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Adrienne Dellwo

Dental Appointments With Fibromyalgia & Chronic Fatigue Syndrome

By March 8, 2011

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Really, who likes getting dental work done?  If healthy, normal people run screaming at the thought of a root canal, what are those of us with fibromyalgia -- who are especially pain sensitive -- to do?  People with chronic fatigue syndrome may or may not have the same pain issues, and they can have other dentist-related problems as well.

As I write this, I'm sitting here numb from my upper lip to my eyebrow, knowing that when it wears off, I'm going to hurt and hurt bad.  It took 3 shots to fully numb my over-excitable nerves so I could have a root canal.  My remission is holding steady enough that I don't expect the aftermath to be too horrible, but my ordeal today brought back memories of a few years ago, so I thought it was a good time to talk about the special problems we can face when it comes to the dentist. I've identified five:

  1. Getting us numb. We feel things more than most people, and if you're like me you might need extra medication to get fully numb.  On more than one occasion, I've thought I was numb only to discover -- once the drill started going -- that I could in fact still feel plenty!  The flip side of this coin is that we also tend to be sensitive to medication.  The key is to communicate with your dentist, start with the smallest possible dosage (unless you know you're OK with it), and work up gradually until it's effective.
  2. Vibrations. The vibration of the drill isn't something we can keep from feeling, and it can get your nerves really worked into a frenzy and cause severe pain for many of us.  Even today, it caused cold waves of nerve sensation all through my body.  You might want to be prepared to take pain medicine immediately after your appointment and arrange for a ride home in case it's not safe for you to drive.  I try to breath deeply and meditate to keep my brain and body calm during drilling and grinding.
  3. Jaw pain. Something I DO expect to be a big problem for the next few days is my TMJ.  My mouth was open wide for a good half hour or more, and my jaw started hurting after just a few minutes.  It feels really stiff right now (at least, on the side I can feel), and I know I'll need to do some extra icing and stretching over the next few days to get it quieted down.  I'm kicking myself for not taking anti-inflammatories before my appointment to keep it from getting this bad -- I should know better by now.  (Make sure to talk to your dentist about anything you might want to take before an appointment to ensure that it's safe!)
  4. Anxiety. If you are anxious about a dental appointment, you may want to talk to your doctor and dentist about medications or supplements that can ease your anxiety.  My favorite calming supplement is theanine, which is found naturally in tea.  When I catch myself stressing about something, I generally take a little extra or sip on tea.  I've also successfully used DHEA, but it comes with a lot more risks and possible side effects.
  5. After-effects.  It's common for us to feel worse after getting dental work, or any medical procedure for that matter.  Your body might have a delayed or prolonged reaction to the medication, and you might also have post-exertional malaise.  Whenever possible, plan extra down time for yourself after you have something like this done, and take good care of yourself before and after the procedure to help your body recover.

The numbness is wearing off now -- yeah, ow!

What experiences have you had at the dentist since you've had fibromyalgia or chronic fatigue syndrome? What helps you get through it with fewer consequences?  Leave your comments below!

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Comments
March 8, 2011 at 3:18 am
(1) Stuart Woods says:

I had some surgery under local anaesthetic. I told the Doc that I needed extra and more time fore it to take effect. Even then, when he made a 2 inch incision I felt every bit of it, as if there was no anaesthetic at all. It took three times what I had already been given to make me numb.

I had had so much that I threw after and was sick for hours.

Having another surgery under local in a couple of days. Am sooooo looking forward to it :-|
:-|

March 8, 2011 at 4:34 am
(2) Hope Ann says:

I had to have a tooth extracted a few weeks ago. It didn’t hurt, but the part where she grasped the tooth in the pliers and tried to loosen it shook my head around and made me so dizzy I couldn’t continue. They had to send me to the oral surgeon who made an incision to make the extraction easier.

March 8, 2011 at 5:56 am
(3) Barbarella says:

Points 1, 2, 4 and 5 I totally dig! However, I found that once my dentist started using a rubber block to keep my mouth open while heīs working, helps me soooo much, I couldnīt believe he hadnīt used this on me before!

He told me that most people find it uncomfortable, but I found it much less uncomfortable than having to hold my jaws open and get painful muscle spasm after only a minute. Thanks to this I also donīt get jaw pain afterwards.

I would urge anybody with fibro/CFS to at least try this and see if you can tolerate it – it certainly helps me a lot.

March 11, 2011 at 7:13 pm
(4) Lyn says:

Yes, Barbarella, I was just going to mention the rubber block the dentist uses to prop your mouth open when working – until I read your blog. I’ve had this done for me for a number of years now, and oooooh – what a difference it makes ! Also discovered when an asst. tried to insert the rubber block, that they actually come in different sizes !! Surprise surprise !! She tried to insert a large, when I needed a small. Now I know to warn them – had no idea that they came in different sizes till that episode !

March 15, 2011 at 8:01 pm
(5) leorising says:

My dentist just used this on me, and what a luxury! Thanks so much for bringing it up, I was savvy enough to ask for one during some major dental work. :D

March 8, 2011 at 8:30 am
(6) Gladys says:

I had dentists that did not understand the pain I had even during a cleaning. My teeth all broke, rotten, bad with infections. Could not take the thought of the pain of getting it fixed. Finally got a dentist to take them all out, have dentures now. A huge relief. I am happy, and no pain in my mouth now.

