i have recently been diagnosed with Lupus after a few years of medical tests its great to finally know whats up! ive read information, watched a DVD and feel more positive and ready to fight this illness...my main problems at the minute are joint pains, just actually walking in the mornings getting myself going!! fatigue, this is a huge one i have no energy, come the afternoon and im ready for a nap. ive gone from being energetic, competitive (i work in a sales environment) raring to go to basically feeling that i reallyt cannot be bothered with anything. My partner, family have been awesome but dont know what its like to them im being lazy, or im not sleeping enough. everyone keeps saying you look great, you look well but on the inside im screaming help, im struggling. this is a stupid question....but i need to know that people can still have a normal life, go out have fun, is that possible?!?!!?
Fatigue....: i have recently been diagnosed with... - LUPUS UK
Fatigue....
hi lindsay81
i too have recently been diagnosed with sle lupus and it was i agree with you a relief to finally put a name to the symptoms,however that doesnt mean it makes living with lupus any easier,its not... as its really testing at times and can leave you feeling so lonely and isolated with lots of mixed feelings ups and downs.
the fatigue is very very difficult to learn to live with but medication (the right one) really can help.
i believe that walking and some exercise really helps with joint pain which i do everyday walking my dog but it is frustrating as some days are better than others.
my family and friends can struggle to understand what i feel like everyday, but what i have found which helps is wearing the lupus wrist band, when they see me it reminds them i have lupus and opens the door for them or anyone else who wishes to ask me about it.
staying positive is a good attitide to have and i wish you well !
take care
debs xx
Hi Debs
I can relate to your experience. My partner has not been very understanding because he struggles with the frequency of symptoms and how I can be okay one minute then wiped out the next. Our marriage and relationship generally has really suffered. I must say that, my family has been extremely loving through this difficult time.
Please can you let me know where I could get a wrist band from = might serve as a reminder to my hubbie. xx
hi fuzzyrudd
Glad to see that my comment on wearing a wrist band is helpful for some, you can order it on this website lupus uk and go to there shop its only a £1 i ordered a few for my family and friends aswell and my daughter hasn t taken it off (bless her).
debs xx
Thankyou so much....its deffo alot to take on board so much info to learn about its crazy, i truly believe that staying positive altho sometimes very hard will help me get through this.
i also have a little dog so walking with her, and app swimming is good aswell but also learning when to stop and relax and take a breather
i see what you are saying about the wristband thats definately a good idea 
thanks for ur kind words x
hi lindsay
i have to agree with debs, i have had lupus and rhematiod arthristis for 24 years now, you do have good days and bad days. and family and friends, do struggle with as well, because they can not see any thing wrong. but being positive helps and trying to stay stress,which can be difficult, but your not alone,in this
take care
angie xx
Thankyou Angie again for kind words...i have just ordered a wrist band, also given lots of info onto my family and work to read to make them away
it is deffo out of sight out of mind, so a visual aid may well just get people asking about, and like you said cos people cant see anything doesnt mean we arent suffering
Lindsay x
I know exactly how you feel. I'm 52 years old and I've had Lupus for 36 years. It is a very tough disease to deal with but you can have a normal life. I also suffer from extreme fatigue. One thing that I have started doing is drinking coffee when I get up and it does give me some energy to where I can get a few chores done. I have also found that when you have a good day, get out and do something fun, because it is very hard to deal with this illness. Hang in there and keep your chin up. Take care of yourself and God bless.
Lupus is very isolated ,and its hard to make people understand,let alone ourself s.
But there is life and we must do the best we can to live it but learning to do that is hard so take one day as it comes and try to rule Lupus not Lupus rule you.
And remember we are here for you XX
I have SLE and kidney disease (currently on dialysis), but I make a point of not letting this illness rule or restrict my life. I'm off abroad next month with dialysis machine in tow and planning to go further a field next year (The Far East). If I told myself I'm not going anywhere till I have a transplant then life would be very limited and boring.
Don't get me wrong I have my struggles as we all do but hobbies and thinking of ways to use your spare time productively helps.
