How can I help

[Sue6]

Hi guys i am new to the group and wanted to introduce myself. I was diagnosed 36 years ago with SLE lupus. Today at 56 and for the past 10 years I have been drug free, heathly and no joint pain. I decided to join the group after meeting a girl called Emma who has lupus and is not getting the advice and support she needs from her doctors. They are treating the symptoms not the cause. I am no doctor but I want to use my experience to help others as I am so surprise to find how little we have moved on since my diagnoses. To remind me I have ordered a copy of my medical records to help with the more details diagnoses but these will take some time. So in the meantime anyone out there with SLE lupus or symptoms of SLE lupus which hasn't been diagnosed yet I'm here to help. What I can say also is joint pain in lupus is a symptom yes it needs treating to help manage the pain but the underlying focus should be to treat the cause Lupus and the pain will become manageable. In my case the medication was only the first step. It is a balance between a heathly life style which supports your immune system. I cut out all wheat snd diary (back then i used goats products) for example that helped my joints and digestive system. I didnt smoke or drink during that time. To protect myself from catching infections I had a flue jab every year took 1000ml vitamin C every day , used hand wash everytime I touch anything in public. Took regular exercise by this I mean at my lowest I walked and walked to relax my joints. I soaked my hands and feet in warm water first thing in a morning then moved eash joint to loosen them up. These are just some of the silly things that I believe help me. I was lucky enough to meet a doctor who sadly died some year ago who help me to understand the illness how to read the signs my body was giving me and how to treat them accordingly. But the one drug that supported all of that through my pregnancy and beyond for 20 years was Steroids they kept my lupus at bay and help my body fight it and eventually beat it.

How can I help!

[Paul_Howard Partner LUPUS UK]

Hi Sue6 ,

Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.

Thank you for sharing some information about your personal experiences. It is wonderful to hear that you have been able to manage your symptoms effectively and how lifestyle adjustments have been an important part of this.

[pmrkitty]

Hi Sue6, I have not been diagnosed with Lupus but have PMR/Sjogrens/Fibro. I just thought how wonderful it is of you to put yourself out there for all of us to benefit from your ongoing Illness and what you have done to fight back. It is people like you that make this site successful and I wanted to Thank you!💞

[suemh2]

Hi. We can definitely make lifestyle choices to help ourselves. I use Somatics exercises to maintain some mobility, very gentle. A good diet does help. I love garlic but it does cause upsets! Despite my other hall's protests we went wholemeal. Being positive isn't easy but it makes a big difference. Thank you for sharing, we do need to remind ourselves to listen to what our body is trying to tell us. X

[Jmcb123]

Hello Sue6, what a lovely refreshing post to read! I was diagnosed in October 2018 so relatively new to all this and your post has filled me with positivity this morning! Thank you! I am trying to eat healthily and do exercise and remain positive! So far feeling much better than I was 5-6 months ago! Thank you for posting 👍🏼

[Raceworks52]

Hi Sue I have just joined the group. Like yourself I have had SLE for 36 years and I am also 56 turning 57 shortly. I was inspired by your story but I have not ever been Lupus free. I have to agree we have not come very far over the years. I am still taking plasmaquine which I started taking when I was first diagnosed all those years ago and i have been on steroids etc in between. I am presently living in South Africa and the sun causes my lupus to flare. However, to have groups like this one to join and share valuable information is a blessing. Always interested to hear any useful information. Thank you 😊

[Sue6 in reply to Raceworks52]

Hi Raceworks52. I'm sorry to hear u are still suffering with Lupus. I can let u know what worked for me and hopefully may help you. Steriods (Prednisolone) as far as I am concerned is the one medication i couldn't have lived without and the last medication i weaned myself off. This is why I am very surprise this same medication is not used more widely. The benefits out way the side effect. With regard to the sun. You must keep cover from with a loose kaftan. You must use sun block 50 SPF on your face. I put foundation over the top to make it look better. I also wear a sun hat and always sun glasses. Hope this helps.

[Raceworks52]

Thank you Sue lovely to hear from you 🙂