Really bad flare???

Hi all.

I'm experiencing the worst ever.I thought I already had that experience once already but really this truly is the worst.

Has anyone with tmd experienced along with fibro really bad facial pain on one side of the face where the jaw pain is so painful you just want to cry.and pain around the eye plus pain above the eye like headache pain. Its been two days now it seems to subside if I'm distracted but the minute I stop and relax...boom its there arm on the same side feels like my muscles will explode.

This morning when I awoke I thought I would have to crawl out of body was so sore and tight I could barely walk.

Please help anyone else ever experience any of these symptoms its quite scary.

I'm going to see the Dr.tomorrow just to make sure but wow this is very odd.

Thanks guys.



26 Replies

  • I had that once, so painful. I thought I had a bad tooth so I went to dentist he told me my tooth looked healthy therefore he left the tooth alone and prescribed me antibiotics.

    Wishing you a speedy recovery


  • My daughter had something like that, but it had to do with her sinuses...I think she had to take antibiotics, but I remember her being in pain like that...

  • Hi really sorry to hear you feeling so worried right now and hope you find some one with similar symptoms. Fibro doesn't seem to have any rules it just is as it goes. But what I would say if you get symptoms of something that is persistent always best to check it out with the doctor even if its a telephone appointment. Hope things calm down for you soon. x

  • I have had this it was awful my jaw locked and they referred me to a Dental Hospital they thought I clenched my jaw and grind me teeth which caused the muscles to lock .i now have a mouth guard to wear at night. Personally I think the Fibro causes the muscle to clench also

  • I'm so sorry you are going through such a rubbish time.

    I haven't experienced the same facial pain as you but I have read about others who have. It can't hurt to visit the dentist and have it checked out just in case there is something easily fixed.

    It seems fibro pain is just random :(

    Sending you lots of 'get well' vibes!x

  • I wonder if it's stress related, given what's just happened to you. Fibro will aggravate anything, and other things will aggravate fibro. You don't deserve to be in such pain so you're right to try for some sort of treatment.

    (when my wife left me I ended up in A+E on some strong medication for an abscess which had come overnight). Your immune system may have dropped from an already low level , making you prone to infection. What you describe sounds like an abscess, but naturally, I cant guarantee that.

    Hugs :)

  • Every time I get s Flair up its hits NY jaw to realy bad too x not so much my head get itchy eyes from it to x hope u feel better soon xxx

  • Hi, I've most of the same, with my face I asked the doctor if I could put my inflammatory cream, I find voltarol works for me, on my face because I was in so much pain, he agreed so I do this and it does help for me. I also had the clenching of the jaw when I was sitting relaxing and I was in terrible pain, it got so bad the I chipped a piece from off my crown and had to have a piece put on it the dentist said if you know what you are doing do try to stop, but I donot know when I'm doing it. I Also have pain in my neck, shoulders and arms, and also down the left hand side not the right and to means it's seems as if the bones were trying to push through and it becomes so tight, and again out comes the voltarol. I also take my painkillers at regular intervals and other meds and just try to carry on, I also pace myself and I have nearly cracked it, but the times when I just go over its terrible, but in the main I just try to put on a happy face for friends ands family but they know when I'm not feeling too good and say have you taken your tablets. So you are not alone with this terrible unfathonable illness not knowing what's going to happen from one minute to the next and the support and guidance from this community is second to done. Best wishes.

  • Could not have said it better myself. Just found this myself , so helpful all the different comments. Just a shame there has to be so many to suffer to have such a great community.:-)

  • Hi, I have had the clenching of the jaw involuntary and until I felt the pain I didn't know I was doing this until the pain was so bad, I have my front tooth capped or crowned, don't know which, and I actually chipped a piece off and I had to have piece put back on. I was told I knew the cause so try to stop it, but I didn't know I was doing it until I felt terrible pain. I've also had the pain up my face and I thought I had, is it,neuralgia(cannt spell) and I asked the doctor could I put my anti inflammatory cream and this seems to help.

  • Sorry couldn't figure out what I did and I thought I lost the reply ,sorry.

  • Yes I have had this quite often over the years.

    The pain around the jaw is possibly neuralgia and possibly its nerve pain also above the eye and into head. Perhaps its inflamed . Doctors didn't seem to take much notice and it was months when i eventually went thru the hospital circus. I never really got any answers as they kept saying it was classical migraine. with the pain travelling into arms and legs. My G,P diagnosed me calling this Fibromyalgia because of the aches etc but I don't know. I just accept it as it is and call it a Fibro flare as its now been over 25 years I take 6 dihydrocodeine daily but in a flare these don't touch it . please don't dispare tho try and recall what you might have done to trigger this - stress? Disrupted sleep pattern? over doing it physically? -be cautious over using muscles etc in your neck/spine. Learn to pace your physical activity to reduce flare ups. With time you will learn to adapt and minimize the impact , frequency and length of each flare up. In the meantime if possible, take a hot shower with the hot water spray focussing on the back of your neck, once dressed use a hot flannel on the jaw eye and head, use heat spray/gel on neck. (not cold) and wear neck collar to minimise movement and take bed rest if possible, Lying as still as possible,hopefully you should drift off to sleep eventually. If you can't go to bed try to avoid reading or straining eyes, dark glasses help. Expect to feel a little delicate for a day or two during this phase do as little as possible to avoid antagonising another onset. I hope you have a speedy recovery from this agony. No one can understand the pain unless they have experienced it so I am so sorry you are experiencing this. I am not a doctor I am only advising on my own experience of what I do in the hope it might help you. I wish you the best of luck with improving health quickly. xx

