jaw pain, plus face and tongue swelling

Discussion in 'Fibromyalgia Main Forum' started by flossyfudleFran, Apr 10, 2008.

  1. hi all,

    i am no longer able to cope with the jaw pain.my jaw dislocates on occasions and its the worst pain ive ever had in my entire life,really it is.

    and this year i have gone on to develope severe tongue swelling,so much so, that i cant fit a toothbrush in my mouth,until the swelling goes away.

    my eye lids are twitching daily,i never get a day off from it,and to watch tv is like watching a film from the early days,where the picture flickered.

    my face swells up,and all in all, im having a terrible time just now.

    around the middle of may this year,i am being sent to see a specialist at the hospital in the maxillofacial clinic,as regards my jaw pain and face swelling.

    if im told theres nothing detected as being wrong in my face,then im putting all of this down to amitripyline side affects,and im coming off that pill.

    ive read through the side affects list again,and its a horiffic list.tongue and face swelling is down as a side affect of this pill.

    i just cant live like this anymore,its too much to ask me to continue taking this pill,in order for me to remain in work and off benefits.i cant do it anymore.

    can i please hear from anyone who is taking amitripyline?

    do you have these symptoms,and do you feel its due to side affects from the tablet itself?

    if nothing shows up as being wrong on a xray,then its just got to be due to side affects of amitripyline hasnt it?

    in the leaflet we are advised to see our doctor if we are having bad side affects to the drug,and stop the drug at once.

    im scared of the face thing,but also scared that my illness will flare up bad and prevent me from continuing with my part time job.


  2. findmind

    findmind New Member

    I would immediately asked to have a substitute for this med; it sounds like you are having the serious side effects, from what you wrote.

    Maybe you could try Effexor; it has a slight energizing effect, and if taken in the morning shouldn't affect your sleep.

    Hope you find an answer quickly,
  3. TXPeach

    TXPeach New Member

    Fran, I am on amitriptyline, 25 mg. taken once daily before bedtime. I have had the severe jaw pain and the eye twitching, but it went away after I had been on it for 3 weeks or so. The jaw pain does occasionally come back, however. What dosage are you taking? Maybe you need to back down on the dosage. I would defintely tell the doctor and see what he says. He may want to try you on a different medication. Sorry I'm not much help. I hope you are feeling better soon.
    [This Message was Edited on 04/11/2008]
  4. thankyou for replying to me so quickly.

    i have a doctor appointment in 9 days time.ive decided to seek his advice as regards how i can safely come off amitriptyline.

    im currently on the red tablet 50mg,one tablet at night.ive been on amitriptyline for 14 years now.

    i have many of the things that are stated as being side affects of the tablet,but ive just put up with it all,as doctors always raise their voices at me when i go to discuss anything connected with fibro,M.E/cfs.

    i dont need doctors yapping on and on,i just want a simple answer to a simple question from them.

    i get tired of the struggle sometimes,but im trying to stay focused on my job,and i feel that its time to lose the amitripyline,but ill seek my doctors advice about how coming off the tablet,should be done.

    wouldnt it be something if i find that most of the crazy stuff thats happening to me,is side affects of this drug.

    i was told to take it to aid better sleep, and relax my muscles,but lately new things are happening to me,that are listed as side affects from my med.

    it all just seems spooky just now.

    thanks again for replying to me.

    kind regards

  5. hi all,

    i went to see my doctor yesterday as regards a swollen tongue and face/jaw.i asked him if fibromyalgia causes theses things to happen to a person,and he said,no it doesnt.

    i then told him that ive been on amitripyline for 13 or more years now.im currently on the red tablet,at 50mg strength.

    and his conclusion just now is that the amitripyline is making my tongue and face swell up.

    its also stated as being on the amitripylines side affects list too.

    but he said,as regards the jaw popping out of place and giving me severe pain.well i should wait until i have seen a specialist at the hospital,next month.to see what is causing that.

    my doctor has reduced me down to 25mg of amitripyline.

    im yet to get the perscription for it,but i am hoping it wont be the yellow tablet,as i have allergy issues with the colour yellow,and most definately E102.the other E numbers are a problem for me as well.especially the ones in the 100,s.


    i asked my doctor what is fibromyalgia?

