Still's Disease is a rare and often misunderstood disease which strikes both children and adults (Follow the links below to read more)
After having found a whole new world out there of people other than myself suffering from Stills Disease, and having been asked for "my story", I decided to post it here on my web page. I hope it offers some support, however small, to fellow sufferers. Please do not hesitate to email me if you have any questions, I am more than willing to share experiences or answer any questions I can. I only wish I could've had this network of people to share with when I was at my worst, but back in those days I didn't even have a computer! I have tried to make this as detailed as possible (to the best of my memory) for the benefit of other sufferers who may want to compare notes.
It all started back in October of 1992, when I was 38. One day I didn't feel too well, but I couldn't exactly put my finger on what was wrong. I thought I might be in for a cold or the flu. That same day I noticed a small rash on my right upper arm - it just looked like a minor skin irritation and I didn't think anything of it. The next day I felt completely normal again and did so for the next week, apart from this small rash still being present, but it didn't get any worse or trouble me at all.
One week later, it was a Sunday afternoon, and my mum and I had been at our usual monthly craft market where we had a stall. During the afternoon, all of a sudden I felt I was getting a temperature and I started to feel quite off colour. This time I was sure I was in for a dose of the flu. While driving home from the market, I really started to feel awful, I was getting feverish. My left index finger started to hurt and when I looked down at it, I noticed it was very swollen and tight. I could also feel this prickling sensation on my chest and shoulders. When I got home I looked in the mirror and saw I had a rash all over my chest and shoulders. I took a couple of aspros and went to lie down for a while - the aspros brought my temperature down and I didn't feel too bad after that. However later that night, whilst sitting down on the couch watching telly, my knees started to hurt. When I went to stand up I found I couldn't - not because knees wouldn't work, but because of the pain, it was terrible. I had to get my husband to pull me up from the couch. For the rest of the evening, I sat on a kitchen chair (being higher than the couch) as it was easier to get up and down.
The next day I was feverish again and my knees were even worse so I went to the local doctor's. She told me I probably had some sort of virus which was going around at the time which gave people a rash and painful joints. She told me to take Panadols and if I wasn't better in 4 days she would do some blood tests.
4 days later I was no better so she ordered some blood tests. The blood tests revealed nothing significant except for elevated ESD (or was it ESR?) which meant I had some infection in my body.
At that point, we went to see our previous family doctor (from the area where we used to live). He was none the wiser either. My symptoms fitted a few sicknesses but none of these had shown up in the blood tests. However, he was very helpful and phoned Melbourne's well known infectious diseases hospital, in case they could shed any light on the matter. He spoke to the Registrar of that hospital who asked a lot of questions, which I answered - but it didn't really lead anywhere.
The doctor referred me to a specialist, a rheumatologist. This specialist was a lovely, gentle man. I mention this as it was important at the time, because I was now starting to get worried that maybe I had something very seriously wrong with me and nobody could find out what it was. This specialist also impressed me with his thoroughness, his concern and as I said before, his gentleness and soft voice. He didn't frighten me. He ordered a lot more blood tests, and I mean a lot! He apologised for sending me for more blood tests but explained that there were a lot more blood tests that hadn't been covered at local GP level. He also said not to think my local GP had been remiss in not ordering these extra tests, but at the time I saw my local doctor, she would've had no reason to order all the extras. The specialst, Dr. Findeison, also ordered urine tests and a chest x-ray as well as the blood tests. He made an appointment for me to return in 2 weeks time, and during that time he wanted me to keep a 24 hour diary to record my temperature and how I was feeling.
During that 2 weeks I faithfully recorded everything, and towards the end of the 2 weeks, it seemed my temperature was improving and my joints were improving as well. Again, nothing signifcant showed up in all the tests. He told me his main concern was that I had Lupus, but the tests for that proved negative, same for rheumatoid arthritis, and another couple of possibilities which I now can't remember. His opinion was that it looked like I may have a virus after all as all the tests I'd had weren't showing up anything.
That was in January of 1993. I did have another appointment to see the specialist and probably have more tests but I didn't keep it (not until some 6 months later). This was mainly due to the fact that we received the bills for all the tests. The blood tests alone amounted to close to $300. There was no way we could afford this sort of money regularly, especially as now I was no longer able to go to work. I sort of struggled along and did seem to be getting a bit better. However in late April, the symptoms all returned but oh, so much worse.
It's from here that the order of things get a bit hazy. I just can't exactly remember the sequence of events so I'll just write what I remember - but I was now really sick. The pain in my knees, elbows, ankles and wrists and fingers was excrutiating. My temperature was getting up to 42 degrees C every day (I think that's about 104 degrees F). I was virtually bedridden as I could barely walk (in the earlier stages I was able to crawl around on the floor but then I was unable to even do that). I couldn't eat because I just wasn't hungry and eating made me feel sick - I lost 20 kilos (approx 44 lbs) in 14 days. I could hardly use my hands, they were all curled up. My right hand was the worse affected and because I couldn't use it at all for so long, it sort of eventually cemented itself into the position I held it and even today it is still crooked. I couldn't use the bathroom on my own - I couldn't do anything on my own because I could hardly use my hands - I looked terrible too, my face really looked like grey paste.
