was "unwell" for approx. 7 years and only diagnosed 9 months ago. I have mixed connective tissue disease,( 4 autoimmune conditions) one of which is Lupus. Over the years of not being well and being unable to get somebody to believe me, including my GP, it has been a long hard struggle!! GP's know a little about lots of illnesses but very little indepth. My GP has only become very understanding since being diagnosed! I am constantly asked if I am depressed...but any depression experienced is borne out of the frustration and constant feeling of being ill!! You need to list your symptoms, no matter how small....it is important that they are able to build a picture. There is a system of blood tests that they follow, but depending on how you feel when these tests are taken depends on the resulst! This is why it is important that you give them the whole picture. Don't ever think it is a waste of anybody's time...quality of life is very important!! My only advice, because we are all different, is to listen to your body, rest when you can and don't push yourself too hard. Finding a balance is difficult and takes time.. but it is worth it in the long run. Don't lose hope...I am 59yrs, work full time, run a house and have a wonderful grandson...but I know my limitations...today is not a good day for me....but I know in a few days I will feel better!!!!

    Persevere with your GP and ask him to refer you to a Rheumatologist!!!!!

    Good Luck.

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  • Posted

    Dear Lucy,

    I am so sorry to hear your struggles with your GP. I would go in and demand a blood test "very cheap" on the NHS and depending on the results a referral to a Rheumatologist. In all fairness my GP and consultants have always been wonderful.

    Don’t let them make you feel bad you are suffering enough as it is!

    Be brave & I hope you get the right diagnosis and medical treatment sooner rather than later!

    Lots of Love xxx

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  • Posted

    Hi lucy!

    So sorry to hear you are feeling like this!

    My case sounds very similar to yours. Crap skin, extreme tiredness, anxiety and depression etc, but ive head heart and lung troubles too.

    My eyebrows fall out too! Reassuring to hear it isnt only me!

    I was a teacher too, but it was just too much stress and kept triggering flare ups!

    Im newly diagnosed with SLE, its taken ages to be diagnosed as I dont have some of the symptoms e.g. face rash etc.

    But it does sound like you have some of the symptoms! I really hope you can find a diagnosis (i know its hard finding out you have a condition but it helps to know what you have in order to treat it!) as your symptoms definitley sound like they would benefit from trying medications.

    I would say- if you are poorly- get to hospital! It took me three hospital admissions to find the right consultant who beleived me and to see me at my worst to be able to give a diagnosis! I wouldnt rely on a gp for a diagnosis as ive found not many know much about lupus... its a tricky disease to spot.

    It as only the fact i had a rheumatologist come on a ward round during the last hospital admission that helped me- he listened to my symptoms and becuase he knows about lupus that i was diagnosed!!

    Keep trying! and keep a diary of flare ups of feeling crappy- write down how what u are suffering with, when etc and anything that could have caused the symptoms.

    get well!!

    Lois xxxx

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