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[Lucyjo]

Thank you AnnieR & Knorman, don't know what I'd do without this forum xx

[Lucyjo]

Still feeling pretty rubbish! 3 weeks  into duloxetine  but have also had a really bad cold, so not sure if it's the pills or the cold  giving me the lethargy & dizziness & depression. If I feel no better at the beginning of next week, will go back to GP. I do think my burning mouth may be a tiny bit better though, since taking the duloxetine, so I don't really know what to do. Have a good weekend everyone x

[knorman]

It seems like you are between a rock and a hard place, which happens to a lot of us at the moment, that vicious circle that we do not know how to break. I think you may have to sit the cold out and then see how you feel. I don't know how the weather affects your mood (my OH says I take the weather personally!) but we are due some nice weather soon and hopefully that may help your mood.  I think a lot of us are probably struggling with low mood at present (I know this is different from depression), due to the fact we have not seen the sun in such a long time.

Once the cold goes you'll be better placed to see how you are and may find that your mouth feels even better, which would be brilliant. In the meantime, if you are able, hunker down and rest if you are able and spoil yourself a little. x

[Lucyjo]

Knorman you are so kind - thank you. Maybe things will soon get better - they can't get much worse!!
Take care x

[pamabz]

Hello AnnieR
I too am suffering from Burning Mouth Syndrome and I was interested to read that you are on Evorel Sequi HRT as I've just been prescribed the same HRT option this week.  I have to cut the 50 patches in half (so a 25 patch on Monday and I popped another 25 patch on last night) as I have endometriosis and my GP doesn't want to trigger anything off in connection with that.  I'm doing 4 weeks on half patches of Evorel, and then another 4 weeks on Evorel Sequi, so my build up is a slow process.
Do you mind if I ask what dose you are on and how many days/weeks it took for you to notice the difference in your BMS symptoms?  When I popped the first patch on, on Monday night, I woke on Tuesday morning to very little burning, I couldn't begin to tell you how happy I was!
But alas, that was short lived as the pain came back that evening and has been pretty constant since.  I stuck the second patch on last night and it does feel a bit better today but all the symptoms are lurking, just waiting I think to develop as they day goes on.  I know it's very early days for me but would love to know how you're getting on which would give me some hope that this is the remedy for me too.
Many thanks.
Pamela
x

[Daisydot]

Hi Pamelapitt I've been bad for months with sore tongue and burning mouth and I have my own theory lol.I picked up a packet of opal fruits at the checkout last week,I hadn't had for years, and that night watching tv I had a couple,I can't begin to tell you the difference in my mouth,by day two most of the pain and burning had gone and my tongue went from furry grey to a nice healthy pink again.I think I may have had a blocked saliva gland and the sucking and chewing of opal fruits may have reactivated it .I don't know for sure but something certainly worked day 6 now and my mouth is much improved.This burning mouth syndrome only happened after I started the oesrtogel coincidence or not I don't know but it'd be great if any of you fancy trying it to test the theory and see if it is the hrt causing blocked saliva gland

[knorman]

Morning Daisydot  my BMS started when I took HRT.  Fine for 3 weeks (Bliss, no more night heats and my joints worked and something in my mood lifted) and 3.5 weeks in the burning tongue, lips and dry mouth started.  It was so bad I stopped taking it, but it was enough to cause all sorts of problems for me.  Been left with some after effects still, but much, much better than previous.  I have CFS/ME, so my immune system doesn't work properly at the moment and it seems the HRT set something off. My maxillofacial consultant has now signed me off, but advised against taking HRT.  Gutted, I loved it and would take it like a shot if ok for me. I like the Opal Fruits theory (they will ALWAYS be Opal Fruits)! x

[Daisydot]

Hi knorman.good to see you back posting
Missed you.x
Quick run out and get the opal fruits lol.
I'm glad you've finally got some relief but so sorry it was at the expense of the hrt it's a hard battle for you.its a bit like the vagifem I know now that's what caused the breast pain so I've had to cut that right down and use all my other tricks but there's no doubt in my mind that was the problem it can't be a one size fits all mentality with drugs of any kind because new reactions will occur with people so you can't just say oh no that's not a side effect it's just maybe not a " known" side effect.anyway I intend to keep sucking away.teeth in or out doesent matter lol.keep well and keep posting xx

[knorman]

Funny you should say that. When I was having the problems with my mouth, which I KNEW was the HRT as it started to go when I stopped taking it, the HRT specialist who visited my Dr surgery said there was no way the HRT caused my symptoms. Yep, not a 'known' side effect!

