Facial Pain & Headaches: Hello there... - Fibromyalgia Acti...

Fibromyalgia Action UK
48,299 members59,912 posts

Facial Pain & Headaches

GrumpyTired
GrumpyTired

Hello there,

Really wanted to ask folks here about facial pain. I'm getting loads of it, along with headaches. My GP isn't sure whats up, and isn't sure where to even refer me, maybe a maxillofacial clinic. I was hoping my description might chime with some of your experiences?

My face pain is an ache, like a hot throbbing, constant deep ache. Most prominent in both cheeks just under the eyes, above both eyes in the eyebrow, also in parts of my jaw and close to the ear. Along with this i get headaches that last 4-5 days at a time at the back upper quadrant.

I've changed my glasses, been to the dentist to check up for TMJ/TMD, and i've chatted to the GP who has ruled out migraines, and doesn't think it's neuralgia.

The GP suggested that it's probably just chronic pain popping up in a new place like whack a mole.

Does this chime with anyones experience here?

Thanks for listening..

42 Replies
oldestnewest

Ahhh just the standard excuse from them then, that’s all they ever seem to say once your diagnosed ‘ it’s just the chronic pain in another area ‘ without even investigating it because they can’t be bothered and save money. Doesn’t work like that I get migraines really bad to the point I’ve had to call ambulance 3 times I felt like I was going to die.

One thing tablets NEVER helped me but I recommend acupuncture on your head and neck best thing I ever done it stopped the pain after a few sessions & I rarely get any pain rarely!

GrumpyTired
GrumpyTired in reply to rtd1

It is a bit of a default response isn’t it, I feel like my gp just doesn’t have anything left in her arsenal though. I did try some acupuncture before but I had a really crappy reaction to it - used to make me feel really badly fatigued afterwards, like it sucked all my energy away. Never had much to start with, lol

Hi there, I suffer with my sinus. And I get the pain above and below the eyes. Sinus problems can also cause severe headache. If they become infected and swollen the pain can be horrible. Just a thought could it be your sinuses?

GrumpyTired
GrumpyTired in reply to Dizzytwo

Never considered that, it’s been ongoing for about 2 years. Do sinus infections hang around for a long time like that?

Dizzytwo
Dizzytwo in reply to GrumpyTired

Yes some people can suffer all year round. Windy weather and central heating can really cause me problems.

Here is some symptoms when you have nasal problems and they become infected.

Common symptoms of sinus infection include:

Postnasal drip.

Discolored nasal discharge (greenish in color)

Nasal stuffiness or congestion.

Tenderness of the face (particularly under the eyes or at the bridge of the nose)

Frontal headaches.

Pain in the teeth.

Coughing.

Fever.

I hope this helps. Maybe have a word with your chemist.

GrumpyTired
GrumpyTired in reply to Dizzytwo

Thanks for your reply Dizzytwo. Hmmm, I’d say most of the list doesn’t really chime with my experience of this so far. But I think it’s worth keeping in mind - thanks :)

Hi grumpy I get same thing and it is tense muscules in my upper neck.

GrumpyTired
GrumpyTired in reply to uggycat

Have you found anything that helps?

l have been having reflexology every week, and did see osteopath and he told me this can happen

Hi there I don’t come on here much but now and again as my daughter has fibromyalgia and cf diagnosed since 14 years of age but I was diagnosed at Eastman Dental hospital in London 15 years ago with chronic facial pain which your symptoms sound a lot like mine I not only get the pain in face and neck and headaches but also in teeth and gums

Sorry I also suffer with TN

Does TN mean Trigeminal Neuralgia?

Yes but you can still have just chronic facial pain on its own

Yes it’s true, I guess a referral to maxillofacial clinic might be a good step then. Thanks for your reply, appreciate it!

Hi GrumpyTired😊

Doesn't say much for your doctor or mine, come to that 😠

I have pain in my jaw and cheekbones, headaches which would be a problem with my spine, some of it may be due to sinuses but it's usually my spine, it gets misaligned with the rest of me and then my jaw and face hurt. You need to check that out also think of your posture, too.

It could be something else but get your spine and back looked at.

Have a good Friday, hug Bev xxx

Thanks gingerapple, I have had mri’s of my back previously (for arthritis related investigations), but nothing was evident. My posture is pretty shit though. Something I try to work on with yoga - I’ll look into this more:)

Can I ask how they 'ruled out' it being migraines?

GrumpyTired
GrumpyTired in reply to Cat00

It was just a brief phone call, ruled out due to being on both sides, sometimes in different places, no aura’s, not incapacitating in an acute way (just the chronic way lol), not light sensitive, but very sound sensitive

Cat00
Cat00 in reply to GrumpyTired

Thats crazy I've never had particularly one sided headaches, sometimes they are, sometimes they change sides and sometimes not at all. Also I'm not always light sensitive although I do have very pale blue eyes so I am generally always in sunglasses without a headache anyway. To me you sound like someone with migraine, it is possible to have migraines that are milder, like 'transformed' migraines which become so generalized they do not behave in a distinct or classic migraine way, either way I wouldn't rule it out.

