Cold Sores

[PearTreeBoat]

I know a lot of people think people that suffer with cold sores are some sort of leper even though around 70% of adults carry the virus, just most people are lucky enough not to show any symptoms or have very mild symptoms.

Unfortunately for me I get horrendous outbreaks and am currently having the worst outbreak I've ever had. My entire top and bottom lips are covered in large blisters which also spread down to my chin.

I've been prescribed 2 strong painkillers (one being specifically for nerve pain) as well as a double dose anti-viral. I'm also being sent for more blood tests as the doctors are concerned about both the frequency and the severity of the outbreaks I get.

I had full bloods taken last year to investigate and everything came back clear.

Has anyone else been/going through anything similar and can give any advice on what else I can try to minimise the outbreaks.

I lead a fairly healthy lifestyle, always room for improvement but keep active with the gym and running and eat healthy 80% of the time.

I'm now just at my wits end having just ruined another weeks leave as can't go out as not only do I look awful but am struggling to eat or drink anything.

Surely this can't be normal.

Going gluten free stopped mine completely.

Think antivirals can be taken as a preventative

Also read that taking lysine can help

You can take the anti-virals as a preventative dose daily.

Gluten sensitive

I used to get loads as a child / teen now I dont suffer so much business come up from hormones and if I get any kind of greece near my lips.

Quote correct grease *

Hi OP.
I totally feel your pain. I get such bad outbreaks and I try to explain to people how my whole face burns in pain - it's agony. I have done my whole life and was hospitalised for 3 weeks as a baby when they started spreading down my throat. My doctor says for me, it's like experiencing shingles every time.
Several years ago I took preventative tablets (acciclovir) for a year. Since then I don't get outbreaks nearly as often. I also took them for several months before my wedding which stopped them for a long time, too.
It is really is horrid. Best of luck.

I used to take an anti-viral daily as a preventative but as they weren't preventing them my GP took me off them and gave me a different one to take when I have an outbreak.

The gluten thing is quite interesting, I also suffer from IBS and have recently noticed a link between that and when I eat bread (don't eat bread/pasta etc all that often just by coincidence but did eat loads last weekend and had a really bad IBS flare up).

I've got another GP appointment next week to discuss going back on a preventative so will bring up the gluten thing and see if there could be a link there.

I'm so lucky that my work, friends and OH are all so supportive of this and don't just dismiss it but it is really getting me down.

I get them, normally triggered by the sun, particularly in warm climes Going gluten free made absolutely no difference for me. I now always have a box of Aciclovir to hand and start doing myself up as soon as I feel the onset.

@marmite133 exactly, I describe it as somebody constantly whacking my face with a bunch of nettles whilst somebody else is holding a heat lamp against my mouth.

I'm averaging about 6 bad outbreaks a year at the moment with always 2 of them being really severe and all lasting a good 2-3 weeks.

The sun can trigger it. Use sun cream for lips.

dosing myself up!

I think I'm one of those unfortunate people that everything seems to trigger them. Sun, run down, change in weather, not enough exercise the lot!

I want to explore the gluten (or possibility of any other particular food group) being a trigger, even if it just gives me a bit of hope for a short while as cannot think of any other changes I can make.

Mine are also triggered by the sun. So three days at the beach did it this year. And I always get them if I go to a festival and also the first hot day of the year. I don’t get them as bad as you though, they sound absolutely horrendous. It’s hard to explain to people who don’t get them how awful they are.

Also, re ibs, I did the fodmaps diet to find my triggers. Doesn’t work for everyone but would help you see if you’re gluten sensitive.

@PearTreeBoat that's sounds horrid.
I did go GF for a time (and I've tried cutting out other things) but it made no difference for me.
Such a shame the preventative didn't work for you. Perhaps they could try a higher dose?
Once I've got them, nothing helps. I could punch the next person that asks if I tried coldsore cream 😂
I'd really like to take part in a study or some research. From what I've read, there are different types of the virus and it seems that some people suffer from an extreme type and such need stronger treatment. I have friends who get them who find them no trouble at all - it must be a different strain.

Also, running can trigger mine as I breathe through mouth. Tiny bit of chapped lips can set them off. Have you tried lip balm before running?

I find Lysine really helps. I take it daily and several times a day when I have an attack.
You have my sympathy. They are horrible things and the nerve pain can be really horrendous.

I feel for you. I used to get them really bad and still do when run down or out in the cold or been crying etc.
Feel free to swing a pinch but using ice on them if you feel them coming on helps me (ducks for cover)! I realise yours are worse and this doesn't prevent them but maybe worth a try to minimise them as much as you can?

Oh peartree I so feel for you.

I stopped being a bridesmaid for my sister because I had an outbreak that went from the top of my house to all my lips. I was mortified.

I had them terribly all through secondary and at university.

Had an auto immune condition and never ever have had one since going gluten free.

Strong sunlight and orange juice can also trigger them.

I am so sorry you are going through this. I truly hope you get a resolution soon. All I can say is that is sucked.

Ask for a blood test re gluten - they should be able to tell is your levels are through the roof.

zinc tablets help mine - I find I get more when I am generally run down as well.

Thank you so much everybody for your advise and also for just letting me know I'm not alone in having them this bad.

Everybody else that I know that gets them just gets a tiny little one in the corner of their mouth and they obviously struggle to understand just how horrendous they can be.

You've definitely given me some new paths to explore, even if none of them work for me it's giving me some hope that maybe there is something out there that I can cut out or change in either my diet or life that may help.

My mum was diagnosed with lupus a couple of years ago and as I've only got 2 of the normal symptoms I've never been diagnosed with it (you need to have a minimum of 3 symptoms) she is convinced that my cold sores have some sort of link to lupus as it is a hereditary predisposition disease.

I really hope you can find out some pieces to the puzzle.

They really are so debilitating. I am so glad I don't have them now.

Stress, sunlight, OJ and peanut butter seemed to trigger them but honestly once I was diagnosed a coeliac that was it.

My mother had autoimmune conditions and it was a specialist how asked me about family history who got me on the right path. I suffered especially as a teen and during university.

Wishing you wellness. And yes others don't get it.

I’m not celiac so the blood test was useless. I’m sensitive to gluten though as it effects my bowels badly