I am 52 and live in London. I have been diagnosed with lupus since 2013. It took nearly three years for an accurate diagnosis after many bouts of illness and endless tests. I also suffer from Fibromyalgia, PTSD and anxiety.
I do not take any pharmaceutical medication, because the only medication prescribed had horrendous side effects. I prefer to treat this condition holistically; Wholefood diet, regular exercise, meditation, natural supplements, grounding etc. I was advised a few weeks ago that sunshine is not good for me. After travelling several times a year since the diagnosis I was quite surprised. I love the sun and always travel to hot countries. I recently discovered what flares were and how often I have them. I was relieved and upset at the same time. Upset at the severity and complexity of lupus and the lack of information from health care givers but relieved to know the fevers, sweats, fatigue, joint pain, mind fog, lethargy, depression and chest pain was part of the condition. I am currently on holiday in Jamaica and experienced a night of terrible leg cramps ALL NIGHT! I wasn't entirely sure what triggered them and that's what led me to this site. I have suffered from cramping before but not for some time. I hadn't realised it was due to Lupus and possibly sun exposure. I did some exercise for the first time in a couple of weeks and thought that was the cause but since reading I have discovered it could possibly be exposure to the sun. I don't suffer from any skin issues and so far, thankfully, my organs are also unaffected. My hair is falling out rapidly, before I cut it all off I'm looking into minerals that my body may lack, such as zinc, magnesium, calcium and potassium.
I feel quite sad and isolated on this journey at the moment and long for a space where I am not alone. I often wonder what will become of me and feel fearful for the future. No one around me really understands my daily challenges, because I look so well. But beneath the surface there is a constant battle raging. It's a lot.
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I hope you find this forum useful and informative; we offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...
It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience; not everyone with lupus will be affected by light sensitivity.
UV light can trigger a flare in people with lupus. Some people with lupus feel unwell after going out in the sun, even for a relatively short period of time (in extreme cases for as little as a few minutes). For example, they may develop migraine, nausea (feeling sick) or joint pains. The joints may even become tender to the touch and swollen. These are all manifestations of light sensitivity in lupus patients. We published a blog article on ‘Coping with Light Sensitivity’ which you can read here: lupusuk.org.uk/coping-with-...
We also published a blog article on ‘pain management’ which I hope will be of help to you: lupusuk.org.uk/pain-managem...
We published an article last year on lupus and exercise with helpful tips and information on why exercise is important for people with lupus. You can read this article here: lupusuk.org.uk/lupus-and-ex...
Remember to not push yourself too hard as it takes time for the body to ease itself into a new routine of exercise. It is advised to consult your GP or physiotherapist before undertaking new exercise regimes to ensure you can gain the most out of them.
Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....
I would advise you to discuss your complementary therapies and supplements with your consultant for information on any potential adverse effects or interactions. It is important to remember that everyone with lupus is different, what may work for one person may not work for another and could be potentially harmful.
I’m sorry to hear you are feeling this way. I’m 24 and i fear for the future too and lupus does get me down as you said you look ‘well’ to everyone but inside your crumbling.
Take every day as it comes and make the most of each day and try and just be positive it’s hard but honestly having a good mood does help.
As for your cramps in your legs I suffered from this too and I purchased a magnesium spray from Holland and Barrets for muscle pains and I just spray it on my legs before bed.
Thank you so much for your positive words and vibrations. I have a magnesium spray at home not with me. I'll have to find an alternative. In the meantime I will monitor any possible leads triggers that caused the cramps in the first place. I try to be as positive as possible but sometimes I despair.
I can’t stand bright light. I shut my eyes in the car (I don’t drive) and even bright white cloud is too much. Supermarket lights sometimes make me feel ill. I have refleca lense in my glasses but it does not help very much at all. Seems weird that light can have this strange affect.
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