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[knorman]

Keep remembering those good days and they will help you get through the bad, it helps when you know for a fact that not every day is going to be as bad. Going on experience, I think it is a good idea to cut down on the Amiltriptyline. I had made the link even before seeing my dentist and it made a difference straight away, the stinging lessened. It may be worth seeing your dentist to see if your mouth is actually dry, mine was roof of mouth and my tongue. Horrendous! I didn't realise how severe the lack of saliva was until I saw my dentist. Try the Xyilmelts, they made a big difference and helped the anxiety when I could feel some saliva coming through.  Cheapest I found online is a company called Mouth Ulcers Shop in Portsmouth and very quick delivery.  I had the mint free ones.

Not sure if I mentioned this in my original post, but I have CFS/ME, which is why my body reacted against the HRT as it did. I do not wish to pry, but wondered if you had any medical condition that may affect the HRT? However, I am sure it is the Amiltriptyline making it worse, no the HRT, but it may have to be a process of elimination.  My Mother-in-Law had to stop taking Amiltriptyline as she was unable to cope with the dry mouth.

Amiltriptyline came up as if there was a spelling error, I spell checked it and the suggested alternative was 'pantyliner'! xxx

[pamabz]

Knorman, thank you so much for replying to me, your words of kindness made me cry and the pantyliner comment made me laugh so thank you 
You're right, I need to remember the better days, although I have to admit I don't get much of those.  I never have a day when I'm pain free, but I do get days when the pain and discomfort is bearable, so I need to hang on to that thought.
I'm not aware of having a medical condition that would clash with the HRT, I have two small ovarian cysts and endometriosis so I made the Menopause GP aware of all that and was glad when she said I could still try HRT.
The only niggling doubt I have is the pins and needles in my chin (for which I have the Amiltriptyline) as I haven't managed to get a confirmed diagnosis for that and I wonder if that is what's causing the BMS, but none of the medical professionals seemed to link that to the BMS and burning throughout my body so I guess not...
Anyhow, I'm going to persevere with the HRT as I haven't been on it for very long, less than 2 weeks, and half patches.  Maybe I won't notice a difference until I go on to full patches, it's all a guessing game isn't it.
For what I've read, BMS takes quite a few months to sort itself out, roll on this time next year! lol...
Thanks again, you have been a wonderful support.
Have a good day.
Pamela xxx
PS Will give the Xyilmelts a go.. 

[knorman]

Morning Pamela

I hope today is going to be one of your better days, its certainly cooler today, which I am very pleased about.
Is the lower dose of 'Pantyliner' helping the dryness?! Hopefully the HRT will be kicking in, but you are right,
it is a guessing game and pretty much a waiting game also.

The consultant that I saw did tell me that I would still experience strange sensations for a while (and I do, but
nowhere near like I did) and I am wondering if your pins and needles is one of those 'strange sensations'. I still
occasionally feel tingling in the area immediately around my lips and going down towards my chin, but I do my best
to ignore it, which I think really helps, but easier said than done, I know!

Enjoy the cooler weather today xxx

[pamabz]

Hello Knorman
Lovely to hear from you 
Sadly, today's not a good day for me, nor yesterday. I dropped down to 10mg Amiltriptyline 2 nights ago and as a result I've had very little sleep, between mouth and tongue burning and also the burning got worse in my arms and legs again so all that kept me awake most the night.  Been on HRT 2 weeks now but will be on half doses for 8 weeks in total so not sure I'm going to see any improvement for a while? I do get the odd day when I'm feeling a bit better so I need to hang on to those. I think I will need to stay on the Amiltriptyline unfortunately until I get on to the higher dose of HRT as I won't be able to function on the sleepless nights, my working day is quite long.
Every day I wake up hoping I'm going to start feeling an improvement but so far that hasn't happened. If the HRT doesn't work in the next few weeks then I think I'm going to be a medical mystery  was it a few months for you before you started feeling better?
Will let you know how I get on, thank you for being there.
Take care lovely lady xxx

[knorman]

Sleep is so precious even without having to go to work, so fully appreciate the anxiety around not sleeping when you have a long working day. I hope you have some understanding colleagues to laugh along at the absurdities of the meno with you! I was on low dose Elleste Duo and after 4 days I noticed an improvement in my joints (an unexpected, very much appreciated bonus).  I also noticed a shift in my mood after a few days.Evening heats disappeared after 10 days and by 3 weeks the facial night heats disappeared followed quickly by the upper body night heat. When I had to stop taking it after 3.5 weeks (I cried), my symptoms came back in the order that they last appeared, i.e body heats came back first. So I think mine worked quite quickly, but my s-i-l took over 3 months to see an improvement. I was told by my Dr that it would take up to 3 months possibly to see an improvement, so hang on in there.  It may be at some stage that you need a 'tweak' and there are ladies on here that are extremely knowledgeable about HRT if your Dr is not so helpful.

