ARE THESE typical SLE Lupus symptoms & do you kno... - LUPUS UK


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ARE THESE typical SLE Lupus symptoms & do you know what was your lupus trigger?

SmilingToots profile image
16 Replies

Diagnosed with SLE 4 years ago. Had/have the usual symptoms like fatigue, swollen joints & muscles, wee lumps on hands and scabby nose etc however wondering if other things I have other lupees have? ..... Dizziness maybe vertigo when I lean forward, irregular heart beat and strange chest pain, mind/brain fog, abnormal smears taken every 3 months and before diagnosis constant eye ulcers? I keep mentioning all these to My Rheaumy who is treating my SLE but they say nothing to do with my SLE. Hope you are all having one of your good days and remember a positive mindset is the most powerful medicine we have .. Keep smiling :)

16 Replies
MaryF profile image

Hi get your consultant to check you for Hughes Syndrome and Also to check your Thryoid as sometimes some of us have all of these. An untreated thyroid can cause palpiltations. Also with Hughe and Lupus this can cause problems with heart beat, Mary F x

SmilingToots profile image
SmilingToots in reply to MaryF

MaryF .. Thankyou so much for your reply. I'd never thought about Hughes and looking at it I tick every single box. I shall definately pursue. I've had a thyroid test in the past and it was ok however was ages ago so shall request another too. Thanks again and have a great day :)

MaryF profile image
MaryF in reply to SmilingToots

Hi there is a forum on this same HU platform, like this one, we have several members on here, I normally suggest people with Lupus come on here, and also join TUK for their advice, as Thyroid Tests are unreliable. The HSF also has a list of medical consultants area by area who understand Hughes Syndrome some are NHS and some are private. Mary F x

SmilingToots profile image
SmilingToots in reply to MaryF

Thanks so much, MaryF x

MaryF profile image
MaryF in reply to SmilingToots

It is a pleasure, we all have to help each other! Mary F x

kittykat68 profile image

hi smiley i believe they are lupy symptons as i suffer exactly the same , ive been to gyny twice for abnormal smear and then nothing they say its lupus playing tricks but again i would ask ur consultant mines not a rheumy as apparently ur not allowed to see to many consultants and because i see 3 apparently its a drain on nhs resources so i see dermy and thoracic meds Re emphazema and copd , sorry had to get that in , but ive also have 3 ecg im 45 now so i do worry about the chest pains but again im either told its side effects of methotrexate or pain due to pluricy , hope ive helped

SmilingToots profile image
SmilingToots in reply to kittykat68

Hey KittyKat .... Demand to see a Lupus specialist or Rheaumy. In the initial stages of trying to be diagnosed I was being fobbed off however as soon as I put my requests in writing they responded .. Maybe try that if not done so already? I've read about an American case study saying abnormal smears either caused by lupus itself or more likely meds so I try not to stress about it! The chest pains come and go as do the funny heart beats .... Is this the same with you? Thank you for replying and have a smiley day :)

kittykat68 profile image
kittykat68 in reply to SmilingToots

hi all thanks for your reply , i was under 1 rheumy for 2 years he did absolutly nothing for me , so i wrote to him and told him after waiting to see him for a year i was very dissapointed in my appointment, so second app was all about why i was disappointed, so i went to my g.p. with the name of th elupus specialist in my area, she said i couldnt pick and chose rheumys so i said ok ,id like a second opinion and id like dr s daunt , after 7 months of waiting i saw the said rheumy he told me i had fibromyalgia alongside lupus and then in the next breath said .... that can be controlled via ur gp and i dont see any reason for you to see a rheumy again!!!! that was a year ago!!!!

bluebell99 profile image

I'm really shocked you are only allowed 3 specialists. What would happen if you needed a knee replacement, would it be your thoracic consultant who would blame it on pleurisy.?

If you need to see a rheumatologist you should see one. Were you told this at the hospital? If it was your GP I would look for another.

I regularly see a urologist, rheumatologist, orthopaedic surgeon, eye specialist and cardiologist, all at the same hospital and I have never been refused a referral.

As to regarding a trigger for my sle, it depends how far back you go!! As I had been having symptoms for over 40 years but not continuously, I could say the onset of puberty, later, having extreme stress in my marriage with 2 children in very quick succession, or suffering from a very bad dose of flu that went on for over 3 weeks, or having a fantastically hot and very sunny holiday in New Zealand, foolishly without sun protection. I guess now I am an amalgamation of all of these things!

dgleds profile image

Before my lupus started had a bad year in 2009..Single Mum dying (Me only caring for her) other family would help..she wanted no home support menopause..etc...Then I decided to move, daughter stayed cat died arggggggg. My first symptom thing they think was I woke up partially deaf one morning....I previous to this though had my t4 t3 doing wacky stuff...even though I was over medicated on thyroid meds (Im hypothyroid)..stuff was def happening...Also they said I have chondrocalcinosis...funny ANA..and inflammation...Stress now makes me feel like a balloon with the air .let out..happens real quick too. (weird tired) My glands been doing something weird too.. blood tests soon.

Yes - I think mine was a prolonged bout of severe stress too. A horrid divorce, lone parenting, moving house, witholding of financial support by ex, three jobs at once, then suddenly no jobs*….. a 'flu' bout that I thought was triggered by exhaustion, which never seemed to go away. Stress is now the key thing to trigger a flare for me.

*and in the middle of it all I quit smoking, which is of course VERY good for you ultimately but can be quite a shock to the body, which is used to all its toxins!

SmilingToots profile image

Bluebell, dgleds and Maggie ..... Thank you for your replies. Aye, I too believe a combination of triggers with myself. Especially the stress as when SLE went crazy and I was diagnosed my stress levels were high. When the fatigue hits I try not to worry about what daily stuff needs done and just try to chill out and relax. I had to give up my career when SLE got really bad and started own business so I can do nothing when I need to so I am lucky. I have a 6 month old baby so still kept on my toes! I appreciate your replies as it reminds me that I am not a imagining my symptoms! Hope you have a good day today :)

I use These Drops too, they are really good. What do you use at night grandmacarol?

Thank you very much. Will see doc about nxt week. Take care

Newbee profile image

For your dizziness, look up BPPV. Is this mostly prominent when you lay flat on your back, at bedtime? Then rolling over from one side to another? Sort of feeling that you've had a night spinning round at a fair - but not been to the fair? This can be sorted by physiotherapy, with manipulation. No problem. :-)

miccika1 profile image

I never had any abnormal smears nor eye ulcers. What does your gynecologist say? Eye doctor?

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