I would like to say a big hi to every one on this forum.
I have been diagnoised with Lupus and Rheumatism. I found this jouney frustrating because there is little information about Lupus out there. I went to a doctor because I become exhausted. I walked to beach one day which is not far from my house, went for a dip and went back home. I felt so physically exhausted that I fell to sleep on my bed in my beach gear. I seen a hemotologist and he found out I was anemic and said that is why I am tired. Did more blood test and came back with my diagnoises. Hemotologist said to me that if I have any symptoms to see my GP. The only symptom I had according to my doctors is a skin rash. I went to my GP who told me more info and is sending me to a rheumatologist. The GP even said that my tiredness is from my low iron levels. I beg to differ, i've been anemic before and it is a diffrent kind of tired. I feel sick when i am tired with low iron levels.
Is being exhausted part of a Lupus symptom. I feel like I am going more crazy.
I am a bit down to because I don't know what to expect. Any help will be great.
I can understand your frustration. I know for myself, there are so often things I want to do, but the fatigue gets the best of me and I can't do them, at least not right then.
I too am anemic and I have lupus. I have found that when my iron level is very low, (shame on me for not taking my iron pills) that I become VERY tired for a couple of weeks, until the level returns to normal. They may be right, it may just be the iron...that's a good thing because it's a quick fix.
People with lupus often have low iron levels. But to answer your question, Yes lupus can cause extreme fatigue. You just want to sleep all day (and I often have during a flare). That being said, before they fill you full of pills for lupus, load up on iron for a few weeks and see if you don't feel better. THEN let them treat you for lupus if it's active. However, I would caution you not to let them pump you full of prednisone unless there is NO alternative. Anyone who has been on prednisone for any period of time will tell you that the side effects are horrible and for me, much worse than my lupus flare symptoms. I only took the therapy because it was that or die. There are a lot of other meds that can help with lupus that are much safer and have fewer side effects. Start with the iron and give it time to help you.
I hope you feel better soon and can enjoy the beach. I envy you. I love the beach. :-)
Hi and sorry to hear of your diagnosis. Exhaustion is a part of Lupus, it's something that you can't explain to those out there who have not experienced it. I was diagnosed over 10 years ago and have a bunch of things going on with me. When you are tired you need to rest overdoing it can also cause you to have a "flare" I'm sure there are others on here who can also help you out. Hang in there. I remember when I would tell my friends I was too tired after work to go out and they didn't understand. You are not crazy. Hang in there
Hi! I also went on a seaside holiday before my first big flare. I got home and woke up with it the next day and have had chronic fatigue ever since. It goes up and down in intensity but for me it's a constant companion. I remember how comfusing it can be in the initial period of being sick - there's so many things to try and take in - all while your body is doing crazy and sometimes painful things. Lupus is a bit of a scary illness but it's good to remember it's different for everyone. Having said that, this site has been great for me, in finding answers to some of my questions. I found my doctors didn't share enough information with me at the beginning, and when they did, they contradicted other doctors. I'm still not sure which medication has the least amount of side affects. I am on plaquenil and 5 mg of prediscelone (excuse my spelling) plus meds for my stomach and penecillin. I was offered steroids (but I was on them for a long time for something else and I hated being on them) but I'd like to find a new medication that didn't have too many side efforts. But I'd advise asking lots of questions about your meds before you go on them.
I'm a vegetarian and I've been anemic for many years, but recently I had an iron transfusion and that helped my levels a bit. But when they are low I am much tireder than usual, plus a bit more emotional and nervy. And when you're that fatigued from Lupus any lessening of it is noticeable. Hope that makes sense? So working on the iron is definitely a great first step.
Good luck with the rheumy and I hope you start feeling a little better soon!