I hope with it being a bit cooler the last few nights you have managed that golden elixir that is sleep Zzzzzzzz and always, always here for a chat xxx

[knorman]

Morning Jeanie and what a beautiful morning it is. I managed to sleep without any sleeping tablet, a minor miracle!  Gosh, we have had an almost identical experience on HRT, thank you very much for your post, I had found it difficult to find anyone who had had the same issues. No one in the medical profession had heard of anyone it had happened to! I resisted HRT for 2 years until close friends and family begged me to go to the Drs, as by November last year, I wouldn't have cared if I walked under a bus. However, I  have CFS/ME and understood it was something I shouldn't take and so it proved! Like you, even though not able to take it, I also think it reset something, as I never got back to the awful place I had been in prior to taking it.  Yes, all the heats came back, joint pain came back, but since sorting out the health anxiety and panic caused by the tongue and mouth issue (it is still ticking away ever so slightly), I've noticed that I haven't plummeted to the depths of despair I was in before HRT, a lot of which I think was down to severe sleep deprivation as well as hormones. Something is changing finally with the heats also.  The evening ones have been gone now for a few months now and even the night ones are changing, so finally after 4 years of intense symptoms, with the last two being appalling, who knows, I might be coming out the other side too? I'm still having issues with my  nose (that's a whole other thing!), which I think HRT also made worse, but appointment with ENT 1st August and hopefully have some answers. Having someone to talk to is so important to us all at this bewildering, upsetting time and in lieu of having the right medical people to talk to (my maxillofacial surgeon was brilliant at helping me mentally and got me eating and drinking properly again, although I still haven't been able to touch the redbush teabags since, see even, the teabag connection!) this forum with all its wonderfully kind, knowledgeable women has been a godsend. I hope you manage to see your consultant soon and find the answer that you need, but it sounds as if you have done a grand job of helping yourself already.  That gut is a mighty powerful thing! Have a great day Jeanie and hope Pamela, Lucyjo and all enjoy the lovely weekend day too. x

[pamabz]

Dear knorman,
Thank you so much for your kind post the other day, you have been such a support to me these past couple of weeks and I'm so grateful, thank you 
Last week was not a good week for me, I struggled big time with my mouth and tongue, along with very little sleep so work was hard going and I think I only had one decent day.  However, I did manage to get some sleep over the weekend so I feel a bit more upbeat today.  Mouth and tongue still painful, along with numbness in my hands and the burning through the body but I'm optimistic this is going to be a better week for me!  I will give it a few days and let you know how I get on 
Jeannie, your posts are an inspiration too, I'm learning so much about the menopause.  I can't help thinking to myself, I'm 50 years old how can I not know this stuff?!?!  But then I realize it's because, in my circle of family and friends, it's a subject we never talk about.  It's not deliberately avoided but no-one I know is going through any debilitating side effects, so when it hit me like a steam train at the beginning of the year, it totally derailed me and sent me into all sorts of despair and anxiety. I had no idea what to do or how to cope. However, the dark days are getting fewer with the help of my very supportive hubby, this forum and my new virtual friends!  You wonderful, kind ladies has helped me understand so much about what the body can go through, and this forum is brilliant for new people like myself as this is real life.  My menopause GP told me that although I didn't have the classic symptoms of menopause, I still qualified for the badge, yippee for me! lol... my regular GP totally dismissed it, nothing to do with menopause he said... hhhmmmm, I think he would have a change of heart if he read this Forum!
Knorman, yes I had a giggle when you asked about my work colleagues, as I've been told I'm going to be the "go-to" person if or when they start getting random symptoms... God forbid, I hope I'm not an expert on all things menopausal by then, I can barely cope with the symptoms I've got! lol..
Have a wonderful day knorman and Jeannie, big virtual hugs to you both xxx

[Dancinggirl]

Regarding the burning mouth problems, I have a friend who has suffered for some time over this and in the end it was her dentist who referred her to Guy's Hospital for tests and they discovered she had a slightly under active thyroid.  Though her GP had tested her thyroid function, it had come up as ‘within normal range' but at Guy's they thought the slightly low thyroid function was an issue and she is now on Thyroxin and doing much better all round - burning mouth improved and feeling less tired!!! Sadly the NHS have very dogmatic guidelines regarding thyroid levels so it seems thyroid function is often overlooked when symptoms as mild!! DG x

[pamabz]

