Does anybody with Hashimotos & or Fibromyalgia ... - Thyroid UK

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Does anybody with Hashimotos & or Fibromyalgia experience this type of pain in their head & face? Rapid onset, eye watering, unable to speak

Poppy_the_cat profile image
11 Replies

I feel as though I could black out.

30 years ago I went through this pain pattern... Triggered even just by talking, or eating.. it got to the point I could not even eat yoghurt through a straw. People thought I was anorexic... I went down to hardly bring 6 stone.

My dentist at the time thought it was the meeting/contact points of my teeth. I had had orthodontic treatment as a child. ???...

He 'shaved' the meeting points between my teeth, upper and lower jaw, and soon I improved enough to be able to eat again!

35 years later and it's back.

Last week we had a serious event in the family. My mother appeared to be undergoing a heart attack, her angina spray did not work. After two attempts, we elected to drive her ourselves straight to hospital. The pain in her arm increasing all the while.

We had a 2 hour wait in A&E!!!!!

On a Friday night It was full of domestic violence victims, assault, drug use, and even people brought in under police escort in handcuffs. It was immensely stressful..for all.

The staff were excellent. The pattern did not quite fit the heart attack scenario (having been through a heart attack 9 years earlier, my mother was very calm and very in control) her blood test results showed she had not produced the 'post heart attack hormone'...but the pain in her left arm persisted and her oxygen saturation levels were mysteriously low?? She was kept in over night for continued observation.

We arrived at the hospital at 10.30pm.... and we left to go home, leaving my Mom behind, at 6.45am.

I had about 1 & 1/2 hours sleep, because I had to get up to go to work next morning.

Severe sleep deprivation is bad.

This was bad. I have not overcome it all week. I have had immense fibromyalgia, typical "toothache like neuralgia" in my whole upper body. My head and neck have been bad... Last night it started...

And tonight after eating, it struck with a vengeance.

It's like a stabbing red hot needle the size of an large crochet hook. The pulse of pain is pure nerve pain/spasm...its like a skewer, impaling me through the underside of my jaw, through my tongue which feels like it has pins and needles, through my pre molars, upper jaw, reaching to my ear, my jaw joint and just under my eye.

The pain is so intense I feel like I could blackout...it's killing me at the moment to write... Nothing takes the pain away. Nothing....

It will pass in a few hours....I have to stay calm...

Please does anybody else have this intensity of pain in their head and face??

I don't know if I could cope with frozen peas on my face right now....

Any advice grestfuly accepted

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11 Replies
Jazzw profile image
Jazzw

Oh Poppy_the_cat, I’m so sorry. It sounds like trigeminal neuralgia, though having found your post from 3 years ago healthunlocked.com/thyroidu...

you probably know that already. I’ve been having a rubbish time myself with something similar (albeit not quite so painful) which is affecting my ear, my throat, my jaw and the back of my head. It started shortly after some dental treatment back in February this year but the dentist is adamant it’s nothing dental. The GP has referred me for an MRI to rule out an acoustic neuroma. But the pain moves between all those places for me. Currently it’s in my jaw, last week it was my ear. I never know what I’m going to wake up with. :(

Have you ever been offered an MRI? The doctor said that if it did turn out to be dental in origin, the MRI would be able to pick that up too.

Wish there was something I could suggest. Sending you a big hug x

Oh, the other thing—editing this while I remember—this does sound stress related. Could it possibly be shingles on your trigeminal nerve? Sounds like an odd suggestion I know, but when I was a student nurse years ago I worked in outpatients with an ENT surgeon who diagnosed someone with shingles on a nerve in their head. Just something to suggest to a doctor...

Marz profile image
Marz

So sorry to read of your pain - sounds awful. Hope you find some comfort/relief soon. Also hope your Mum is OK.

I had a Dental procedure on Thursday and wondered if that had impacted on my left-side neck pain which had worsened. Saw Physio/Acupuncturist the next day and mentioned it to her. Immediately she went to my right lower leg and pressed a couple of places - ouch ! - in went the needles and all is much improved. That area is also the site of a horrid dog bite sustained here when a large dog broke free from his chain ... nasty scar and no doubt some blocked energy - difficult to take on board how our bodies work as a whole. It seems Chinese Medicine has a few answers.

Fingers crossed your new kitten can bring you comfort too 😻🙀 x

ShonaGreen profile image
ShonaGreen

So sorry to hear how much pain you're in Poppy_the_cat . I can only imagine how bad you're feeling. I've had spells over the last 7 years when I get the most intense pain on top of my head, it feels like I'm being stabbed, only lasts for about 10-30 seconds but can't do anything when it's happening as pain is so bad. Afterwards I often have pain down the right side of my face, ear and jaw, blurry vision and it would hurt more when I walk, especially if windy, having a shower, sometimes just touching it. I visited the dentist and optician and they couldn't find any problems. In the end I went to a chiropractor and she thought it was trigeminal neuralgia. My GP agreed and I started medication, but after seeing a neurologist too, he thought it was a form of chronic migraine so prescribed amitriptyline. I've been taking this since Dec and it's helped a lot, albeit I do still get some headaches like this but not as intense.

