Please tell me it's not just me! I have lupus ( and aps) which gives me a lot of joint pain and fatigue.
I have days where I feel ok and can do a short walk but then others like today where a 5 minute short walk might as well be a marathon to me! My partner says it's 'only a 2 minute walk' but that's a lot to me some days.
It's hard as people would look at you and think there is nothing wrong and can't see why this would be such a big deal but some days I can't even think about a simple trip somewhere it just feels too hard. I feel bad as I have a baby and toddler and feel I am making them miss out on stuff because of me.
Just like to know if anyone knows what I mean.
Thanku, never want to moan but just feel bit pathetic at the moment!
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Sara_A
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Not just you - and not just lupies!! Fatigue of this sort is a feature of most autoimmune disease - and the only way round it is to pace yourself and rest appropriately. Yet again I'll recommend a blog called Despite Lupus by Sara Gorman - she too has 2 little girls (not so little now though) and also manages to run a business. But only by planning a nap every day and sticking to it. Small children are hard work and even when you are healthy you'd be very tired - with an autoimmune disorder it's even worse. It will require a LOT of planning - but it will improve.
Thank you, I know, I think today was just one of those bad days! Have been started on azathioprine fairly recently so I think the good days are getting slightly more frequent it's just so frustrating my head wants to do stuff but my body just won't! And I'm kind of one of these that can't sit down for 2 minutes as feel I should be doing something, it drives me mad! Ha
I am on hydroxychloroquine but prior to being medicated I was just like you with the walking especially and fatique. I also had lots of muscle and joint pain, and a feeling of weakness in my arms legs and hands. Along with the dreaded hot sweats that was accompanied a feeling that my heart was beating ten to the dozen and feeling quite breathless. All this and I haven't yet got a diagnosis.
But the hydroxychloroquine has helped loads, which I am really pleased about.
I was on hydroxychloroquine 4 yrs ago before my first baby and it really helped I was great on it, at that time I had a blue badge and dla. With my pregnancies was a lot better Drs said I just need to stay pregnant!
But since my second baby was born 7 months ago have had this flare. So went back on hydroxychloroquine with little effect so started on azathioprine too. Also on steroids. Hopefully it will calm back down again very soon!
Stay strong 4 them just dont push yurself too much, listen 2 yur body. Ask doc about B12 . I heard shots will uplift u. Its true noone thinks ure sick we look normal , well xcept wen i walk if im sore, its got me on disability and wen i park in handicap n put up my sign ppl look at me funny. Think positive!!!
Dr checked for B12 couple weeks ago not heard anything so I assumed must have been ok will check tomorrow when I go for my 2 weekly bloods.
Yes I had a blue badge a few years ago and being in my early 30's then people used to look and I felt embarrassed, which I do now too as sometimes I have to wear splints on my hands I don't like to wear them out as people ask why! I would never ask someone something like that don't know how people dare sometimes!
I also am on plaquenyl, azathioprine ( also called Imuran), methotrexate pill form, folic acid, calcium +D, thats enuff for me , still flare every other nite or so, if i have a swollen joint its usually at nite & is gone nxt day, i do ibuprofin b4 bed 2 sleep cumfy. Alot of pain around neck, chest shoulder area unexplained had xrays, ecg & heart is ok lungs too must just be inflammation in that area or my pinched nerve but its so hurts often. Now i got cold urticaria ughhh
You are certainly not alone!!! All of us Lupies are the same. Stay strong & don't let it grind you down. Make the most of the good days & rest up on the bad days.
Yes I'm the same and u feel frustrated because u used to be able to do more. Over the 10 year period I'm getting there but not there yet is to not expect anything from myself n if I have a good day I don't expect anything until I come back. What I have got the last few months is like a high v light fishing chair that can be folded. I use it as a walking stick and then a chair to even have a breather in a shop they can't do anything. It's not a chair chair more like a stall it's v light it's high to sit on and when it's folded it looks like a walking aid any way come back to me if u want a picture I use it ev where. Walking the dog , shopping. Queuing is good too I never know when I'm going to get a fit of tired so it's great. N I never leave home without a drink either.
I am so sorry that you are feeling this way. You sound like a completely normal woman with lupus. Rest is often the only way to deal with your condition and that is frequently denied for a myriad of reasons. Keep your chin up and hang in there. Remember that there are a whole bunch of us, just like you, out here fighting this war. Don't give up!!
Hi know exactly how you feel I have all them same symptoms and have just been told it's behcets syndrome not lupus ,it's not like having a broken arm leg where ppl can see that I live in small town and ppl just judge with out knowing what you go through every day 4 years ago I tried to do something very stupid and if it wasn't for ambulance lady I would not be typing this now I was sick of being in pain and no one believing your symptoms it's time like that you find out your true friends I just felt I was only person like this I wish I found this site sooner just keep at them yours Donald x
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