YASMINTINA
YASMINTINAFMA UK Volunteer

Morning, I do wake up with headaches and I do wonder if this a side effect of my meds which I take before bedtime, do you take anything ?? I am grumpy /tired every morning so related to your title. I use a headache balm from a company in Somerset it’s very effective ( pm if you want the name) have a jar beside my bed and wouldn’t be without it . Like dizzytwo has said sinuses can be very painful so that’s another avenue to check. I read on the internet to try massaging your head to ease which I have done , horrid when you get a really bad head , I seem to be going so many days and get heads that can lay me up a day or so as well , they thought migraine at my surgery . I do tend to read people with fibro do suffer as a symptom with headaches so glad you have been to get checked out , but frustrating when you feel you are not getting answers from your GP. xxx

We talked about med side effects - it’s possible. I’m really reticent to mess with meds (dr said only way to know is to stop them, yikes!). Don’t know about you but every time I change them up I suffer bad. Coming off pregabalin and sertraline is not something I want to do lightly unless I can take some time out to manage it. I’m reading that headaches often come with Fibro too. But holding out hope it might be something actually treatable hahaha

I had trigeminal pain down cheek from ear which was due to grinding teeth at night. Any cold air on first made it much worse and so weirdly did the Gabapentin I was on which should have helped. Once I weaned off the tablets the pain went away almost instantly.

When I get migraines abd cluster headaches get around eyes and sinus feel blocked up sometimes.

Difficult at the moment but see if can get Ct scan maybe.

GrumpyTired
GrumpyTired in reply to Julesubu

Outpatient clinics are all shut afaik, but maybe my pregabalin might be part of it (yikes - dread having to change all that around again)

Hi , yes I have same symptoms as you , I have researched this and it says it’s part of fibromyalgia, I hope this helps xxx💜

GrumpyTired
GrumpyTired in reply to Dids92

Thanks Dids, Fibro covers most things doesn’t it

Hi I suffered from similar pain/ headaches, mines was a mixture of things, sinus problems, TMJ which I got a splint made for, that was a godsend, things were not to bad for a few years but since last July after having blood clots on both my lungs the headaches/ migraines are back, can’t get to the bottom of it this time. Hope you get some answers xx

Sorry to hear that’s all flared up again Deedee, it probably is a mixture of things, I’ve asked the dentist for a mouth guard and excercises to combat possible grinding, hopefully figure it out soon

I get this as part of my fibromyalgia but have always believed it to be hormonal

GrumpyTired
GrumpyTired in reply to Solice

My wife keeps suggesting to get my hormone levels checked, must look into this again, I feel a dr myself sometimes - wish they would do this on the NHS

It could possibly be a polyp (sp). I had one that was only diagnosed after a ct scan. I hope you can find some relief soon.

Has your GP considered/ruled out Temporal Arteritis/Giant Cell Arteritis?

nhs.uk/conditions/temporal-...

We didn’t discuss that at still - new one to me. Thanks I’ll have a read about that

Hi, I also get quite bad pain in my jaw by my ear usually the same side. i get some swelling too. The 'its moving to a different place' really makes me struggle because I feel like I'm constantly moaning about pain somewhere. I am finding most pain relief dont help. I am definitely feeling your grumpytired user name. Just a thought a friend of mine was diagnosed with fibro and eventually came across a consultant who tested for everything and was really thorough and he eventually diagnosed her with a chronic type of arthritis and something else I forget the name of. She said just keep pushing for answers noone deserves this constant pain.( I disagree a few i think should have it no names supplied lol) good luck getting answers.

GrumpyTired
GrumpyTired in reply to Luchev

Totally agree, pain moves and changes all the time - that part of it sucks! Funnily enough I started out with a diagnosis for arthritis, but they changed it to Fibro after 30 odd years and said they couldn’t find anything visibly wrong anymore. My gp isn’t interested in testing further - I think I’ve been put on the psychophysical nhs track, but it’s not helping much

Grumpytired sooo true I'm feeling the same so I was reading that you was getting facial pains how is it now and have you been told wat it is

GrumpyTired
GrumpyTired in reply to Rabs550

Hi Rabs,

Still struggling with it.

I have new glasses, a mouthguard, a referral to the maxillofacial clinic and a suggestion I go back to therapy :( but not really much idea what’s causing it or how to relieve it - so far none of the above is helping. My referral is in 8 weeks so not too long to wait!

Have you been refered to pain management

GrumpyTired
GrumpyTired in reply to Rabs550

I’ve had a stint before yes, sounds like I may end up there again after the maxillofacial clinic

Has ur gp given you aby medication for the pain

GrumpyTired
GrumpyTired in reply to Rabs550

I’ve been On Pregabalin and sertraline for two years, it helps me be functional for the large part. But it doesn’t help the face pain much

And have they told you what it can be?

Hi, I have facial pain, everywhere, cheekbones, jaw, nose, teeth. I've had an MRI too which didn't show any abnormalities. I'm waiting to see a headache specialist as GP and dentists won't be much help. I would suggest to have a private consultation with a headache specialist as they know about facial pain. If you have a Facebook account join a support group and you'll learn a lot more from other sufferers including treatments and good headache experts. I say this from my personal experience. Good luck

You may also like...