Hello I'm Donna, I've been recently diagnosed with Lupus. For approximately 6 years my GP has been treating me for different associated or similar conditions such as gout, arthritis etc.
I'm uncertain about my future but trying to remain positive.
At present the fatigue is so overwhelming but I am still trying to work full-time and look after my elderly parents.
Looking for advice on how to cope really.
Hi Donna, welcome to the forum. We are all friends here, supporting each other with Lupus. Don't be afraid to ask anything. We are all in this together. These guys are quite a fantastic bunch of people on here, and they're helped me a lot. I know its scary, and it certainly is never easy when you are diagnosed. I was diagnosed a year and a half ago now and I must admit it was pretty scary at first, but knowing there are other people like me, being on this forum has made me more at ease and I've learned much more on here about my diagnosis than anywhere else, eg what to ask my gp and rheumatologist, the meds I've been put on, things to look out for. With time I learned to be ok with my diagnosis, you will too and even though it is hard and you will have good and bad days, with meds you will feel much better overtime and remember you are not alone in this. It will take a little time but you will get there, you will find your feet. Hugs x
Hi CaviarRed, I was diagnosed as having SLE Lupus in June 2022 - I still haven’t got my head around it!…. Not helped that I had adverse reactions to all 3 medications Rheumatology prescribed me to help with the various symptoms 🙁 I stopped taking them, (instructed to do so my Rheumatology Consultant), as quickly as I started them as I had immediate side effects.
I hate it, don’t want it but at least I have an explanation for all the weird & ‘wonderful’ things happening to me & my body….
This forum is marvellous & helps me immensely, it’s like a unique world full of the most helpful, understanding, knowledgeable and caring people.
What I’ve learned thus far is that Lupus is baffling and has its own set of rules, also not everybody can tolerate the drugs prescribed to treat it and what suits one person may not suit another, just because someone has good results with a particular drug & can tolerate it doesn’t mean others can.
Feroglobin, Metataone or Floradix tonics are my energy boosters when demands on me are too great - you’re doing so well to be working full time & looking after your parents whilst you have your own episodes of unwellness to deal with …. I know only too well how draining it is looking after others when you’re battling fatigue & haven’t got a minute to spare.
Keep as well as you can & I hope you have some better days ahead 💐
Welcome CaviarRed, and welcome to the club-that-no-one-wanted-to-join! It can be a big deal to be given this label, so it’s no wonder you are still trying to get your head around it. I hope the shock of diagnosis settles for you in time; for me, it was actually a relief to be given the labal ‘lupus’, because it finally made sense of the madness! I hope it helps to make sense of some of your symptoms too.
I get the fatigue you describe, and most of the people on this forum do too, so you are in good company. The only thing that helps me is to pace myself, which means some days I don’t do much at all! Self-kindness, cutting myself lots of slack, goes a long way. None of this is your fault; don’t be too hard on yourself for being tired all the time.
Feel free to ask any questions any time here. We’re all in the same boat, and sometimes we just need to vent, even if no one has any answers for us. We’re here for you! 🌻💚🌈
Ive found pqacing yourself is the key, you'll have good days and rest days. As long as you recognise a rest day you'll be fine.
Hiya, I am sorry to hear that. I have been diagnosed in October after been treated for many different things too. I felt like a guinea pig and nothing helped. Yes I have pain in my body where it feels broken, migraines for a week etc I exercise regularly and that really helps and especially with the fatigue and mentally it is uplifting. I listen to my body though and rest when I am tired.
I teach Pilates which helps me and others for all different injuries, aliments etc. I do online classes and 121 private sessions if you are interested? Try and make time for you. Kind regards, 🙏x
hi Donna, welcome to the group. I think fatigue can be one of the worse things we have, it took me quite a while to understand that I had to ‘listen’ to my body and not overdo everything. I found myself having cat naps during my lunch break and visiting my elderly mum after work, if I sat down, my eyes just wouldn’t stay open!
