I was wrongly diagnosed with fibromyalgia circa May 2015 and it's easy to see why. I ticked every box. However I was unhappy with the diagnosis from the outset and so I made a nuisance of myself and only this last month have found the last piece of the jigsaw. What is really wrong with me is OA and that was compounded by a long standing dental infection which has remained undetected for 5 years! My jaw neck and shoulders had hurt for as long as I can remember and it felt like I had a knitting needle lodged in there. I appeared to have IBS. I had no energy and was very sensitive to the cold in particular; in fact my bodies perception of temperature was all over the place and i was always inappropriately hot and cold. I have had countless blood and other tests and the infection was not detected despite my insistence that I had one.
I was at my dentist yesterday and she told me that in between my visits she had treated another patient she also understood to have fibro. In common with myself this patient had an undetected infection which was producing very similar symptoms to mine. Also in common with me, following dental treatment this other patient has made a complete recovery and is no longer thought to have fibro.
Does this resonate with anyone else here?
Written by
mhigton
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Yes, it’s very interesting. I also have RA which I have in my jaw & a mix of RA & OA in my spine & elsewhere throughout my body. Some of us will never get to the bottom of why fibromyalgia affects us like it does & the medical profession don’t seem to have the time or the funding to research more than the basics. We’re left with the choices of dealing with it, putting up with it, attending a Pain Clinic or practicing Mindfulness. I think this forum does much more than most doctors by providing a safe environment to have a good moan, share experiences, try to pick each other up or chat with someone in those early hours when it all seems too much.
It’s good that you have found an answer though, mhigton. Your experience may help others. Thanks for sharing. Nic xx
If you think about the symptoms of fibro as described on the NHS page and pose the question, Could a dental infection produce these symptoms? The answer on all 7 points is yes...food for thought? And two patients at the same small dental practice. What are the odds? I can't believe the difference it's made to me. I don't have to sleep 15 hours a day, I go to the toilet like a normal person and I am comfortable at room temperature but seriously I think Amy (my dentist) and I might be on to something here. Briefly my theory is that some of 'us' have an underlying condition like OA and that acting in tandem with a possible dental infection is confusing the medics because it is cross-disciplinary. I always considered my diagnosis 'lazy medicine'...doubly so now!
It was deep in the gum and how often do you discuss your general health with your dentist? There were no obvious outward signs and those that did exist were masked and explained away as fibro. She (my dentist) had her eureka moment when I told her about the pain in my ear.
Exactly but she she just doesn't think it, we know for sure. 4 short weeks ago I had everything you guys experience I was in terrible shape. The transformation has been miraculous, truly. But my progress has been hampered by the fibro diagnosis I was given. I'd go to the docs for whatever reason and the attitude was 'of course you feel like crap you have fibro' and I have had a devil of a job getting them to look beyond that.
Glad you have a had a positive result. How did she discover the infection and what treatment did you get? It might help us all to be aware. Thanks for posting.x
There was nothing for any one to see during a visual inspection and I didn't discuss my general health with my dentist beyond telling her I had fibro and what medications I was taking. Additionally, local infections often can't be detected during a blood test although I do remember on a couple of occasions people remarking that my white cell count was slightly elevated but there was never any follow through. The key problem is that my issues were cross disciplinary and the right and left hands have never met. Your GP and dentist will communicate rarely at best.
The symptoms that I was displaying which should have been a clue were dismissed and attributed to fibro or because I smoke eg blocked sinuses.
My dentists found it in the end because one morning about 4 weeks ago I was brushing my teeth and my mouth filled with a foul tasting fluid and lots of blood. Naturally I went along to see her and while at first she was slightly mystified once I told her about the knitting needle I was carrying around in my left ear she had her eureka moment.
I have had 3 extractions and the gum opened up and then stitched up to remove the fragment of old tooth that caused the problem. It was hell!! It's spoiled my natural good looks but it was worth it because I feel like a new man.
I know so many people on here have terrible trouble with their teeth that it does make you wonder. Some years back I was having persistent headaches, earache and pains in my face. Initially the doctor couldn't find a cause, then they thought it was a sinus infection and then TMJ and or some sort of strange neuralgia. It was only in despair I saw a private ear nose and throat specialist who said it wasn't any of that and referred me to a dental specialists friend and it turns out I too had a deep seated dental infection and when that was cleared up and the tooth taken out all the symptoms ceased.
Also fibro symptoms seem to overlap with so many symptoms for other illnesses it is not like there is a blood test for it so diagnosis just seems to be a process of elimination. I too have OA and quite honestly often don't know whether the pain iscoming from the OA or fibro or a mixture of both.
