Dental Health: Yet One More Challenge For Those With ME/CFS

View the Post on the Blog

by Jody Smith

Poor dental health may not be at the top of the list when you think of ME/CFS problems. But many of us who have been sick for any length of time can tell you some horror stories about our teeth. I don't know if having ME/CFS is directly linked to poor teeth and all that can result, but the inability to get to a dentist or to pay for a visit will assuredly have a direct effect.

Do you have dental coverage? Many with ME/CFS don't. I certainly don't. We followed the only path open to us for years, which was to not go to the dentist. A year ago, we could afford to start making dental visits once again. But with no coverage, it is expensive. I'm just glad we can do it. But many with ME/CFS are not so lucky.

Being too sick to lift your head, let alone get out of bed, let alone drag yourself to the dentist's office of course means no regular checkups and cleanings. Some have no way to get there, either because they can't drive or have no car or have no-one to drive them, and can't manage a taxi or a bus ride. And then others don't have the money to be able to pay for their transport or to pay the dentist.

So what do you do if you fall into any or all of these categories? Generally you leave your teeth and gums to their own devices, and that is an open door to tooth decay and a cascade of further failing health.

Let's say you can successfully clear all the hurdles I've mentioned, and you can get yourself into the dentist's chair. The potential obstacles don't stop there. We are an intensely sensitive lot, unable to handle medications and chemicals in "normal" doses. Did the dentist tell you that you have cavities, or need a root canal? Can you successfully bear the anaesthetic, the ingredients in the fillings and the materials used in a root canal? Are you terrified of finding out too late that you've just paid someone to lodge unfriendly matter into your mouth?

Several years ago, a wonderful dentist in our area provided free dental work to some families in need, including ours. I came off not too badly though the cleaning after more than a decade of no care was a brute. My son Jesse, though, had a mouth full of cavities and needed a root canal. Horrible for someone so ill to sit through these sessions. I was terrified, having read some pretty frightening things about the cure possibly being worse than the bad tooth. But I didn't feel I had a choice so I took a deep breath and got the kid in there. Since then, he seems to have benefited from cleaning out the toxins in his system. So far, so good, as far as we can tell, but I really felt like we were rolling dice.

I have had a couple of friends who were housebound or completely bedridden with ME/CFS who could not go to see a dentist. I started scouting around for that unicorn of the medical field - a dentist who makes house calls. I was dismayed to find that most are not set up for that.

I wasn't too surprised by this however. What did surprise me was that there are a few dentists who will actually come to your home and take care of your teeth. Your chance of seeing such a godsend is of course entirely dependent upon living in the vicinity, and being able to make the trip. Still, they do exist. May their numbers increase.

Dental issues are a huge, though largely unrecognized toxic mess for many who are chronically ill. And for those of us with ME/CFS, with all the sensitivities and intolerances we deal with, the mess is bigger and even more toxic. And the older we are, especially among those who have spent many of their years sick, the more the mess compounds.

Even when you brush and floss your teeth regularly, bacteria gradually build up over time. They harden and turn into plaque, which in turn becomes tartar, a hard mineral deposit. And you can't get that stuff off by yourself. Eventually you may have swelling and bleeding of the gums. Enter gingivitis, a common form of periodontal disease. Periodontal disease attacks gums, periodontal ligaments, teeth and sockets with inflammation and infection. If plaque and tartar are left untreated, bacteria begin to find their way into your bloodstream, and can eventually affect many parts of the body. Oral bacteria and their associated inflammation can set us up for other diseases and conditions like cardiovascular disease, endocarditis (inflammation of the heart membrane), premature birth or low birth weight and may be a risk factor for Alzheimers (like we need any worsening of our cognitive faculties).

Medications like antihistamines, decongestants, diuretics and painkillers can decrease the flow of saliva. Normally saliva will neutralize acids and wash food away from oral tissues, but without normal levels, your mouth is vulnerable to bacterial toxins that can result in tooth decay and periodontal disease. And of course, if your mouth is full of cavities or infected gum tissue, eating food and getting nourishment just became an even tougher tussle than it was when "all" you had was ME/CFS.

When I present a raft of problems I like to also present some potential solutions, but that is so often not possible with ME/CFS struggles. And this one, I'm afraid, is no different. Unless you live near a dentist who makes house calls, or unless you are well enough and financially healthy enough to get in for a visit.

If you are stuck managing on your own, do the best you can with what you have access to. Floss. Brush your teeth twice a day. If you can't hack toothpaste, consider coconut oil and baking soda.

