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

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 :)

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17 Replies

  • 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

  • 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 :)

  • 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

  • Thanks so much, MaryF x

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

  • 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

  • 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 :)

  • 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!!!!

  • 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!

  • 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!

  • 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 :)

  • Yes, I too have had dreadful stressful times in my life and also a very nasty illness picked up abroad years ago which nearly killed me. Like everyone else I feel that these things shock your poor body so much it reacts. I wanted to just tell you though that for many years I too have had eye trouble and the driest eyes imaginable and I use drops every hour or even more often and ointment at night. I have just been given different eye drops to try and it's the best I've used so I just wanted to pass it on. It's HYLO-TEAR. It is in an applicator but easy to get used to and because there are no preservatives it is better for your eyes. Because it is in the applicator which dispenses one drop at a time it lasts for 6 months even with no preservatives. I use mine up quickly but if you only need it now and again it is good if it lasts this long. It is on prescription so worth a try if you are suffering. Good Luck.

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

  • Hello. At night I use LACRILUBE ointment. It is a very small tube with a thin nozzle. I put it in last thing before getting into bed because it's difficult to see once it's in! Just pull the bottom eyelid down a bit and squirt a little sausage of the ointment along just inside the eye. Then close the eye and try to get it over the eyeball. It's like soft Vaseline really but for eyes. So it is a good lubricant. I still wake up in the night though with sore eyes and use the Hylo Tear as it's easier when you're half asleep. The tube is very small and I need two or three per month so I get it on prescription as I don't have to pay being over 60. I hope this helps you. If you know anything else good for eyes please do let me know. Thanks.

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

  • 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. :-)

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