Does anyone get a sore tongue?: Does anyone have... - Behçet's UK

Behçet's UK

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Does anyone get a sore tongue?

joannebond360
joannebond360

Does anyone have a sore tongue? Get ulcers on my tongue but sometimes it just feels sore all over. And does anyone have permanent sore patches? feels like an ulcer but is permanently there. Also does anyone feel breathless on prednisone? On 20mg I get very breathless. Sorry for all the questions.

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Okay, here goes then:

1. Sore tongue - no only ulcers (and mine are mostly on the inside of my cheeks and by my tonsils.

2. Permanent sore patches - yes but not in my mouth. I have permanent sore patches on my face, around the outside of my mouth and down the creases at the side of my nose. The first sign that I'm about to have a flare is that the skin cracks down the left hand side of nose. It is exceptionally sore and very bright red. Then that spreads down, around my mouth and back up the other side of my nose.

3. Yes, a number of us have experienced breathlessness and we've been given various reasons for it. I don't know about preds causing breathlessness but methotrexate is known for it, in fact there is a condition called methotraxate lung. At least two of us have been blue-lighted into hospital unable to breathe properly.

As many questions as you like, my darling, because the chances are that between us all we can come up with an answer. Although, you know we have to make it clear (as do you when you answer questions like this) that we are speaking from personal experience rather than from any medical knowledge.

Hope that helps just a little bit.

Hi. Thank you so much for that. My ulcers are mostly on the inside of my cheeks and near my throat, they are so painful! I do also get sore patches next to my nose. Didn't assosiate that with the behcets so that's good to know. I also get sore patches in the creases of my eyes but no actual eye inflamation as yet!

The breathlessness comes and goes from day to day :( hate it. Really scares me, I also get pulpitations. Wow. That's scary! All these medicines frighten me. Got the hospital in two weeks to discuss the next medicine option. Let's hope its not methotrexate :'(

Thank u. So new to all this. Its so nice to share symptoms and experiences.

I have become so much more confident in my illness since I found this site. Before I used to feel sort of fraudulent, as if I was just pretending. I didn't think I had it that bad - but, just like you, I had lots of stuff going on that I didn't know were down to the Behcets!

I'd had tests for lymphoma (cancer) arranged by my GP because of the sweats. They are really bad and every time I saw him I would mention them (it's rotted our mattress!) but once he knew it wasn't cancer and he didn't know what it was caused by he sort of deflected all my questions! Then somebody on here said that her vasculitis consultant said that these sweats were a very common symptom! And I've since realised that most of us experience them!

There's other stuff too, which I can't remember off the top of my head (oh, yeah, that's one of them too - forgetfulness!) but once I realised they were all part of the syndrome and I wasn't just a hypochondriac I didn't feel so fraudulent any more.

And because I don't feel fraudulent, I am more assertive with my doctors.

love

Di

Completely understand what you are saying! Omg, the forgetfulness is dreadful and I can't absorb information and even struggle with a conversation when I'm bad. I go blank and can't even remember what day of the week it is.

All you read about online is the ulcers and joint pain really. The sweats are dreadful. So glad its not just me. Before diagnosis I was convinced I had something terminal as I've never felt so dreadful. Amazing how this can make you feel so bad.

The more I read on here definitely makes me confident in it all and not so daunted by it.

Just trying to get used to knowing its for life!

Love jo x

ooohhhh Golly Jo and Di, it scares the pants off me.

Jo...youre so new in your diagnosis, further down the road than me, and Di you have been on this journey a while.

I have always been such a hell for leather go getter, and can't keep looking at that last sentance you wrote Jo "Just trying to get used to knowing its for life"

I've always been very positive but this really scares me more than anything ever has. I know it isnt the end of the world but its bloody horrible isnt it?

Sorry to be a misery, Jill

Hi Jill

It is so horrible. Like you before this I had a massive zest for life lots of energy and a busy life which is how I loved it. Now I feel down, scared, feel so ill and have anxiety which I have never had. Really is a life changer.

Get good days where I can be positive and bad low days where it does feel like the end of the world. Good that we have this place to talk, moan and ask questions.

Definitely is a releif once you have a diagnosis but its just the realisation of it all!

