Some of you are absalute stars for keeping going with such a difficult illness to manage! I used to drive to work and not be well enough or have the strength to remain on my feet and my vision was...
Think what i was trying to say is that when you can no longer work it's kind of decided for you and you have no choice! I live on dissability now but i wish i did'nt have to!...
Having worked as a florist for many years a job i loved and had my own shop for many years i began to struggle to the point of giving it up for a less physical job which was 9 -5 in a hospital lab! I...
Thought one of these might be just the thing to help me get back into doing some exercise when i cant get out and give me the strenghth to work up to doing other excercise in time,i heard they can...
Well Lynwood you did'nt suffer side effects and a friend of my mums took them without suffering any that she can remember so i'm going to start them next week. Think i just got really depressed...
Thankyou so much Lynwood,it's a while since i've been on here,i must have been happy and doing well just busy getting on with life but i've been suffering with back pain and hip pain and a few years...
Been prescribed 70mg alendronic acid after signs of osteophrosis! Side affects look scarey /community/emoticons/sad.gif really worried! wish there was something i could do to avoid taking them,unsure...
Hi Lynwood,yes i was tested when first diagnosed with the dry eye test!!! I was ok however i do have a dry mouth an get ulcers in my nose and mouth and dryness where a girl should'nt be if you get me...
Went to my gp today since i have a couple of little pollips in my mouth and one is in a really awkward place and catches on my teeth,gets in the way of eating and has an ulcer on it now. Anyway he...
So grateful for all your advice and so sorry not to reply to you all individually,so many sugestions i must have a good read,make a list and give some a try! It's true my feet are made worse when...
Thanks for the advice Redrose,do'nt know where i'd find that but i'll look into it! I must admit i find my feet dont moisturise easilly either!!...
Hi there and welcome! It all sounds very familliar to a lot of us i'm sure,thing is though Lupus is a very fluctuating and complex condition which can mimic so many other deseases so it can take some...
Hi Okie and thanks for that,i'll look out for some spa socks i'll try anything,i'm lucky really cos my skin rashes elsewhere on my body seem to be kept under control since i took mepacrine but...
Thought i'd say hi and sorry you're not feeling well! Trouble with lupus is as you will have gathered if you've been reading up!There's a multitude of different symptoms and they can mimic so many...
I've tried everything i can think of to relieve my sore cracked feet now which started 9yrs ago with my firsat symptoms of lupus,thought it was athlets foot at first so bought everything going but...
Hi,i have'nt been on the site for a while but could'nt sleep and i can relate to all your symptoms. I've had SLE and APS now for about ten yrs and you never get used to it! There are lots of people...
Hi Nisalady,i've never had any blood clots or miscariges either but Dr hughes was certain i have APS,i was a real mess before i saw him and will be forever grateful! Hope you get things under control...
Hi there,i took methatrexate in tablet form daily with meloxicam when i initially had symptoms of joint pain,at the time i could not stand it was so severe my eyes streamed with the pain and i had to...
Hi Nisalady,all the neurlogical symptoms you decribe i suffer with from time to time and I saw Dr Hughes(Hughes syndrome) who told me i had APS even though my test was negative he was positive i had...
I have big problems with photosensitivity to the point that until i was advised to take mepacrine i could not bare to part the curtains because of the brightness,i wore sunglasses in the house and at...
It's an amazing relief when you finally find good consultant who listens and helps you towards your goals! I battled for years with my symptoms falling on deaf ears with a string of consultants and...
I felt so sad reading about how you're feeling i just wanted to give you a hug!! Maybe it's time for a heart to heart with your daughter and i really do hope you can reach a better understanding...
Oh nona43,i feel so sorry you feel the way you do,you say you live with your daughter so i asume it's her home you live in rather than the other way around! Either way they dont sound very...
Hi Bumble bee, thanks for the reply! Yes mepacrine deffinately helps the skin i used to get terrible crusty itchy patches before taking it and sometimes a really large ulcerated rash on my leg about...
Thanks Pat,there's a couple of bits of really useful information ther i was'nt aware of...i'm finding it such hard work though! I'm trying a colon clenze powder and a white meat,fish,veg,salad,a...
Actually i considered been sterilised but thought i'd give this coil a go 1st! It's a tricky one! Thanks for your help x...
I've put a stone on in the last couple of months since my pred dose increased due to a flare,trying to get the weight off but though i'm quite good at eating healthy it's not coming off...getting a...
Just thought i'd say hi! I new to this site too! Seems like a really good site. Hope you find it helpfull!...
I can identify completely with your symptoms though you have a lot more on your plate with childern to care for! I was so bad once i could'nt drive for 6months and i was'nt fit to go anywhere either...
Thanks Redrose,i appreciate your response! Gosh your experience of the coil sounds out of the ordinary i can't imagine that...part of me knows i was fine until i had the maraina coil fitted and my...
I have never been able to take the pill,it gave me severe migraine,double vision stiffness and did nothing for my sex life either! I never got pregnant when the time and age were right prob cos...
Anyone out there take mepacrine? Are you very sensitive to the sun,suffer migraine and have flares brought on by exposure to flourecent light? Would be interested to hear!...
Hi Makayla,all sounds very familiar! The weather's a tricky one! We have to be very carefull with the sun to prevent flares...it took me a while to accept that some of my symptoms were related to sun...
Thanks Weleetka, i'm fortunate that my lupus is mild i dont have any organ damage i was so relieved when my MRI and EEG were all fine. So many lupus sufferers are not quite so fortunate!Some mornings...
No doubt about it,we deffinately feel so much better once we get a diagnosis and though it's not a nice thing "Lupus"you can start to read all about it and to a degree help yourself an see the signs...
Sorry to hear you're hving such a bad time! I just had three months of blurry vision,vertigo like symptoms with brain fog etc etc and i can sympathise with you! take care!...
Nice to get my first reply bird lady! I admire you for keeping going! I worked as a florist for 18yrs mopst of which was self employed flogging myself for not a lot of money but the love of my work i...
9yrs,i'm 47yrs and was forced to give up a career i loved years ago and though i tried to work part time in other areas of work i was forced to give up unfortunately! I did go to college but i was...
I'm new on here! I have SLE and APS took 4yrs to diagnosis........Giving up work was extremely hard for me and i went into a deep depression when i finally accepted i could not work but i did'nt stop...