  • Hi, I've experienced something similar, my jaw and above my eyes, in my eyeballs were in horrible pain, I put it down to a migraine as my friend suffers from them. I googled fibro and migraines and they are linked so just rode it out. Are you feeling light sensitive? I'm sorry that you are in so much pain but glad you are seeing doctor tomorrow. I hope you get some pain relief, sending gentle hugs.

    Karen x

  • I also get this it'll usually takes a while coming and going with 2 or 3 days of intense pain in between.

  • I suffer with trigeminal neuralgia ,it's called the suicide pain ,its truelly stop you I your track pain .I take Tegretol or carbamazepine for it and when Im in a reall bad flare which is quite often I take them and it really helps as a bonus to my daily stuff .. If the pain is like an electric shock sort of pain you may have what I have and no normal pain relief works for that ,not even morphine .May I just say write down what you want to tell him because you may forget something crucial.Lets us know how you get on .x

  • Ps it was the dentist who diagnosed me with Trigeminal .

  • *hug* sounds like you make have a sinus infection or possibly a flare up of TMJ (or both?). Yes, I have had the facial pain, headaches, etc. Sometimes it turns out to be my sinuses or non-existent allergies (tested negative for all allergens yet have allergic reactions to pollens etc. gotta love auto immune issues). For the usual flare ups, I have added magnesium citrate soft gel to my daily vitamins. It has helped keep things tolerable since I am unable to take the usual pain meds. Now of course check with your doc first about adding magnesium and if all is well, I really hope it helps ease some of your pain. Have you tried a warm moist cloth laid on the painful areas of your face? I have found that sometimes helps ease such pain and then other times I make a squishy ice pack using rubbing alcohol and water and at least three good quality zipper type plastic baggies. These are nice and cold yet flexible and if you seal em up tight (put the first baggie with the ingredients in it zipped up and upside down inside of the second baggie. Seal that one up tight. Place those two into another baggie and zip that up tight too. This method usually keeps them from opening unexpectedly and making a mess). I sure hope you are feeling better soon and that your doc has some help for you. *hug*

  • Yes don't worry its a bad flare up. Experience same issues. I know it is hard but only way it will go is by relaxing and distraction can help.

    Hope you feeling better.

  • I hope you get rel8ef!

  • I've been told it's the nerves on gabapentine, not on right dose as yet. Upped to 400mg 3 times daily. I've just had a xray yesterday, results in 10 days. I think it's arthritis, they blame everything on fibre!!! Home you get sortef

  • HI Maureen here know how you feel. At present ache all over last night took morphine as head is so bad Also my jaws so sore I am eating food like you give baby. Just hope tomorrow bit better for both of us

  • I. Had similar symptoms and in desperation one weekend went to the pharmacist and she gave me thiamine, she said it was good for this sort of pain, it helped and when I told my GP he said yes and prescribed it for me, it hasn't got rid of it altogether but relieved it greatly. Maybe you could ask.

  • I am so genuinely sorry to read that you are experiencing such a bad flare up, and I sincerely hope that it does not last too long for you.

    All my hopes and dreams for you


  • HI yes I suffer with this a lot too, because our nerves are affected mostly pain can happen anywhere on our bodies. I get trapped nerves in my shoulders and lower back and also my head, hands and feet which causes a lot of stiffness and pain, heat pads help sometimes. Massage the affected area gently and keep muscle moving but don't strain it too much. We have to have a balance of gentle exercise and rest finding the balance takes time but trying to have a good night's sleep is key. I hope you find yours. Gentle hugs

  • Yes I have a lot of facial pain and numbness. sometimes cant open eyes when waking. It is scary but remember it passed and improves. Unfortunately this illness keeps surprising us. Things I do, heat from shower or heat pack, tens machine, accupuncture and bowen therapy. I find asprin helps face pain. Hope it helps to know it is just fibro.


  • I have had this a few times over the last 12 years of this awful illness. its another symptom unfortunately. . I've been off sick for 6 months now and my dr and I agreed that I will never work full time again, in the last 2 weeks ive done a lot and because of that my hubby had to call the dr as im in so much pain and ive got a throat infection aggravated by the fibro. You can only relax and sleep as much as you can, even when you feel better. The pain youre experiencing is horrible; I still try and joke about it but Im 60 and feel a failure. Take care of yourself and I hope your family/ friends will help you. Xxx

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