FACE PAIN IS DRIVING ME MAD. - Fibromyalgia Acti...

Fibromyalgia Action UK

59,300 members66,356 posts

FACE PAIN IS DRIVING ME MAD.

Abbeystead profile image
28 Replies

This bloody face pain is driving me up the wall today. Was going to go to the doctors, but what for, they dont know what to do. Does anyone get a lot of redness and slight swelling in just one of their cheeks (mine is on the right side). I had teeth out there years ago but the bone is paining, my neck and behind my ear feels as though their in spasm and god am I tired. Have lived with this a long time now so expect if it was something serious I'd be pushing the daisies up by now. Just wondering if it was just me? Answers all you lovely people out there.

X

Written by
Abbeystead profile image
Abbeystead
To view profiles and participate in discussions please or .
28 Replies

I wonder if its trigeminal neuralgia

Abbeystead profile image
Abbeystead

Dare say it is lally. Between that and the very bottom of my back and my legs paining like mad feel like taking a shot gun, You just get used to living and putting up with this pain dont you. Imagine waking up one morning without any pain. Now that would really worry you wouldn't it?ha ha! Talk about not swearing, this B......D thing would make a saint swear. And what's more it fools.everyone else by making you look so well.. Going to see how far I can go wihout taking a painkiller as they're a complete waste of time and just rot your stomach. Hey Ho....

I had it a few years ago and it sent me around the twist, I asked the dentist to take all my teeth out as I thought it was those, its very hard to treat

Abbeystead profile image
Abbeystead in reply to

Lally, I did the same. Gave amytriptaline, but makes me feel too dopey. Know I;m like this for the rest of my life. Cant say I've adapted to it but know I,ve just got to put up with it best can. Couldn't hang out just taken 2 Dihydrocodeine.

charj profile image
charj

A word of warning-I had a tooth taken out in a bid to relieve some of the horrific face pain but it didn't work- now I'm still in pain but have a wopping great hole where a tooth should be!! :-O

fairycazzie profile image
fairycazzie

Hi abbey i too suffering at minute fed up of it!!!

my jaw and cheek bones burning stinging feeling, my neck just like am being held and of course back of neck cos of cervical problem.

Started Feb with sinus problems and radiated was on steroid nasal spray now the nasal seems to of eased but i was in agony 2 wk ago at the wkend withone sided facial pain throbbing on left side wanted to take my eye out.. i went to doctors and she said dont think anything serious ..to me i believe its trigamel neuralgia as i asked to updose my lyrica which does not really seem to be helping although they help usually just working driving etc driving me nuts!

it also goes near my ears and bits of my face are sensitive to touch or will get a burst of throbbing for seconds ! .ohhhh what we to dooooo abbey its nasty living with these problems ..just try keep going and keep doing things to keep you occupied ..hard as it seems ..but go to the doctors and another advice i keep a diary of everysingle issue!!!! xxxx huggles xxxxx

suewood59 profile image
suewood59 in reply to fairycazzie

Ooh I know how you feel never had a pain like it. Some of my face went numb but have got earache all the time I feel bad for anyone with this condition

Abbeystead profile image
Abbeystead

Thanks fairycazzie (lovely name). Still suffering. Should be used to it after all the years I,ve been suffering. I blame a dentist who did a froot cana lfilling and forgot to stop drilling!! Terrified of dentists now and need treatment but scared of going in case it makes the nerve pain worse, Been trying to work through it in the garden this afternoon,but my back is so bad now have had to give in and just taken 2 dihydrocodeine. Wont take the pain away,will just make me a bit tired. Yes have Cervical Spondylitis so that doesn't help either. I,m very goo telling people to be careful and dont do too much but as its going to be raining tomorrow thought I would get it done. Wont be told - well after all I,m only 75!! Never say die, but feel as though I'm going to at the moment with this pain.

Thanks for your kind words.

fairycazzie profile image
fairycazzie

aww Abbeystead,

I do not think it matters how many years you had something,

did you have a problem after Root canal then?