March 8, 2011 at 9:27 am
(7) Lynn Rider says:

I’m in ongoin dental hell for past 18 months, have had root canals which lasted an hour which caused me a weeks relapse, tried to cope with non adrenaline anaesthetic but wouldn’t go numb. Have had 2 roots beneath crowns extracted which involved cutting into the gums, that left me with 6 months of relapse and nightmares. Have had a very painful tooth abscess for the past year but have been too ill to go back and have to keep taking antibiotics to settle it down so have more horror to come but had the worst Winter ever with virus’s and infections and sinus trouble, been in bed for 4 months, need to get it sorted though as not good to leave chronic infection. Dental work is horrific with ME/Fibro but extractions are the worst I felt like my head was being ripped off, dreading next lot of treatment, have to find a decent dentist first had no end of trouble with them and many of them haven’t a clue about ME/Fibro and it’s complications :(

March 8, 2011 at 9:42 am
(8) Cheryl says:

I learn something new every time I read this blog……for some reason I had never connected issues at the dentist with FM/CFS. I’ve not had to have much dental work done, but what I have had to do has been excruciating for me. Even just a cleaning can be unbearable.
I had my wisdom teeth out at 17 and it was one of the worst experiences of my life. They were impacted and I had to have them surgically removed, but due to an allergic reaction to anesthesia, I was only given novacaine shots & laughing gas…..and unfortunately I could feel everything they oral surgeon was doing……after what I’ve read today, I’m pretty sure due to undiagnosed FM, I probably needed higher doses of the novicaine to numb me…..
Long story short, my jaw was dislocated twice during the procedure and I’ve had horrible TMJ every since…..
Adrienne – thanks for the wonderful blog

March 8, 2011 at 10:47 am
(9) KARIN says:

Last week I had to have 2 molars removed (the gum was infected badly). Started with pennicilin, moved on to x-rays which caused the jaw to spasm. Got 3 shots of novocaine, still in pain. Got a usual dose of nitrous oxide, still in pain and AWAKE! Got more nitrous, and then a little more! More than I had ever needed before! Usually jaw would remain numb for 5 or so hours, this time 2 hours and PAIN! Used to be that the nitrous was turned off and I was awake. This time, had to be taken to the car in a wheelchair and into my condo by wheelchair! Out of it for hours!
More bleeding involved than ever before! (with stitches!) What an awful experience, I don’t like teeth anymore. Soup anyone?

March 8, 2011 at 11:13 am
(10) julie says:

dentist offices are not equipt to help fibro patients.. Altho i told everyone there i had fibro issues.. they really really hurt me.. from just taking xrays to how they positioned me for work.. I was very uncomfortable.. and left not wanting to ever go back.. Let me just say.. im usually ok with the dentist.. my last dentist was fine.. just this new one had no clue and made me flare for 4 days!

March 8, 2011 at 11:25 am
(11) KAL says:

Another issue that is very important for ME/CFS patients is that cleaning of the teeth and other procedures often introduce bacteria into the bloodstream. With an already compromised immune system this may compromise the patient further. Discuss with your doctor and dentist whether you should take an antibiotic concurrent with treatment.

March 8, 2011 at 11:35 am
(12) Carrie says:

Currently, I have 4 teeth that the fillings have fallen off, tooth rotten underneath. Dentist I had, got sent back to school because of it. Need to get this fixed, especially before wedding in June, as one of the fillings that fell off is on one of my front teeth.
There are dentists who specialize in patients with fibromyalgia, as one came to a support group meeting last year. Apparently the fillings falling out, is extremely common for us, as medication can make your mouth dry, which is what causes the fillings to not adhere properly. Got to love the fibro. Not.

March 8, 2011 at 11:39 am
(13) msdesertcat says:

I have had this problem of the pain killer not working…needing massive doses and being thrown off almost before the work is finished from clear back into childhood. Never associated it with the fibro. Even had a skin cancer on my face removed in a doctor’s office a few years ago. Told him i needed extra pain killer…he insisted he had given me plenty. Shortly, after beginning the procedure he stopped and said…’You weren’t kidding, were you?’ and gave me two more shots before he could complete the surgery.

March 8, 2011 at 11:54 am
(14) Kimberly says:

A couple of years ago I had to have my teeth cleaned :/ he numbed me but it failed to work.. he then decided that I needed 2 teeth that had silver in them removed and filled with porcelin. He kept asking me why I wasnt getting numb. he actually asked me if I did cocaine..UM NO!! we just couldnt figure it out took forever to get me numb, after the numbness wore off my teeth were killing me and espcially where he re-filled the two teeth I couldnt eat on that side for about a year, yes I called my dentist to tell him…but I just couldnt bring myself to go back..about 7 months after all this I found out that I had fibro and now it explains so much. so I need to make an apt but am still shy about going. I just dont want to go through all the pain that it causes

March 8, 2011 at 5:47 pm
(15) Malkabee2 says:

Whenever I know there will be any drilling or digging involved, I insist on the gas before they even stick me the 1st time with Novocaine. Then, I too usually require 2 or 3 shots before I’m numb enough for the work to be done. My dentist and I have a “code” if I’m feeling something beyond normal or just need to catch my breath to release tension. I’m to raise my left index finger and that tells her to stop as soon as she can if not immediately. I also make sure she uses a rubber prop to so I don’t have to use my jaw muscles to hold my mouth open. My jaw’s been known to lock if it’s open beyond what’s comfortable. There’s one more thing I make sure happens before I even let them get started: I make sure they put me in a room that has the new chairs, which have extra wide shoulder support, so I’m not inadvertently holding my shoulders tight, simply because they aren’t supported. It really makes a huge difference. Oh, and one more thing, I bring my foam wedge to put under my knees when I’m being worked on, particularly because my dentist also has back problems, as do I, and it helps both of us. She can lean over the way she needs to without straining her back with a 1/2 bend and I can lie relatively comfortably while being laid flat in the chair. Dental work is no fun and I can’t figure out why, if scientists can get us to the moon, they can’t design a drill that doesn’t sound so menacing! What’s up with that?