Have you looked at the leaflets produced by lupus uk? I found them helpful as well as the ideas/suggestions on here. Sometimes the best medicine is just talking/listening to what others in the same boat have to say, even if they don’t have an answer, you know they ‘get it’. 💐
I admire your spirit.
Have you been referred to a specialist yet ?
You have a lot to contend with, while caring for others ❤️
Hello Donna, welcome to the forum. Im 59 years old living in West Midlands was diagnosed 5 years ago after years of issues and misdiagnosis. Which is very common with us Lupus sufferers. It can be frightening at first. I cried when I first found out, but pleased I had a diagnosis. I was in hospital 3 months and it took me another 2 years to get over that and lead a more normal life. 5 years down the line with great support from my hubby, rheumatologist, my lupus nurse, this forum, Lupus UK, friends and family I feel much more reassured. In fact sometimes I actually think do I have lupus. Im sporty for my age and live life to the full. I would suggest you pace yourself, reward yourself, be kind to yourself. You will have good days and bad. Finding the right meds is key. Finding the right quality of life is also key. Keep going, stay positive and if you would like to chat more feel free to private message me.
Fatigue is not ignorable. As has been said rest and sleep in the day if you can and need to, don't worry about it. If you don't rest your body will start to shut you down or you may find after a few days of not resting much your body will make you stop and rest. I get dizzy, headaches, extreme fatigue if I go out for a whole day and don't rest and sleep for a couple of hours in the afternoon. If I sleep and rest after lunch for a couple of hours I can cope with the rest of the day until mid evening then rest again before bed. You can't carry on or push through this fatigue as you'll cause more problems in the long run. We are all different and you will find what you need to do to keep a decent level of energy. Your body is busy in a war with itself and shutting you down to rest is it's way of coping and fighting and healing to a degree. My neurologist explained that when you have a serious illness your brain has to shut down all functions it deems unnecessary so you can just survive and help you heel. Maybe just limiting it to necessary bodily functions at points and that's it, you can't control when it does this and for how long in general especially when energy reserves are low. Our fight is 24/7 with generally no remission. It may be you need to rethink work etc.. so as your symptoms don't get worse because of lack of rest. Pillow and blanket in the car is my saviour when I'm out for the day.😁 It's a whole new lifestyle we have to take on it seems which is generally for good and for our good in the long run. Remember you need looking after too and to look after yourself or you'll be no use to anyone. Take very good care of yourself. xx
hello Donna, I am sending you so much love on your healing journey. As a lupus warrior myself, I know exactly what it feels like to suffer alone. I was diagnosed with SLE in 2017 and my kidneys almost failed me. Since then, it’s definitely been a roller coaster of feeling like I simply can’t function. I’d say today, I have the most clarity on this disease than ever before because I advocated for myself each time I went to the doctor. In reality, people with lupus are more susceptible to pathogenic infections, like viruses, fungus, bacteria, mold, heavy metals, etc. I would encourage you to go down this route if you can to find out what truly is causing your chronic fatigue etc. I found out this year that I have Epstein Barr virus and Candida. Once I started treating these infections, my lupus substantially improved. I also decided to specialize in autoimmune holistic nutrition to help warriors like us take control of our health. Sending you so much healing energy and all the best on your journey! Xx Genny
So, I think everything has been covered on here, all I can say after more than 30 years with this horrible disease is, if you need to sleep then do so, there is no magic wand sadly xx
Hi CaviarRed, sorry that you have had to join us here Lupus is complicated and not easy to get your head around just give yourself time look after yourself and most important listen to your body and what it's telling you and rest when you need it xx
Hi CaviarRed , I am sorry to hear that you have been diagnosed with Lupus as this is a complicated disease. I was also diagnosed in recently and am very much trying to get my head around it. There is a lot of information here in this forum, Lupus UK and the internet but I've found that the disease is very much individual. What works great for me might not work for you at all but the most common themes in addition to having the right medical treatment for you are resting and listening to your body, exercise and good diet.
Sending you good wishes x
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