I am being a misery too, haha!

Hugs,

Jo xx

Misery loves company!

Seriously, it is a huge concept to take on board - that whatever you do, you are going to have this awful condition for the rest of your life. BUT you don't know what's round the corner - they might suddenly find a drug that suits us all and makes the worst of the symptoms go away.

Like you two I was filled with a zest for living and, in a way, I still am. That's what worries me most - there is so much out there to do and experience and I am not ready to have my life constrained as it is at the moment. Most of the time I'm fairly positive, although I haven't been just lately. I don't think either of you has met the real me yet rather than the moany old crone I am at the moment!

There are some positive things that have come out of it for me though - and I suspect for you too, if you think hard enough.

I had to give up my midwifery career, which I adored BUT as that door closed, the door to working for myself opened. I had always wanted to be a writer and for five years or so, that's exactly what I did. I worked as a freelance writer, mostly writing websites for other people but doing other writing too (link at the bottom). Then my concentration ran for the hills and I could no longer write for any length of time, so I taught myself metal-smithing and made my own jewellery. I had quite a successful little business going for a while too. Another link!

Now I can't play in my workshop for very long so I've gone back to an old love - knitting. Like everything else I do, I do it to the exclusion of everything else and now I'm making rather beautiful beaded lace shawls.

I sit here, next to my kiln and surrounded by enamels and I think that might be my next move - creating enamelled shawl pins. I can do enamelling sitting down and there's not a lot of metal-bashing needed to make shawl pins. In my mind, I'm planning to sell these shawl pins on Ravelry to similarly obsessed knitters.

See what I mean? Your enthusiasm for life will come back again, just be patient with yourselves. I don't know how old you are but I suspect from your names that you are my daughter's generation - although Jill is a difficult one, you might be as old as me, you poor old stick!

Now I'm going to wallow again xxx

- amazon.co.uk/Time-Write-You...

etsy.com/shop/disandland/so...

di, ooooh i like your etsy jewelry! very lovely!!! and a book too? wow you are amazing! you are inspiring!

hi,just looked at your jewellery. i think that it is fantastic you are a clever girl. you are right in saying that as one door closes another one opens. i too have had to make changes to accomodate this bl..dy illness. i have found i have a flair for designing and making clothes and slowly gaining, through word of mouth several clients who are happy with my outfits and enjoy having bespoke garments which are totally unique to them. i have found that i can lose myself whilst creating and sewing and dont find it too exhausting as i am sitting most of the time. i am hoping that i will be able to make a small living doing this which i think will help keep my spirits up because as you probably know we need all the help we can when we do feel down (which i fight every inch of the way). having a few health problems at the moment though so not doing too well. i refuse to let it beat me though. take care everyone

When people pay their hard earned cash for things you have made with your own hands it is really wonderful. Lots of my customers would send me pictures of bracelets and things they had used my etched clasps on; in fact, I've just had a note from a girl I sold a copper clasp to over a year ago! She is so proud of her work, you can read her excitement in her letter and to have been a part of her process really blows me away

I do miss it. I was completely self-taught too and I think the aspect I miss most is using my brain to work through design problems. I don't know if you saw the Onwards and Upwards pendant over there? That was a commission from a lady who really missed her mum.

The pendant is teardrop shaped to represent the client's sadness and it is etched with two of the mum's favourite sayings - 'onwards and upwards' on the front and 'bugger this' on the reverse. Inside there is a very good quality amethyst, her mum's favourite gemstone, which also happened to be the stone that represented her birthday. The stone just peaks out of the pendant, which doesn't open. It's meant to symbolise that by locking these special memories and aspects of her mother's personality in her heart, then she will always live on in her daughter's mind and heart. And THAT is what I miss :-(

Currently I'm knitting for England - it's something I can do quite easily because to knit I just have to sit in a comfortable position - so far Behcet's hasn't taken that away from me (well not completely anyway).

There is always something you can do, even if it's just a very tiny thing, to ease your pain and suffering and, perhaps more importantly, to give you a sense of fulfilment.

Your clothes design and making sounds fabulous; it is certainly something I couldn't do and I know that for a fact. I come from a family of tailors and dressmakers and whilst I can do decorative sewing and quilt-making very well indeed, I seem to have a real blind-spot when it comes to garment construction and household sewing!