March 8, 2011 at 7:59 pm
(16) Fran says:

My reaction is much the same as Stuart’s but I have a patient dentist and though I need more anesthetic, I usually am OK. It does take a while to wear off though.

The weird thing is that I often feel much better immediately post dental work. I don’t know if it is a systemic reaction to the anesthetic or if it is the adrenaline I secrete but my energy is often improved; I feel brighter and have less pain. The next day I usually pay for my holiday though with exhaustion and a day or two in bed.

Thanks for all you do Adrienne, Fran

March 9, 2011 at 1:18 am
(17) Creek says:

Very important note: patients with POTS (often present in CFS) should NOT be given Novocaine. It can kill.

March 9, 2011 at 7:05 pm
(18) Sherry says:

For 7 years I was fortunate to have a dentist whose father had fibro. He completely understood everything I needed and did lovely work without pain. He developed or purchased special pillows to brace my neck, lower back, knees and ankles. He got sling-like rests for my arms so they were able to relax free-floating instead of being forced against a hard surface.

His hygienist knew that I am allergic to mint, so she used kids’ flavoured compounds and floss.

I can endure almost any pain after 20 years of fibro, but being in a dentist’s chair for more than 20 minutes leaves me paralyzed and then stiff for days. And injections can be very tricky. An extraction with another dentist required more anesthetic than he thought I should have. He was frustrated and not careful, hit a nerve and left my face paralyzed for two days….2 days of drooling and biting my tongue!!

My next project will be to address the issues fibromites have with the College of Dentistry at our local medical school. Unhealthy teeth are very, very bad for the heart and general health. If a dental student can understand that, they can understand that hurting people in the practice of dentistry is not a good thing.

Thanks, Adrienne. Always enjoy your blog.

March 11, 2011 at 3:36 pm
(19) Mummylady says:

Two years ago I had to have a radicular cyst removed–it involved three molars, gum, jaw and part of my palate. It was massively infected and I had been ignoring it for a long time because of issues with the dentist. I am allergic to most anesthetics and most pain meds–especially the “caines” The oral surgeon used propofol which was good, but he added fentanyl to help me relax and I was sick for days afterwards. I developed post surgery abcesses and he kept telling me I shouldn’t be having all the pain and discomfort I was having. He just didn’t get the fibro part at all. My gp sent me for cat scan and discovered the abcesses and put me on antibiotics, but I developed a lot of scar tissue which damaged the nerves in my cheek so I now talk funny, especially when I am overtired or stressed–I sound as if I were deaf. I have lack of feeling in my palate and a constant dull ache in the sinus which I am learning to just ignore. My gp wants me to get a partial denture to fill in but I’d need reconstructive surgery and my insurance called all of this unnecessary elective surgery and so didn’t pay for it, and I don’t have dental, cannot afford it (and neither of them would pay for the reconstructive surgery anyway). That was insult to injury!!! I’ve cracked a few fillings and I do need to go have them fixed but to be truthful, I don’t want to think about it.

March 11, 2011 at 3:37 pm
(20) shastadaisy says:

It seems like my body parts take turns with their own special flare up. Right now it’s my teeth. I had a root canal that “went bad”, was the definition I was given by the oral surgeon. As a result of this bad root canal, that was over 4 years old, I lost 3 teeth and the right side of my lower jaw. I had to have bone taken from my hip and grafted into my mouth to replace the jaw bone that was removed. So far my out of pocket expense for all this has been over $14,000. Dental insurance didn’t touch a thing. I even had to pay extra to be sedated when the oral surgeon took out my teeth and jaw bone. I cannot imagine how anyone in their right mind would have that done with just novacaine. This who process has taken nearly 2 years. I’m finally in the process of getting dental implants. Of course dental insurance doesn’t pay for that. They will pay for a bridge that you have to take out and clean everyday. They are paying $2000 towards my final bill but then I don’t have any dental insurance to cover anything else for the remainder of 2011. I can’t help but feel that fibromyalgia played a part in all this. My gums are as sensitive as the rest of my body. It hurst to brush my teeth, and flossing is torture. Oh, and I have TMJ.

March 11, 2011 at 3:43 pm
(21) Barbara says:

I now have a general practice dentist and hygienist who are wonderful. They are very gentle with me, check in with me constantly, and provide a warm neck wrap and blanket if I want. She also tries to have me use the split to bite down on-it saves the jaw muscles. I’ve had lots of dental procedures the last 2 years with specialists. I always tell them to use the numbing medicine WITHOUT epi. If I get the one with epi (it decreases bleeding and lasts longer), I shoot into a panic attack from the adrenalin. If I know I’m going to have work done, I try to remember to take a NSAID before-hand and also a low dose of xanax to keep me more relaxed.

Eight years ago I had a dentist put a block in and I had a flare-up that lasted 6 months (including pain in the mouth/jaw).

March 11, 2011 at 4:07 pm
(22) alleytamcat says:

I try to take a pain killer before I even set foot in the office. I also ask to be frozen 20-30 minutes before any procedure starts, so the drugs have lots of time to set in. Additionally, I ask to wear the lead apron (used when taking x-rays) during my entire time in the chair. The weight helps keep me warm and calms my nervous system.

March 11, 2011 at 4:38 pm
(23) Chris says:

I started getting dental treatment at the age of 4 and it continued throughout my life. I’ve always required more injections than other people. Most dentists just couldn’t understand this and I felt they were disgusted with me. Now I’ve found a wonderful dentist. He understands that I need more anesthetic. I never feel a thing and have no pain afterward. It only took me 60 years to find him!! I hope others can find someone like this.

