hi today im feeling very low and very anxious which im sure everyone on hear understands that feeling,its been quite a while since my last blog because i have been feeling ok.
not today though thoughts of panic have been with me alday concerning my new symptoms of dry eyes, which started a few weeks ago and they come and go and cause me horrible discomfort.
went to docs today and he has talked me through the condition sjogrens thinking i might have developed this due to sle.
this has really upset me and worried me as the eyes are bad enough without the fear of dry mouth dry throat and just dry dry dry everywhere.
can anyone tell me if this is all the time or does it flare up and then go away, and also can anyone tell me if it effects their cheeks,i know it sounds weird but the glands in my cheeks feel strange not painful but uncomfortable.
i don t read too much on the internet as it scares me to death, just your personal experiences and advice would be greatful.
also can anyone tell me about hair loss i have found this also very distressing when i wash my hair i see many strands go down the plug hole and am very scared that i will get thinner and thinner this is very alarming please tell me that we don t loose our hair completely i couldn t stand that. im not vein at all just want to look as normal as i can even though i dont always feel it inside.
hi pinky, are you on hydroxychloroquin or methotrexate, as im on both and have syjorns 2, but i used 2 get really blurry eyes and a weird feeling in my eyes so my dermy recommended metho for my skin and syjorns as its an immusupressant i must say its a big help with my dry mouth , it doesnt stop the ulcers inside and out though, i also suffer with hair loss and was so scared of losing it , and in 2009 the invevitable happened i looked ;like fryer tuck HOWEVER i invested in hair ectentions that u clip in urself and bought a couple of wigs online and NOBODY knew any different . except me of course and that was a battle but i did it and it all grew back, yes my hair is very thin and see through, like you im not vain but i like to try to look nice and femine and ur hair is part of that x
I have had flare ups of dry eyes and hair coming out. I can totally relate to the hair down the plughole part of your post. It's very distressing to see. It's very difficult to cope with when you are endlessly trying to brush stacks of hair off your clothes.
In my case, both issues have thankfully been temporary although lasted long enough to cause a lot of anxiety and for me to discuss it with my Rheumy and GP. The Rheumy prescribed eye drops (which I never got round to using - I have a whole stack of them in my cupboard) and my GP said the hair that is being lost should be replaced naturally with new hair, which kind of eased my mind a bit.
I have stopped having my hair coloured now and wash it every couple of day to every three days. I have pretty much stopped wearing any kind of eye make up (or any make up at all) and so look a bit less groomed than I would like.
I now stay away from sulphates in shampoo and soaps etc and use sulphate-free toothpaste too. I try to eat a diet which is not too inflammatory and stay away from too many "naughty" foods. Fish oil is also a great help.
I am not on medication as I am allergic to Plaquenil and the steroid treatments. I drink Montmorency cherry juice whenever I remember and I have found that very beneficial when I feel I am starting a flare.
thankyou chocolate for your reply its good too know im not alone and yes i too am not on drugs due to an allergic reaction i have even had patch testing done recently.
i would like to ask how long your hair was falling out for its been at least 5months for me now and thankfully i have a lot of hair and its not too noticeable yet to others only me. still very upsetting though.
i also have stopped washing it to often as i hate seeing it disappear.
i have been taking the drops for my dry eyes but they don t really do much, sadly i think its something im just going to have to deal with until it stops flaring.
I can totally understand you. I've never had thick hair, but after my last flare up it became a total disaster. |I lost half of it in one month and it is still falling out. A couple of days ago I got so desperate I went to the hair dresser and cut it quite short. My partners reaction when he saw it was "Oh nooooo. whyyyyyy????!!!" But I just couldn't look at at anymore, plus I guess shorter hair will not plug the drain too quickly
I use Snow tears for my eyes and Lactalupe at night, have done for years and it is no problem, just got used to it.
Re-hair loss mine fell out to about 1" long when I was 18. all grew back until I had my children (another BIG flare) and it came out again. since then util about 15 years ago it was ok but then it started to come out as I washed it. My friends say they don't notice but strangers do 'look' and my hubby was less than supporting by saying would you like a WIG for your birthday - not a good thing when I was a) in pain and b) I was at a very low edge - still I just keep it cut short as it tends to make it look thicker and my hairdresser puts some fine hi-lights in and that Does help. My Lupus specialist says he will refer me to a scalp specialist in the new year to see if he can recoment anything, will let you all know when I have seen them.
Hi pinky 56 I know just how you feel. I suffer with dry mouth and sore eyes, it hasn't gone into remission yet and I have had it for a year before diagnosis. Now I am on Snow tears and Lacrilube. The ointment at night seems to make it worse but have only been on it a month, however the Snow tears help. I have Glandosane spray for the mouth in lemon flavour.
I to found today my hair is coming out in handsfull its worrying,but what will be will be keep your chin up.Hope you feel better soon it helps to talk. Godbless and hugs
thankyou everyone for your advice i don t know where i would be if it wasn t for this site.
its very hard to know what drops or gel to use for dry eyes as there is so many to choose from i guess i can only try each one and see what suits.
my mouth thankfully isn t too bad at the moment but it does now and then get very sore for a few days so i watch what i eat and drink plenty.
I'm not diagnosed yet, but I do have many symptoms of lupus. Some of the symptoms which I have, I've had for so many years, that in actual fact I didn't mention it to my doctor as it has become normal to me! Looking back, I can remember my mum taking me to see a consultant dermatologist when I was 16 as my hair was falling out so badly that we were burning the Hoover out! I was told that it might all fall out, but it would grow back, I was horrified! Thankfully it didn't all fall out, but since then I have always used a sink plug drainer in the shower to prevent the drain blocking. This also allows you to monitor your hair loss. My hair was always really thick. Now it isn't quite so thick but when I think how much comes out every time I wash or brush it, I'm surprised I have any left at all! I only wash my hair every three days, but I'm really lucky to be able to do that because my hair is not at all greasy. I never put hair dye on my hair until I was 30!! Now I dye it every couple of months (as i have a few greys :0( )but dye it the same colour as my natural hair to avoid roots and get as long as possible between dying it! More hair falls out the day I dye it, but I find that overall it doesn't affect my hair loss generally.
The thing that I find most cruel about this God damn disease is that we are being punished enough by the level of pain and discomfort which we feel evey day of our lives. Why should we have salt rubbed into our wounds by losing our hair and ending up with steroid induced chipmunk cheeks?
its good to hear that you have not lost all your hair im so afraid that i will eventually have to wear a wig or hair extensions which i really dont want to do. im 42 so i do have a couple of grey hairs but not many (i never see them ones go down the plug hole ha ha) youve got to laugh or i will cry! so i too have used hair dyes, it took me a lot of courage to use them as i was afraid that it would just make my hair loss worse but like you i still lost hair no matter what i put on it.
its funny that the achy joints muscle pain and now i have developed sjogrens has not upset me as much as loosing my hair, maybe because its a visual thing where as the pain is hidden.
make up on my face is now difficult due to the constance wet eye drops which i have to put in very often which makes my mascarra run LOL but its better than the painful and sore eyes ive been having. i look in the mirror and wonder who it is looking back at me it can make me feel quite depressed.
never mind chin up its christmas soon (groan) maybe ill get hair ext in my stocking.
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Dry eyes.. 
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