This may or may not have been the start of my Lupus but it certainly was the start of me having ‘classic ‘ recognisable Lupus symptoms.
I woke one morning feeling as if I had the world’s worst case of flu. I was very fit (ex WRAF Officer) and healthy, rarely ill, certainly never been in hospital and never complained when I had minor ailments, so there was a clue of how ill I was in the fact I absolutely insisted upon going to the doctor. The doctor didn’t examine me at all but just recommended rest and aspirin or something similar. I went home but still felt dreadful, as if I had flu but a hundred times worse, I felt like I had gone ten rounds with Frank Bruno and lost the lot!!
At the time I was married and the next morning I woke up and couldn’t move at all, I was lying in a pool of sweat and all my joints were hugely swollen. My husband rang the doctor and when she examined me she sent for an emergency ambulance (she thought it might be meningitis as I also had a rash on my legs). I was in a lot of pain, so much so they actually had to put me on an inflatable mattress as the normal mattress was difficult to lie on. I spent the next week in hospital, examined by a professor on several occasions (but no blood tests/any other tests!) and eventually I felt a bit better and was sent home. The doctors at the hospital (including the professor) had no idea what it was and said it must have been a ‘virus’ and that I should ‘take it easy for a while’.
For the next few years I never really felt completely well, it was hard to say why and I couldn’t really put my finger on what exactly it was. I certainly felt depressed which was weird, as I’m usually a very upbeat person. And I mean serious depression with thoughts of ending it all – which was extremely out of character. I was also constantly exhausted and when I say that, I don’t mean like after a late night, I could sleep and sleep as many hours as I was allowed. I’d get up at 8am and by 9am I was back asleep on the settee where I’d stay all day. I was annoyed with myself as I thought I was being lazy and as I was way too young to be feeling like this I couldn’t figure out why I was so tired all the time. I had attacks of what I could only describe as ‘flu-like’ symptoms where I just felt generally very ill and achy. I also began to get ‘night sweats’ and regular migraines. I then developed aches and muscular pains which can only be described as similar to “growing pains”, I couldn’t seem to sit comfortably at all and I’d spend all night fidgeting.
During this time I developed what I thought was a severe toothache. I went to the dentist who said I needed root canal work. I had treatment which came to several hundred pounds. A few weeks after the treatment I returned saying the pain was back as bad as ever. The dentist said I had no nerves under the tooth and it was impossible, I assured him the pain was real. Yet another ‘medical professional’ that I couldn’t convince I had a problem. I was then sent to a specialist in Harley Street who could also find nothing. Overall the treatment cost over £500 and not once did any of the dentists suggest I consult a doctor to see what was causing the pain!
Finally, I developed severe pains in both my knees then in both my hands, to the extent I couldn’t hold anything that weighed more than a few ounces, or even do something simple such as open toothpaste as it was too painful.
During this whole period I had been visiting my GP on a regular basis (weekly or at the very least monthly) it was very frustrating as I couldn’t seem to convince them that something was wrong, although in my heart I knew I had a problem. Also, typical of Lupus patients I looked really well!
I was showing all the classic symptoms of lupus: mouth ulcers, depression, exhaustion, joint/muscle pains, night sweats and migraines. The usual misdiagnosis in the case of female lupus sufferers is that they are having hormone problems; change of life etc or that they are stressed. I was convinced it was none of these but no one could tell me what was wrong or indeed believe me that I had a serious problem. Many lupus sufferers are treated as hypochondriacs, my GP was by now fed up with seeing me and actually leaned across the desk one day and said “I think maybe you should consider some counselling” - in other words I was crazy! Finally, when I had severe pains in my hands which then moved into my knee joints too, the doctor referred me to an arthritis clinic at Mile End Hospital in London. I think mainly to get rid of me as they were pretty fed up with me constantly appearing in their office.
It was at this stage that I was lucky enough to be seen by Professor David D’Cruz (now based at the Louise Coote Lupus Unit) a rheumatologist that was also a lupus specialist and he recognised the symptoms immediately. One simple blood test and I had the reason for all the problems. My feeling after being told I had Lupus was weirdly one of relief. When he said I had lupus my actual words were ‘Oh thank God...... what’s lupus?’ I’d been very close to actually believing I was going insane and that the symptoms were all in my mind, now I had a name for my illness and no matter how bad that was at least I knew what I was up against. From the point of the first big flare to diagnosis was over 4 years! I’ve now discovered that is an ‘average’ time to a correct diagnosis which is quite shocking!
Lupus is commonly treated by anti-malarial drugs, which relieve most people’s symptoms (strange but true). Unfortunately I was allergic to them; the next stage would be steroids. I decided that the amount of pain I suffered was better than taking the steroids and having possible side effects so I rejected them. I now take only a statin as lupus appears to have sent my cholesterol haywire and no matter what I do I can’t control it. The rest I control by diet, exercise and generally taking good care of myself. As Professor D’Cruz said when he first diagnosed me “rest when you need to and so what if the carpet needs hoovering don’t worry about it.” Stress is often a real trigger for Lupus, unfortunately I have always had high-pressure jobs and in reality it’s often hard not to allow myself to become stressed. It is the world’s most frustrating illness as you never seem to have a day free from a reminder that you have it and you’re never too sure when you wake up whether you’ll be having a ‘good’ or ‘bad’ day.