Thank you Jeanie for your reply, yes I do believe BMS is the worst thing I've ever experienced health wise.  As you say, I need to trust my instincts and do what I feel is helping but it's so difficult to work out what helps and what hinders... however, I'll persevere with the HRT for a while and see how I get on.  I'm so glad to hear you are feeling better, you must be so relieved to get rid of the breast and mouth pain and be relatively pain free, that must feel like bliss after what you've been through... long may that continue for you so you can keep the cuddles going with your cat, pets are just the best for unconditional love and a great distraction from the stresses of life 
Dancinggirl, I've been wondering about my Thyroid too, I can't remember getting it checked so I'm going to ask for that next time I'm at the Docs.  Funnily enough, like your friend it was also my dentist that mentioned burning mouth syndrome to me, the GP only discussed it with me when I brought the subject up. Oh well, time will tell how I get on, for what I've learned about BMS, I need to have patience as it seems to be a long haul symptom.  Not sure what will test me harder, the BMS or the patience bit! lol..
have a good day ladies..xx

[knorman]

It's rather cruel that at a time in our lives when we need this patience, a lot of us haven't got it anymore, what with lack of sleep and lack of 'nice' hormones! I had my lovely 3.30 am awake today, definitely an inside heat, not an outside one and not been able to get off again as had pest control man here for 8.30. If only it was as easy to rid ourselves of menopause symptoms as it is rats. Been an outbreak in our area and I don't like killing anything, but they were starting to come into the house. Jeaniewigs, we could have done with your cat! Hope she is still managing to have snuggles. The hardest thing when I first started going through this symptom was not having a medical person to speak with that could help me, so you are not being selfish. My consultant has confirmed he is still on hand if and when I need reassuring and I wish I could share him with you all as he is brilliant at sorting the anxiety.

Pamabz, Dancinggirl has already mentioned this, but the routine thyroid function test does not go to a deep enough level, so hopefully you will be able to access more than a routine check.

I'm going to have to go girls, sorry, my brain is not functioning.  Hope you all have better days. xxx

[Lucyjo]

Hi everyone, I've not posted for ages! My BMS is dreadful at the moment. When I started the duloxetine in April/May I thought it was getting a bit better but I think I have now got used to them & they are not working. Really fed up - eating wine gums & drinking iced water. I can't imagine having this for the rest of my life x

[Lucyjo]

Thanks Daisydot - you seem so upbeat! I feel a total wreck! I hate this menopause so much. May I ask - do you take HRT & if so which sort?

[ibrjohnson]

I had it pretty bad last year.  Mouth dried out and tongue burned.  I even got blisters and showed up in the ER twice.  Freaked me out!!  For me, b12 and D3 brought back the saliva.  I had to quit coffee and sugar for a bit.  I am back to decaf now.

[Lucyjo]

Daisydot you poor thing - and here I am feeling sorry for myself!!!! I just think I'm lazy & want a magic pill to make everything ok! Caring for my mum at the moment & looking after my own family & business all taking it's toll along with the menopause especially the BMS. Will try to cut different things out of my diet & see if there is any improvement. Sorry to moan xx

[pamabz]

Hello LucyJo (and Knorman, Jeanie, DG and Annie  )
I too have been suffering from burning mouth for several months now so I feel your pain (quite literally!) as it is absolute misery.  Every day I would wake up to either no improvement, or very little improvement only to go back to full on burning the following day.  I had it in my tongue, the roof of my mouth, my gums and my teeth.  I had other weird stuff going on in my body too but the BMS was by far the worst symptom, and the most distressing.
3 months ago, in desperation, I paid private to see a Women's Health Specialist GP as my local GP was adamant my BMS, along with the intense burning/heat through my body was not Menopause.  The Menopause GP was wonderful.... kind, compassionate and told me that, although I didn't have "classic" menopause symptoms, she still believed the menopause was what was causing all my pain and distress.
She started me on half patches of Everol Sequi for 8 weeks, and I went on to full patch 5 weeks ago.  I'm glad to say my BMS has now improved to about 80% reduction in pain.  Initially I would get 1 good day and then 4 or 5 bad days, but the good days then started to outweigh the bad days and, like I say, I'm now about 80% better with my mouth.  I still have a stinging tongue most days but I think that's another problem I have (was recently diagnosed with Atypical Trigeminal Neuralgia and I think that is affecting my tongue and gums) but if I didn't have the nerve problem in my face I think my BMS would either be gone, or to a point where I wouldn't notice it most days.
Obviously I can't say for certain if the HRT was the reason behind the improvement, it may just have ran its course, and of course I could get it back! but I just wanted to share my story in case it helps you, or anyone else suffering from this burning h*ll.
I think you mentioned before you're not on HRT and the Doctors weren't much help in that matter?  I had the same kickback from my GP but when I went on the HRT and had to go to my local Health Centre to check my BP before they would repeat my prescription, I booked an appointment with the Advanced Nurse Practitioner.  I was amazed when she said she was suffering from some of the same symptoms as me, including a burning tongue.  We had a great chat and it was such a relief to speak to someone going through the same thing... anyways, all to say, it might be worth a chat with an ANP at your local health centre?  I do believe had I gone to her first I might have received more help from my local GP as she could relate.
Hope some of this helps you LucyJo, and I hope you are feeling a bit better.
Take care x