can you have a flare and have normal bloods??

[Sammymoat1986]

I am so poorly at the moment and had my bloods done and there fine I feel like I’m going mad!

[MrsMarigold]

Hello Sammy. I’m not sure honestly if I would call it a flare. For me, everyday, it’s just called lupus. My Rheumatologist did my bloods a month ago. Passed every thing except urine. Had an infection. But as he said the tests are fine and I begin and end my day feeling tired, slow stepping, swollen joints

Etc. My meds will change soon. Are you on the best meds for you? Best, Titters

[Sammymoat1986 in reply to MrsMarigold]

thank you so much for taking the time to reply, I wake up everyday in pain, and like you say just generally feeling shit I saw my rheumatologist 6 weeks ago and told him I was struggling and he just said well your bloods are fine so your lupus is under control so get on with it type of thing it just gets really depressing and lonely

[MrsMarigold in reply to Sammymoat1986]

if it gives you consolation we can all feel like this. Some of us frequently; some once in awhile. Another thing to consider is if another medication would be more effective? Did he talk of that? I’ve also found the off label use of venlafaxine to help pain. And as it is an antidepressant I’m not too proud to say it’s given me relief along with counseling that has helped me accept my diseases. Best to you.

[Jerg]

yes I get that too also told the lupus is in remission but I know that is wrong, it makes me feel like no one cares

[Sammymoat1986]

you feel like your making things up don’t you I just don’t want to hurt anymore

[Looplylady]

yes i agree we can be feeling very unwell & bloods are fine....thought i was alone in this. Great to share with others.

Stay sure.

[tiredmum]

I know exactly where you are coming from. My bloods are always normal but the pain and weakness are so great I have just paid for a stairlift to be fitted. I have just changed consultant and felt quite upset when he said it wasn’t my Lupus causing the issues it must be fibromyalgia. It’s never ending. He wasn’t bothered at all when I told him I use a wheelchair most of the time. So frustrating and demoralising.

[Sammymoat1986 in reply to tiredmum]

aww I’m so sorry to hear your struggling with mobility It so sad that if our bloods are fine we are basically told to shut up and put up

[SurferGuy]

so sorry you guys are feeling terrible.

I can echo what everyone has already said - the amount of times I've been told my bloods are looking "great" or "best they've ever been", but my body is aching head to toe.

This is Lupus I'm afraid 🤷

[posthinking01 in reply to SurferGuy]

Or …. is it thyroid related - and they won’t diagnose that correctly either !

[MrsMarigold]

great conversation. Today I woke up and I can barely open a door turning the knob. It was my neurologist who first told meshould get a wheelchair for events where standing would last a long time. I have not yet. Also, I do think if we feel very unwell we should see our Dr. And revisit meds that might be of better help for us. Inflammation means our disease is active. Suppressing it is helped by the right meds and diet. Now with diet, that’s a whole other thread. I will end with I have been gluten free for almost 10 days. I’ve eliminated gluten in the past successfully for 4 years. Then….,,, I wanted cake😂. So after 10 days I already notice a difference. Best, Titters

[marypw]

No youre not mad - its just normal for lupus. I don’t really get flares - i just get good days and less good days, often with no particular trigger. Stress and trying to do too much are definitely not helpful.

[Sammymoat1986]

it’s just a bleak outlook when you have days where you feel amazing and then other days you wake up and hurt everywhere dizzyness foggy brain it’s just to put it bluntly shit

[Sammymoat1986]

do any of you know who I call to speak to my rheumatologist? Do I call his secretary? as I’m getting left sided rib pain stabbing inro my shoulder and my consultant said If I get anything like that I need to call them as I keep getting pleurisy but j called the rheumatologist department yesterday and the receptionist said to speak to my gp?!

[joanneM200 in reply to Sammymoat1986]

my consultant has a phoneline for specialist rheumatology nurses, they are very very helpful. I’d try ringing the secretary and asking if they also offer this service

[Sammymoat1986]

thank you for your help I’ll try that

[Deiniol]

Yes, I had flare ups and bloods were normal. My Specialist decided to treat my symptoms and how I felt rather than go by the test results, thankfully.