Hi
I don't have a diagnosis yet, but it is looking like I may have Lupus. I know my blood tests are indicating problems, but I'm not able to see my dr for another week or so. I'm known for my high energy levels and I'm finding it very frustrating that I can't do a fraction of what I used to do. I'm concerned that I'm just letting myself off from doing things because I have an excuse. Should I just push on and lead my life as normal, or do I give in to the fatigue and aches?
H
I have been diagnosed with MCTD with Raynaud. I’m a very energetic type, lots of exercises and stretching. I’ve never experienced flare and hope it will never happen. No problems with joints. But I know it may come one day, Lupus is so unpredictable, so, I keep on with my exercises and yoga hoping that it will lessen any joints problems should they come in the future.
Stopping joint movements may cause serious stiffness.
Supreeya
PUSH THROUGH ! Do not let Lupus beat you. It CAN be done I promise you. Stay strong !!!
Hi, diagnosis of Lupus for some strange reason takes a while in this country. So far I've been diagnosed with Sjogrens, and had to have another biopsy as they didn't take enough skin...
No, not advisable to give in to fatigue, you work through it and take as much rest as you can get. I do stretching exercises in the morning it really helps get your body working. Just hang in there diagnosis in this country from my experience takes a while, or maybe that's just the South West I don't know. Maybe interesting to find out about different areas, some better than others etc...
Good luck.
Hi janw I stay in the highlands in Scotland it took me 9 years to get my diagnosis and four years of trying different meds to get them right I have been diagnosed with behcets which is quite similar in a lot of ways but still know what everyone is feel I felt so alone not thinking anyone understands what ur going through till I found this site I love can come on share symptoms moan and feel better afterwards better that out running and can make all difference just getting stuff off chest hope your well curly
Hi Curly, yes this is a great site for findings things out and asking questions about stuff you're worried about, some knowledgeable bods on here - better than any doctor... Yes this idea we are all fed that it takes 7 years and 9 in your case is just an excuse not to deal with the problem and fob people off. Not sure why until someone on here asked if she could get PIP for Lupus - personal independent payment then the old cynic in me reared its head and I thought hallo, so that's why, they don't want to pay PIP or for medications which I guess could be expensive. You're not alone when you have people on here who can chat and Buck you up when you need them. Wishing you well hang in there like we all have to sometimes.
That one thing that good I don’t pay in Scotland meds are free It annoyed me at start they kept giving me pill but saying I was post viral so when I asked what virus they didn’t know so how can u give me all these pill if you don’t know instead of investigation of problems just throw pills and painkillers at him you find more out on here than most docs I get stuff on here print it off then take it when I go to app with doc and say can I try this , I even went private at one point sent all my med notes to a professor in Nottingham uni and he totally slated my doc and consultant he reckons iv had it since late 80’s , but going back I love this site even just spkin to some one or listening to ther problem giving them just a wee answer it helps nowing ther not alone and we are one big disfuctional family on here x
Yes if you've got a virus in this country all they say is - you've got a virus end of, no investigation that's it we've all been there. In the U.S. If you've a virus they look into it and you're given anti viral meds. I don't feel guilty about getting free meds due to the fact it's the only thing I do get free and that started with thyroid problems. Funny old world when other supposedly poorer countries get much better health care than we do, but then they are tossed billions in foreign aid so they now outstrip our own people.
I feel guilty coz we are ment to be one nation so because I’m Scottish my government can give me but not someone in England not fair , your right you look to all these countries that do stem cell replacements and transplants and you wonder how the hell we are ment to be best and leaders in the world but it’s getting harder and harder I feel for the younger ones coz by then ther prob won’t be a nhs it’s so broken now I feel for these nurses and young docs they are so over worked and dressed they don’t do it for the money they do it coz they want to care for ppl and make a difference to better ppl life’s god just gone ten and I’ve moaned my head off lol 😂 x
Ah Curly if only we could put the world to rights aye, how good would that be. Agree about prescriptions many in England struggling to pay and they keep going up. My doctor told me four years ago they intend to privatise the NHS it wouldn't surprise me, politicians you can't believe a word they say. As we get older think we all feel for the young, can't get a property without huge deposits, rents high. Yes you can't beat a good moan it's one of the things we British do best😄 Catch you later I'm off to walk the pooch.
Pushing through is what caused my current flare up. Despite feeling tired, I kept pushing myself to go running training, until I was unable to do anything - my body just gave up with aching 24/7 and chronic fatigue. You need to listen to the warning signs, otherwise your body will find a way to stop you (if only I listened to my own advice). You'll find that your mitochondria cells are not producing the energy you need, therefore pushing yourself will only result in weakening your immune system even more.