As is so often the case, for the very ill and the very poor, awareness is all I can offer here. This doesn't help those vulnerable ones but perhaps increased awareness in the greater community, here in our ME/CFS home, and in the world around us, will prod some conscientious souls to action once they see clearly yet another of our dire needs. Let's hope some champions see this, and are spurred on in our behalf.


Further Reading

Oral health: A window to your overall health
http://www.mayoclinic.com/health/dental/DE00001
http://www.mayoclinic.com/health/dental/DE00001/NSECTIONGROUP=2

Periodontal (Gum) Disease: Causes, Symptoms, and Treatments. July 2011.
http://www.nidcr.nih.gov/OralHealth/Topics/GumDiseases/PeriodontalGumDisease.htm

Floss & Other Interdental Cleaners. ADA.org. Retrieved August 18, 2012.
http://www.ada.org/1318.aspx

Flossing. Hopkinsmedicine.org. Retrieved August 18, 2012.
http://www.hopkinsmedicine.org/healthlibrary/conditions/oral_health/flossing_85,P00879/

Coconut oil could combat tooth decay
http://www.bbc.co.uk/news/health-19435442

Coconut oil can combat tooth decay, study suggests
http://www.cbc.ca/news/health/story/2012/09/03/sci-coconut-oil-tooth-decay.html

Support Phoenix Rising​

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.​

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.​

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

​

View the Post on the Blog

 

I'd like to add a few things.

May of us with ME suffer from dry months, not necessarily due to meds or supplements but just a dry mouth anyway eg some with ME may have coexisting Sjogren's Syndrome. I think in my case its my POTS which affects my body fluid level, I think it also causes my mouth to be abnormally dry. My dentist said most of my enemal has worn off of my teeth due to my mouth not having enough protective saliva. This drier then normal mouth issue has dentists wanting me to see them every 6mths instead of yearly due to the increased risk of holes (I developed 3-4 holes in one year).

Our pills and supplements and other things we need to take may also contain sugar eg some fibre supplements can be very bad for this (mine when I take it there is about a 1 tsp of sugar left sitting in the bottom of the glass). So our teeth with taking the things we need to take for our health, may be getting more sugar hits then we realise as well. Often there is no easy way around having this sugar as things either tend to have artifical sugars which most of us cant take or real sugar in them.

Cleaning ones teeth regularly can go out of the window too when very sick, it can be hard to be doing ones teeth when one cant even get out of bed. I still have "okay" teeth (other then fillings and the enemal now being very thin), Im truely surprised that my teeth are still in okay shape going throu what they have been throu including a bout of me drinking sports drinks for the POTS (sports drinks which also did harm to my teeth).

 

I forgot to say, I love the picture you choose to put with this article

 

Yeah, going to dentist is horrible.

Just an interesting thing to note, I'm from Europe and we never really get dental cleaning.

 

Glad we don't have two rows of teeth like that shark up there

So glad I don't have teeth anymore, I know that probably sounds appalling. But I had nothing but trouble with mine. It always bothered me as I was not a slack cleaner of my teeth. I also have never been a rubbish eater. My dentist said to me when I complained to him about it that "some people just have good genes, strong mineral makeup.

Perhaps I should have taken mineral supplements throughout my life, it may have made a difference ?

 

I only go to the dentist when I am in pain. I haven't had my teeth cleaned in years. I am told they need it every time I go to the dentist.

I have found that buying a couple extra packages of dental floss to put by my computer and bed have increased my flossing. I was flossing while reading this. I also floss in bed.

I bought some gum that is supposed to help maintain dental enamel. I don't often think to chew it.

I have seen ads for dental probiotics.

 

Great article! I have TMJ which has caused multiple teeth fractures. I wear a bite guard at night but replacing it every few years is an expense we can do without. I've recently started making my own toothpaste which has actually improved my dental health. I can't find the exact recipe online that I use but will put in some links of similar things.
I use baking soda, unrefined sea salt (fine), Bentonite clay, peppermint essential oil. The sea salt helps clean my mouth really well and is more abrasive on my teeth. The minerals in the sea salt are meant to help re-mineralize your teeth. And yes I do have sensitive teeth and no this toothpaste hasn't made it worse - it's actually made them less sensitive.

http://www.thankfullythrifty.com/2012/06/so-you-wanna-make-your-own-toothpaste/

http://wellnessmama.com/2500/homemade-remineralizing-toothpaste-recipe/

The other thing I love about this stuff is that it's cheap.

