So pleased to be joining this lovely online community. I was diagnosed with M.E. originally in 2012 but had bloods taken in February this year after a huge flare in symptoms which came back positive for ANA and a high level of anti dsDNA antibodies (a level of 129), so I have been referred to a specialist clinic and am currently awaiting a diagnosis. It’s a scary time to potentially have uncontrolled active lupus, but trying my best to stay calm until I can be seen by someone in the know.
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Haubrey1
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First of all, I'm so sorry. It's not nice to be diagnosed with any condition and especially waiting for that official diagnosis. That being said, there are massive variations in how mild or severe the effects of lupus can be, and also variations in how well you tolerate medication.
I would advise you to look through the amazing resources on Lupus UK and contact them if you have any queries. When I was diagnosed my consultant advised me straight away not to go to the forums and I didn't for a few years. This was brilliant advice. Although health unlocked and other forums can be brilliant for support, they are also often filled with the worst stories and patients who are really struggling. It's understandable as we don't normally turn to a support forum when our lives are 100% fine. When your first diagnosed this can be overwhelming and seem like bad side effects/ symptoms are inevitable.
In reality, the majority of people with lupus will lead a relatively normal life with medication to keep their condition stable. Many only see their consultants annually or every 6 months, and are able to work etc. There is no reason this won't be the same for you. Please try to bear that in mind for now.
My life is already very disrupted by whatever it is (although Lupus does seem very likely given the blood tests and range of symptoms I have), I was housebound for a couple of years after 2012 and have been housebound now for nearly a year due to crippling fatigue and pain and other issues. So for me, a diagnosis of Lupus offers me a sense of hope at the moment, as there may be treatment that could help. With M.E. there is very little help available and you are mostly left to muddle along on your own. We shall see 😊
A diagnosis can often be the beginning of figuring out what you need to do to make your life better. For lupus patients, it is very important to figure out what your personal triggers are and avoid them, and if you do, you can often live a relatively normal life with a few accommodations due to the lupus.
I discovered what my triggers were, and in my case I responded very badly to sunlight, stress, and sulfites (which are common in wine and processed foods as food preservatives). I was on lupus medication at first (meloxicam and hydroxychloriquine), but by changing my life to avoid triggers that caused flares, I was able to get off the meds, but am very careful to avoid triggers because I am now fully aware of what can lead to a lupus flare and avoid those things.
So I changed jobs to lower my stress, get plenty of rest to deal with the tiredness, avoid sunbathing and spending long periods of time in direct sunlight, gave up wine, and read food labels to avoid sulfites. I also take vitamins to keep up optimal health.
I also don't blame everything on lupus... for example, I had symptoms that turned out to be a vitamin D deficiency and a low thyroid (common in lupus patients, but not lupus itself), so when I got those treated, it improved the tiredness a lot. Lupus is tricky and can partner with a lot of related diseases like low thyroid, vitamin D deficiency, fibromyalgia, dry eyes, etc. So partner with your doctor to be sure you get to the bottom of things if you get a new symptom or don't feel right.
So it does take some work to manage, but it is second nature to me now and I rarely have flares or any of the more serious symptoms now.
So you're beginning your journey with lupus, but you may start feeling a lot better if you figure out your triggers and avoid them and partner with your doctor to minimize the impact on your life. There is good advice out there for managing lupus, so you can take charge of your health and reduce the impacts on your life.
Thanks AimeeA, that’s really helpful and hopeful ❤️
I already know that stress can be a trigger for me and I’m trying to track symptoms etc to try to understand more about anything that might be helping/hindering. I’ve recently found that I seem to be photosensitive, so am avoiding the sun as much as possible. It never occurred to me before lupus was suggested that it could be the cause of the rashes I’ve been getting over the past few years.
My vitamin D levels were low but I’ve been taking vitamin D since February as advised by my GP and it hasn’t helped with my energy levels. I never drink alcohol and have avoided caffeine for a long time, and I find that eating low GI tends to be more helpful than eating other foods but the difference is very marginal.
I’m keen to learn more and to try to make sense of everything, whilst also being patient because it will be a while before I potentially receive a ‘proper’ diagnosis.
Yes, it does take time... but it will be worth it! I think there is a big difference in feeling and attitude if you make a decision to take charge of your health and do what it takes to optimize it vs. being passive.
I've known some lupus patients who will constantly complain about their flares, yet they refuse to give up sunbathing, drinking, need for rest, and things that lead to flares seriously. I made the decision that health was indeed my top priority and I needed to figure it out and take it seriously if I wanted to be well.
Once you do that, there is a very good chance your health will improve, though it does take detective work and time to figure out what works for you and persistence to diligently avoid those things that trigger you.
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