    his answer was that, it is a brain change of some sort,that makes the brain over active,always on the go.

    and we know no rest with this problem,and thats why we dont manage to relax the brain at night, in order to drift off to a natural sleep.

    he said the brain gives off pain signals all over the body,and then we get totally fatigued with all of this daily pain.even though nothing is found to be wrong in the parts that hurt us.


    i have always thought it was maybe due to the fact that i have been a sufferer of migraines for 30 years now.

    and maybe the brain changes over the many years of these horrible attacks.so below i have wrote something that i read in my newspaper yesterday,about migraines.

    and i think it explains the fibromyalgia pain,as this is the pain i most definately have every day.



    migraine can also make suffers skin so sensitive they cannot even comb their hair,a study shows.

    wearing jewellery,rubbing their head or getting dressed can be excruciating painful.

    researchers who studied 16,500 people,found that 68 per cent with chronic daily migraines,and 63 per cent with irregular migraines,had painful skin - allodynia.

    dr marcolo E bigal,of the albert einstein college of medicine in new york,said, "it causes discomfort or pain even during everyday activities like touching one,s hair"

    one in 10 people in the uk suffer from migraines.


    its good to see that more research is being done,as regards these horrible bouts of body/skin pain that we suffer from,as well as the migraines.

    kind regards


  6. hi all,

    ive not yet picked up my perscription for the lower dose of amitripyline,25mg,that my doctor is putting me on.instead of the current 50mg red tablet.

    but i suspect my new tablet will be the yellow 25mg one.

    im just here reading the leaflet to my current 50mg tablet and it gives a list of the E NUMBERS (artificial colours numbers),in the different strengths of amitripyline.

    i suspect that the new tablet ill be picking up in the next three days,could be the yellow one.so im feeling bad about that, as its going to contain the E NUMBERS/COLOURS that im allergic to.

    these are

    the colours quinoline yellow (E104),and sunset yellow (E110).


    im just feeling so defeated right now.

    i need to keep my job,so need amitripyline,but all of them have E NUMBERS (artificial colours),that i most definately know i have ellergic reactions to.

    why is my body so blinking complicated?

    kind regards

  7. Kae88

    Kae88 New Member

    I'm so sorry to hear about these terrible side-effects you're having. I was wondering since you are allergis to the coloring in the 25 mg tablets,if you could just cut the 50 mg tabs. in half?

    I would think this would be just fine.You should call your Dr. and tell him of your allergy to the yellow tab.& ask if you could do what I suggested.

    Just a thought. Hope it helps.

    Love, Jodie
  8. hi all,

    kae88,thankyou so much for replying to my amitriptyline post.

    my husband asked the chemist about this yellow 25mg dose of amitripyline.

    the chemist has advised me,like you have.to not take the yellow tablet at all,and cut my 50mg red tablet in half.

    he said that all amitriptyline has E NUMBERS/artificial colours,in them.

    and the chemist says that he cant understand why the makers even put the E NUMBERS in the medication,as theres no need to do it.

    he says im a classic migraine sufferer,and he could understand why the amitripyline is helping me with the remainer of those attacks,and the painful skin.

    he says its unfortunate for me, that i am now having problems with amitriptyline and the E NUMBERS inside of them.

    he said my only option would be, not to take amitripyline at all,(if the half tablet keeps my tongue swelled up).

    but instead,go back to my doctor,show him my face and tongue swellings.

    tell him about my E NUMBER/artificial food colouring allergy,and ask if there is any other medication that will help with the fibro pain.

    he said other than that,the only other option is to go on to migraine medication and nothing else.

    the only trouble with that is.what will i do when the buttock muscle pain comes back,after going off amitriptyline.

    that buttock pain prevents me from being able to walk at all,and puts me back in the wheel chair.so having that pain back, just isnt a option right now.not if im working.

    i think i just feel down in myself that the amitriptyline has begun to hurt me,when all it seemed to do was help me over the many years that ive been taking it.


    so ill be going back to see my doctor,as regards my not taking the yellow 25mg amitriptyline that he,s just given me.

    im currently cutting my red 50mg tablet in half,as you and the chemist suggested.

    ive had two nights on the lower,half tablet,and my tongue and face muscles have instantly reduced as regards muscle swellings and pain.