Anyway, I think I've written enough - I found out the other day that there is a word limit on here and I suspect I'm very near to that right now.

Take care my lovely

Di

lovely to read your reply, i must say that you sound a very sensitive and caring person. when i started sewing i only had a basic knowledge of dressmaking and through perseverance and trial and error (and many mistakes on the way) i improved vastly. it is a wonderful feeling when someone likes what you have made and come back for more isn,t it?. i too love knitting but the sewing has taken over for the time being. it has brought the outside world to my confined space and helped my determination and stubborness not to let this bl..dy illness take over my life. take care

Oh boy, am I in the doghouse today! The OH has found the paypal account. It's not a pretty sight! I wish he could understand just what it's like to be housebound and for your horizons to be just what you can see through the patio doors one way and the kitchen window on the other.

He is what my mum would have called A Good Man and in all honesty (and to nick a particularly cheesy cliché) he is the wind beneath my wings. His quiet strength and the knowledge that he would move heaven and earth for me is what helps me to remain positive. But he was a giant in the computer industry back in the day and I think he's still hard-wired to those bloomin' things! There is no place for fuzzy logic in his world. Simply doesn't compute.

So to try to get him to understand why I sometimes go over the top on my 'creativity of the moment' is a lost cause.

Hey ho

Yes Jo, my GP is pushing me not to get hung up on getting a diagnosis....to concentrate on getting some treatment.

She's marvellous and I am so grateful to have such a great GP, however as you say the diagnosis makes it permanet.

Having said all that, its early days for us and I have great faith that we will fell better when at least some of the symptoms are dealt with.

Do you spend a lot of time resting? I seem to remember you have young children..my baby is 18 and I am not back at work yet and feel like death if i dont spend quite a bit of time resting.

Yes its odd that there seems to be quite a few "career women" hit with this...or are we just the type of people to seek others out to chat to.

Love Jill

Golly Di...you were writing your post as I was writing mine.

I will buy your book on Kindle! I am so impressed with the beauty of your jewellery....however I would kill for a pair of socks that I saw on the other post of yours.

Its very odd becuase I went to Art College and declined to pursue an offer of a degree in Textile design in favour of becoming a police officer.

I then followed a buinsess career after having my daughter.............how marvellous that you managed to tap into this creativity.

I am exhausted today but you have totally inspired me Di.

How long have you been retired?

(Jo its time to unleash a new life methinks)

love Jill

You do sound still full of life and enthusiasm and that's fantastic and really encouraging to us! Well done on your business and writing, what fantastic acheivements!

I have thought of positives! How amazing my husband and family are and how they have stood by me. And you are right, we don't know what's round the corner! Thank you, you have really cheered me up :) :)

I am 36!

No more negative thoughts for me today :)

You should design some behcets jewlery! Medical bracelets or charms or something :) you sound very creative.

Jo x

You are two years younger than my daughter then - whose name is Jo by the way ;-)

I think it's more a case of being obstinate! Tell me I can't do something and I'll prove that I bloody well can - I must be a right pain in the arse to live with but another of my positives is a brilliant husband. I didn't used to think he was brilliant, back in the day, but I don't know what I'd do without him now...

Jill, Once we get some treatment we will start feeling better and have good spells where you feel like your normal self. In the summer when I was on steroids I had glimps's of the old me and loved it. I am exhausted today too despite being on the steroids again bit have come down to 15 mg so maybe that's why. Got the hospital in a couple of weeks to discuss the next medication options. I do have to rest! Some days I'm ok and others sofa bound. My children are 19,16 and 6 so have good help :) luckily I run a business from home with my husband because I could not work at the moment.

I think your right! Just strong women dertirmined for answers and to get better :)

Hope they start your treatment soon and you start to feel better :)

Jo x

Very good, positive way of thinking, I like it! It's amazing in life what we can go through and still carry on and find something good in it all :)

Xxx

Jeez Di could you tell me what face cream you use as it obviously has age revering properties!!

taken before the steroids :-( I never use skin cream - but I never wash with soap and water either. I use simple wipes or nivea wipes and that's about it really. I'm 58 by the way. I always think that fat faces age better - the fat fills out the wrinkles!

