What is Lupus?
Patient Stories
Angie's Story
This may or may not be the start of my Lupus but it certainly was the start of me having classic recognisable Lupus symptoms.
About 15 years ago I woke one morning feeling as if I had the world's worst case of flu. I was very fit, 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, 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 literally couldn't move I was lying in a pool of sweat and all my joints were swollen. My husband rang the doctor and when she examined me she sent for an ambulance (she thought it might be meningitis as I also had a rash on my legs). I spent the next week in hospital, examined by a professor on several occasions (but no blood tests) and eventually I felt better and went home. The doctors at the hospital (including the professor) had no idea what it was and said it must have been a 'virus'.
For the next few years I never really felt completely well, it was hard to say why and sometimes I couldn't really put my finger on what exactly it was, I certainly felt depressed which was weird, I was usually very upbeat. I was also constantly exhausted and when I say that, I don't mean like after a late night, I was exhausted and could sleep and sleep as many hours as I was allowed. I was annoyed with myself as I thought I was being lazy. I had attacks of what I could only describe as 'flu-like' symptoms where I just felt generally very ill. I also began to get night sweats and regular migraines. I then developed aches 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 also could 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 my knees then in 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.
THE DIAGNOSIS:
During this whole period I had been visiting my GP on a regular basis (weekly or monthly) it was annoying 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 diagnosis 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 or (as I was) offered 'counselling' in other words I was crazy! Finally when I had the very 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.
It was at this stage that I was lucky enough to be seen by Dr. David D'Cruz (now based at the Louise Coote Lupus Unit) a doctor 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 one of relief. I was 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!
TREATMENT:
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 is 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 'baby' aspirin to thin my blood, the rest I control by diet, exercise and generally taking good care of myself. As the doctor said - "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 usually have 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.
I don't bemoan my problem, I simply accept that I have to look after myself better 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. I am now the Campaign Director at the St. Thomas' Lupus Trust, who better to explain to people how it feels to have Lupus?
Relationships can be difficult as this is an illness that affects partners/family 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.
The biggest problem we have is awareness, 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 things such as kidney failure.
I have been asked if I felt bitter that it took so long for a GP to believe that something was 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 GP's that have thought lupus patients were 'hypochondriacs' have learnt by their mistakes. I have a feeling that they may not have as recently I went to my GP again as I knew that I had something wrong which I didn't feel was connected to the lupus. Being extremely in tune with my body I felt concerned enough to want to know what it was. The GP thought it was 'hormonal' but after a hormone test came back as normal that ruled that theory out. The GP actually said the words 'how far do you want to go with this' when I asked what could now be done! I said I wanted to know what the problem was and insisted on more tests. Sure enough it has been found that I had fibroids. That was bad enough but thank goodness it wasn't more severe. I still cannot understand why doctors seem so reluctant to get to the bottom of what is actually wrong with a patient. I'm now a woman on a mission!!
January 2004.
For the last two months I have suffered from almost constant migraine and found I was even more forgetful than usual. I also discovered that when typing words were coming out jumbled up so all the letters were there but in a different order. I reported all this on my annual check-up and when my blood tests were checked they showed I had now developed Antiphospholipid (Hughes) Syndrome, a condition the media refer to as 'sticky blood'. 1 in 5 lupus patients suffer from this related illness. I am now taking daily aspirin in the hope that this will help control the condition.
December 2005
Lupus is a weird illness in the fact that it makes you tired but then won't let you sleep. Many patients find great difficulty in sleeping more than a few hours a night and the sleep quality is very poor, often tossing and turning most of the night. By July of 2005 I had gone from about 4-5 hours sleep a night to, on some nights, literally one! This obviously couldn't continue so I asked Dr David D'Cruz if there was anything I could do to help me sleep (apart from sleeping tablets which I wanted only as a very last resort).
He told me that they had just completed trials with lupus patients following the low glycaemic index diet (low GI) and most patients reported much less fatigue. This obviously sounded worth trying, especially as I was getting quite desperate at this stage.
I started the diet on 14th July and within 3 months had lost 2 stone (which my knees thanked me for!). I was much, much less tired and was happily getting 8 hours undisturbed sleep a night. My joint pains were less and people that hadn't seen me for a while described me as 'glowing'. I had to admit I'd never felt better.
I am still following the principles of the diet and still sleep well and feel great. For more details of the research go to www.lupus.org.uk.
It's now 2009 and I am still the Campaign Director for the St. Thomas' Lupus Trust. I remain well apart from occasional flares and the lupus attacked the tendons in my thumb last year, resulting in some pretty painful steroid injections into it (twice, as it recurred!).
Other than that I am now well and truly into the menopause. As I have aps (sticky blood) hrt was never an option for me, but as I desperately avoid medication whenever possible I didn't want to go that route anyway. I have controlled all the symptoms in my usual style by diet and exercise. I'm happy to report that apart from some of the dreaded hot flashes I have had no other symptoms, so obviously my method worked. I look forward to the end of the menopause as often women report that lupus goes into remission then as it's not being triggered by hormonal surges.
October 2009
I had been plagued with pains in my shoulder for about a year, 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 infact 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 shold be that, and I'm told that is 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!!
The tendons in my thumb - as reported above, have gone yet again. I have had multiple steroid injections which even at the strongest level only last a few months. I may now have to concede defeat and look at an operation, the only thing that stops me is I would apparently be out of action for quite a while and that would never do!
December 2009
I can report that the operation is going ahead on my thumb - 4th December 2010 - and a Happy New Year to me!! So if you're wondering where I am that explains it. I should be back to (fairly) normal within 2 weeks. Hopefully.
Updated December 2009