    its still slightly swelled in my face cheek,but it might go away,fingers crossed.

    ive started to have nightmares while sleeping,but i hope this will pass over the coming days.

    i feel ill,or rather fatigued just now,but that could be due to reducing the amitriptyline too,couldnt it?

    im managing to get to my part time job,and dont have any headaches or migraine,so thats great news.

    anyway many thanks for replying to me,and for your advice.

    take care

    love fran
  9. hi all,

    im just writing a up-date on my tongue and face swelling.

    i reduced from 50mg amitriptyline,down to half of that red tablet 25mg.

    i did that for four nights,and all seemed to go well for me.

    my tongue and face swelling, greatly reduced.

    i also found out that a sensitive part of my lady region,that had been constantly swollen,has now reduced in size.

    thats great news let me tell you.

    i had thought that my one a day pomegranate seed extract tablet,that id bought from asda (your walmart),was the reason that my lady bud had swollen.

    so my take on that was that my blood supply was flowing much better while on the pomegranate seed extract.

    its stated as thining the blood and reducing inflamation.

    anyway it turns out the lady area swelling was enlarged because of severe side affects from amitriptyline,that ive been having lately.

    so as i said,i managed to reduce my amitriptyline down to half the tablet,25mg.and i have not had any bad side affects such as headache or migraine,thank goodness.

    my spelling has to be checked over though,as i am sort of dislexic just now,isnt that weird.

    maybe it will sort itself out over the coming days.


    last night i began to take a quarter of the 50mg tablet,and im hoping to continue to do that for about one week,with the intention of then getting off amitriptyline.

    if all goes well,ill still be able to go to my part time job.the buttock pain hasnt returned to me,so thats fantastic news.


    im going to stay on my pomegranate seed extract.my pumpkin seeds for my nail psoriasis,and continue to detox with my ocean spray cranberry juice morning and night.

    it seems i have a good combination here.


    i have been waking up earlier in the mornings,while reducing my amitriptyline,and this morning i woke at 5am.

    i get straight up out of bed,but if i feel fatigued later in the day,ill have a hour one sleep,just before going to work,in the late afternoon.

    i think i most definately do not have to fight any severe tiredness that comes my way in the daytime while weaning off amitriptyline,as i dont want to trigger any migraine attack off.

    so im just listening to my bodies needs,and try to be kind to it.

    so far it is being kind to me, in as that it isnt giving me any extreme withdrawal symptoms,bless it.

    i feel that if i can completely get off amitriptyline,that would be great.as it now hurts my body with severe muscle swelling.

    but it has helped me over the years,that cant be denied.

    take care all

    love fran
  10. hi all,

    i was having what i thought was oxygen deprivation while sleeping,when i was on the 50mg amitriptyline tablet.

    that started about five months ago.and it turns out that it was due to the fact that id developed bad side affects to the amitriptyline,and it had made my tongue swell up badly.

    anyway,i can report that i havent been woken up with this oxygen deprivation, over these last four nights,while reducing my tablet.

    but my tongue and face muscles remain slightly swollen as yet,but nothing extreme,thank goodness.

    im just shocked that i was being suffercated by my medication.scary stuff it was too.

    my jaw isnt as painful now,and hasnt popped out of place.i just hope it never does again,as it was the most extreme pain id ever felt in my life.

    kind regards

    [This Message was Edited on 04/25/2008]
  11. hi all,

    i can also report that im having some breast,or heart pains still,that seem a bit scary.but not as scary or as intense as of the past few months.

    i remain a bit worried about it,but im resting up this weekend, and my hubby is being kind to me.he,s offered to take over the house chores for a few days,bless him.

    i suspect that things in my chest might have been affected with the muscle swelling,caused by amitriptyline side affects.

    or its the fibro.

    ill find out one way or the other,soon i hope.

    anyway the most important thing to me just now is that im not having any migraines and sickness.

    im also using a relaxation file on my mp3 player,to listen to, and relax my breathing.

    but all in all im coping ok just now.

    kind regards

  12. hi all,

    ive had two nights on taking a quarter of my 50mg amitriptyline.

    the tongue swelling is still there, but greatly reduced.

    the jaw and face cheek muscle is still swelled up,but greatly reduced compaired to last week.