Hi. I have constant ulcers and sores in my mouth. Sometimes they are better than others but never seem to go away. The best thing I have found to take to ease the pain is bonjela. I also have lots of sores mainly on the palms of my hands and lower legs. I have been given fucebet cream and diprobase to apply regularly. I have at long last just got rid of four ulcers that have been on my leg for two years. They are still sore and do occasionally break down but are not as bad with regular creaming.

Hope that helps.

Lorrie

Hi Lorrie.

Thank you for that. :) have thought about bonjela, will get some. So painful to even talk and eat sometimes! Will make a note of the name of those creams too.

:)

Jo x

Hi, just wanted to share my experience with you all that suffer severe ulcers. I started suffering from BD about 12 years ago, the worst is the ulcers, mouth and genital. They can be so severe that I can't talk, eat drink or swallow, i am a people's person n can talk for England n it gts me really down when I have the ulcers. I also have severe pain when I pass urine. Luckily I get emla cream for genital ulcers n xylocaine for my mouth ulcers, these are general anaesthetics n numb the area n are far better n stronger than bonjela n believe me it works. You can only get these on prescription. Pls try it, another 1 that I would recommend is Manila honey, believe me am an expert when it comes to ulcers. Let me knw how you get on. Take care x

Sorry i meant manuka honey

Thank u for that info, will definitely try the honey :)

Jo xx

Hi Joanne

I'm supposed to be working but starting reading all the comments and got 'hooked'. First of all yes I get the sore tongue - I was wondering if I had small cracks instead of ulcers. Haven't got any good remedies except pain relief and using children's toothpaste and brushes until the flare goes (my mouth and gums are usually inflammed at the same time as my tongue).

Secondly, as I said I was hooked readying the comments. It does make you wonder if this disease attacks people who have a zest for life - do we wear ourselves out? (Joking - in part).

I also work from home - what sort of business do you have?

Also being determined and positive is the thing which is keep us going.

Cheers

Lesley

Les, I am convinced by my time here and my new friends that this brutal, horrible, nasty, pigging disease (yeah, I'm angry ;-) ) chooses strong, purposeful people who love life and try to wring every last drop from it.

Hi Lesley. Didn't think of that, could be small cracks that make it sore. Not nice, just another horrible symptom :(

We have a transport company which I do the books and paperwork, wages etc. My husbands fab he does it all if I'm too poorly. What is the nature of your business Leslie?

Think that is the case with this horrible disease! We all seem to be saying the same thing, had a massive zest and an amazing outlook on life and just got steamrolled with this! :( not fair is it?

Jo x

get the sore tongue but I take mycophenolate not methatrexate found it works better for me with enbrel injections

Hi Jo

Yes, like you I get a sore tongue! For me it usually means a flare up is just around the corner. I also get large white spots (yellowish sometimes) which are very sore but unlike my ulcers they seem less painful when I drink etc. For me the pain is akin to having eaten a really hot chilli pepper which I do enjoy and the hot burn you get afterwards. Sadly, the hot burn lasts 7-10 days!!

Dave

Think your right with the tongue just before a flare up, seems to be the pattern for me too. The ulcers are so painful, sometimes I can't talk! Husband is very happy, haha. We all go through it don't we?

Jo x

Agreed!

i actually get ulcers on my tongue as well ask cheeks, throat, gums and nose xx

i was also self emp as a massage therapist, iv had to stop due tot he arthritis, just physically too painful for me to continue. im doing a teaching degree though, so going to go down the teaching route, still in the holistic industry but not as hands on with clients, less strain on the joints. well fingers crossed anyway lol xx

OMG, I did Massage for 14 years and had to quit because of my joints.

I miss it, but am not strong enough.

I was also thinking of other ways to serve!!

I wish you well .

Many blessings

Hi. Thanks for your reply, I get ulcers in my nose too, they are so painful!

Well done on your teaching degree, that's brilliant!

Jo x

Yes.

I keep thinking its something I've eaten but I can't figure it out!

I don't get sores anymore but when i flare i notice the soreness !

I hope it gets better!

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