Then there was the rash. Every morning when I awoke I had these tiny pink pinpricks all over my thighs, torso and arms. During the course of the day, these pinpricks got bigger and bigger until they all joined together and by evening they'd turned into very long red welts (I looked like I'd been whipped).
Somewhere along the way, in desperation, I went out to the infectious diseases hospital I mentioned earlier, to see what they thought. Another load of blood tests - again showing nothing specific. The doctor I saw at the hospital obtained a report from my specialist and told me that my specialist had been very thorough and in his opinion, there was nothing more he should have done. At least this confirmed my faith in my specialist.
It's worth noting here that I saw this doctor at the hospital early in the day, when my rash looked completely different to what my specialist had ever seen. The doctor reported to my specialist that in his opinion I had AOSD (Adult Onset Stills Disease). He also said that I should continue seeing my specialist for management. I learned that my specialist had already considered a diagnosis of AOSD but the rash I presented with, was not indicative of the disease. The next time I visited my specialist was early in the day - one look and my rash and the AOSD diagnosis was confirmed. (I have since seen photos of the rash on other people, and it is exactly how mine was.)
As I said, I can't remember the exact sequence of events but I'll mention here some of my memories - they will be quite fragmented. The first time I was prescribed cortisone - for me it was like a miracle. I'd wake up in the morning with curled up fingers and hands and within 30 minutes of taking my cortisone tablets, my fingers and hands would start to unfold and I'd have limited use of them. The cortisone also allowed me to again become mobile - around the house at least. I could now walk (still with difficulty) on my own, go to the bathroom on my own, cut up my own food etc. etc. However, whenever we went out I had to have a wheelchair - I needed the wheelchair for about 6 months.
The drugs I remember taking are Plaquenil, cortisone (then later methotrexate), Prednisolone, Zantac and maybe something else, I'm not sure now. I eventually got to fear having blood tests. You'd think I would've got used to them, having them once a week, then once a fortnight for so long, but it had the opposite effect - I came to dread them!
All along, there were two parts of my body which were affected the worst, my right ankle and my right wrist (I went into details about my wrist earlier on). Still today, both my right ankle and wrist are swollen. I can't walk long distances anymore. I've walked with a marked limp ever since I first got sick. In fact I've limped for so long that my right calf measured about 5 cms smaller than my left calf, but I don't mind that. I can't lift anything heavy with my right hand now, and I can't quite manipulate my hands the way I used to.
I lived in our loungeroom for about 2 years, almost 24 hours a day lying on the couch. I hated it because I felt bad that my kids had to see me like that. I remember sometimes in the wee hours of the morning my temperature would get so high, I'd open up all the windows in the lounge and let the wind and rain blow in on me in an attempt to cool down. Other times I had uncontrollable shakes with the fevers.
There was only a short period of time where my rash was itchy - so itchy, like hives, I couldn't stop scratching it. I'd wrap up ice blocks in face washers and put them on my thighs (that's the only place it ever got itchy). Luckily the itchy bit only lasted for about a month, then it just suddenly stopped itching, but still looked terrible. I used to say I looked like an alien out of a horror movie. But luckily again, I never had any rash on my face.
I don't take any medication now, apart from the occasional painkillers if I've walked too far or for too long and it's been 3 or 4 years since I last saw my specialist.
I remember my 40th birthday, we had a party. I was worried about people thinking I was very drunk because every time I stood up I had to be steadied and I had to lean on someone to walk.
I remember people staring at me blankly when I was trying to explain AOSD to them. Nobody had ever heard of it.
I remember one night sneaking in to my kids' rooms, standing there looking at them, crying softly to myself, and kissing their foreheads because I was convinced that I wouldn't be waking up in the morning.
My husband was still working when I was sick but luckily my mum had recently retired and she came down every day to do what she could for me, make lunch for me (when I could eat again), and just kept me company. Of course she never told me at the time, but she was sure I was dying, she felt helpless as she couldn't do anything (a pretty normal "mother" reaction I think.) My husband was excellent in looking after me, cooking meals for the kids etc.
And now for one of the best memories - my last visit to the specialist, he took my hand, wished me good luck, and told me, "Well Karen, I hope I never see you again!"
If only one person reads this and thinks, "I'm not alone after all," and/or derives some benefit or support, then it has been well worth the effort. As I said before, please feel free to email me with any comments or questions.
International Stills Disease Foundation - a major site on Stills Disease