I have had a Root canal and a Dry socket and by gumdeedum is it painful with the Root canal had no idea facial or dentist lol i was in tears alll the time!! and working but i had to give in in the end.

this facial pain feels different some how, last year i was getting a lot of electric shocks and trying to brush my teeth was a nightmare with hands and face, that faded away, but this year its more burning stinging and other week hit me like a bolt of lightening i was helping with washing and had to stop there and then! It was hot outside i sat out and felt the hot sun on my head and felt some ease. but yet the more heat the more burning stinging throbbing type and i feel heavy?? i feel i cant lift my arms or do anything much, this happend fathers day aswell.. not nice is it.. xxx xxxx you can fill me in on any stories as am still new to it all even though over 24yrs i have had numerous hospital stays and had a very very rare case of Glandular fever which i was bed bound and was not even aloud to get off my bed for months, on top was pregnant, so i feel now i look at stuff it alllll makes sense. I also have 2 lge discs indenting on spinal cord which is compressing on my nerves (hence all wrong signals i guess both sides)

How did yours all start and when.

because we still get something that bothers us and it can just bother some time more htan others! i got something with my back but i still on going with tests etc i know something not rite but have to admit in my job i deal with quite a few elderly and they say to me 'you are going through what we are at our age and your only a bairn at 43' lol bless they all seem to have same issues i cannot put my finger on why so i am very scared like anyone wiht any problems as to what my mobility will be like in another year if this is 2yrs and 1 month and i am like i am but i am a fighter and you sound like you are too!!!

i tried mowing the garden last wk or was it other hmm not sure but was sunny and we have a very lightweight flymo..i was doing it and just felt heavier and heavier and was struggling a bit i got stiffer and stopped and had to sit down slowly ..this is soooo not me as i am extremely (was) energetic am very petite i usually get called little china doll lol...YOu like me will keep going no matter what even if it hurts and you struggle! i do this facial stuff is really really bothering me and if i dont take my pregabalin am lost even if it does not do full job.. i was on tramadol, then codeine but nothing would work with pregabalin so am on co -dydromol. I have had dihydrocodeine too i am allergic to anti-inflamatorys for some reason..

Thanks for name it is part of my business name lol 'FairyMaid'. so nearly everything has fairy on it some how as i love them and angels so angelic and sweet.

xxxxxxxxxxxxxxxxxxxxxxxx huggly wuggly cloudy huggles to you

Abbeystead profile image
Abbeystead in reply to fairycazzie

Ha you sound lovely. In fact everyone on here are lovely. And they don't mind if you blow your top and have a little swear now and then. I go on another sight soimetimes and if you just put "bloody"n they bar your message. Answered someone on that site a few days ago and because I.d put bloody they refused to post it. Went back to try and retrieve it but it had disappeared. Just didn't have the energy to write it all again,so dont go on there very much now. People on here seem so much more friendly and we all seem to be in the same boat.

I,m always being told off my my GP for not taking the medications they give me and not giving them a chance to work.I,m so impatient. Was given Pregablin a couple of months ago but only took them a couple of times. Its the after affects I dont like. I like to be in control. Have just been given some BuTrans patches to use but remember was given morphine once and had a bad reaction to that.I might go to Doctors tomorrow to ask her advice. Wish I could get round as quickly as I used to. Used to be like a tornado - a tortoise goes faster than me now.

Notice you said you had a dry socket. Oh my God how painful is that. Had a tooth out once and it was a bank holiday weekend and the dentist had gone away. I was demented with pain and finally found a walk in centre and they cleaned it all out and gave me antibiotics. Now that is what you call pain.

Yes know how you feel feeling heavier and heavier. Also have to keep out of the sun because it makes my face worse and as I have Lyphopdeama it can make my legs swell even more. I wont go on with all the things I have wrong with me - I get fed up listening to myself. As long as no one pushes me to do things then I can cope and you must learn to say No whether you hurt peoples feelings or not. I had to at the end of March when one of my lovely twin grand daughters got married. She wasn't very happy at first but told her to read this site and I think it helped. I couldn,t possibly have coped with sitting so long, My husband went though and gave the speech as her dad,s not very good at that thing

I was little and petite once - yes once, a long time ago now. Still only little but more like Nellie the Elephant now. Making this sound worse than it is really - I wish I could get around and about though. Its impossible to fight FM and its associated side affects so I just go with the flow and when really bad just stay in bed all day

Anyway nice to have you on board. You,ll get used to me. I,m the gobbie scouser who when she starts writing forgets to stop. Take is your from Geordie land.

LindseyMid profile image
LindseyMid

Has Myofascial pain been ruled out? It's a common complication with Fibro and commonly affects neck, shoulders, back, jaw...

Abbeystead profile image
Abbeystead in reply to LindseyMid

Thanks Lindsey, thought myself that,s what it probably is. Been ill for so long now I try not to worry. Sometime as the day goes on it will ease,but I've managed to get through it,but not without a fight and pain today has been pretty bad and had to succumb to my painkillers. Never mind "tomorrow is another day" as an old film star used to say, methinks it was Bette Davies (God I am Old) ha ha.