March 11, 2011 at 5:46 pm
(24) Virginia says:

Please share any experience you have had with periodontal disease r-t CFS. Apparently it is common, and I am wondering if the treatment is even a cure. If the underlying disease CFS never is cured, why would you have your teeth deep cleaned every 3 months at $500. a treatment…thanks

March 11, 2011 at 7:14 pm
(25) Kathie says:

Having just come from the dentist, I read that article with interest. Re jaw pain. My dentist has a “bite block” which is inserted between upper and lower jaw opposite side he is working on. It has taken all the post appointment jaw pain away. Try it.

March 11, 2011 at 8:32 pm
(26) Karen Harvey says:

I always had excruciating pain going to the dentist even for a clean. I usually end up with a second dose of local anaesthetic which makes me nauseas after and my TMJ joint goes into spasm during treatment. The dentist has to keep reminding me not to clench on his tools. It’s so embarrasing. My shoulders are up to my ears for days afterwards.

I have given birth to 6 babies and I have always said I am more afraid of the dentist than the midwife. Believe me, I mean it.

March 11, 2011 at 8:38 pm
(27) Tammy says:

Just the process of the dental chair going back into position can send me into an anxiety attack. Not sure if it is the motion or the position laying back or what but it sure doesn’t make my trip to dentist start out well. And it goes down hill from there. Lots of numbing and lots of teeth issues. I think that cfs/fm plus being a celiac cause a lot of my teeth issues. And the dentist doesn’t have a clue. Last time I went, I got a lecture on taking better care of my teeth. Dear Mercy! What next!

March 11, 2011 at 9:26 pm
(28) Cheryl K says:

Between the Methadone I take for Fms and CFfids and the dry mouth if those 2 diseasess my teeth are cracking and just had an absess under a crown to the tune of $892.00 aftyer insurance.My dentist said eventually i will lose all my teeth. Isn’t life grand.

March 12, 2011 at 5:15 am
(29) janet says:

Since my diagnosis with FMS I’ve been happily surprised to have a number of mysteries explained. The dental ones are interesting. I never expected my dental problems would be related to FMS. One of the things that I already knew from experience was that the use of adrenaline in lignocaine causes me to have a nasty adrenaline reaction incl visual disturbances & a very nasty feeling. Once I asked the dentist to not use adrenaline I found that the lignocaine worked much better. That was the next interesting thing: I always had to have many shots to anaesthetise my mouth – sometimes I’m sure my dentist thought I was barking mad. But he has been very tolerant and continued to help. My next move will be to ask him to lightly anaesthetise even when he scales my teeth which is sweet agony. I also make sure that other practitioners are aware of the effect of adrenaline. Have had a couple of skin biopsies recently, which bled like crazy w/o the adrenaline but at least I wasn’t sick. I haven’t spent a lot of time looking at FMS and adrenaline, but years ago when I first started talking to a GP about my situation there was some discussion around whether I was experiencing increased levels of adrenaline. I’ve found since being diagnosed that this may very well be the case – eg and I haven’t yet worked out the veracity of this site http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/cfs-and-fms-as-adrenaline-exhaustion/. A few months ago I experienced an extremely painful jaw which I was sure was due to bruxism. The dentist was sure it was due to the need for a root canal treatment $$. I had the tooth extracted eventually. Since I’ve been diagnosed I wonder if it was myofascial pain/TMJ .
I found out some very interesting things from the following sites: http://fibromyalgia.ncf.ca/dsdental.htm
http://homepages.sover.net/~devstar/dentist.pdf
I will be referring my dentist to these sites.

March 12, 2011 at 10:33 am
(30) s says:

I take alprazolam a half an hour before I go in to the dentist. I have had so much work done I need to do that to even make it in the door. was supose to have some gum cut back and a tooth pulled and I didn’t want to remember it so was referred to a oral surgeon who was supose to put me asleep first, but that didn’t work out so he cut my gums back on the whole right side molars with alot of novacaine and nitous gas, then asked my husband if he could do the other side cause he knew I wouldn’t come back and he said o.k. so he cut the left side of my mouth gums back on both the inside and out WHILE I WAS WIDE AWAKE!! noone told me this was going to ruin 13 crowns and a bridge! then we had to pay $6,000 because dental doesn’t cover perio work. I was a wreck for a year after that cause he had to sew up my mouth and it waslike a spiders web for the first 3 days couldn’t talk at all. It was a nightmare. I always bring my own music with me to try and drown out the dreaded drill. find the most upbeat yet relaxing music possible, enya is good. even for cleanings I listen to my ipod. I couldn’t eat after he cut all the gums, rice felt like skewers, u don’t realize u need your gums for chewing things like raw carrots and popcorn. I lost 90lbs. because it hurt the gums to eat anything. thankfull for carnation instant. the oral surgeon said it’ll probably cost u $41,000 I had no idea that was the $ to redo all my crowns. I am not on disability or ssI and we have 2 sons. I am 3 years out and I have no lower left teeth just the front and r lower teeth. he still has to pull s upper left teeth and replace the bridge. see when they cut the gums back it exposes some of the roots. I have OA in my neck. when they pull teeth it really ranks on the neck. the pschological damage that man did to me that day took a whole year to get over and yet I still am paying for it

March 12, 2011 at 5:27 pm
(31) eevee says:

maybe its because I used to be a dental nurse but I can have all my fillings with no anaesthetic at all , that puts paid to the over sensitivity to pain FMS theory (in my case anyway)

you will find that you can get cavities around the cervical surface ( neck of the teeth) right at the gumline, this is due to dry mouth, usually from taking amitriptyline,so do not let your dentist lecture you on bad brushing or too much sugar, there is not much you can do about dry mouth cavities
it is surprising how many dentists do not actually know that, I only know that because I took the dental educators course .

