I am in week 4 of a Lupus flare. really broken sleep pattern and severe fatigue. off work ...and they dont really have any understanding of lupus because most of the time there is nothing to see...
All my GP says is listen to your body and rest...rattle from meds as has NASH and Diabetes as well...fed up of feeling as if all I do is moan...
Hey its ok..your not alone. So many people don't even know what lupus is...I think some Gp's don't really know their stuff on lupus either.
Hi,pigsty your right there's lack of understanding..last night at work I broke out with the butterfly rash across my face..no one had the slightest idea what was happening its like ur fighting on your own..dont worry you have this sight stay stron g us lupies are fighters..xxx hugs ..
Hi Pigsty, I'm in my 5th week off work for the same reasons. One GP openly admitted that most of them don't see Lupus patients and know nothing about it and another stared at me blankly! I was sat watching crap telly at 3am yesterday read a book for 2 hours finally fell a sleep and my husbands alarm went off! I did however get a good response from the Rheumy via his secretary and had my meds upped. Hope you feel better soon x
So sorry for you, pigsty. I appear to be in the middle of something similar myself; you have my every sympathy. You may well already be taking something similar, but I have found 3.75mg/night of Zopliclone (a sleeping tablet) to be a godsend. At least I am not going into each day feeling worse than I did the previous one; at that dose I find no next day 'hangover' effect. My GP has prescribed on the basis that 2/3 weeks good sleep can only help me. Really hope your flare improves soon. Best wishes.
So sorry for you.....that's a long flare and it's the uncertainty of when it will end that's horrible. When we get through it we think....oh thank god and tend to underplay it but when it's happening it feels like forever. Do you have a rheumy nurse....can you ask for a steroid injection? I know this often just feels as though we are putting a sticky plaster over something and it's still there but could it help for now. Sending you a hug too and do hope that it eases real soon xx
Hi Pigsty. I am off work myself with fatigue,back pain,migraines,I would normally have ten a month ,since I am off work they have reduced greatly.I have found my employer to have no understanding when it comes to being off sick or hospital appointments,it met with dissapproval,so you are not alone.If they can't see it ,does not exist! I hope you feel better soon. X
Thank you all for your comments. I was very low last night. I had a steriod injection last week which helped the rash and some of the pain. GP doesn't want to give sleeping pills as I need real rest... whatever that means. It does help to know you aren't the only one... its been a better day today and I have achieved a task I wanted to do and rested guilt free this afternoon. Thanks
Hi pigsty,
I agree with everyone else's replies and all I can say is that this flare will not last forever, their is light at the end of the tunnel and I agree that sleeping tablets in the short term would help immensely. Have you had a steroid injection? I've just come out the other end of a 4 week flare and the steroid injection really helped.
I hope you feel better soon and my thoughts are with you. Sarah X
Thanks I have had injection and am beginning to feel better it does help to know others feel like this too as everyone around me seems to think I can just get on with it... thanks for taking the9 time to write..
Hi pigsty,
I'm pleased to hear that you are feeling a little better but remember to take it easy as in my experience flares totally drain you and take a long time to recover from. Look after yourself. X
Don't you just hate flares, i'm on week 2 of a flare at the mo, i am so tired all the time, i ache in places I didn't know i had! If you feel that your GP doesn't understand tell him, you can change GP. Its not easy to understand at all. Ive had bad reflux, headaches, trapped wind etc, im fed up BUT and there s a but i try not to think of how crap i feel but what I am able to do, OK so this isn't always possible but positivity is a must. Anyways we do moan we're women!
take care, chin up (if it doesn't hurt too much).
This is my worse yet as been off work for weeks and don't seem to be getting much stronger...but there is some sunshine today and as long as I am not sitting out in it it makes everything feel better...i have taken to writing down one positive thing I have achieved each day...trying not to get trapped in the negatives..Hope you have a better day today too
My daughter is 12 and has Lupus, she had had terrible trouble sleeping since before Christmas, her Rheumy prescribed Melatonin as she is too young for sleeping tablets. Also advised severe reduction in use of screens, ipod, tablet etc and these combined seem to have worked. She has been to school 3 days out of 5 this last week which is great for her and she has much more energy now she is able to sleep better.
thanks these are useful points especially the reduction in use of screens as that is something I resort to when I cant sleep...and could be making things worse...will try resorting to old tech and take a book to bed....Hope your daughter has a restful 1//2 term
I think if you can get a nights sleep you can cope with most things, if you don't then everything is so much worse and it drags you down. Good luck to you, hope you manage to get a good nights rest soon!
I was diagnosed with Lupus when I was 9 years of age and it was hard not being able to do the same as all my friends. Its a balancing act fitting all i wanted to do, if I was able. my mum was always concerned about getting enough sleep and rest and we set a bed time and a chill out time to relax, music maybe reading.
Hi kazp, 9 years old is so young, Josie was only diagnosed last year when she was 11 and they said that was very young! How did you cope with school? Feel like I want to pick your brains for every useful tip you've learnt! How old are you now?
I am now 40 with a 9 year old son, happily married and enjoying life (as much as I can). I happy to have my 'brains picked' what would you like to know?
Thank You 
How much did Lupus affect your attendance at school? What adjustments were made for you at the time? How did it affect your exams? How often do you have flares and what is involved for you when that happens? I know that everyone is individual with this condition and we won't really know for a long time how Josie is affected longer term. An inspiration that you have had a 'normal' life with marriage and a child, I don't often tell Josie of the comments I read on here so it's great to hear something positive!
Too tired for exercise?
Lupus is so underestimated by so many people.
Exhausted tired and weepy
Soooooo tired