I am so pleased that it has helped you and you don't have fibro, thanks for sharing.x
I am absolutely convinced that a lot of people in this forum would benefit from a chat with a dentist! You see the cause of my problem was a fragment of tooth left behind following an extraction some 20 years ago becoming infected. It is extremely common for this to happen during extraction and so a lot of people are going to be potentially affected as I have been. Worryingly if not detected and treated in time it can be fatal!! There is a fabulous documentary clip on youtube entitled 'How sugar killed the Tudors' and talks about the relationship between dental health and general health...it's well worth a watch!
My symptoms of fibro started in 2011/12 and spread everywhere. It went away completely when I had my 3 remaining wisdom teeth removed. However it reoccurred every 6months and only went away when I had a check up. Since then it's reoccurred because of low folic following blood tests and am currently having another episode. The process of elimination is still underway but may be my teeth again. Just because the problem went after fixing the issue doesn't mean it won't keep coming back.
I used to have a lot of dental problems that I didn’t treat well enough, plus a lot of anxiety, low mood, fatigue and so on. This combined with an unhealthy lifestyle, staring too much at the computer, poor diet, drinking and others have brought on a weird pain in the right eye and them in the right side of the head. The doctors said I had trigeminal neuralgia/neuropathy and tried all the treatments for it . I went on like this for years the pain spread into my jaw and half the nose after some acupuncture. I went desperate to the Gp again and he prescribed sertraline. And it changed me very much, my mind became more clear and quicker and I actually realised that there was a problem with me pretty much all my life . It helped a little with the pain too but now my pain spread even more into my neck, shoulder and down my right arm. And the right side of my teeth are all aching, I m sure dental problems played a big part in all this . I really don’t know what to do anymore. Any suggestions are welcome. Thank you
That pain sounds like you have an absess under a tooth,Ive had several and the pain travels down the side of the neck,shoulder and arm almost leaving your arm numb with pain get checked asap!
I don't think you have completely understood. I did indeed have an infection in my gum, now treated successfully and happily I am feeling better now than I have done for years.
There was nothing for any one to see during a visual inspection and I didn't discuss my general health with my dentist beyond telling her I had fibro and what medications I was taking. Additionally, local infections often can't be detected during a blood test although I do remember on a couple of occasions people remarking that my white cell count was slightly elevated but there was never any follow through. The key problem is that my issues were cross disciplinary and the right and left hands have never met. Your GP and dentist will communicate rarely at best.
The symptoms that I was displaying which should have been a clue were dismissed and attributed to fibro or because I smoke eg blocked sinuses.
My dentists found it in the end because one morning about 4 weeks ago I was brushing my teeth and my mouth filled with a foul tasting fluid and lots of blood. Naturally I went along to see her and while at first she was slightly mystified once I told her about the knitting needle I was carrying around in my left ear she had her eureka moment.
Thank you for sharing this. As it sounds very interesting. I too have sharp pains in my jaw, neck and the top and sides of my head. I also have sharp needle like pain in the pop of my feet and knees as well. Along with many other areas of my body. Some which are due to a twice failed knee replacement on the same knee.
I'm also of a similar mind to you that I struggle to accept that I have Fibro as well. I'm trying alternative ways to combat it through exercise. Mainly through aqua fit and stretch exercise classes. Although I do rely on some of the medication as well. This is to enable me to exercise and sleep. If I took all of what ive been prescribed I would be a walking zombie.
I felt my GP didnt seem interested in doing anything about my condition, other than to increase my medication. So I decided to self-manage it myself!
As I said to someone else please go and have a chat with your dentist and describe ALL of your symptoms. I can relate to what you are saying about head and neck pain a great deal, it's very familiar to me!
Wow, I'm reading all these posts.......I am terrified of the dentist, literally haven't been in years. Just a simple check up has me in a state but following all you've said I'm going to make a dentist app asap. Even if nothing comes of it at least I can say I've tried.
Given the abject misery this 'condition' causes it has to be worth exploring just to rule it out. The dentist terrifies me too but she did give me a 'little princess' badge which took the edge off! I am so glad I went. I love my dentist and as soon as I am fully recovered from the work she has done...my body is still excreting the toxins, I am taking her the biggest bunch of flowers. She's changed my life beyond all recognition.
My Doctor thinks I have fibro along with a underactive thyroid and also have RA. I started having pain in my teeth. I had every possible tests done by a top dental surgeon in hospital and he cannot see anything wrong. The pain in my teeth is like a hot poker and lasts for a few minutes but I have noticed that those minutes are getting longer and the pain is spreading. The weird thing is that it happens at more or less the same time of the day, early evening!!! I am controlling the other pains with Hydro and streching excercises also and find it helps me a lot, except for my teeth!!!!! I tend to swallow quite a few paracetemol to ease the pain in the teeth but wish I could find an answer to solve this dilema.