Do you think it could be trigeminal neuralgia as it does sound like it, especially as it comes and goes and gets worse when stressed. Have you seen your GP or neurologist about it? I really hope you can get some answers and start to feel better soon, take care.

lola1956 profile image
lola1956

Hello yes I get this very bad in my face especially my jaw cheeks and teeth , I have fibromyalgia ME and hypo , I too have a hard time with stress as my mother dementia and dying , I feel sorry for you too as it’s awful and painful but I’m not sure how to treat it and came here for some advice.. sending love to you

magsyh profile image
magsyh

I can relate to this one. I get terrible pain in my jaw, face and ears which brings on a headache. Last week when I had it, it brought on a panic attack. The pain in my ears was like somebody sticking knitting pins into my ears and I always describe the pain in my face like a fork in my jaw. Two odd things that can bring me relief is indigestion tablets as it can be related to what they call silent reflux which can be brought on by stress. The acid travels up the tubes in your throat and into your ears and boy is it painful. The other one I just discovered recently is antihistamines. I get all over body pain like fibromyalgia and I was surprised to read it can actually be linked to sinus pain, which is linked to hypothyroidism. I started taking antihistamines and my body pain has improved. I also found in the past my jaw pain was linked to my hormones always 2 days before my period.

HLAB35 profile image
HLAB35 in reply to magsyh

You may have 'histamine intolerance' - look it up. It always gets worse in my daughter when she has PMS and she has to stick to a very low histamine diet at that time of the month. It is caused by reduced production of the enzyme that breaks histamine down. Supplements that block histamine (Quercetin and nettle) really help as antihistamines only work in the short term.

I haven't had anything like that, but the suggestion of trigeminal neuralgia sounds likely to me. I had shingles a few months ago that affected the trigeminal nerve. The main symptoms were pain behind the left eye, and sickness - very similar to migraine except the pain was worse than the sickness and it lasted for several days.

Shingles, as well as the typical rash, only affects one side. so it can't be that.

There are medicines for neuralgia, so ask the doctor. Do hope you are better soon xx

posthinking01 profile image
posthinking01

Hi there Poppy the Cat - you won't believe this but I read your post with extreme sympathy as to how much you are suffering and then read it out to my husband - as I was reading it the second time I had a light bulb moment - I thought hang on - this sounds like something I recognise - how I missed it with the first read I don't know - because the pain i suffered for 6 months was something I will never forget and I have had renal colic the most painful condition the human body can experience. I think you have a TMJ issue - see here - medicalnewstoday.com/articl... - you need to go to your dentist and get him to make you a splint to raise up the joint to stop it hitting the wrong part of the joint mechanism. As you can see it is being considered it is a hormonal issue ?

webmd.com/oral-health/guide...

When my dentist fitted the splint I was out of pain - it was heaven.

Hope this helps

Jompy profile image
Jompy

Sounds very similar to eat I suffered from it is tmj (temporal mandible jaw disprder even yawning can set it off. The dentist made me a mould like thing to wear at night and it has greatly helped

Gingersnap202 profile image
Gingersnap202

Do you have thyroid issues? Fibromyalgia pain can be due to hypothyroidism. The late Dr. John Lowe had a good understanding of this. I don't know if you can find any of his work online anymore or not, but it might be worth doing a search. ... Before I first started on T3 (Cytomel) I put an inquiry about it on "Yahoo Answers" and a young lady answered and told me that she had been in such pain from Fibromyalgia that she was told by her doctor to "get yourself a wheelchair". ... She said that another doctor prescribed Cytomel for her and that her fibromyalgia pain resolved. ... T3 is powerful stuff. ... As I have posted here before, brand name Cytomel is the only thing that works for me. For me, taking anything else is like taking nothing.

samaja profile image
samaja

Poppy I was sorry to read about your pain and suffering. I also have pains and have been trying to find an effective way of dealing with them over a period of time. For me the crucial bit of information in your story is the whole horrible experience with your mother and all the emotions it had no doubt triggered in you.

Based on my research and experience pain always originates in the brain and more precisely in the mind though not 'in the head'. It will be absolutely, terrifyingly and excruciatingly real, affect your nerves, muscles, joints etc and can go on and persist for a long time but if there is inherently nothing wrong with the place it's felt in (recent injury or tumor, or cancer type wrong) then there is a very high chance that what you are experiencing is something called TMS (Tension Myoneural Syndrom) which has its basis in psychology rather than physiology and is related to stress and emotions. It seems to me the anger, fear and anxiety, disappointment with your mum's treatment and other emotions you experienced are still very strong and alive in you and you would need to acknowledged, feel and accept them and maybe link them to what you were feeling when this pain first appeared years ago to move forward. It may not be easy but working with emotions definitely helps me and it helped many other people in similar situations.

Maybe you would be interested in looking at the SIRPA website and reading dr John Sarno's books on pain and mind-body connection.

I wish you all the best and hope you will be better soon!

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