When you get a diagnosis of lupus you naturally want to learn all you can about it and generally it’s easy enough to get lists of symptoms from reputable and trustworthy sources, so that’s all fine. However, there are some things that you might have experienced that no-one mentioned and were left thinking ‘what the heck’?!
I thought I’d write about a couple of things that happened to me and at the time, I didn’t know that some were pretty common with lupus and there's one I feel sure is lupus related, but haven't yet had confirmation of that..
Reaction to insect bites
The first weird thing that happened many years ago was when I was on holiday in Greece. I was having a lovely time and as I don’t have any problems with the sun I was outside a lot, particularly in the evening enjoying the mild weather.
I woke up one day and when I got out of bed my legs were absolutely covered in huge red bumps and when I say huge that’s exactly what they were and there was so many they were practically joined together. I assumed that they were mosquito bites as I knew people often got bitten in Greece and as I hadn’t had any before I also assumed the amount and size was normal.
I went to the local pharmacy and the pharmacist asked me to show him the bites, I lifted up my long skirt and he literally reeled back. ‘What is that?’ he asked ‘mosquito bites’ I replied. He moved closer and looked again and said ‘Noooo, not possible’. I kept trying to reassure him that’s what I thought it was but he was clearly not convinced, I guess he’d never seen a lupus patients reaction to mosquito bites before.
Having compared notes with lots of lupus patients, the reaction I had seems to be pretty common but at the time I had no idea what was going on.
The other things I experienced was also very strange at the time and again I had no idea what it was. I kept getting a feeling like insects were crawling on my leg, I’d look down expecting to see something but there was nothing there. It happened time and time again and I couldn’t work out what was happening, it wasn’t painful, just annoying so I never bothered to get an explanation until years later when I accidentally found out what it was on the internet. (parasthesia pic)
The feeling is know as Paresthesia defined as: a burning or prickling sensation that is usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body. The sensation, which happens without warning, is usually painless and described as tingling or numbness, skin crawling, or itching.
Again, I have spoken to many people and this also seems to be pretty common with lupus patients,
For years I was plagued with fungal nail on just one toenail. I tried every conceivable treatment but nothing seemed to work. In the end with a huge amount of persistence and a natural remedy, it’s finally pretty much gone. I had no idea this was also possibly linked to lupus. Immunosuppresants can also make the body susceptible to infection such as fungal nail.
Restless leg syndrome
For some years I have suffered from restless leg syndrome, in my case it usually occurs when I’m lying on the settee. I get a sort of tingling and have the urge to move my legs to relieve it, it’s not that painful for me, more annoying, but in some people it can have a huge impact on their lives and be very painful.
People with lupus are more at risk of developing restless leg syndrome than the general population.
Mouth ulcers are very common with lupus, something I have suffered from on many an occasion, as is dry mouth (Sjögren's syndrome) and most lupus patients know all about these symptoms.
Before being diagnosed with lupus I had a very intense pain like toothache and after visiting a dentist they decided the best course of action was to have root canal work. So I did that and the pain didn’t go away, the dentists were at a loss as to why so they sent me to a specialist in Harley Street. They also had no explanation and eventually the pain went away along with about £500 of my money! So I'm left wondering is it lupus that caused the problem?
I now have a regular issue where my jaw goes out of alignment, I first noticed it over 2 years ago, it got really painful when I bit down as my teeth would bang against each other, It comes and goes on a regular basis and again no-one has ever found the cause. It’s not Temporomandibular joint syndrome (TMJ) as the symptoms aren’t the same (and there's no pain anywhere in my jaw), so it’s a mystery that may also be lupus at work. I don't yet have a definitive confirmation that it is lupus, so the jury's still out on this one, but I'd be interested to hear from other lupus patients that have experienced anything similar so we can see if there's some sort of pattern.
There are many things that might be related to lupus and not necessarily listed in symptoms, likely due to the fact that not every patient may experience them. It’s much easier now to get answers to these sort of mysteries than it was 20 years ago when I was diagnosed.
If you have anything that you’re concerned about seek advice from your doctor, particularly as I think we have a tendency to say ‘oh it’s just something to do with lupus again’. I remember years ago that a patient told me she’d had back ache for weeks and ignored it thinking it was lupus and it turned out she had slipped a disc! So if in doubt contact your GP.