March 13, 2011 at 3:08 pm
(32) Deb says:

Several years ago my doctor put me on methadone and norco (after I fell and almost broke my leg. Before that he refused to give me anything.) The first thing he said to me when I was diagnosed was “If you don’t get ahold of it, it will get ahold of you”-meaning that everything that happened from that point on would be my own damn fault. Luckily I had read a book by a woman doctor who had fibro, or I would’ve believed him and lost my mind. Anyway-I still remember him asking”Do you have good dental insurance?” At the time we did,but he didn’t explain why we’d need it. Or that there are things you can buy to prevent the dry mouth that comes with the pain med use. Long story short-one by one my teeth began to break off. By then we didn’t have good insurance, and we didn’t have any money either. So both my disabled husband and I are pretty much toothless and ashamed to show our faces in public. I fully expect to die this way, because I can’t see any way that I can afford the cost of all the work I need. We have excellent medical insurance from my husband’s govt. job that he had before he became unable to work, but the dental part of it is a joke. Also-dry mouth is considered a medical problem, but the insurance still won’t pay for the damage. I wondered why when all the health care fighting was going on nobody mentioned the lack of dental care available to the average American. It’s just fodder for comedians, but it’s no joke to me. My husband’s current doctor didn’t know the correlation between certain meds and dental problems,which I find sort of incredible. Okay, gotta go now. It hurts to sit here anymore. Good luck to us all.

March 13, 2011 at 7:38 pm
(33) Wendy says:

For me, the worst part of any dental procedure is the sound of the drill, particularly the slowest-moving ones…i am fairly well convinced that my fibro was initiated from a very bad dental visit. When i was 19, i had a problem with a molar. The dentist was using one of the slow-speed drills when he broke through the enamel and drilled into the nerve in my tooth. OMG the pain was awful. (I STILL cringe when i think of it, forty years later!) I was dental-phobic for the years after that. The only way i could get my teeth cared for was to use a dentist who used twilight sedation.
I am now blessed with a very compassionate dentist who understands the pain i can experience, even when i am loaded up with lidocaine. There have been times during a root canal that he had to inject the lidocaine directly into the nerve of my tooth. He always schedules extra time when i am due to get a drilling-required procedure, so if i need more lidocaine there is a cushion of time to allow it to work. Because of his understanding, i have had literally no pain from any of the root canal procedures i have had done…a good one-third of my teeth are have root canals/crowns.
The ad that caught my attention when i first looked for a dentist was “We cater to cowards.” While i am not a not a coward, the fear i had was very strong. I explained to him exactly why i was so frightened, and ever since our first visit, when i needed to have a broken tooth repaired (on New Year’s Day!!!) he has been terrific in ensuring that i feel so pain no matter what procedure i need.

March 15, 2011 at 3:16 pm
(34) DICK DIVER says:

DUE TO TOXIC REACTIONS TO NOXIOUS IMPRESION MATERIAL, I CANNOT HAVE DENTURES MADE. DESPITE A HIGH I. Q., I CANNOT (DENTISTS EITHER) FATHOM A WAY OF GETTING DENTURES IN SAN FRANCISCO BAY AREA THAT I CAN TOLERATE.

DOES ANYONE HAVE IDEAS ABOUT THIS? I CANNOT TRAVEL MORE THAN 20 MILES. THANKS.

DICK DIVER

October 8, 2011 at 3:03 am
(35) orit says:

Hi Dick
Wow thought i’d never find/read someone writing about toxic reactions to dentures!! I am so fustrated. I keep on feering when i’ll have to change or get dentures to my front teeth which is inmposible cause since iv gotten fibro i cant have any new material in my mouth. I’v tried everything from plastic to titanium to gold to valplast and it starts burning and then hurting and then i feel as if some toxin is getting into my body and no one can figure it out. i’v bee told its in my head get over it or “can’t be” , or no normal reaction till i gave up. I dont smile anymore even though im a very humerous person i have many teath missing and have lost a l ot of confidence with that. I work with many people and always have a hand infront of my face when i laugh at something. :-(
If u have anything written onthis that i can show my dentist i’d really appreciate if u can forward to my mail. if u have any new suggestions that would be great too.
lots of health
orit

March 15, 2011 at 7:05 pm
(36) pepace says:

Someone mentioned novocaine and POTS. I second this comment STRONGLY. Typically, novocaine contains the same chemical as adrenaline, which somehow makes the numbing effect last much longer. However, the adrenaline also makes the heart beat much faster, which is enough to make you jump out of the chair if you have POTS. My heart rate goes up well over 200 with novocaine/adrenaline. The dentist can give you plain novocaine, but s/he has much less time to work before the numbness begins to wear off and another application is needed.

March 15, 2011 at 8:00 pm
(37) leorising says:

Adrienne, I had my first dental appt. in 10 years the other day, and I ran off this article and took it to my new dentist. He was glad to have the information, and it helped me the next day when I went in for a major root canal. Thanks so much — your information couldn’t have been more timely! :D

April 14, 2011 at 3:22 am
(38) Steph says:

My FM started about three years ago. Yesterday, I went to the dentist to have a broken molar/old filling repaired. I actually prefer to NOT have a novocaine shot if he feels I’ll be okay without it but not this time. Still, I didn’t expect I would have any trouble either way. Soon after I got home, my jaw and cheek were really sore from the injection site but I was still mostly numb where it should’ve been numb. No pain at all where he did the work on my tooth, just from the injection. First time I’ve ever had this kind of reaction: after most the numbness wore off (over 24 hours later and I still have some numbness left) I had severe facial pain, right side of face was swollen. Worst of all, it even flared up my back and neck herniated disc pain with headaches and leg pain that make me want to come out of my skin. I’ve been going to the same dentist for 17 years and the office is pretty certain the reaction is from the FM and how hypersensitive my body is to any attack on the nervous system and to medications. They’re really concerned for me and want me to keep checking in but I think another day or two should find me feeling better. I really appreciate having my dentist and the office manager being as compassionate as they are; it means a lot to have medical professionals that understand as much as anyone can understand this hellish disorder. Oh, and all this with taking the maximum I can of my pain meds which should be strong enough to take care of my pain head to toe…but no, sadly no.