    ive had a bout of that rancid taste in my mouth,and it seems to come from high up in my nose,some sort of nasal nasty id bet.

    still got the nose lump inside the right nostril.


    my stomach has greatly reduced in size.its not so hard either.

    muscles still rock hard and painful in my legs.

    but all in all im feeling calm in myself, and no hyperactive brain issues at all.


    ive noticed a very good improovement in my lungs,im now comfortably able to fully fill them with air.thats got to be great news.

    high fever/sweating is calming down alot.it doesnt soak my hair through, now.


    im aiming to get off amitriptyline all together, in another five days time.

    anyway, i seem to be having dislexia problems just now.

    i notice it while typing out anything.then ill read through what ive typed,and its all mumbo jumbo,doesnt look right.

    nevermind...maybe its due to the lowering of my med,and will sort itself out when im off the med.

    or a brain thing is starting off in me,and amitriptyline was controling it,but isnt now that im reducing the dose.

    im having no nightmares now,not seeing anything in my vision,such as flashes of light,so thats good news.


    i am having a much more intense, lower spine pain.

    its that part right at the bottom of the spine,that swells up from time to time.

    when i was laying down in bed last night i had strange things happening in my groin area.

    all i can think to say is...

    it seemed like i was having electrical shocks coming from my spine and shooting down the left leg,then it started in the right leg.my legs went into a weird movement,spasm thing.

    but it went away as quick as it came.

    walking is a bit difficult right now,but ive decided to walk very slowly for now.this then doesnt give me discomfort in the groin area.

    ill have to get used to this,i know.as ive no intension of staying on amitriptyline what so ever,after ive finaly managed to get off it.


    im telling myself that,no matter what pain comes back to me,amitriptyline will remain history.

    but im grateful for the help it had given me in the past.


    i still have no headache or migraine,im blessed just now.

    when i prod that lumpy swelling at the bottom of my spine,it seems very painful,then has spells of knumbness,which then switches back to intense pain.weird feeling it is.

    but i already know that migraine sufferers have painful skin,and its a brain thing.

    so im not even trying to understand this pain switch problem.


    i just have found it weird to read on the net lately that migraine changes over time.

    what used to be confined to out head,is now all over body pain.mind you,i prefer it to be in my body,than in my head,as the continual vomiting would have done me in for sure.

    no one can live with such long lasting vomiting bouts all day long.

    its too complicated for the likes of me to fathom out haha.

    kind regards


  13. hi all,

    im still taking just a quater of my 50mg amitriptyline tablet,at night.

    im having no nightmares.

    still using the mp3 weather file,to get me off to sleep.

    i woke up at 9am this morning.i hadnt heard my wake up call on my mobile phone,and my hubby turned it off,naughty man.as i should be waking at 7am each morning.

    im having some pain in the top of my spine,but nothing intense.ive rubbed biofreeze pain releaving gel on it,and it eased the pain.

    my leg muscles dont seem to be rock hard now.they seem to be sorting themselves out.

    i still have some tongue and face cheek swelling,but can breath ok,and can eat without my jaw popping out of place.

    heart or breast pains are gone.

    im still feeling calm in my mind,no hyperactivity,or floaters at all.

    kind regards



    the tip of my tongue seems red,ive not had this for years,but its come back.

    my mum used to have this with her fibromyalgia,so im wondering what its caused by.

    funny that i havent had it while on the correct dose of amitriptyline,but now im reducing,it comes back to me.

    i have no thrush on my tongue.
  14. hi all,

    ive had a lump in my right nasal passage,that seemed to come and go.id also been having a once a month,rancid taste empty from up in the nose,and drip down on the back of my throat.

    anyway to cut a long story short...

    i put vaseline on a cotton but,and after washing out my nasal passages with warm salt water,then blowing my nose.id rub this cotton bud,just inside my nose.

    yesterday i could feel that the nasal lump was much larger and it hurt.

    so i went up a bit further in the nose with the cotton bud.

    did ten circular movements.and the nose lump went down.isnt that strange.

    i saw no blood,no signs of infected gunk.just a very dirty black cotton bud.

    i used clean ones again,with vaseline on them,until there was no dark dirty cotton bud.

    then i washed my nasal passages out again with warm salt water.

    the nose stung a bit,but nothing intense.

    and today i have no nose lump at all.


