Extreme low energy

[Willow1414]

Hi any tips , new to lupus

[puzzles65]

Hello, the one tip I would like to give you is don't push yourself to far, do only what you are comfortable with, it will seem that you have had to slow your life right down, take your time, there's always another day tomorrow, talk about your feelings, your pain, your fatigue....let people close to you know how you feel, cos they cannot help/ understand your illness unless you tell them...… take care of yourself x

[Willow1414 in reply to puzzles65]

Hi puzzles65

Thank you for the advice .

X

[1sam]

Hi. Rest all you can and eat well.

Try to read about common symptoms so you can understand what the disease is about.

You are not alone in this, you know that, right?

Hugs!

[Willow1414 in reply to 1sam]

Hi 1sam .

Thank you for your reply . I have read a lot about lupus has I’ve been under ruematology since 2015 , initially I was diagnosed with CTD . Now it’s Sjögren/lupus overlap as well as raynards . Just wish there were more understanding of this illness . My latest thing is low platelets and finger joint bleeds , as well has feeling extreme heat within my body .

Do you have any of the same ?

[Willow1414]

Thank you for both your replies .

It seems that all I want to do is lay down .

I have been under rheumatology since 2015 . First stated I had mixed connective tissue disease. Along the road I’m now labelled with sjowgrens , lupus , raynards the list goes on .

I’ve just joined this forum , as I feel most people even doctors don’t really understand .

Anyway . I’m up in Yorkshire . Loving the better weather , albeit blathered in factor 50 , hat and fully clothed .

Thank you for the advice . X

[Krazykat26]

Hi Willow n welcome to the group 💐

U have come to the right place so u can congratulate yourself for joining us..n then rest!! This is a very active site despite the fact that we probably all know how exhausting lupus is. You'll find good sound advice..lots of tips on how to manage..we enjoy the odd giggle too!! This forum has been a life saver for me..literally!!

It's sooo important that u rest when u have to because of u don't things will only get worse!! Believe me I've had to learn that the hard way..it's so tough when I can't do even the simplest of tasks n at first I did spend alot of time berating myself..but I then realised I wasn't doing myself any favours n decided to congratulate myself on the things I did achieve instead!! My life has changed drastically..mainly from being independent woman to dependent on everyone close to me..with the strength of wet spaghetti!! So my best advice would be..if lupus says rest...then u must rest!!

The lupus UK website is packed with advice about autoimmune diseases so definitely have a look at that. It's true that lots of doctors don't really know about lupus so it's up to us to educate them in order to help us!!

U don't say much in your post about your symptoms n any treatment your on..or if u have a consultant..but even just reading the posts on here will empower u so feel free to post anytime..there's always someone about..u are not alone 🤗🤗xx

[Willow1414 in reply to Krazykat26]

Hi KrazyKat26

Thank you for your reply . Yes I hope I can get some comfort in sharing things with people going through the same has me .

Has I do feel like nobody seems to understand .

My most recent symptom is finger joint spontaneous bleeds , besides feeling that I have internal central heating .

I have Sjögren /lupus overlap .

Very photo sensitive . X

[Krazykat26 in reply to Willow1414]

I have cutaneous lupus..SCLE it's known as. Same as u..very photosensitive!! U got to cover up n beware of flourescent lighting too..wearing factor 50+ sunscreen is a must, n a hat n shades 🤠😎..n keep covered up..long sleeves n trousers!!

Congratulate yourself coz u made it here n u have found loads of people who understand xx

[Ianrussell69]

Wh3n the fatigue is bad keep up on meds and just rest it’s the best thing I have found to work

[Willow1414 in reply to Ianrussell69]

Hi

Yes just started back on hydroxiqlorqion .

Not sure if the body twitchings become worse because of this .

[Karm]

Definitely rest. I too learnt the hard way. Some times I feel ok. And then try and push myself to do s little extra, then I'm on my backside for.3 days exhausted! Talk, talk ,talk. Even if it's on here. All of our symptoms are similar, but also very different. Whatever you are doing (even walking to the kitchen to get a chocolate bar) just pace yourself. It may take you 2 days to wash a sink of plates, but let it take that long! Try not to stress to much about being unwell (coming from me), that also makes you tired.

Hope this helps

[Paul_Howard Partner LUPUS UK]

Hi Willow1414 ,

I'm not sure whether you may have seen this already, but we have an article on our website about managing fatigue which has a lot of information, personal experiences and advice that you may find helpful - lupusuk.org.uk/managing-fat...

[Willow1414 in reply to Paul_Howard]

Thank you Paul .

Interesting read .