Hi there Shamwow, Its really great to meet you and welcome to LWL. I am so sorry to hear how you are feeling. The good thing is that you have come to the right place for information and understanding. In answer to your question, yes tiredness is a huge factor in someone who has Lupus. There are many other contributing factors as well. Have you any other health issues that concern you at all? Having a low blood count will make you feel really ill. Have you been given some iron tablets? What have they said about Lupus to you? Its good that your GP is sending you to see a Rheumatologist. How long have you been feeling so bad. A lot of people go unnoticed and undiagnosed. So at least your doctor is taking this seriously which is good to hear. I can really understand your frustration. The tiredness is so hard to explain sometimes isnt it? I remember years ago not even being able to keep my eyes open when i went round to friends and family, not knowing why though. I think one of the worst things is the not knowing. We know our own bodies and how we are feeling. Do you take power naps as they call them. You need to pace yourself whenever you can. Swimming is tiring, but not that tiring i shouldnt imagine, not to the point of not getting changed from your beachwear, that isnt right is it? I would be feeling the same way as you are right now. Dont worry if you have to have steroids, most people do at the beginning of their treatment of Lupus or any other auto-immune disease. The thing is with steroids they can be very helpful if used in the short term. As long as steroids are used correctly there normally isnt any problems. Its when steroids are given and just keep being upped as the doctor isnt that great and cant think of anything else which would help. Yet there are loads of other medicines, and alternatives for symptoms. It is best to avoid steroids wherever possible, but usually in the first stages of treatment it isnt possible sadly. There are lots of non-steroid drugs out there that can be used after the initial stages of treatment. If you are concerned and they do try and put you on steroids then have a chat with the Rheumy or doctor who wants to prescribe them, as they can help explain whats what to you.
Anyway i will be thinking of you,take care, look after yourself, bye for now, love and hugs Astrid40xoxo
What can I say that no-one else has said...probably not a whole lot, except one thing for ME is that I run a fever when I'm in a flare...kind of a low grade, but if I'm really sick it can go up a bit.....and these are red flags for me. The fatigue is overwhelming...to me. I have flare ups where I can't get out of bed.....and like you experienced I can't even get up the strength to change clothes! I hope and pray for your sake they find some answers that are easily fixed, but if it does turn out that it's a positive for Lupus, as others have said, plz plz pace yourself.....your body is trying to tell you something. If you're fatigued, REST. I hope only good things will happen, and if it's Lupus, use the coping skills people here have given you. This is somewhat new for me too, and I like coming here to get info.....it helps
Hi Shamwow, my name is Beverly L., yes Lupus has so many faces !!! somedays are
Very different from others ! just try not to over due it , find time to relaxe in between doing things… and also the sun causes the skin rash to flare -so cover yourself while you are out in the sun… remember to get some rest !!! it may come down to you not able to do somethings that you use to do or want to do -but hang in there and don’t get upset- it’s okay… I find not stressing with people and really putting a lot of things on my schedule really helps me . and making decision that don’t have to made at that moment - I wait on them til another time (if am not feeling it) !!! well I hope that you enjoy this site - it really has helped me since Feb. 2011 .And also WELCOME to the family of Living with Lupus…Beverly L.
Thank you for all your replies, it has really helped me. I feel like crying at this moment because my fatigue is valid. I noticed something was diffrent at the start of this year. I was extremly tired and getting light headed. I went to the doctors in February and my levels were off the chart but they didn't know what I had. I went to the hemotologist and I've been taking iron supplements for 2 half months now. I must say at the moment my energy levels have picked up but I don't know if that is from the iron tablets or what changes I have been making. Maybe a bit of both. I am a Room Leader at a long day care centre, I teach children who are 2- 3 years and at the start of the year I come home exhausted from it all and stressed. My company has been putting pressure on us and I thought I had anxiety. The compant has been making it hard for me to see my doctors because they keep saying they can't replace me at this time. I feel like I am holding up my whole room. I don't have the best assistant working under me and that makes it harder when I do most of the work. To top it off I am doing a Bachelor of education and i failed an assignment (which is not like me) cause I didn't put as much effort into it because I was tired. My professor won't give me an extension for my 2nd assignment. I am going on a much needed holiday for 3 weeks. Before I founf out about all this I thought I need a break that is why I am so tired so I booked a holiday. My 2nd assignement is due when i get back from holiday so therefore I have to hand it in 3 weeks early and hurry and do my assignment. Thank goodness for the long easter break and that I am feeling okay. I am studying only during the day because I find it too difficult at night. My house work at the moment I do it in segments and I am feeling all right.
I am so glad others had a feeling of fatigue and I didn't relise that we could be photosensative as well. I've been reading that we can get brain fog and I am feeling like that at the moment. Sometimes I can't remember words that I want to say or write. I've now been keeping a diary about my health.
