After 11 years of being officially diagnosed with SLE I've noticed some of my symptoms starting to flare up more often as I get older (yes I realise that sounds almost ridiculous coming from a 28yr old), and for the first time reaching out to others that can understand how I feel and the difference between a good day and a bad one. I've only moved back to Cornwall from Australia (sun literally hates me - hence the move back) after 20 yrs of hiding in the shade and many hospital trips) 4 years ago.
Just wondered if there's anyone my way (or anyone really) who's up for a chat and share our stories, I don't know anyone else with it- however my mum has Fibromyalgia and I suspect Lupus too (goes together quite often) she gets a full on butterfly face when she having a bad day. I guess just to not feel so isolated when I say I'm having a flare up and can't get out of bed. Love to hear from you ^_^ -Leesh xx
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Elysia_90
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hope with the cooler weather you will feel a bit better. though I am not in the lovely Cornwall I can completely relate to the sun and warm weather issues. I'm sure you are aware that pacing and being kind to yourself especially when you are having a rough time is very important although much easier said than done too! I only pop on here every now and then but there are lots of lovely people with great advice who will be able to answer you in more detail I'm sure. Sometimes weekends are quieter so maybe re post if you dont get many replies, anyway hope you settled back here ok, thats quite a move isnt it, all the best T
Hiya, thanks for the reply and the advice. It is a big move halfway round the world and can be hard being so far from my parents and sister but health wise I’ve not had to go into hospital (touch wood) since being back. I was 4-5 times a year in Aus so it’s a bit of a novelty for me 😝
I hope you have a great weekend and I might try reposting in the week, thanks again! X
I’m no spring chicken but I’ve had lupus for many years, my mum had it and now I believe my daughter (30yrs old) has got it but our GP doesn’t seem to want to know! I take it your mum has it too as it is passed down the female side, I feel for you both.
I was going to say I would chat with you but someone nearer your age might be more interesting 😏. This is my busy time of the year doing charity work so I won’t be on here so much but take care xx
Hiya, I may only be 28 but I have no problem speaking to those that are wiser in years to me 😉 it’s just nice to know that there is someone there that I can chat with and can understand what I’m talking about. My friends don’t really get it and sometimes I feel like they think I’m making it up.
That’s awesome that you’re doing charity stuff and giving back to people around you, I take my hat off to you (but not too long that the sun attacks me 😝) I wish you the best of luck and would love to chat anytime you fancy it or need to vent 😊 xx
I get annoyed with some people when I say ‘sorry I’m having a lupus flare-up and won’t be able to go or do something’ and they come out with a stupid remark! The sheer exhaustion gets me the most along with my kidneys getting upset sometimes.
A woman said to me one day ‘ yeah I feel a bit tired today, I had a late night’.
Well on top of my Lupus I have polymyalgia rheumatic (PMR), osteoarthritis, rheumatoid arthritis, replacement knee that’s gone wrong, the other needs replacing urgently (nervous of letting them touch it!), anti-absorbstion bile and a bulge in my spine (and that is sooo painful!)..
My daughter tells me to behave as I don’t act my age etc, drive too fast but on the other hand I’m on my best behaviour when dealing with my charity work 😇
Anyway that’s more than enough about me! Tell me about yourself and the same goes for you, if you want to have a rant then go ahead. I’m not ‘pc’ so I say what I think and feel free to speak your mind with me ok! xxx
I totally understand the "I'm tired too/had a late night" response thing! I sometimes forget that I'm feeling tired because it's my sle and I get very frustrated trying to work out why. Just last Thursday I slept all day (from Wednesday night 7:30 right through except a wee wake up call to Friday morning!) I couldn't believe I slept a whole day away- however it's my body reminding me it's not happy and I need to take it easy. It's so frustrating that even after all that sleep by the afternoon I was back to feeling tired again. This is also where I get the " you probably over slept and now your body's reacting to that".
Headaches/migraines are a daily battle for me along with bad joint pain (mainly my ankles and knees) and a painful lower back. I do my best to smile and get on with the day but sometimes it feels like the hardest thing to do. I'm also half deaf (wear a hearing aid in left ear and always have a brightly coloured mould 😍) and one of my specialists had mentioned that he knew of a study linking it with lupus? With this I have really bad tinnitus so essentially I don't know what complete silence is. I often have to put music or a nature sound app on with a timer to fall asleep.
It sounds like you've got a lot on your plate! It's people like you that remind me although I have sle and all it's lovely problems I'm luckier than some other sufferers that have an enormous list of added things too! You're a champion for getting up each day and doing your best with what you've got going on.
I too say as I feel and am very open about my feelings towards topics or whatever discussions are taking place etc.
You can rant any time you like! You sound like a wonderful girl, it makes me so mad when I drive pass the Job Centre and see the drunks and druggies making a nuisance of them selves to put it politely and knowing that they’ve not intention of ever working!
Talking of tiredness, I was so tired the other day that my speech was slurring! I was that tired my mouth wouldn’t work properly, my daughter said have you been drinking jokingly as I don’t drink........doesn’t really agree with me now 😒
I don’t know about being a champion but yes I crawl out of bed each day when my body is ready but everything I do seems to take twice as long and I get annoyed with myself. I was so active up til a few years ago, so knowing what I was able to do and what I can’t now is frustrating to say the least!
You too sound like you’ve a lot to put up with at a young age and I really feel for you. The pain in your ankles and knees sounds like osteoarthritis, but I hope it’s not! Have they checked you out for that?
My specialist back in Aus said it was rheumatoid arthritis, but as I've only be back here for 4 yrs it's been a struggle to get the ball rolling and get my records sent over (my file is more like the JRRTolkien works compared to most people's records as I'm sure you'd know hahaha) so I haven't got any specialists or anything here yet, and my Drs don't really believe me until I get my file sent over. When I've seen them and mentioned it I kinda get brushed off and told oh it's probably just something I've done and give me some naproxen or nothing at all 😞
Today has been a bad brain fog day for me and I've made a few slip ups at work (luckily nothing major) which has been frustrating. All my words came out jumbled or I couldn't think of the words I needed to use.
Well I'm off to bed to try get some extra rest ready for another day tomorrow, hopefully better 🤞
Hope you have a good week and not too many problems pop up. Xx
Hi Elysia I would love to be back in Cornwall hope it will continue to be easier for you not so much sun. I have to be so careful as I get the rash this year we have had more sun than normal. Hope you can enjoy my lovely county.
Hiya, yes I'm loving the cooler weather! I'm definitely enjoying being back here in Cornwall. I left to Aus when I was 6 and every time we came back on family holidays I always felt like this was home. Cornwall definitely called me home and I'm loving every minute of it 😍 Xx
Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
The Devon & Cornwall Lupus Groups have a coffee morning meeting happening on 6th November. To find out more, visit their webpage at lupusuk.org.uk/request-info...
Also, as Kevin has mentioned, if you would like someone to speak to please contact me at chanpreet@lupusuk.org.uk
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