I don’t bemoan my problem, I simply accept that I have to look after myself and that I can, to an extent, control the lupus rather than it controlling me. I decided that there was a reason why I had Lupus and perhaps it was that I could help raise funds and also raise awareness, which I have endeavoured to do. As the Campaign Director at the St. Thomas’ Lupus Trust, who better to explain to people how it feels to have Lupus and help other patients?
Relationships can be difficult as this is an illness that affects partners/family/friends as well as the patient. Often you can feel great, get ready to go out and then suddenly feel exhausted and don’t feel like going. It takes a very special partner to understand. I have heard many stories of people leaving as they are unable to cope with their partners having lupus. At least now as my friends are getting older too they tire out quicker than they used to and it’s often them that wants to go home after a night out whilst I’m still dancing round raring to go! For young people it must be very frustrating when their friends are still partying and they have to go home.
The biggest problem we have in this country is lupus awareness and getting the media to cover it - it often seems to be a ‘dirty word’ to them not to be mentioned in the press. Even though the illness is very prevalent (more than MS, leukaemia or muscular dystrophy) affecting 1 in 750 Caucasian women and 1 in 200 women of ethnic minorities such as Afro-Caribbean or Indian. Early diagnosis is vital as Lupus can attack internal organs and cause problems such as kidney failure. I always say if only Coronation Street or Eastenders would have a story line with Lupus my work would be done – everyone would know what it was. Also it’d make a great mystery storyline as it is such a strange illness that would have everyone wondering what was wrong with the character that had it.
I have been asked if I felt bitter that it took so long for a GP to believe that something was really wrong when a simple blood test would have confirmed it. I said no, as that was a wasted emotion and as long as all the GPs that have thought lupus patients were ‘hypochondriacs’ have learnt by their mistakes that’d be a huge improvement. Although sadly, I have a feeling that they may not have as on the few other occasions I have been to the GP I still have difficulty convincing them there’s actually a problem and mostly unrelated to lupus. As someone that has to be dragged kicking and screaming into a GP’s surgery, when I do appear they should be thinking ‘this isn’t someone that cries wolf all the time’ and listen to me.
In 2004 I was also diagnosed with antiphospholipid syndrome (sticky blood) - well should I say actually I diagnosed myself as by then I knew what that was. 1 in 5 lupus patients develop the condition. I suspected I had it when I had constant migraines and was really struggling with my memory (from someone that had the memory of an elephant). I take a baby aspirin daily which so far seems to be enough to thin my blood sufficiently. This condition also has to be regularly monitored.
I have had problems with lupus and have flares like anyone else. Lupus attacked the tendons in my thumb and I ended up having an operation, very successfully I’m pleased to say and it totally fixed a painful condition.
In 2009 I was plagued by severe pains in my shoulder, I muttered about them but never sought advice. Finally, it became extremely painful and I was forced to ask my GP what it might be. Bear in mind I am someone prone to auto immune illnesses. What did he suggest and in fact asked me to have blood tests for??? Diabetes! There is none in my family, I am (apart from the lupus) fit and healthy and only a few pounds overweight, I eat healthily so there was no reason on earth why it should be that, and I’m told that this sort of pain quite a rare symptom of diabetes. So in desperation, and crippling pain, I begged for assistance at the unit. I was sent for an MRI and scan and low and behold they immediately diagnosed osteo arthritis, which was a far more likely diagnosis than diabetes. I do despair of GP’s!!
It never rains but it pours, misery likes company with auto immune illnesses and you do tend to collect a few and eventually it was discovered that extreme pain in my shoulder was actually caused by osteo arthritis of the spine (sigh). I did have a procedure done on that but it wasn’t done at all well and predictably it wasn’t a success, which was a shame as most people report relief from the pain after this procedure. I tried again with no success so currently I decided I just have to live with it.
It continued to pour as in 2011 I started to have knee pains - which I put down to lupus and thought ‘don’t complain, just suck it up and carry on’! However the pain in my right knee was excruciating and pretty much the worst pain so far. At one point I really couldn’t walk at all and got a huge swelling at the back of my knee. I was really struggling to get from home to work and in constant agony. I decided to check out what was happening (after a long time I admit)!
Long story short, the osteo arthritis had rampaged around settling in my knees and that was causing the problem. It got to the point where I was offered an arthroscopy, which is considered a bit controversial by some doctors. I had the procedure at the end of 2011 and I personally thought it was excellent. I had no pain and 6 months later my knee has improved hugely. An odd twinge but in comparison with the way it was I’m thrilled with the result and am often caught racing around like I did before the problem arose.
I don’t let lupus bring my life to a grinding halt and do whatever I want to. I ran 5k in a Santa Run in 2010 and in August 2011 did a 12,500 feet skydive a couple of weeks before my knee op (my physio was horrified and gave up with me at that point!) both to raise much needed funds for the St Thomas’ Lupus Trust.
So let’s hope that’s it, for now anyway. All I can hope for is lots more lupus awareness and support for the St Thomas’ Lupus Trust. I have a vested interest in keeping our amazing researchers equipped to do some great research and at the very least improve treatments if not find a cure for lupus - and I have every faith in them! Oh and also if you’re a writer for Eastenders or Coronation Street contact me—I have some great stories you could use!!