Hi there Charm.....never again will I complain about the hassle at airports! My husband has a ventilator, and I sometimes have two walking sticks.... usually airport staff are very helpful though, as perhaps you have found(?) You must have a very adventurous spirit, and we applaud you. My problem is that we have to co-ordinate our travelling to commence in the afternoons, as it often happens that I'm in "zombie" state, before the meds "kick in" in the mornings....
It is worth the effort - sunshine, sea, and the Mediterranean diet seem to ease the symptoms of SLE.
Interested to hear about your hobbies........
My husband wears a wristbamd but I am still a bit self conscious about drawing attention to myself. I agree with Pinky56 about getting out, I get out with my dog and the exercise and change of scene does me good. I also tend close in on myself and do not talk to anyone when I feel bad which is the worst thing to do. Seeing people and sharing things (like this wonderful site) is really the best idea and I have to keep reminding myself of this. As for the fatigue, I'm still working on that one. However, whenever I pick up, like today for example I tend to throw myself into it and have been criticised for overdoing things. I do think of it as a window in which to do things but am learning to prioritise what really matters and trying only to do that. Best wishes, take care. J.
hello lindsay
Im so pleased you have ordered the wrist band i can promise you it really has been helpful for me and you have contributed to the charity win win i think.
debs
xx
thankyou for the encouraging messages, its nice to talk to people who actually know what im going through x
Hello Lindsay
I'm another of those who have had lupus for years and have had to gradually accept that there can be limitations. But there are for lots of things that limit people.
We are stuck with it and despite the various medications that can help, there is still no cure. So, make the most of every good moment. Enjoy good times with family and friends so that you have good memories during bad times. If fatigue really knocks you out, try something like meditation so that something good can come from it. It can be difficult to plan ahead, so be spontaneous.
For years I had the facial rash that can come with lupus, so people thought I looked rosy cheeked and healthy. Used to get me down at times, but I could also feel better just because of how I looked.
I'm going through a good spell at the moment so am getting out walking a bit more. Long sleeves, high necks, sunglasses, hat and factor 30. (remember to watch your ears!) It makes such a difference when you do feel better. Sometimes, during a bad spell, it seems that it will never alter, but a change in medication can work, some of the stress eases or you just feel better.
People on the Forum can be really helpul, even if it is just to say they are thinking of you and you are not alone in this.
God Bless
Margaret
thankyou margaret for those kind words, its nice to know people feel the same x
Lindsay,Chin up you can get through it.I reckon with all the advice given above.Living with this condition is hard and really challenging
Connie waahhoooo,you have really encouraged me.
All the best Lin
Caroline
Lindsay, I quite agree with you because most of the time you look well and normal and its difficult for them to understand.When its all too much for you take a breather then he will understand but if you keep on going .........you tick the box.It does take time for our family and friends to keep up with us.
Good luck
Caroline
When I was ill everyone said how well I looked, because I had a red rash on my chest and face, it just looked as if I had caught the sun. My main problem was fatigue, and although I am in remission, the fatigue is not as bad but it never goes away, you just have to learn to pace yourself. Give your family information to read, thats what I did, they seemed to understand it more. Things will get better, take care Jo
Hello Lindsay81 - I've only just returned online after a "bargain break" in the Algarve..... two years ago, I would never have thought this possible, as I could barely walk, my joints were so swollen and felt sooo fatigued!
As other folks have mentioned - a change of meds (or a combination) can help. Initially, for about 6 months, I was taking Methotextrate (which works well for some people) but this caused a very painful cellulitis in my lower legs and severe headaches - so Consultant changed to Plaquinel and Naproxen (an anti-inflammatory drug). Tramadol helps when the pain is acute, and I've found that if I take two of these at night, before going to sleep - it helps to relax the muscles and there is less discomfort on waking.
It is clear that lots of medics are not "clued up" about SLE - so we have to somehow learn to manage ourselves as best we can (this Blog Site has been a GREAT help to many Lupies!) Perhaps you could persuade your "other half" to have a read too - so he knows that the symptoms are real.
You will have "zombie" days, and better days - so make the most of those.....hopefully you will find your own way of coming to terms with the limitations.... and discover your inner strength. Stay positive..... Lin
Disappointed and hopeless
ouch my knee and thumb...
Problems