Thank you for all your advice. Take care and I am looking forward to knowing you all.
Hi there Shamwow, You are welcome. I am just so sorry to hear you are having such a hard time of it right now. You have been working hard. Its all too easy to put these things down to stress and especially as far as doctors are concerned. I know before i was diagnosed i was seeing this doctor who always used to say whatever i got was down to stress, even if it was something that couldnt possibly be down to stress. I moved house and got a new doctor and that was how i ended up with my diagnosis. I am relieved i did now, otherwise goodness knows where i would be now with it all. Its good you have been taking the supplements. Have you been eating properly as well? As it does make a difference, even if you only eat little and often. I know i never feel like a full plate of food anymmore, and its worse when i am in a bad flare. So i have to really push myself to eat. Because i have had Lupus now for about 12 years i think it is, i have noticed patterns and when i havent eaten well i know i get alot worse. So even if i have to push myself i try and eat something healthy. Its all too easy to forget to eat when we arent well. Plus you have been studying and that will of taken it out of you abit, especially as you havent been feeling well anyway. It sounds a cliche but it is very important that you get the right nutrition. What a shame that your proffessor wont give you an extension. Yes, its good that you have a break for Easter, make the most of it and give yourself a break. Look after yourself, and be good to yourself. Us women tend to push ourselves far too much. If we arent good to ourselves then who will be. You mentioned the brain fog, that could be the Lupus as well. I have a thing called Antiphospholipid Syndrome, which affects the memory at times, but even just being completely over tired and exhausted will have an affect on your memory. And of course it makes you emotional as well. Do something nice for yourself, even if its laying in bed a little longer with a book you would like to read, nothing to do with studying, or soak your feet in some nice oils, or whatever you fancy doing. Nothing to energetic though, eh? hehe. I am thinking of you, take care, look after yourself, love and hugs Astrid40xoxo
Shelia, I am trying to grab as much information I can. The American society of Lupus was very informative. Before I think I was a little confused because my doctors were saying oh no your tirdness isn't from Lupus. I kept reading that was a sign that why I got on here to ask.
Astrid 40, I am trying to look after my nutrition, like you I find that i don't want to eat as much. I got really concerned when I lost 3kg in a matter of a week. (I am a thin girl and it takes ages for me to gain weight) I started to take more notice of what I eat. It is easier when I am at home to take notice but at work I am on the go non stop.
AnnA, thanks for the comment about the screen name. Shamwow is a kind of cleaning product here in Oz, however, my friends started calling me that as a nickname because of my first name. It makes me laugh when I hear it, it sounds so positive and that is how I want to be. I am so glad to hear that you can live a long life and every journey is different. I think I remember reading that you have grand children and that you are greatful that they are in your life. With uni I have to contact them as I am sure there is because when I got admitted they ask if you have a disability. I just have to change my admission form I think and go from there. The professor couldn't really give me an extension because I didn't know what I had at that stage except I was getting it sorted. Thanks for all the support, I need it expecially because it is a silent disease.
I'm glaf you've studied a bit. If you can be classsed as having a disability, I wonder if your country hs laws like Canada and USA that say that your employer legally must make reasonable accommodations for your illness. In your case being able to get to the Dr. and other needs may come up as time goes on.
We have Shamwow here in Canada too, Australian salesguy on TV.
I have had this for 30+ years, my Mom has had it for 50+ years.
I want to share with you a short story that almost everty lupie knows. It's called "The Spoon Theory". People who like the story call themselves Spoonies, and often put a little spoon on profile photos at Facebook and Twitter. The site that it's on is called www.ButYouDontLookSick.com. Great name, right? Here's the link to the story www.tinyurl.com/Spoontheory1.com . Then you can browse all the great informatuion of lupus patients, and more recently, Fibro and other chronic ilnesses.
I know just how you feel. I found out about my sickness in 1999 then they really didnt have much on it . Then I found out that I have a great aunt that has lupus so my sickness was inherited by her. so I got to find out alot of my info from her. Fatigue is one big symtom that I go though and sometimes I hate it exspecially when Im on vacation and I have to go back to the room to take a nap, why should I have to when Im on vacation. but as I tell alot of people take it one day at a time dont think about what your doing tomorrow think about what your doing now... best wishes...