I'll say to you exactly what I have to others here. Talk to your dentist and if you don't get any joy there try and get a referral to a dental surgeon or possibly maxillo-facial. Good luck with it!!
I've just re-read actually and you say you have seen a specialist already, sorry. I am cooking simultaneously. That is perplexing but that pain has to be coming from somewhere. Go and pester them, they do miss things, even the best of them.
Many thanks for sharing your story with us and sorry it took so long to find out the right diagnosis for you. I have read your post with interest it is always helpful to other’s reading experiences, take care , glad things are looking up now.
Thank you, my hope is that people on here will read about my experience and perhaps find a solution to some of their problems. I think a fibro diagnosis is a bit like a curse. Once you have it, medical professionals tend to attribute everything happening to you to fibro and don't follow things up as they should. That's certainly my experience.
Well that rules that out. Have no teeth problems whatsoever as no teeth. But used to have constant abcesses which caused spots on my chin according to my then dentist. My migraines also seem to have disappeared.
It doesn't rule it out at all, you see the cause of my problem was a 'botched' extraction and you must have had a few of those. It places you firmly in line...sorry!!
I would have agreed except that the original extraction that caused my problem was performed 15-20 years ago. I was still young enough to play football and got kicked in the face! I can track the development of my symptoms back solidly over a 5 year period but think they may have appeared as long ago as 10 years in a very mild and subtle form and getting progressively worse
I don't know about an xray being able to pick all of them up but my dentist found where mine was using an xray along with my description of my symptoms
I have always thought that Fibromyalgia was just a cover name for ( can.t be bothered looking anymore ) it is just like everyone I know has it and most ,also have the poor me syndrome. When I was given the " umbrella" the doctor said take pain killers and remember it wont kill you , and here I am . I also have RA and all the other wee things that come from it but the one thing I do have that the doctors didn't give me was Faith in my bodies ability to adjust and start healing. Getting told you have FM is like first a reality you have something and then realising you are sick and then the big decision , do I stand up and fight it or lie down and let my life pass me by, that is a individual choice. There are millions in this world who suffer under this " umbrella " and the biggest majority have to work or die , they work to live and that is the choice, what would you do if you had no back up no insurance no pension and that is your choice. Find a way to cope, find a way to survive if not fade away. How do you all cope ? everyone is different, your pain, depression and the daily battle or struggle, do you shrug your shoulders and get on with it or do you expect others to do it all for you, we have a choice and that is more than thousands of others have who are dying with cancer and other terminal illnesses and once again take your choice. What we have is not contagious but it can bring down everyone around us or make them stronger and better people, yes we all need help but it helps to sit in the wind and let it blow our troubles and pain away to refresh and renew our battle to live , your choice like a ornament sitting on a shelf all you will collect is dust, your choice but that is not as good as it can get, it can always get better. The road may be long and hard but see it as a adventure to a new life. I wish you all well on this rocky road but if enough of us walk it
I always considered my fibro diagnosis as 'lazy medicine'. It is my firm belief that it is GP speak for 'I haven't got a clue and I have a waiting room full of other patients'. It might be a little harsh but only a little...
I'll stick up for you! Anything I write reflects my experience only and I'll stand by everything I say. We are all entitled to an opinion including you and we don't have to agree with each other all the time, that's unhealthy.
The infection itself appeared as a grey fuzzy area on the xray.
This story sounds like a miracle.😊 I have often told doctors that I am not happy with being labelled with this diagnosis as I still do not have a reason for the cause. I still believe that fibro is a symptom of something else. Pain is a symptom that we shouldn't ignore as it's the body's warning signal to do something about it. It is wonderful that you don't have fibro. Do you have a name for the bacteria that caused the infection?
All that I know about it is that it was the consequence of a dentist years ago leaving a fragment of tooth (or nerve) behind during an extraction. I was always suspicious of my doctors diagnosis and concerned that the fibro diagnosis would hamper the diagnosis and treatment of other things which as it turns out was extremely prescient.
It's almost 4 weeks since I was treated and now that the toxins are just about out of my system this is the best I have felt for 5+ years. It feels miraculous! I definitely have OA, that was identified following a MRI scan but I am now in a better place to be able to deal with and manage that condition.
I would say to anyone diagnosed with fibro not to just roll-over and accept that verdict because the doctors tend to fob you off with any old rubbish thereafter and then they miss stuff as they did in my case. I have told my doctors time and time again that I was sure I had an infection. They would take my temperature, pulse etc and then declare that they couldn't find anything and my symptoms were attributable to my fibro. Grrrrrrrrrr
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