April 15, 2011 at 1:29 am
(39) Allison says:

Does anyone have pain after the dentist when you are still numb?
Last week it took shot after shot to get me numb, and then it was still only half of mouth so I have to go back to sit through it again. I was numb for 6 six hours after and it hurt and drove me crazy.

August 9, 2011 at 11:37 am
(40) Jen says:

I had a very small cavity filled yesterday and now it feels like the filling is pressing on a nerve in my tooth. I have pain in my neck, shoulder, back, and calf. My fibromyalgia always acts up when I go to the dentist, but this time it’s bad. It’s like a bad cramp in my muscles. Has anyone else ever experienced this after having a filling put in?

October 7, 2011 at 4:34 pm
(41) Deborah says:

I recently have had a tooth extraction. It was a difficult extraction and for about a week later I felt like more than my tooth had been extracted. Now i have a cyst above another tooth and have even had to drain it myself, seeing an oral surgeon Monday. This one sounds like it’s really going to be fun-not really.

December 20, 2011 at 11:28 pm
(42) Rebecca says:

I have a broken wisdom tooth that I’ve been ignoring for over a year. But this morning, I started to get a nerve twinge now and then. I suspect a particle of food got in there, and when I’d swallow wrong or move my cheek wrong – OUCH!!!

I’ve been dealing with random tooth pain on the left side of my mouth for a year now (same side as the wisdom tooth) — but have been managing it with OTC pain relievers.

I am absolutely TERRIFIED to go to the dentist. I haven’t been to one since I had my braces taken off when I was 13 — I just turned 32. Not only am I seriously worried about the cost – I have no dental, only Medicare, and NO money — I’m having an anxiety attack about the pain.

As a child I could take a real pounding — except in my mouth. Just tightening my braces would put me in bed for 2 days begging to be shot, and missing school. Plus I had a bad experience when I was very young when my dentist pulled 6 teeth on one day, 4 baby and 2 permanent, one with a wicked root.

FMS couldn’t have made this easier. For several years, before my pain was managed, I was unable to brush my teeth at all — to do so, was like brushing your teeth with a wire-bristled brush. Flossing was like using a razor blade.

In the last few years, I’ve been slowing going into a type of remission, and in the last year, have been able to brush more often. I have a little mouth though — and I’m afraid they’re going to have to crack my jaw to reach the wisdom tooth. (I have 5 wisdom teeth, btw — with a possible 6 that I’m not sure if it ever materialized).

I’m SOOOOO scared of the pain. And the flare. I’ve been in remission for a year, active, and LIVING my life. I’m so afraid this will knock me back to being stuck in bed. My roommate has bullied me into making an appointment — but gods am I scared.

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May 23, 2012 at 12:57 am
(44) Daniela says:

After experiencing tachycardia at the dentist chair for having to get so much anaesthetic, I have been doing dental work under general. It changed my life. Now if I have a problem, wich is often, at least it gets fixed before it gets out of control and a bigger problem. But I still have a lot of damage from the times that I simply refused to go because I couldn’t take the pain. The down side it’s a lot more expencise and I don’t have insurance. I prefers to get into debt than to go trough dental pain, either at the dentist or at home from refusing to go to a dentist.

January 27, 2013 at 7:49 am
(45) Charlotte says:

On Thursday I had an appointment for two small composite fillings and I have been severely ill ever since. After I was given the local anaesthetic I felt a rush of heat and when I came out of the appointment I had a bad headache and felt shivery. As the day wore on I felt worse and worse and began to develop bad dizziness and the muscle pain I suffer from became much worse. It is now three days later and I am still feeling awful, I am virtually bedbound and my head feels very strange, disorientated and dizzy. I am wondering if I have had a reaction to the local anaesthetic that was used or if it was lying back in the chair with my head turned to one side for half an hour that has caused all this. I feel desperate and don’t know what to do about it. The doctors don’t seem to be able to shed any light on it all or be able to help me.

February 12, 2013 at 10:31 am
(46) Carole Heath says:

i had two teeth extracted 15 days ago as the crowns had fallen out and unfortunately the remaining teeth under the crowns were decayed. And my dentist said that if they weren’t removed infection could occur. I had one tooth out on a Tuesday and the other one 2 days later he also did a scale and polish on one occasion.I didn’t have much pain after the extractions but my gums became red and sore but i was advised to use warm water mouth washes 3 times a day. Reading Charlotte’s comment i had similar symptoms i felt tired and a headache came also a few days later. I also felt very depressed for a few days and quite lifeless. i have never felt like this before when having dental treatment. If my symptoms hadn’t improved i would have gone back to the dentist but i feel much better now. I had not been to my dentist for 3 years but i think if i had gone earlier the crowns could have been saved maybe extractions would not have been necessary. I

May 25, 2013 at 2:28 pm
(47) Lo says:

I have fibro. Anyone who has fibro know the random, all over pain we get daily. Dental work has always been something I dread. But as an adult living with fibro pain, I cringe, cry, and wish my teeth would just never get cavities. But, that is not reality. As luck would have it, I have had terrible experiences with getting cavities taken care of. In fact, the last dentist I went to told me she didn’t believe me when I told her I was still in pain. Can you believe that?!? I feel like I can’t trust any dentist to really listen to what I am telling them. Then the stigma around auto-immune diseases kicks in and I feel like I get looked at as if I have 3 heads. I don’t what to do or who to turn to anymore. All I know is that I am going to be taking extra pain meds before I go to the dentists and hopefully they will numb me us nice and good.