There is another thing I keep meaning to try as it's meant to work great and that's oil pulling.

This video explains it well:

http://www.youtube.com/watch?v=OJciYPRiHgQ&feature=c4-overview&list=UUpHnr456kFVphLmJT2Hkclg

 

I didn't see a dentist for about 7 years (and it was 5 years break before that too). I brush my teeth once a day.

I freaked out earlier this year as I thought I needed fillings, as it turned out the problem was just the Fissure seals over the fillings in the fronts of a few of my molars had fallen out. The problem was I didn't have health insurance (extras) and had to wait 2 months before I could see a dentist. I had a great dentist though, supportive, explained everything in detail without prompting, did not judge etc. I did also enjoy her telling me that she didn't actually had to do any work at all, though I got most of the Fissure seals redone to prevent further tooth decay.

Perhaps rare, but there you go, a good dentist experience.

 

I read some interesting articles about the connection of the mouth and teeth with the HPA axis a while ago. Something about how the hormones are sensed through the tubules in the teeth. I wish I could find the exact article because I am explaining this terribly! But anyway, it had never occurred to me that there might be a connection between a weak endocrine system and weak teeth but it appears that they are tied together.

Also, grinding the jaw is a way to stimulate the release of cortisol. Since many of us are low in cortisol, it makes sense that many of us also grind our teeth.

Ema

 

Helpful discussion! Toothpaste: A common ingredient of toothpaste is sodium lauryl sulfate which even dentists can tell you causes mouth sores. Grinding and clenching: My muscles are always tightening and clench with irritation, maybe due to excessive glutamate? Not sure. Part of myofascial pain syndrome and fibromyalgia too in my case. This has caused all kinds of dental problems, expensive repairs and two extractions. Wearing a nightguard only protects the surfaces but can make the clenching worse, I found. Recently trying Lyrica, however, the grinding and clenching stopped. Lyrica reduces the glutamate activitiy. Gabapentin, which I like better in all other respects, does not have this benefit of stopping the clenching and grinding.

 

Faced a lot of dental issues with many medicines! Especially benzos. Dry mouth,Jaw Clenching seemed to me the major factors,but tooth decay and gingivitis was observed despite taking preventive measure.

 

Thank you so much Jody for raising this important issue - we live in the UK, my wife, Linda , has Very Severe ME .

Linda cannot bear her head to be touched, even lightly, she is in so much agony, so frail that any dental work is likely to lead to a massive exacerbation of her symptoms, already raging out of control.

She is extremely disabled by profound noise and light sensitivity.

Constant , stabbing pain shoots down from her ears, to her jaw, on top of the numbness and paralysis she experiences there : how on earth could she cope with an injection - even a non-adrenalin anaesthetic ?

Yet her teeth urgently need seeing to. Luckily there is a home dental service where we live - but what practical use is it ?

The issue comes down to this : how do you offer a dental service to a person with Severe ME who cannot bear to be touched, cannot bear any interaction, cannot bear light or noise ?

That question will never be answered all the time the denial , the ignoring, the leaving of people with Severe ME to simply get on with it, to cope untreated, unseen, negated and dismissed, goes on !!

 

For dry mouth, Biotene is effective although it has preservatives. Periosciences has a new hydrating rinse that has antioxidants and does not have preservatives, but it is more expensive. It's called AO ProRinse:

https://www.periosciences.com/product/rinse_h_10

I find both these products work really well.

For sensitive teeth, I've just started using Tooth Builder toothpaste. It doesn't have flouride. It gets some really good reviews on Amazon:

http://www.amazon.com/Squigle-Tooth...36323&sr=1-1&keywords=toothbuilder+toothpaste

 

I read some interesting articles about the connection of the mouth and teeth with the HPA axis a while ago. Something about how the hormones are sensed through the tubules in the teeth. I wish I could find the exact article because I am explaining this terribly! But anyway, it had never occurred to me that there might be a connection between a weak endocrine system and weak teeth but it appears that they are tied together.

Also, grinding the jaw is a way to stimulate the release of cortisol. Since many of us are low in cortisol, it makes sense that many of us also grind our teeth.

Ema

that's interesting Ema about how grinding leads to increased cortisol. That explains a lot in me.

