TMJ Oesteoarthritis Anyone else suffering? :S

catrocks1982

I have been suffering from severe TMJ disorder in my jaw for about 3yrs after it was broken 12yrs ago, oesteoarthritis has crumbled the jaw joint away and i will need a full jaw replacement.

I am on a liquid/soft diet, have to drink through a straw and live on tramadol tablets, it really gets me down at times as it affects all parts of my life from the pain to not being able to eat what i once enjoyed. I have lost over 3st in weight so have very little energy, have had to stop work due to the weight loss i have been told to do very little excersise.

Can anyone relate to this? How do u cope with life?

Cat x

Folara

I have TMJ which I think is linked to my fibromyalgia. It's a real pain sometimes and can give me earache too.

Thankfully it's not as bad as yours sounds but unfortunately I also have OA in my hips, knees, spine and shoulder so can totally relate with the pain and pill popping. There are lots of us on here who suffer in different ways and have to live with the pain and tiredness etc.

I'm not sure really how I cope as such, just try to take each day as it comes.

Fols x

catrocks1982

my friend sufferes with firbromyalgia and is in terrible pain, so really feel for you there. I try to have a positive outlook but sometimes i really just get fed up with the pain, the lack of nutrition in my body and lack of mobility in my jaw that even stops me yawning

I have only just found out about this forum and thought i would join to see how other people cope with this and hopefully help others too

How long have you been on this forum?

Catx

stickywicket

I've had arthritis in my jaw for years but I get little pain. The only problems arise with dentists and anaesthetists. Much as I love my cups of tea it must be dreadful to be on a liquid only diet. Can you not even manage soft fruit or poached eggs and the like, catrocks1982? It would drive me crazy. All credit to you for coping with it.

By the way, If you look at a person's name on a post it tells you when they first joined. It's not an infallible guide to how familiar they are on the forum. Some of us are forum junkies while others put in less regular appearances.

catrocks1982

Stickywicket thank you for your kind words, i manage when i can open my mouth to fit a tea spoon in :S. Unfortunetly it jams alot as the ball joint part has crumbled away so its two bones rubbing together when my mouth opens.

I manage very soft things no chewing allowd, its limiting and frustrating. I cant go to the dentist now as i cant open my mouth wide enough. I have the surgeon again on the 28th of may after two failed arthisentisis's to see whats getting done next.

They say im too young for a full jaw replacement

Folara

The ole 'your too young' thing again eh? Don't you just love how they can judge what is right for us. They won't do my knee because I'm too young but I can't walk because of it.

How on earth do they expect you to carry on as you are? You really need to insist that they do something more for you. Tell your surgeon how it's affecting you mentally as well. I really feel for you, especially as I love my food.

This is a great forum where you will get lots of support and help from like minded (and bodied) people.

Fols x

catrocks1982

Fol, How old are you if you dont mind me asking? Its terrible that in this day and age that people are left suffering when so many surgery procedures can be done to rectify and correct the problem :S

Yup they seem to think they know whats right but when you lose 3st and in constant pain with the little movement, im on 8 tramadol tablets per day so cant work as i cant drive on them, they make me very sleepy.

I also have very little energy as i cant eat properly, has a big affect on day to day life. I do feel that when it affects daily tasks and life then age should not come into it, the operation is needed and should be done.

I have a second opinion on 28th of may as i have had 2 failed arthitsentisis's.

The ball joint of my jaw has totally crumbled away so its 2 bones rubbing together an touching the nerve so you will understand the pain.


Catx

tjt6768

Hi Cat, just wanted to welcome you to the forum.. Sounds like you are really having it tough..
I don't have much of an appetite due to the meds but I would really miss the stuff that I do eat...
The Ski mousse things are wonderful, and easy to eat..

I have also been told the 'too young' rubbish. I need both knees doing, have had trouble since a teenager and had multiple 'clean-out' ops, but they need replacing. I am 43.. :roll:

Hope you have a decent night and I am glad that you have found us

catrocks1982

Hi Tony thanks for your welcome

I dont feel so alone now, so im glad i joined the forum. Its terrible the to young thing as i said to Fol if it needs done to improve your life then it should be done. I am definatley going to speak to my surgeon on the 28th of may as its affecting how much i can go out, due to lack of energy and such like.

I love them, and also eat a good few muller yoghurts lol, but i only manage about 1000 calories per day if im lucky which isnt enough to keep your body doing the basics. I have been referred to a dietitian who says im doing all i can, not much else i can do its down to the surgery now.

I am really glad i found this forum as i would like to help others as well as getting advice. Just the feeling that im not alone has lifted my spirits

Catx

magenta

Hello Cat,

Welcome to the forum

I joined about 4yrs ago. I've gained alot of knowledge from the people on here and made alot of friends too. I hope you get as much out of the forum as I do.

I have TMJ and severe OA in both sides of my jaw. I used to post on the forum about these things and there weren't alot of people about with the same problems but it's getting a bit more talked about-unfortunately that means alot more people are in so much pain.