I can't agree more. Its important to strike a balance. Gentle mobility in a flare is fine, but think about it. Lupus is an inflammatory condition. Would you run on a sprained inflamed ankle...no! You would gently apply weight and go at your own pace.
If your body is inflamed because it is attacking itself why would you want to push through, only to potentially cause more inflammation on top of Lupus inflammation. Its a vicious circle. You must learn to rest and pace. Going to bed for days on end won't help at all but do what your body is telling you it needs. Gentle mobility, have targets but set time aside to dit and rest for a few moments.
I tried to push through, mind over matter, I can do this, its a positive attitude that I need!! Well, it didn't work and I became so crippled with inflammation that I landed up with a damaged heart and am still on steroids 2.5 years later. Go slow and win the race. Dont pressure yourself. Lupus is a massive adjustment.
Good luck!
Oh it’s so hard isn’t it when you’ve always been so active? It’s the thing I hate most about lupus - the lack of energy and fatigue! I’m in hospital at the moment and keep getting young medical students to talk to about lupus and I keep highlighting the effect of the fatigue on our lives as some consultants/ drs are so (understandably) concerned with our organs they don’t understand that fatigue is the thing most of us struggle with the most.
My advice would be to keep active but to listen to your body and rest too. I’ve learnt the hard way (slow learner! 🙄) that there are times when you simply can’t push through and it can make the fatigue (and pain and other symptoms) so much worse and last longer. You’ll find your balance over time and hopefully you’ll be like many of us where the fatigue may be awful at times but you’ll also have times where you can have a normal active life again.
If it does turn out to be lupus, the medication will help too. Good luck
X
My rheumatologist gave me the best advice when he said 'stay active and do not stop living your life'. He said his patients that do the best have a positive attitude and keep active. Yes, sometimes I don't feel like exercising but I feel great afterwards. Just make sure you go to bed early and get plenty of rest, it is all about balance.
I know it is very frustrating but until you get a diagnosis I wouldn’t do anything too energetic. By all means do gentle exercises but don’t overdo it. Listen to what you’re body is telling you. If you do have lupus or any other autoimmune condition you will pay for overdoing it. You really will feel like you have been hit by a bus.
It took me a long time to accept my limitations and it was hard to accept. Please take care and take it one day at a time. I hope this helps.
Thanks, Josiewolf. I definitely feel like I've been hit by a bus!! The blizzard is keeping me at home so I can't push myself too hard!
I pushed through and have finished up in a dreadful way and getting worse. Every time I ‘push through’ and do too much my symptoms increase. The level of the bar I need to push through is getting lower too.
Know your body and pace yourself.
If you are tired your body is telling you something.
It’s about mentally pushing on not physically.
Take care x
That’s very well summed up- mentally pushing on not physically. So hard when you’ve been so physically active but seeing it as mentally strong learning to adapt is really important too. Well said MrsAndyIvy!
While there are times where one HAS to push through, on the whole it's best to choose your battles.
A little gentle exercise on the days you'e able is good for you, but overdoing things and "pushing through" too often WILL lead to a flare up of symptoms where to be honest you just CAN'T push through.
Also, it all depends on disease activity, everyone's symptoms vary, some have a relatively mild illness that's well controlled with medication and lifestyle changes, and can perhaps do more than those whose illness is not controlled so well and therefore physically CAN'T do more.
The advice to "push through" is I'm sure well meaning, but not always wise or possible. As Happytulip said so well, you wouldn't run on a sprained ankle.
Right now I feel hit by a bus because i over did things a couple of weeks ago, yes, a COUPLE. I'm still paying the price for a day or two of "pushing through" I've had nearly 3 weeks of flare.
Learning to pace is important, we can still do stuff, but we learn to add rest in to our schedule and be balanced.
Most important, LISTEN TO YOUR BODY. It tells you when you can get away with pushing it a bit and when you can't.
I hope you get answers quickly.
🤗
Thank you everybody. I did a little bit of what I wanted to do today, and I've just had a two hour sleep. Given the blizzard here in the East Midlands it was probably the best thing to do!
Please don’t give in, easy to say, change that word from push to pull! Everyone on here will help you to pull through. The fatigue and aches are a battle, a little increased excercise each day will start to control them. Best wishes Kevin
Hi HeKe ,
It is important to listen to your body and learn to pace yourself. Pacing is an important practice in lupus because it allows you to manage your energy levels and help prevent a boom and bust cycle. You can learn more about managing fatigue and pacing in our blog article here - lupusuk.org.uk/managing-fat...
Bad breath through nose
Most days, I can handle work…
Can I ask a huge favour of my fellow luppies?