 

Helpful discussion! Toothpaste: A common ingredient of toothpaste is sodium lauryl sulfate which even dentists can tell you causes mouth sores. Grinding and clenching: My muscles are always tightening and clench with irritation, maybe due to excessive glutamate? Not sure. Part of myofascial pain syndrome and fibromyalgia too in my case. This has caused all kinds of dental problems, expensive repairs and two extractions. Wearing a nightguard only protects the surfaces but can make the clenching worse, I found. Recently trying Lyrica, however, the grinding and clenching stopped. Lyrica reduces the glutamate activitiy. Gabapentin, which I like better in all other respects, does not have this benefit of stopping the clenching and grinding.

I wanted to amend what I said. Gabapentin does help with the clenching and grinding just not as much as the Lyrica, but because I like Gabapentin so much more in the spectrum of its effects, I am back to it and off the Lyrica. Also, a great natural toothpaste without fluoride or SLS, which also helps with sensitivity, etc. is Weleda's Calendula toothpaste. Best product I have found in years.

 

I am a Registered Dental Hygienist. One of the best and easiest things anyone can do to take care of their mouth is to buy an Oral B Electric toothbrush in SOFT. This is easy to use and you can buy additional brushes to use when you need a new one- they fit on the electric base. Even if you are disabled it works wonderful on the gums and teeth. Rec for kids with braces or anyone that has a problem. Sensodyne toothpaste without fluoride mint is also good if your teeth are sensives from recession or eroded enamal. Of course Having a reg Prophylaxis at least every 6 mo is better -but the brush will help along with flossing very day. There are also interdental stimulators to clean in between the teeth that are great and easy to use. Rinsing your mouth with water after meals will help with the plaque. Once it has hardened into Tarter-you can't get it off without a dental cleaning. The bacteria in your mouth from tarter is much more dangerous than going in for a cleaning. In protest with my dentist I had all my Amalgums (silver filling replaced) with Composite (white). However you have to be careful not to inhale the Amalgum Vapors when they are doing it-so you need someone that specializes in the removal. I have no idea whether this helped me or not. Some say the risk of removal if not done right may not be worth the price.People whose immune systems are compromised may need to ck and see if they need a Pre med of an antibiotic if they have a Periodontal problem. (gum disease). Or heart issues.

Really a professional cleaning is the best way to catch any dental problems early. I do not do x-rays as often as they are recommended. You do not need them every year. Don't care what the dentist says.

Hope this has helped some people. The Electric toothbrush is a must for excellent cleaning at
home. I also like Peroxyl mouth wash for dental soreness and freshness. You can also use warm salt water.The Peroxyl does have Peroxide, but creates oxygen in the tissues and helps with dental Perio problems.

Best San Diego #1

 

Helpful discussion! Toothpaste: A common ingredient of toothpaste is sodium lauryl sulfate which even dentists can tell you causes mouth sores. Grinding and clenching: My muscles are always tightening and clench with irritation, maybe due to excessive glutamate? Not sure. Part of myofascial pain syndrome and fibromyalgia too in my case. This has caused all kinds of dental problems, expensive repairs and two extractions. Wearing a nightguard only protects the surfaces but can make the clenching worse, I found. Recently trying Lyrica, however, the grinding and clenching stopped. Lyrica reduces the glutamate activitiy. Gabapentin, which I like better in all other respects, does not have this benefit of stopping the clenching and grinding.

For those who clench their teeth:
I didnt realize I clenched my jaw, until I started using magnesium oil
to try to bring my levels up. I just rubbed in on my thighs and lower legs
before bed. Within a few days, maybe week, my jaw became really relaxed,
Something I hadnt felt in years....didnt even realize it was tight to begin, until it wasn't.
But one of the other strange side effects of Magnesium oil was that
my mouth and eyes which had been really dry since having chemo 15 years
before went away. I had tried many other magnesium pills and powders
before this, but nothing gave results like magnesium oil.

One caveat though, it's kinda wet, sometimes itchy to use. I rub coconut
oil on over the magnesium oil otherwise my skin itches as i am very
sensitive to EVERYTJING

 

Getting a cavity filled is a nightmare for me (and my kind and understanding dentist). Not because of the drilling - that I can take - but because I can't open my mouth wide enough for longer than a fraction of a second. The pain and cramps from trying are worse than anything else I know.

 

I haven't been to the dentist for 2 and half years - I saw a you tube video about a woman who hates dentists and goes about every 5yrs!!! she uses PLAX twice a day rinses for a minute before using an electric toothbrush - also flosses daily. I have ordered some PLAX from the US as can't get it in the UK and getting to work with my oral B.
I have to have my teeth cleaned properly as I have a lot of tarter and plaque - but the hygienist said I wasn't up to it last week - so trying to get them a bit cleaner before I go again and then I can have my amalgams out the week after.