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I thought it was my own private nightmare

Wow its real. Finding this web site and community has been like a bomb going off in my brain. I thought i was in my own private nightmare untill I recently went on line and read other sufferers of SLE talking.

I was not diagnosed for many years and to cut a long story short when the medical proffession told me my symptoms were not real,but due to my being mad- depressed (not suprising) and scitzophrenic ie delusional (i was distraught right enough and did keep saying i felt like i had been poisoned) and that my being tense was causing skin rash,neck and joint pain,constant stomach upset,extreme fatigue,muscle weakness/cramps,diziness, head aches,confusion,'White finger(they said i'd got from vibrations at work but my co-workers were fine)-and that if i stopped being anxious i would feel better i didn't have much option but to go with it. On the bright side it has meant that i have learned a lot about mental health.

Eventually after being given many different psychiatric drugs ,to which i had an absolute cornucopia of side effects and seemed of little help,if any,with the aformentioned (and errupting of more) symptoms,I ended up with a very forward thinking(though very old and sadly now passed away) psychiatrist who asessed me and thought i was 'drug sensitive' and gradualy took me off psychiatric meds. I felt better off the drugs (mentally) and took some self help type courses.The courses had a confidence building effect and i returned to asking more about my physical symptoms.After many years (and changes of address and gps) I was lucky enough that when i asked one gp (i felt abit like a parrot by then repeating things) why i had such bad pain in my hands that i could not write much or brush my teeth properly(having developed gum probs by then) she looked at one finger and asked if i wanted an apptmnt with reuhmatology.

Like many people on this site things have not been easy even after diagnosis and although i recieve some DLA it is for my mental health and not SLE.

Seeing accounts of other peoples symptoms and experiences has been a shock and a great comfort as well. I wish that no-one had to suffer these things but it is a great support to know there are people who truly understand the difficulties and are also working to overcome the problems that come with this illness and get the best they can out of life. Thanks to all x.

9 Replies

Your story is so familiar on this site, of people being either undiagnosed for misdiagnosed for years and years. The medical profession really need to start sitting up and taking note of these illnesses, not just Hughes and SLE but other maybe life crippling illnesses. Just because something has not got a name or is rare does not mean you dont have it.

Good luck to you, now you have your diagnosis.


Thanks Sue,I agree many people suffer from people who dont seem to care about doing thier jobs with care, from dentist to police. I think it must be upsetting not only for those who need thier help but also to those people within the professions who are dedicated,compassionate and careing.

Are those your cats in the picture?They are lovley


Yes, these are my two girls, my lifesavers. x


So sorry that you've had tuff time but well done for coming through it all. We all know what you have to go through having SLE. Welcome to the site and hope you find some good advice and friendly messages xx


Thanks its nice to be here:)


hello and i join with sue & clairebear in saying: welcome, hope the forum helps

also, many many thanks for telling some of the details of your story: helps me a lot! hearing what you've been through over the years makes me feel even less alone (my story has stuff in common with yours - at 57, was diagnosed in UK last year, but then it turned out i was originally diagnosed as an infant and teen, but that info was lost). also, both my family & my husband's family have members with mental health conditions, and all my life i have tended towards depression & eating disorder. so, i very much feel for you: lupus alone is enough of a mental health strain, but many of us have the double whammy you describ + we need/want to support close family members and sometimes friends too. i am so glad you have found help, and now have found this forum. seems to me you are already making a difference, for me anyway.

take care


Hi Barnclown, I am so glad to be some help to someone else. Usually these days i am not much use to others and it feels nice to be told i have been any help.So Thank you x

P.s sorry if you find i have repeated this somewhere as iwrote and put it on already but it disappeared. Not very well versed in this computer stuff yet :)


welcome & God bless


Hi,although i am not part of a set religion(my Mum was) it was really nice to read your message as my Mum,who passed away in Jan 2011, always said that to me even when she was very ill herself. I think even non believers benefit from Gods guidance. Bless you x


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