I understand completely how awful you are feeling and in how much pain. I have considerable damage in both joints, they don't know how or why. It's taken 4yrs to get a proper diagnosis-it would take too long to tell you the whole story. I've had MRI scans, CT scans and Core X-Rays. Finally, I pushed my consultants enough to get a 4th opinion and found a lovely maxillo-facial surgeon who doesn't want to try and figure out why I have it, he just wants to help me.

I've had 2 bi-lateral arthrocentesis ops. Both have given me a couple of months relief. My only option is a total jaw replacement BUT my surgeon won't do it. I am young (42) but he says it's too severe an op for me. I met a woman who's had it done. You can't move your jaw from side to side, only up and down.
I've to try and live with it. That terrifies me. I have no discs left, or cartilage and so it's bone on bone for me too. I have fibro, OA in other areas and suspected RA so I'm on meds for all of them-except anti-inflamms, I can't take them.
When I have it really bad, I eat soup-that can be filling for you? Mashed potatoes? Boiled eggs, mashed up. I've also taught myself how to yawn in a different way
If I can help you in anyway, please ask away or you can PM me?

Please let me know how you are getting on and hope your appointment goes well,

Magenta xx

magenta

Hi again!

I've just noticed you live in Scotland. Me too, near Glasgow. My surgeon is at the Southern General hospital in Glasgow-that near you?

Magenta x

tjt6768

This really is a great place Cat.. You can let out all your frustrations etc, get advice, give advice, help and be helped...
I don't know what I'd do without it... My poor missus must have been getting fed up of me morning about arthritis all the time, don't get me wrong, she's great and very understanding but it's not the same as talking to others in the same boat so to speak...

Be well

catrocks1982

Hi Magenta, thank you for your welcome and information :O

I really feel your pain, my goodness to have it on both sides is worse, i have been getting twinges in the other side but nothing like the bad side. I have constant pain and can only open my mouth an inch if im lucky.

I have also had 2 arthrocentesis which gave a month pain relief and slightly more movement but not much, i also have got a different way to yawn i had to as most of the time my jaw is jammed so movement is limited. My surgeon said am too young as i am only 29, but its a really serious operation to go through.

What i would like to know if how you keep your weight up as i have lost over 3st and now a size 6! The way i feel is that when im in so much pain the last thing i wana do is move my jaw in anyway just keeping it still helps the pain.

I am in fife so have to go through there surgeons :S

Catxx

catrocks1982

Yup Tony my bf must have been getting fed up with me almost screaming in pain, its great to know that other people have the same or similar thing to me.

Its a great forum, and i know its gawna help alot

Take care
Catx

mig

Hi,I cant help but wanted to say hello and welcome,i have been on the forum nearly a year now ,the people on here are fantastic,will cheer for you when something good happens,will cry with you when something bad is going on,theres always someone to listern.
I have never been up to Fife ,my husband is from Glasgow and my daughter-in-law from Perth so we have been up to scotland a good few times and a nicer people you couldnt wish to meet.
Will be thinking of you and sending hugs (((()))) Mig

catrocks1982

Thank you for your message its greatly recieved.

Im only bout 12miles from perth its a great place i love it. Scoland is a great place to come only the rain that puts me off it at times lol.

Just having people to blast off to is a help. The forum has such lovely people on it just wanting to say hi and the ones that can advise do.

Lovely to hear from anyone on here

Catxx

mike77

Hi can you please tell me what , (tmj) stands for my wife (hazel) suffers from fIBROMYALGIA AND IS just was wondering what TMJ is ?

Mike R & Hazel & Mike JR

catrocks1982

Temporomandibular joint disorder thats what it stands for, my joint also has osteoarthritis an the ball joint of my jaw has crumbled away.

Only 10% of sufferers get it that severe though.

My friend has fibro my goodness its a terrible thing i feel for ur wife.

Cat xx

mike77

thank you cat , it is terrible to watch her in pain I have oa all through my body , my son has problems with his foot has had two operations and say he wants no more he is (17)also he has epilepsy as well as my wife.

thank you for responding to my post
Mike R & Hazel & Mike JR

catrocks1982

My goodness it must be awful for you all. You are most welcome i want to help people and also get more information an advice for me also.

My thoughts are with you all.

Please do take care

Catx

Wonkylegs

Hi Cat,
I have sent you a PM with some links to a firm who, as part of their food business, sell frozen ready meals which are either pureed or designated as 'soft' foods. They are a company that OT's and social services round here recommend to those of us who struggle at times to cook decent meals.

If anyone else wants the links just send me a PM and I'll send them to you - alternatively do a search for 'frozen ready meals delivered' and you'll almost certainly come up with them on the first page

wonky xxx

PS - forgot to say I have intermittent TMJ problems which the dentist thinks is partially due to Fibro and partly due to teeth grinding at night - so I have a very fetching mouth guard to wear at night :roll: :roll: not exactly the most elegant piece of kit but it does seem to be helping.

catrocks1982

Thanks so much will have a look at their site

I tried the mouthgaurd but my jaw to far gone that it was very painful to wear it.

Unfortunetly my jaw is very misaligned now so nothing but full surgery will work on it. I cant go to the dentist now as i cant open my mouth for him to do work its very annoying indeed.

Thanks again for the link most appreciated

Cat xx