    if the lump fills up again,ill just repeat the above things.

    kind regards

  15. hi all,

    ill be taking my last quarter of the 50mg red amitriptyline tablet,on thursday.

    then i wont be on any at all.

    so ill let you know in the coming weeks,what happens to me.


    no matter what does happen to me,i wont be returning to amitriptyline at all.i got sensitive to it.

    im not going to rush to my doctor for more meds,but im waiting to see a specialist in a maxo facial department,at our hospital,the middle of may.as regards my jaw problem.

    ill tell him about things,in a,,, easy for him to understand, way.


    im having the fibro/migraine syndrome, due to low pressure thunder storms.

    but managing to prevent any vomiting by drinking cold water,and taking a ibruprofen 400mg anti inflamatory tablet,that my doctor gave me a few years ago.

    i only take it when im desperate for relief from the migraine head event.

    i dont take it regular as it aggrevates my asthma.


    anyway,my goal for getting off amitriptyline will become reality for me on friday night.

    and ill have saturday,sunday and bank holiday monday,off work.(i dont work those days).

    im not thinking about the coming days,just going to take one day at a time.

    but my still being able to do my part time, evening job right now,is a blessing to me,as i love my job.

    kind regards

    [This Message was Edited on 05/02/2008]
  16. hi all,

    a gut feeling i have about this nasal passage lump is...

    i think i have a tiny vein that is slowly bleeding,in my nose.

    the black colour, on my cotton bud,resembled the black/brownish colour of my periods,many years ago.

    id had a vein that had torn during child birthing my youngest son.

    the vein used to slowly bleed,and then the blood got old, and turned brown colour/or black.

    the hospital told me it was due to slow leaks from the burst vein in my womb.


    my gut feeling is that a slow leaky vein,is in my nasal passage,and something fills up with old brown blood,then releases into the back of my throat,causing that rancid taste.

    im not a doctor,but its just a gut feeling im having about the nose lump inside my nasal passage.

    kind regards

  17. hi all,

    i continue to put vaseline on a cotton bud,and insert the bud into each nasal passage,using seperate ends of the bud for each passage.

    i do 10 circular movements of the bud,in the nose,about half way up.

    the lump isnt showing signs of filling up again while doing this,and doesnt now sting when i wash out with warm water and salt.

    theres no signs of the black/brown stuff on my cotton bud either.all is clean.


    my thoughts on this are that...

    petrol/deasal fumes go into my nose while im deep breathing, while bike riding out doors.

    these fumes are iritating my nasal passage and i think either making a blood vessel swell up in there,and then it does a slow bleed.

    or its petrol/deasal fumes making a nasal infection.that festers over the month,and water/salt, wasnt enough to wash it out.


    i have for the last 19 years,had a blister on the outside of my nose,(not directly near nasal passages).

    its clear then fills up with blood over the month,then has a bleed.

    im told its not cancer,but not told what it is.

    my take on this is,,,

    the blister just appeared 19 years ago after id had a operation to remove a atopic pregnancy from my falopian tubes.

    the nose blister used to bleed none stop at times,but from my years of observing it,i think....

    the blister is a body thing/fluid, that is sticky and its my body forming a shield over the leaky vein.

    but blood slowly fills up inside the blister and when it gets too full up,a gentle knock of the area,makes a bleed.

    then my body makes some more, clear sticky stuff form over the bleed,and seal the wound.till the next bleed.

    im mentioning this, and the nose thing,at the hospital appointment i have in a few weeks time,for my face/jaw/tongue swelling.

    kind regards

  18. swollen

    swollen New Member

    I was diagnose in 2003 with fibromyalgia and was given amitriptyline and had problems urinating so I talked to my pcp and he switched me to nortriptyline been doing ok since. now with the face swelling and tongue thats been one of my problems befor I was diagnose with fibromyalgia for me that is part of my FM pressure points I always had face swelling hands and pelvic along with pain. if you still develope the tongue and face swelling it might be just part of your fibromyalgia(maybe) don't "quote" me on that though.
    [This Message was Edited on 05/03/2008]
  19. just searched this.getting advice will update asap.

    brucellosis.- as read on patient uk....

    a experimental farm near where i lived years ago,caused this,or bio weapon.

    and its not stopped,is world wide.

