LUPUS RELATED NEWS & UPDATES
Latest news from the Lupus Trust
There are small things you can do for your health, you don’t have to make huge changes to make a difference. Infact, making huge changes can be daunting and often make us fail at the first hurdle. Start with one small change and see if it helps you can then try other things as any improvement in our health at all is a big win for us.
Information is always popping up regarding foods and supplements that may trigger lupus flares. The information is sometimes conflicting and not all of us are affected by the same things, but if you are having flares it might be worth looking at whether any of the following is triggering flares and eliminating them from your diet.
When a new patient asks for advice one of the first things I say is treat your body well, it needs your help. High up in the list of things I personally think is very important for your body (lupus or not) is good nutrition.
As we say in our section on diet there’s no particular diet that is recommended for lupus but there are foods that can help your lupus or on the opposite side of the coin make you sick.
When I met a lupus patient I’d ask what other autoimmune conditions they had. They’d always ask how I knew they had more than lone condition and I used to say it was like lupus having a party and invited all its friends to come along. In other words its sadly not unusual for us to have two or more autoimmune conditions, know as overlap syndrome.
Many, many years ago I was diagnosed by Professor D’Cruz with carpal tunnel syndrome, something that’s quite common amongst lupus patients. It causes tingling, numbness and pain in the hands, fingers and wrists because of pressure being put on the nervous system. Lupus can cause joint pain (arthralgia) and inflammation in and around the joints, resulting in problems like arthritis, tendonitis and as mentioned carpal tunnel syndrome.
I’ve had lupus for about 30 years and this is personally what I wish people knew.
It’s incurable and chronic. Just because you see us out and about doesn’t mean we’re ‘better’ or ‘cured’. We have some days that the pain level is tolerable and some days where it isn’t so we take have to take full advantage of the days we can function at all.
I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head.
The reason I decided to have a go at writing this was because over the years I have heard so many patients talking about the difficulty in claiming benefits and the fact that the people dealing with their claims don’t understand anything about lupus. In a way I sympathise with the person that has to deal with the claim as lupus is far more complex an illness to have to assess than some others, it’s definitely not cut and dried so they can just tick off boxes. However, not understanding lupus does not justify them refusing benefits.
I always tell the story of how, before diagnosis of lupus, I had a severe pain in my jaw and my dentist said that I needed root canal. A couple of weeks after the procedure I still had the exact same pain. I was referred to a dentist in Harley Street who also couldn’t work out what was wrong, so I’d spent a lot of money on unnecessary dental work (not to mention the pain). This made me a bit wary of dentists.
I’ve often posted on social media telling people that if they see us out and about, even if we outwardly look very well, we’re not ‘cured’. So I thought I’d address the issue of the fact we can sometimes have good days, these are defined differently for everyone as we all have varying degrees of pain that we consider ‘normal’ for us.