Thrilled with my FitBit, but still not monitoring my sleep. I'm scared of it vibrating and waking me up if I do manage to drop off!  Take care xxx

[Maryjane]

Knorman fit bit stays silent at night 😊

[Lisa1966]

I also have a sore tongue 👅,only since starting oestrogel,I was fine on tablets,patches and sandrena gel xx

[Daisydot]

Hi knorman use your Fitbit to monitor your sleep and heart rate it'll surprise you and as MJ says it doesent do that you'll not even realise after a couple of times doing this that you have it on and simply sync with your app in the morning and it makes you feel reassured if anything you'll see.xx

[Daisydot]

Hi Lisa I predict there will be massive increases in sales of opal fruits lol.
I'm going to watch everything I take from now on and trust my instincts we can't all be wrong.xx

[pamabz]

Hello Daisydot,

That's great news you have managed to find a solution to your burning mouth, and even better your cure is a fine sweetie! lol I haven't had Opal Fruits for years, but I'm willing to give anything a try to get rid of this blasted misery and get back to a tongue, gums and mouth that feels normal again!

I've had this for a couple of months and have tried and tested the various potential solutions as per Dr Google, I'm now swimming in B12 and other vitamins, I've gone back on my acid reflux tablets as I thought acid was maybe burning the back of my throat and I've tried layering coconut oil on my tongue (waste of time, and I don't even like coconut!). I've seen GP, Dentist, Maxillofacial and Neurologist as I've had various weird things going on since the New Year so I'm slowly ruling everything out.  BMS was the last symptom I got, my first symptom was pins and needles in my chin, followed by burning through my whole body, then finally burning in the mouth, all of which I still have (along with various other symptoms).

I guess I'm at that "magical" age where everything seems to go pear shaped so I went to see a Menopause GP who was excellent and just speaking to her made me feel a bit better in general.  I'm hopeful HRT will work for me, but at the same time, I'm trying to be realistic in case it doesn't.  It seems with BMS you need to get to the primary culprit and that is difficult to diagnose, I'm hoping the menopause is my primary culprit and that the HRT will work.  If it doesn't work, then it's something else that's causing it and I've pretty much exhausted my options..

Not sure if it's helpful to anyone, I'm a newbie on this site and it's maybe been talked about before so apologies if I'm repeating old news, but there is one test I read about that might be able to help and it's HSV Type 1.  It's the herpes virus that can cause cold sores, etc... I've read that can cause BMS and people diagnosed with this virus has been treated with antibiotics and in turn, their BMS has disappeared.  I haven't gone down that route as I'm trying the HRT and I've never had cold sores, but apparently you can still have this virus without developing cold sores.  Maybe worth a google  ;o)  (I don't advocate googling in general, I try not to do that anymore as I turned myself into a quivering wreck a while back reading all the scarey stuff, but just putting that wee suggestion out there in case it helps anyone).
Enjoy the Opal fruits, and the burn free mouth (that must feel like heaven ;o))
Pamela
x

[Daisydot]

Hi pamabz and welcome and you post what you want to we can always learn from “ newbies” I still consider myself one lol.
First of all for any one reading you can report these possible side effects under the yellow card scheme I'm going to do just that later as I think it's important so we help other people,I don't care If its not a recognised symtom if it's happening to me then that's real enough for me and it could put other people's minds at rest.
Pamela I'm already a member of the U.K. herpes association based in London and their website has a wealth of information and I used to get the worst ever cold sores which was what drove me to them as I was worried I had genital herpes which in fact turned out to be v.a and it was advice from there that pointed me in this direction.There is masses of info on it and they're quite a sociable group with hidden Facebook account and they do regular meetings for people who are interested.I suppose ,like hiv,it's difficult for single people dating etc with these viruses so they tend to focus on helping with that quite a bit and I'd say don't be scared of google it's a massive boon so long as you use the info wisely if you know it sets your fears racing then avoid it it's that easy.
I hope your hrt does work for you and if not don't give up stay on here and talk to like minded women who will help you keep your sanity when your gps have long since given up on you.xx