today im feeling really low i ache and am in pain places i didnt know possible im a new lupus sle sufferer only diagnosed 1st sep athough i have had it about 18 months before i was diagnosed i was on arthritis tablets and lots of pain killers but since i been on lupus meds my body doesnt seem to like them ... in the last couple of months i have had a mild heart attack and been in hospital with pnumonia and a rub? i just feel since i was diagnosed my life has gone from bad to worse im only 37 i feel 137 please can someone tell me this does get easier as im finding it really hard at the moment
im sorry for being miserable but its how i feel please can someone tell me it gets easier xx
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helen3d
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Hi Helen3d, i'm sorry you've had such a hard time. I am 39 and was diagnosed at 36 after eventually breaking down and begging the doc to take my complaints seriously. As soon as the hospital got involved I stopped feeling as tho I was crazy. I cant say that you will suddenly feel so much better but if you take 1 day at a time and not expect too much too soon you might be able to lift your spirits a little. Ask your consultant to try different meds until you find 1 that suits. I've been on 3 with various side effects but find hydroxochloriquine has the least effects with omeprazole for stomach acid.
When you are really low try to remind yourself that this is an episode and you will feel better and be determined that you have Lupus but it wont have you. Depression is a big factor in Lupus so you may need an anti-depressant to help you cope.
HI Helen, I was saddened to read your message, you have been through so much in the last couple of months and at such a young age, but please don't despair.
I've had Lupus now for about 10yrs and I can't say things get easier, But you do learn to adapt, it changes your life in many ways,and with these changes come high's and lows. Your medication may need looking at again, it took almost three years before they found the right combination for me, and it does help now.
You will have times when you feel depressed and alone but with the support of family, friends, nurses to talk to etc you can get over these days.This site is a great help as well, I wish I had found it sooner.There are more people out there than I imagined with Lupus, so your not alone.Were here for you.
Try to add to your life by doing something you have always wanted to but never had the time. Take me, for years I have always loved banjo music(when you've stopped laughing I shall continue Lol ),but have never played an instrument in my life and never had time. But 12 months ago I was at a very low ebb and thought what else can I do besides sit here alone and wallow in self pity, I know I'll learn how to play the banjo, and that's what I am doing, There are no teachers round here so I learning via the internet (what a wonder technology is). Hey I'm not doing too bad at it either, even though it's a very difficult instrument to learn.When I get really down some days I pick up my banjo and play, albeit slowly, Lol But it does take my mind away from the illness for a while and that's a great feeling.
I'm not saying pick up a banjo and learn to play,But try and add to your life ,don't let this illness Lupus beat you down, take each day as it comes and face it head on, Say to yourself I'm going to tame this illness and win.
It will be a challenge, but I know you can do it, We all can,
I wish you the very best and hope things start to look up for you. God bless all us Lupies xxx Kind Regards Trish
thankyou so much for your comment im sure i will eventually get used this illness hey apparantly stress doesnt help im getting married in 3 weeks i just hope i feel better before that x good luck with your banjo playing its definatly something to think about but maybe not banjo lol x
Hi Helen,sorry to hear you have joined the Lupus club on top of everthing else.I am having a bad time at the moment but,I know it will pass I find if I can keep myself busy it helps but,as you know that is not always easy.Like you,there will be times when you feel angry and very depressed.I hope you have a good GP who should be able to explain your meds to you.I wish you better.
I'm 28 and was 26 when i was diagnosed, in the last two years i too have been in and out of hospital. If i pull a muscle they immeadiatly think its a blood clot and rush me to A&E. I completely agree with the other users who have posted, once you come to terms with him being with you things do get slightly easier. You know your boundries. You start to learn what will bring on the extream pain in the joints. I've learnt to adapt. I was rushed in with pluerisy and pnumonia and spent 2 weeks in hospital in may this year. I didn't think my life was worth living. I thought i was gonna have to give up my job and home, and move back home with my parents, putting my animals up for adoption. The depression is the worse thing about it. Because at the time you cant see past the bad things. I see your getting married very soon, and this can be a stressful situtation. Please take the time to have plenty of breaks, and dont let it wind you up. In my case whenever i get stressed it brings the old boy to the surface and i start to feel pants. But be assured, if you can control your stress levels, you can keep the pain to a minimum. I do hope you feel better. I'm currently on mycophenlolate and hydroxycholoquine and steroid pills. I also take ibruprofen and paracetamol for pain. They gave me tramadole, but it made my stomach bad, and didn't help the pain at all. Good luck for your wedding. H!
hi thanks for your comment it makes so much sense i had tramadol for a while to but was getting strange traces and hallucinations so came off it i didnt like it atall. feeling a bit brighter today so hopefully it will last x
Take advice from those who have posted,it took me about 1year just to get my head around it.I did not take up the Bango,i started to make greeting cards
I do them at my oun pace and have quite a few clients .so perhaps janeways and my self getogetter and do a Gig I could woble some card stock!!!!
Xfactor here we come.
You will learn to pace yourself and control your pain i have had 20+ years
thanks yes i think i may have to get back into cross stitch when my hands are ok as im really thinking i need something to take my mind off it as it doesnt look like ill be going back to work any time soon x
Hi Helen, sorry to hear you've been diagnosed, but it does help when you've got a reason for feeling the way you do. I was diagnosed 10 years ago, took a while to get my meds right, now on steriods, hydroxychloroquine and lanzoprazole, I take diclofenic for serious pain. You do get round it, just takes a while. Focus on the positive, take time for yourself, learn to say no, and when you get a good day, make sure you enjoy it, but dont overdo things. Good luck with your wedding, hope you have a wonderful day. We all know how you feel, you're not on your own. xx
Lupus is a very lonely illness unfortunately. You don't always look ill so people don't realise how poorly you really are. I was diagnosed 4 years ago and still havn't really come to terms with it. Having said that, I have learnt how certain days are worse than others. Take each day at a time, as no two days are the same. I'm sure once you have had your beautiful wedding some of your stress will disappear. Just do what you know your body can manage, and what can't be done today will still be there tomorrow! Take care x
thankyou for your comment that is exactly it you do feel so alone and when you try to tell people you have lupus the blank look you get says it all really people just dont have a clue what it is which i think makes it harder having to explain when to be honest i dont really understand it myself x
I hope you feel brighter soon. Lupus can take over your life if you let it. Concentrate on the good days and I'm sure they will outweigh the bad ones when you finally get used to what's happening to you. Try to be strong. We're all here for you. xx
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But be assured, if you can control your stress levels, you can keep the pain to a minimum. I do hope you feel better. I'm currently on mycophenlolate and hydroxycholoquine and steroid pills. I also take ibruprofen and paracetamol for pain. They gave me tramadole, but it made my stomach bad, and didn't help the pain at all. Good luck for your wedding. H!
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