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.