    pets as well as people catch it.

    cant say more just now,but the picture is way clear for me and my mum,i think my son too,and mums brothers.

    oesophageal varices....mum had this but lived a long life.reached a old age,by being kind to her gut,not eating food that is sharp(like crisps).

    only taking paracetamol for pain,and not drinking alcohol at all.

    mum wasnt given beta blockers for her vein thing in the head and gut illness,but a site says those types of meds are a nessecity,cant spell it.

    kind regards


    [This Message was Edited on 05/03/2008]
    [This Message was Edited on 05/03/2008]
  20. hi all,

    my mum took medication for migraine,but the oesophageal varices in her gullet where very swollen,so she couldnt keep food and pills down.

    she lost the ability to urinate properly during the last 20 years of her life.so was put on water tablets,frusemide,and spironolactone.nothing else.

    there was no room left in the gullet,(for food to pass through)as a large varicose vein was obstructing the foods natural process of going through the gullet.

    she would eat ice lollies to ease her throbbing chest/gullet vein.

    when the vein reduced in size, the pain went away,and she could eat normally.


    funny that a very cold drink(out of my fridge) of, pre boiled water,should be my answer to stopping the throbbing behind my eye and thobbing in my gullet.

    thus take away the migraine attack,by cooling my over heated body.

    i was going a bit senile like,a few years ago.

    but all is working well with brain function since im drinking cranberry juice for a year now.

    no constipation,psoriasis,de- hidration.


    catch 22..and theres alway one isnt there.

    i think i need to take blood thinners,so my blood doesnt make the veins over swell.

    ive since read that cranberry juice affects blood thinning meds.

    but if i come off cran juice,ill get severely constipated and get toxins from old backed up food,travelling up my spine,to my brain.

    thus making the senile symptom return to me.im having none of that.im enjoying being clever again.

    my immune system seems to be getting stronger with the cran juice.but im worried incase i have a gullet varices,just now.

    i think i do,and am seeking help shortly.


    i know i have one in my nose,and a small one on my face,near nose.

    ive had that one 19 years.

    the (inside nose) one,,,about five years.

    probable gullet one...in the last five months.

    a few in back passage,many years after childbirthing my last baby nearly 18 years ago.

    last major bleed from back passage...eight years ago.a one off instance, that a piles spray from my doctor,corrected.

    was a bad bleed too,at the time.

    kind regards



    i think old blood from slow bleeding veins is settling in the gut.

    my immune system is working overtime to get this old blood out of my body.

    but it cant do it alone.

    i think long term antibiotics,which are advised for brucellosis,will kill my bodies friendly bacteria,as well as the bad one.

    i dont want to kill the friendly one,just the bad one.

    cran juice is making my good bacteria thrive,in order to kill the bad bacterial,and get it out of my body.

    but i think another year on cran juice is needed,if my veins can hold out under the strain of having thicker blood just now.

    my immune system is now just showing signs of healing.but only while on cran juice.

    id like to keep the juice if possible.


    so reduce chlorestrol in a natural way,lose weight through diet.

    cut out E NUMBERS in food,to reduce migraine/vomiting attacks.

    eat healthy.drink cran juice.its aiding the immune system,i feel sure of that.

    beta blockers seem the only option for the varices, and most definately very cold water (pre boiled),then kept in the fridge.

    i think, try paracetamol only, for headpain when its extremely bad.

    mum had liver damage because of taking too many meds.so she had major gullet bleeds,and i wont say any more.but she survived many,many years.

    my liver is well,so my doctor says.

    i just havent been a pill person,and couldnt keep them down during migraine attacks of the past,when i was younger.

    started having them when i was 19,after a brain inflamation event.

    was later told i have migraines.


    i havent been a alcohol drinker either,as it triggered migraines in me,so i felt...beer wasnt worth the migraine attack.

    i was mums carer years ago,so i feel i know how to care for myself during this current worrying time.

    plenty of cold water for eye and stomache flutters,keeps vomiting away.paracetamol doesnt seem strong enough to stop the head/stomach pain though.

    ibruprofen 400mg only when desperate for migraine relief,does help.but i wonder if i should go onto a lower dose,if they make them.

    that way ill remain kinder to my liver and kidneys.

    enough said.

    kind regards