July 4, 2013 at 10:10 pm
(48) Trace Ogaz says:

I went to the dentist yesterday to get 2 cavities filled. Got the novacaine around 1:30 and numbness finally went a way about 9 pm. I have fibro but seem to be doing good. However, today I seem to have some numbness coming back in my lips and jaw. Lips have been lightly numb for about 4 hours now and my chin joined about an hour ago. Is this typical for anyone else?

Also, as the shots were wearing off, my chin would itch so bad, but I couldn’t touch it due to numbness. Is that crazy or what?

July 12, 2013 at 4:36 pm
(49) Laura bradley says:

I have a appt for the 09/08/2013 for a root that got left behind after being extracted, I’m having it done by a surgeon at the hospital and is so scared about it, I don’t like dentists at the best of times but to be cut open and have a mouth full of stitches isn’t exactly thrilling. Thank you for the comments and a wonderful blog.

July 12, 2013 at 7:27 pm
(50) Donna says:

Recently have had a “simple” root canal that turned into a crown prep after the old crown broke in half while doing the root cleaning. Ended up in the chair for 3&1/2 hours, and in bed all the next day. Can’t use any numbing meds with epinephrine…causes my heart to jump all over the place and makes me very shaky, so meds wear off sooner. I panic with the jaw opener in my mouth, so I had pain in my jaw and gums for 1 week. I have tried taking Ativan before my appts, and it does make me relax during, but does nothing for the after effects. I hate FM.
This has been a horrible year anyway. Surgery for colon cancer last September, incision opened up completely after 3 days, back to surgery, and 2 months in a Rehab Hospital with a Wound Vac to heal the incision that could not be re sewed. I never completely healed, back to surgery in May to remove the mesh placed 4 years ago to repair a hernia…hopefully to facilitate the healing. Received news that my 43 year old daughter died of breast cancer day after surgery. And home on a wound vac again. Just off the machine, wound is almost completely healed, and all the dental stuff happens. Sometimes you just have to do what you have to do. Thanks for letting me rant and vent..

July 12, 2013 at 9:38 pm
(51) Daphne Wallace-Edwards says:

They take your JAW AND PINCH IT- SHAKING IT- THAT IS EXCRUCIATING! I TELL THEM TO SKIP THAT PART!

July 13, 2013 at 3:39 am
(52) angelia says:

I went to the dentist on the 4th of july and its been over a week and i’m barely feeling some relief i’ had 2 molars pulled but where the needle went it swelled up my gums really bad and i’ve been on high dose of antibiotics and they are barely begining to work.

July 13, 2013 at 8:51 am
(53) Lynn Staples says:

Tell me, is TMJ common with FM patients? My Dr diagnosed me with it a while ago, I knew what it was, but had gone with severe earache, to be told it was from my jaw! I’ve had this on and off for years where I’ve gone with pain in my ear (particularly the right side), and nothing ever wrong with my ears. Now I have got to the stage where yawning in an art (lol) if I forget myself, and start to yawn normally, I’m soon reminded, as it feels like my jaw is about to dislocate.
I’ve also got a swelling on my face, just in front of my jaw, I had that scanned and was told it’s just fatty tissue, but it has got bigger since then, and for around a year now I’ve had a swelling on my outer gum at the bottom where my wisdom tooth is, the swelling is so far back, twice the dentist has tried to X-ray it, but cannot get far enough back. I never get tooth ache, sometimes it hurts if I press on it, but all these are so close together, I can’t help but wonder if they are all related?
I’m having a crown done next month, I’m going to ask about this rubber block, although I do gag very quickly often with virtually nothing, x-rays are a nightmare!

July 13, 2013 at 8:52 am
(54) June says:

I live in Northern Ireland and was diagnosed with FMS and Arthritis 4 years ago. Trips to the dentist were always horrendous even as a child. I had several fillings that they said were caused by sugars in medication. Each time id have to get 4-5 times the dose of numbing medication. Even the needle hurt like hell. Then i found a fantastic dentist and he gives me “Twilight Sleep” knocks me out for the whole procedure even for extreme cleaning. Most times ill sleep for the rest of the day but when i wake i have no pain and my TMJ doesn’t hurt or play up. I’m not sure if its available in the States or what it would be called but if you can afford it or your insurance covers it id definately recommend it.

July 13, 2013 at 9:19 am
(55) Debi says:

I also have learned through trial and error.
I always ask for a pillow to elevate my knees and a blanket to cover my legs.
If I have to wait very long in the cold waiting room, I go to my car and ask them to call when they are ready (do this for MDs, too.)
Non-adrenaline anesthetic to avoid nausea & heart racing, and it often doesn’t last the full procedure.
I speak up about things that make the work easier or more convenient for them but more painful for me like blocking my jaw open and immobile.

Be sure to ask about what they are doing and why and if you think it will be a problem, speak up. They don’t know how your body responds to pressure, cold, vibration, etc.and they’re not intentionally hurting us.

