It was during the war, in England. I lived in East London with my mother and baby brother and as the Germans were dropping bombs on us we were evacuated to the country. We moved to the West Country (Cornwall) and I attended school at the local primary school.
At the age of 6 years I started to complain about my knees hurting, my knees became very swollen and I was in a lot of pain. The local Doctor said I had growing pains and told my mother to bath me in salt water - which of course did nothing at all.
Shortly after this the war ended and we returned to London.By this time I was becoming stiffer and stiffer, I had a fever on occasions and was screaming in agony. The doctors did not know what I had wrong and my mother pushed me around in a pushchair from hospital to hospital trying to get something done. As there were thousands of men coming back from the war with bits missing and needing a lot of care, the hospitals were crowded and I sat in my pushchair looking very well, but stiff as a board - no one knew what to do with me. I had no pain relief and my mother was extremely distressed. Eventually the doctors took out my tonsils - they thought it might help - it didn't.
At age 8 I was taken into a Heart Hospital where they made me lay flat for 6 months in case my heart was affected - then they said it wasn't. By this time I couldn't walk, my hands were rigid and my whole body throbbed with pain.
One day whilst waiting at the doctors surgery my mother saw a magazine with an article about a special hospital\school for children who were unable to attend mainstream schools - she asked the doctor about it and to cut a long story short, the doctor pretended that I had TB joints and I was accepted at the special school. The school was down in the south of England and so I only saw my parents rarely which was very hard. I used to roll about my bed in pain and received no pain relief at all. The staff tipped me out of my wheelchair and said "if you want to eat - walk", so I shuffled around and somehow managed to survive. A consultant from a London hospital used to come down and see us all once a month, and I used to have physiotherapy, but no drug treatment. My Stills used to come and go, when it flared I ran a high fever and could barely cope with the agony in all my joints which throbbed - rather like an infected wound. I discoverd one day that if I could completely relax rather than tensing myself up waiting for the next pain, I didn't feel the pain so much. As I spent a lot of time in bed I taught myself relaxation techniques that I still use today. Eventually the doctors decided to try gold injections on me.I had a course of 12 injections which were into my thigh muscle (I understand they inject gold directly into joints now), they did nothing except give me a terrific headache.
In the late 1940's people started talking about steriods, but apparently they were expensive and so I couldn't have any. When I was 14 years old, the doctors decided to try a drug called butazolodine on me. It worked, I felt wonderful, I wanted to dance I felt so loose and pain free. I had no more bad flare ups of the disease. The doctors said it had burnt itself out. My joints were of course all damaged and were still painful, but not the terrible feverish pain I had experienced previously. I could walk, though limping quite badly and my hip joints were particularly painful if I walked too much, but I could manage. My hands were functioning fine (I think it was the hot wax treatment that helped my hands), I left school at 16 and went home.
My hips have been the main problem, and I have tried various NSAID's over the years which kept me going. I think the best was probably Piroxicam.
About 3 years ago my stomach started to become difficult, indigestion and burning and the doctor thought I ought to stop the Piroxicam in case I had a stomach bleed. A rheumatologist suggested I try Evening Primrose Oil - 8 capsules a day plus fish oils - 4 a day to see if they help. I have been taking co-proximol for pain but I believe they are bad for me so at the moment all I am taking is Aspirin - which is also bad for my stomach.
I now have High Blood Pressure and recently have been diagnosed with Atrial Fibulation - cause unknown so far. I have just moved and so have to see a whole new set of doctors - which could be good - we hope.
I am now 58 years old and I find it more difficult to cope with the pain and joint problems as I get older. Another annoying thing is that people treat me like a little old lady with arthritis - which is what I am of course but I feel a bit different to an elderly person with new arthritis.
I have managed to lead a very happy life in spite of the Stills, I married a lovely man and we are still happy together. I have three lovely children who are all grown up and married and have children of their own (and no Stills Disease).
I hope my story will be of help to some of you. If there is anything I can do to help please let me know.