Hi their I have had lupus since 2012 June time am now 20 and seem to be struggling slightly as time goes on I have mild episodes of joint pain and muscle pain, I get out of breath a lot and my chest pains have came back again (sign) but worst of all is the fatigue I cant control it no matter what and its so bad I get headaches along with it the tiredness normally comes all the time whether I have done a lot or not done anything at all the headaches are unbearable I cant cope much anymore ad no one understands what am going through everyone doesn't get the heart of what lupus is. Anyone have any suggestions on what I should do with the tiredness, headaches and the out of breath and chest pains it makes me feel sick as well when I have the headaches please someone just help me with these issues I really cant control and deal with them
Almost feel like im killing myself with the fatigue - LUPUS UK
First of all, you are not alone - there are LOTS of people on this site who understand what you are going through. Keep hanging on in there. I'll keep my answer short so you're not having to read an overwhelming amount of info.
Tiredness. The only answer I have to this one is that you just have to rest and take it easy when it happens. And when you DO get times when you are feeling OK with a bit of energy - make the most of that and do something enjoyable, even if it's just a little thing. I've found that nothing really helps with the tiredness other than rest. You just need to accept it - not in a 'giving up' sort of way - more in a sort of 'OK, this is happening, I'm just going to roll with it' sort of way.
Headaches - I used to get migraines ALL the time, each lasting 4 - 5 days or longer, with nausea and vomiting and all that stuff. Of course I cut out all the usual dietary triggers like chocolate, dairy etc. One year, in January, I had one every week for 5 weeks in a row. Then they disappeared! Just like that! I've only had maybe two in the last 5 years since then. Mysterious. There's pills you get from the doctor - I can't remember what they're called, but you only have to take one (and another one a few hours later if the first one hasn't worked) and they work a treat. I have previously staggered into a chemist clutching my head and begged them to give them to me even though I couldn't remember what they were called and they did. You're supposed to have a prescription from the doctor the first time you take them, then you can just get them after that. I didn't have a prescription, I just told them that I had previously had them on prescription and they gave them to me. I am not suggesting you do this! I'm just saying what I did previously. Obv you probably should go to the docs but if you seriously cannot bear it another minute - you may wish to try.
Breathlessness and chest pain - I've had this since April and it's a total pain in the chops. I've found that mine is made worse when I encounter any airborne chemicals - perfume, aftershave, cigarette smoke, cleaning fluids - stuff like that. So I avoid them wherever possible. And when it happens, I try to get fresh air to clear things through a bit. I've also had to stop any sort of cardio exercise. In my case, it's been caused by fluid in the lining of my heart - pericarditis. So on Monday, I had a Kenalog steroid injection which should help reduce the inflammation - we'll see what happens. So you might want to get that investigated - through an ECHO test.
Good luck. Keep hanging on in there. It will get better.
I had all of this and was despairing that this was just my new norm until I found out I was quite anaemic. Have you spoken to anyone medical about it? I'm on iron tablets and have been off work for a few weeks. I know it's early days but I feel completely different now. I can't wait to hit the gym once I get my iron levels and blood count sorted out. Don't lose hope. Go and speak to someone about it! Good luck.
Thanks for the heads up on the anemia perspective I have already had anemia it was treated with iron tablets come tk mention I feel anemaic but my doctors said I am not anaemic so Its my word on thiers
If you still have the bladder issue that will make you feel really rough. Well if its anything like when I had it. Things have improved somewhat for me since I have got that under control but tiring easily and needing lots of rest do seem to be part and parcel of this condition.
Something else I came across recently which I cant guarantee helps, but I have had more energy when I have used it is aloe vera.
Also spirulina which is pond algae. Yes seriously. But it seems to contain lots of things that we may be lacking in our diet. Some people add it to drinks but I put a bit in soups or use a little as others would use a stock cube. Google it.
But the thing that seems to help most is being strict about what I eat and drink in the first instance. Based on the principle that you wouldnt put sand in your cars fuel tank and then expect some medicines to put it right.
The bodies fuel has to be correct first and foremost.
I know its true that many people don't really know much about lupus, or nothing at all when you try to explain to them ;"I have lupus"....
I feel better, but I also still feel tired a lot too...I was told I have mild lupus last year, but think I see on tests I may have had it sooner but no one said anything to me at the gp...
Are you on plaquinil? Im pretty sure plaquinil (hydroxy)helped the most for me....I reduced the dose over time, because I was getting really bad headache on higher dose....(I asked Rhumey about reducing the dose)...Im taking a high vit D ...all my physical tests came back fine this time, but ive not seen the rhumetologist again yet....so for me its not iron, or B12, or even my thyroid making me tired...Im stressing out and a bit lonely, and I think its messing me up again....I think stress can really get lupus going...
Please stop thinking no one understands. WE do! I say that ALL the time - especially when my husband's response is "I have the same thing." You are very young and one day you will go into remission and feel fine! You must stay active! Take up a sport. Swim (even if it has to be indoors). As long as you keep your body moving, it fights the Lupus that wants you to stay in bed and give up. Don't let it! I am much older and have Lupus for 3 years, plus a lot of other medical issues that go along with it. For me, there is little hope of remission. For you - it WILL happen! Your body is fighting a war. You need to fight too! Everyone on this site understands. We all feel like giving up many times. But if you -- Lupus wins. You CAN be the winner! Medicines can't really cure you - but YOU can fight the awful fatigue if you just keep going!
Metoyou...I have had a terrible time with chest pains and breathing difficulty all last week. Don't know what to do either. Thought was anxiety and tried passionflower, very effective anxiety herb. Didn't help. I started drinking my marshmallow tea again which helps with lung issues. It actually helps pulling phlegm out of lungs. You can read up on it online. I also got a deep tissue massage which helped. My chest pains are better and my back pain. Breathing is less labored. Tiredness - go lie down. Rest immediately when you are tired. Don't push through anymore. I also lied down yesterday with a headache starting. Slept for 2 hrs. I don't sleep well at night. I believe we all have that problem. So, I take naps all the time. Hope you can get help and feel better.
I echo what everyone else has said re you are really not alone. This site is wonderful, people understand you here. I have has SLE since Jan 2012 and had the worst fatigue fir the first two years. I dont know how i got thru 2013!! But I managed to carry on wkg full time n doing school run. Apart from that i couldnt do anything!! Im lucky coz wirk is local and very understanding, so i came home n slept almost every lunchtime or flexed my hrs on days when i just couldn't get out of bed. I put in nearly 2 stone in weight coz literally slept all the time that i wasn't working. My poor son suffered too as i didnt have energy to cook him decent meals or go out with him to the park or anything like we used to. The fatigue has changed my life . Hydroxychlorine has really helped! I still am tired alot but have slowed down pace of life, realky found stress makes it so much worse so try hard to relax more. This year im almost like a normal person agsin . In the past six months the fatigue seems to have become much more manageable and i feel like ive got my life back. I still cant do too much but its so much better n i cook decent meals and me n my son are not eating rubbish anymore!! I have become much more organized too. Moral of my story was i had two yrs where I literally worked and slept. I am single mum so have to work. Everything else had to wait. But meds work and keep a positive attitude. I had always lived life in fast lane, has taken me 2 tough years but im kinds used to doing things slower or less now. You will feel better and get control again. Listen to your body and rest as much as you need to x be kind to yourself and your body will respond x
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