Hey Shamwow, and welcome, you are among friends. Exhaustion is a big part of lupus, my first symptom was a deep bone fatigue that would not go away. My primary ran test after test, and found nothing wrong. Get more rest, you're getting older. At time i was in my early 30s. Rest did no good and so i learned to live with or work around my fatigue.
Then one summer day i went to the beach, broke out in a rash, went home and slept for 10-12 hours. I wasn't crazy, i knew something was wrong with me, i knew my body, I was a very phyiscal active person. I thought i was going crazy, if i had not develope pneiumon and gotten admitted in the hospital, i might have not been here today, because lupus was affecting my kidneys. When my rheumy, just got bless with a great doctor, told me "i'm going to find out what's wrong with you and get you back to your life" He said, you have lupus, great i have a name for it, then i thought, "what the hell is LUPUS?" A good place to get information is the lupus foundation of american and there is this one great book that help me understand it from a personal pt of view because the author that wrote the book was living with lupus, Lupus the first year. There's so much more information out there today than it was ten years ago. Lupus will be a part of your life but its not who you are. You are stonger than you think and you a survior, a lupus warrior. You will be in my prayers and we be here for each other, peace and blessings, Asia64
Hi there Shamwow, LOL LOL LOL, am laughing with you !!! it's funny how things hit us all at once !!! My brain fog comes often - but i find the laughter in it , along with me kids that think it's very funny !!! smile Thank GOD for this site ti stay sane.... Beverly L. ( hang in there it's okay!!!!!! )
Shamwow said:
Hi All,
Thank you for all your replies, it has really helped me. I feel like crying at this moment because my fatigue is valid. I noticed something was diffrent at the start of this year. I was extremly tired and getting light headed. I went to the doctors in February and my levels were off the chart but they didn't know what I had. I went to the hemotologist and I've been taking iron supplements for 2 half months now. I must say at the moment my energy levels have picked up but I don't know if that is from the iron tablets or what changes I have been making. Maybe a bit of both. I am a Room Leader at a long day care centre, I teach children who are 2- 3 years and at the start of the year I come home exhausted from it all and stressed. My company has been putting pressure on us and I thought I had anxiety. The compant has been making it hard for me to see my doctors because they keep saying they can't replace me at this time. I feel like I am holding up my whole room. I don't have the best assistant working under me and that makes it harder when I do most of the work. To top it off I am doing a Bachelor of education and i failed an assignment (which is not like me) cause I didn't put as much effort into it because I was tired. My professor won't give me an extension for my 2nd assignment. I am going on a much needed holiday for 3 weeks. Before I founf out about all this I thought I need a break that is why I am so tired so I booked a holiday. My 2nd assignement is due when i get back from holiday so therefore I have to hand it in 3 weeks early and hurry and do my assignment. Thank goodness for the long easter break and that I am feeling okay. I am studying only during the day because I find it too difficult at night. My house work at the moment I do it in segments and I am feeling all right.
I am so glad others had a feeling of fatigue and I didn't relise that we could be photosensative as well. I've been reading that we can get brain fog and I am feeling like that at the moment. Sometimes I can't remember words that I want to say or write. I've now been keeping a diary about my health.
Thank you for all your advice. Take care and I am looking forward to knowing you all.
Thanks guys. Your advice has really helped me. Yesterday was the first day I felt okay, I was having a good day and I think today is going to be another one.
Welcome Shamwow to our LWL family and the rollercoster ride that Lupus will give you. Yes being exhausted is very much a part of having Lupus, along with memory problems( also called brain fog), pain, and other things. But as long as you get the rest you need when you feel this way you will be ok. Take as long of a rest as needed, sometimes it takes more than just a day or two. No stressing, as that only makes it worst and gives you what is called a lupus "Flare" which can get bad sometimes. Just know we are here to assist you with any questions you may have. Trust someone here in the family will have experienced it and have an answer for anything. Again WELCOME!!! Many blessings and hugs
Hang in there and don't give up !!! Keep your Faith , cause GOD has something in store for all of us who suffer from this LUPUS stuff. And remember we are here for you !!! smile Once again Welcome to the Family of LIving with LUPUS !!!!! smile ..... Beverly L.