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sight and smell queries

morning everyone!

my first query is; summer this year has been my worst ever regarding all my lupus symtoms but im concerned about my sight as several times ive been out and the sun has literally become too bright to see, even when squinting to help block the light from my eyes. the ground becomes white and glaring and my eyes become painfull. this lasts about a minute or less but its frightening. I wondered; can I have glasses from optitions that lenses darken according to light even though I don't need glasses to read etc? I am overdue a eye test too.

would these glasses help with the strip lights at work too please?

my second query is: why can I smell mould all the time? I have OCD and always cleaning etc so there isn't mould spores in my home. my home is well ventilated even in winter etc. I even smell it at work.

apologies for random questions,just curious to find solutions to make my life a little easir. hope your all well, take care x

8 Replies

The mould smell could be a fungal sinus infection? Or olfactory hallucinations . The later can be caused by inflammation. I have had these on and off for many years. Before i realised it was me, my children would laugh at me going around the house trying to find the source of a smell on my hands and knees.

Do talk to your Gp as there are other reasons for this symptom that may be significant with your eye problem, I just don't know , nor would I want to second guess. Good luck, and NO you are not going mad.


My eyes are terribly light sensitive I have reactalight lenses in my day time glasses I only have a very slight pricription and don't need them all the time but they are great for helping with bright light !!! I have a very strong sence of smell and lots of sinuse pain and allergies I just always put it all down to the lupus !!!! Xx


omg that smell i had it for weeks ,i kept saying to everyone do i smell and suzys right i had a nasal infection, i get them alot its not a lupy thing as such its the meds , metho and plaquinil, i was weened off plaquinil for 6 months and in that 6 mths i never had one sinus/chest infection, since being back on plaquinil since june ive got a none stop smell and a permanent cold . i sat down and did the pros and cons and basically its one of those side effects that we have to deal with , i dont want to come off plaquinil again as i do feel better on it but im on a lower does so i dont get as many side effects hope ive helped , sorry u didnt say if u have syjorns if so that will be ur over sensativity to daylight/florescent light, when i worked i used to wear sunglasses and they were great really takes the edge off and i didnt get as many cluster headaches x


thankyou! feel better now I know its not just me who gets this!

ive not been tested for syjorns but I do have dry eyes (especially when waking,they feel kike I have sand in them, very painful) and now have to swallow milk during eating as I sometimes get gagging feeling during a meal. my mouth is dry too.

i do get a lot of headaches that affect my vision; i get "floating light" swimming in my vision that make me neaseas and dizzy. i take 200 plaquenil (no quein or something?) and ibrophen for joint pain and headaches daily.x


ment quinoric as chemist wont stock plaquenil anymore x


Before I was diagnosed with lupus I went through a spell where I was incredibly light sensitive. I was on holiday in cyprus and remember not being able to venture out at all in the middle of the day and at other times I needed a shady hat. Following that I have always worn uv reactive lenses.

I have also encountered problems with smell. For most of my life I have had sinus problems. Or that is what I thought. Constantly sniffing or being blocked. In recent years I seem to have lost my sense of smell completely. Occasionally now I get a sensation of a strange chemically type or smell but I dont think it is real. I dont know what causes it.


I also had strange chemical or oil/petrol like smells but that was before I was diagnosed and when I was particularly tired. Since I've started on hydroxychloroquine, I've only had it a couple of times so the drugs help me! Strange isn't it


OMG I cannot believe there are others who have the same problem as me with smells and light sensitivity. Thank God I'm not going mad after all. Thinking back I have had lupus for years and it has had long remissions. It has flared in times of stress mainly. I've been treated a lot for depression and psychosis and all along its been lupus which i have finally been diagnosed with last week. Such a relief that I'm actually not mentally ill or it's all in the mind like some people think :-)


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