July 13, 2013 at 8:48 pm
(56) janet says:

Finally I have found a dentist that understands :) I slept for nearly 12 hours after my root extraction ~ Sedation Rocks ! I am actually feeling a lot less anxious about my future visits & I am looking forward to smiling without feeling like a hobo ~ Thank you Sharon Aldcroft & of course Dr Brown <3 2 my Fibro friends ~ This illness of ours is getting more & more recognition each & every day Dont Give Up ! Soft Hugs <3

July 14, 2013 at 3:05 am
(57) Carolyn says:

It is always so much help to me emotionally when I see how much others with fibro are experiencing the same things I do. It makes me understand myself and my illness much better. The rubber block is really helpful because it prevents me from having to force my jawbone and muscles to do so much work. Since I can remember, I learned to meditate during dental work. I take deep, even breaths and think about something really pleasant and relax to the point I look like I am sleeping. I always tell the dentist and assistant I will raise my hand if it starts to hurt or something is wrong and they need to stop. It is interesting to see that others have the same difficulty with getting and staying numb. I will have to let my dentist know about that. They always numb me up and then just before they start inject some more medication. I do always tell them that it wears off quickly so they are aware of that. I take my pain medication as usual but I may also take my Tramadol that I have for break through pain just as I leave for the dentist. The problem I have that I don’t know how to overcome is what to do about the pain afterwards. Since I already am on pain meds I can’t get anything else yet I do find that I have a lot of pain afterwards and Tylenol doesn’t help. I use ice packs on and off and try to eat cold things. I still wish there was something that they could give me for that first few hours that first day of dental surgery. Thanks to all of you for sharing, I love you for it.

July 14, 2013 at 6:31 am
(58) Bec says:

I have a small mouth to go along with the CFS/ME & Fibro. Thankfully my dentist is very helpful and uses a “wedge” to keep my mouth open so that way instead of holding my mouth open the whole time i’m just resting it on the wedge – saves a lot of jaw pain

July 14, 2013 at 12:53 pm
(59) Sandra Weidner says:

I am currently undergoing major dental procedures. I had a lower partial, one of my anchoring teeth, broke off a the gum, OUCH!! Went to dentist and he had to remove all 3 remaining teeth that I had. I had one other that had broke off a couple months earlier, but it had, had a root canal years ago, so no pain with that. I now have 2 mini implants in place. Get my permanent lower denture end of this month and in Sept get my caps to hold denture in place. I told my dentist off the bat that I had fibromyalgia, and he made sure I was comfortable and gave me several opportunities to rest my jaw and get up and move. This was the first time that I had seen him, as he has bought the practice from the one I had seen in the past.

July 15, 2013 at 4:13 pm
(60) Maryhelen says:

Last visit had a bridge done where a tooth had been pulled. It seems anytime I have lots of numbing done for work to be done it gets uncomfortable with my breathting. Once, shot was put close to my throat area and it numbed my throat and I felt I couldnt breath or swallow. They had to give me oxygen and calm me down. Then we started work. It was scary.,,

August 18, 2013 at 9:00 pm
(61) Debbie says:

For years I have struggled with aching joints and many CFS symptoms Have EB virus-my mom has fibro and I have worked very hard the last 5 years to finally be pain free, I eat all organic and juice greens everyday, avoid anything processed to the best I’m able,do yoga, take hebs……In fact I feel so much better that I failed to even tell the dentist last week that I had EB virus and have been told by my doctor that I could have CFS many years ago.Why I’m stating this is that since my “numbing” has worn off- 6 days now- I have had severe muscle cramps in my calves and my arms and legs remind me of the old days where I had restless legs and my head has this odd aching also, and I’ve been exhausted, napping every day since, actually spent whole weekend on the couch! I started wondering what I was eating or doing to trigger this no fun at all feeling…I’m very in tune to my body and knew something had caused this! I searched “LIdocaine and CFS” and found your info..I know the Lidocaine has done this to me…

September 8, 2013 at 12:36 pm
(62) Leslie says:

I’ve been diagnosed with FMS/CFS for 4 years, had TMJ years ago that braces corrected but have redeveloped it while doing crown prep work. Yes to the adrenalin part. Now my MD has me on Celebrex and Cymbalta which both controcel my symptoms amazingly well. Not the fatigue part however. I have an upper crown that I have hated since installed. Bacteria collects between it and next crown every day even with flossing. I wonder if the crowns have caused my FMS/CFS. Any ideas???

Thanks for the blog and info.

October 26, 2013 at 12:13 pm
(63) Website says:

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I’ve been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this.
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November 12, 2013 at 10:46 am
(64) Rose Everett says:

I have had great difficulty getting numbed up for dental work, too…and it always causes a fibro flare.
This past year, I also am having severe fibro flares after getting any kind of injections…cortisone, etc. I had a pre-cancerous place removed from my face yesterday, and, as soon as I got the local anesthetic, I began feeling as though I had the flu, then really bad fibro pain all over. Today is really bad for me.
Is there anything I can do to make sure this doesn’t happen with injections, or will it just get worse with time?
Off the subject question: Does anyone else have a problem with your church not understanding that you don’t go much, because the pain is so bad? What can I say to make them understand. There have been comments such as, “Some people like being sick!”. I want to go to church and Bible study, but the pain and anxious feeling is overwhelming. Any suggestions to help me to be able to go and not be in such pain?
God bless you all,
Rose

February 28, 2014 at 7:19 pm
(65) sandra perry says:

had 2 lots of root canal in past couple of months, torture, dentist had to keep injecting more nerve blocks into the nerve every time he drilled a bit more and the cauterising with the hot iron was worse

the twitching and jerking is the worst part for me as I cannot control it, the dentist says that this reaction was carrying on after the pain should have stopped as the nerve was extracted

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April 6, 2014 at 11:04 pm
(68) LilD says:

I had a tooth extracted yesterday. It took three shots of novacaine, but all went well. What’s perplexing to me is that after 5 yrs of Fibro, this is the first day I have no Fibro pain, & my mouth only aches a little, no pain. I’m so thankful for this, even if its one day, (hopefully more), but I’m just totally baffled by it! You would think my Fibro would be more intense today, but I feel normal, like before I was diagnosed. I’ve only had 1/2 Tyl/ cod #3 (mildest). Also, I have no fatigue today at all! I wanted to share this because its such a great day for me& I guess I won’t question it, & just appreciate it😀! Has anyone ever experienced this? Thanku for listening😊,

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