X

LindseyMid profile image
LindseyMid in reply to Abbeystead

If it is myofascial pain, then this can be treated. Some therapies are only really available privately, but muscle relaxants, stretches and injections can also help.

the quote is from "gone with the wind" Vivienne Leigh

Abbeystead profile image
Abbeystead

Silly bugger aren't I lally. I plead in my defence a senior moment in my old age, you're so right,

Good job we can laugh at ourselves.

lally, while I'm ihere, remember yesterday I was moaning about my face? Well its not too bad today. Had to go to ther quacks for blood test results. Anyway no wonder I just want to sleep, my thyroid tests are at rock bottom so has given me tablets and got to go back in 6 weeks (I'll be back there before then with something else before then)! to have them done again. While I was there asked her why last week my BP was so high 180 over something or other. She said that was because of the pain I,m in, Has given me BuTrans but a bit scared of using the patches because she has said I cant take my Dihydrocodeine while using the patches. Anyone out there who could give me advice on this. Only on 5mcg patches.

X

LindseyMid profile image
LindseyMid in reply to Abbeystead

Probably be worth posting a separate question asking about Butrans. Have you tried doing a search on here?

Abbeystead profile image
Abbeystead in reply to LindseyMid

Thanks Lindsey, will do, It says don't take any opiads for 24 hours and as I had 2 yesterday at 4.pm. better try and manage until tomorrow before applying one.

electricjaws profile image
electricjaws

i have had trigeminal neuralgia in the left side of my face for 13 yrs, it feels like "hot ants" running about between my skin and my skull,in face neck and head, at times i shove my face in a pillow and cry,strangely enough though,my new g.p has gradually been building me up on pregabilin as we think i have got pudendal nerve entrapment(waiting to go to manchester to see a specialist) and incidentally the pregabilin at 75mgs 3 times a day is actually helping the trigemenal neuralgia pain quite a bit, it does however make me feel very drowsy and a bit heavy headed x

Abbeystead profile image
Abbeystead in reply to electricjaws

Thanks for answering. Not too bad today but know what you mean.Was offered Pregablin but didnt like the side effects. Bad enough with the "Fibro Fog" but all these pain killers just add to it.

Have seen a Neurologist and he thinks is Pudendal entrapment as well. Waiting for am MRI. It gets you down though doesn'nt it.

Thanks for your advice,much appreciated.

X

in reply to electricjaws

just wanted to say i lurve your name electric jaws - what a brill way to describe the goddam awful facial pain that i get. i have put off going for my dental check up as i cant open my mouth very far and after wards it triggers it again.tension and stress make it worse too.

i never had it until i had dental surgery 3 years ago but i was already having lots of other symptoms of fibro then too but didnt know it then as had not heard of it. pregabalin doesnt help my face pain atall but diazepam helps a little

electricjaws profile image
electricjaws

my pudendal nerve entrapment is right sided pain in my rectum and womens bits!there are only 3 specialist in the u.k that deal with it,one in manchester,one in bristol&one in london,i can barely sit the pain is so bad xx goingback to your face, if it is trigemenal neuralgia it won't show on a m.r.i as m.r.is can't pick up nerve pain xx

Abbeystead profile image
Abbeystead

Hi electricjaw (what a funny name)! Mine is on the left side although still in the rectum and womens bits, Didn't know about MRIs not picking it up. The pain is unbelievable isn't it. Went to bed at 9 o'clock last night as only comfort I get usually is stretching out in bed. Have been very naughty over the past few days as couldn't resist the way the garden was so overgrown so the bending down did me no good . Dr has given me BuTrans patches but dont know whether to use them or not as what the pain really kicks in I need something to act immediately, not something that will take ages to get into my bloodstream.

Didn;t know there was a doctor in Manchester,which is the nearest to where I am in Liverpool. Must make enquiries.

Regarding the effect it has on my women,s b its. Well wont go into that on here, as my husband may think his luck was in.haha. Seem to be passing a lot of wind as well today,which helps a little bit. But am hopping everywhere on my other leg.

Anyway as I say,I went to bed early last night but for the first time, the Dyhydrocodeine did nothing for me and the whole of my pelvic floor,bowel and bladder was on fire all night. Just got up, well about 2.30.pm as sitting too long only exacerbates it too. GP,s dont seem to know much about this. Can you tell me what medication you find helpful? And did you get a referral to this doctor in Manchester,or find out yourself.

Many thanks from a fellow sufferer with a "right pain in the A..E". ha ha.

X

panda60 profile image
panda60

Had this a few years ago and was sent to see a Max Fax surgeon who diagnosed a-typical facial pain. It was excruciating and I couldn't speak and painkillers made no difference. In the end I had homeopathic remedies which helped and acupuncture. I was also given a mouthguard to wear at night which also helped. Still suffer sometimes and find gently massaging myself and holding a heat pack can help. If it's really bad I go to my long-suffering osteopath who treats my head and neck to calm the muscles.

Also diagnosed with Sjogrens at a later date and have had painful swollen jaw from that which responds to anti-inflammatories, steroids and antibiotics.

Caroline

Abbeystead profile image
Abbeystead in reply to panda60

Thanks Carloine. I was diagnosed with A-Typical pain as well. I put a cold flannel on my face as it glows on one side. I also massage it myself. Think a lot of it may be coming from my cervical spodyilitis as well. Cant take antiinflammatories because of inflamed bowel or antibiotics At one time,when I first started witth this had difficulty opening my jaw and just drank everyhing through a straw. It only lased aboutt 12 hours and things got back to normal. The tthing is Caroline I am terrified of injecttions in my mouth and am sure if they mess about with me it will only

make things worse. Afer all i was a dentist who sttarted all these problems and I dont feel they would be able to put it right and things may even go worse.

Many thanks Caroline

X

Lima6MCT profile image
Lima6MCT

I have TMJ and it causes me a lot of pain at times. I was really bad with it a couple of weeks ago, there was not one wee bit of my face & head (inside & out) that wasn't screaming sore - spent 5 days or so doped up to the eyeballs with painkillers (at various times I was taking co-codamol 30/500 or di-hydocodiene or diazepam) and not one of them gave me relief, they just made me sleepy & nauseous. I was on a soup, porridge, yogurt and puree diet for a week as I couldn't chew anything.

Back to being "normal" sore at the moment & off to see Neurologist at Edinburgh next Wednesday for my 4-monthly botox injection, it just can't come soon enough!!!

Having teeth out, especially back ones, can affect your "bite" & throw out your jaw alignment which in turn may cause you to grind your teeth and/or trigger TMJ.

If your pain was anything like mine you have my sincerest sympathies, facial pain like that is an horrendous experience!

Abbeystead profile image
Abbeystead in reply to Lima6MCT

Hi Lima. You take the same medications as I do. I wonder if its all this damp weather which is causing it. Does your face as well and look very red? the way mine does. Then as the day goes by is seems to ease. As the moment I've got that many things wrong me. Just been told my thyroid is all to pot. Feel nauseous,like yourself. Then bad tastes which turn your stomach over. Haven't got the energy to do anything,just sitting watching cricket,which I don,t even like. Cant find the remote and cant be bothered getting up to look for it, so that gives you some idea of how I feel. Going to bed doesn't help as my body pains more.

Doyou know what Lima, I'm fed up hearing myself moaning. Just get used to it because its not going to go away. Like you, on a soft diet but now and again forget. Ate chocolate last night and I know I shouldn't so that's kicked my IBS off. Silly old moo that I am. Anyone out there got a spare gun and bullet they dont want.ha ha.

Thanks for your reply. Hope all goes well for you.

X

hey - ive just signed up to this site and its sooooo great to read all the posts- im sitting here with my tmj (triggered by a double wisdom teeth extraction followed by dry sockets - i wont catalogue the last few years of pain it s tooo boring but i think the worst pain is the face pain for me but i then change my mind depending on what pains are shooting up and down my other body parts !

God, i still try and have a sense of humour but life is now boring compared to the life and sole of a party i used to be. i only see 1 or 2 friends now as other mates' invites to trips to cinema/ walks in the country etc i cant face or manage. i find massive comfort in my lovely doggies tho.

xx big hug through the air waves to all my fellow sufferers...

suewood59 profile image
suewood59

Hi iv had face pain in Jaws cheek bone like stabbing burning throbbing and constant earache doctor thought could be neuralgia is yours simular

You may also like...

Help !!! Fibro pain!! It's driving me mad!!

can be. Just wondering if any of you have got any good ideas to get rid of fibromyalgia pain. It's...

shoulder pain driving me mad

see doc on fri, cant move my shoulder at all so painful it goes right down into my elbow then into...

My skin is driving me mad

Does anyone else have itchy skin all over as mine is driving me mad from my head to my feet, I keep...

the pain is driving me nuts

this point my pain has been well controlled but it seems now the pain killers are just not doing...

Fibromyalgia driving me mad

back to gp, who I feel has no idea what to say or do with me. But what I do no is my symptoms are...