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Hi,
I'm writing to see if you can help me save my daughter. I'm afraid I'm going to lose her to this devastating affliction. She just turned 40 years old. Please read this part of her story and please help me.
Fibromyalgia, Myofacial Pain, TMJ Dysfuncion, Vulvodynia, Interstitial Cystitis, IBS and Lavator Ani Syndrome are just some of the things she has been battling for years. She has severe myofascial pain throughout her body.
Right now her main problem is the jaw. Severe pain has been present for years but now the jaw and neck muscles have spasmed and tightened into a fixed position. All muscles are like tight guitar strings. They actually stick out..the masseteur, temporalis, everywhere. Her body seems to be giving out after being in retractable jaw pain for so long. She is devastated and in a deep, deep depression. Her therapists are frustrated as not even the strongest hands can release her muscles. She has a pelvic floor therapist who does internal work and he is amazed at the condition of her muscles. Any kind of muscle work now sends her body into spasms and makes everything worse.
She wants a aplint which would let her jaw just relax, a stabilizing splint maybe. Splints with grooves cause pain. Flat plane splints let her jaw move too much. Noone can make a splint that helps at all.
Previously, biofeedback, done professionally and on her machine at home, would enable her to bring the muscles under control. No longer. 3 hour sessions do absolutely nothing. Trigger point injections or tensing throw her into spasm and render her useless for weeks. Information in a neuromuscular textbook pointed out how some fibromyalgia patients react adversely to tensing or trigger point injections. Have you found a difference in TMJ patients with and without fibromyalgia?
She is in pain when she talks, eats, watches TV, or trys to use the computer. She eats practically nothing.
Wants a splint she can keep in when she's eating. If she removes splints for eating she goes into more painful spasms. Right now she does not have a splint. One dentist made a small one for her that worked the best. She wore it when she had muscle therapy to stop the jaw clenching. Her internal pelvic floor therapy is painful. She lost the splint or it fell apart. I can't remember.
Side effects of any medication cause horrible constipation. We have found some green drinks that help slightly with that problem. She has tried all the recommended drugs...Neuontin, Soma, and all the others. Right now she is taking ambien to sleep which doesn't help much. Never wanting to rely on drugs (can't tolerate them anyway), she has tried holistic and homeopathic remedies.
She seems to be in a downward spiral exhibiting chronic anxiety, panic attacks for days on end and deep depression (she cries and shakes almost constantly). Her biggest fear right now is she can't feel things like she used to Can't feel where to relax the jaw as it seems to be in a permanent state of spasm. She's petrified of the big difference and believes wholeheartedly it will never let loose again.
We have actively read your book and I just ordered the stress related workbook for her
Have you ever found anything effective for such horrendous symptoms? I read something about an adrenal reaction that can cause spasm. Could this be the problem? I can't believe so many doctors and chiropractors and dentists and MFP therpists cannot produce even a little relief. She only becomes worse.
Someone told her to see Dr. Gary but he does tensing and that drives her up the wall for weeks with more spasms.
Since birth she has had constipation problems, light and noise sensitivity (which I never paid much attention to as I just thought she was fussy), lethargy (I thought lazy), psoriasis, yeast infections with discharge (starting at two yrs). This whole nightmare started a few years ago with a succession of events. A bladder infection, antibiotics, root canal and high stress. Everything started coming apart and she was on a horrible path that has led us to this hell. A beautiful, vibrant woman has turned into a weak, vulnerable, weeping, desperate human being crying out for help. And noone answers.
She has never given up thru all the pain and procedures. That is happening only now. She's so tired of people hurting her. Tired of hurting period! One doctor gave her a shot in her puedenal nerve and her rectum has never been the same. Always in spasm. Some have become frustrated as they cannot help her and they mistreat her. She feels guilty because she cannot recover.
What do I do? Where do I take her? How do I save her? All the professionals treating her now are stumped.......at a loss.......they say they have never seen anything like this before.
I don't know where to turn.
She keeps talking about your book so I thought I'd come to you for some advice.
Please give me some hope that we "can" find help.
I appreciate your time.
Thank you,
Bonnie
A Very Worried Mother
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Try the guifenesin therapy. If her pain is severe, look into getting a BOTOX shot in her jaw muscles. If you have access to the internet, why haven't you looked at fibromyalgia specific websites for help? There seems to be hundreds of websites out there that deal specifically with this condition. Just type in fibromyalgia into any search engine and you'll pull up tons of listings. Also your library will be loaded with books on this. Maybe go to your fav bookstore. A good book is called "What your doctor may not be telling you about fibromyalgia." Get the diet under control by following a whole foods diet. Browse the archives here and look up fibromyalgia and Leaky Gut Syndrome.
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Is she taking Magnesium? Has she had her Red Blood Cell Level of Magnesium checked? What is her Potassium level?
If either of these are low, you may wish to learn about Bartter's Syndrome and its variant Gitelman's Syndrome.
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
I think she should find a good holistic healer as soon as possible...someone who knows or works with someone who can put her jaw in alignment periodically (until she conquers this) and also, work at medititation (sr) and maybe CEnterpointe... in addition, she needs to find a relaxing Hatha Yoga class and commit to it. She also needs to drink lemon water.
I know nothing of her diet, but these things should get her in the right direction - and have her post as well! There is a wealth of info on this site, as well as a wealth of people who can help her and support her through this.
By the way - I had many of those symptoms...almost all that I can see, are stress induced. It just means that she isn't handling stress the right way. For the IBS, she needs to cut out also (which helped a ton) some carbs, most sugar and coffee....
Pray and be blessed,
Michele
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Hi Bonnie - It sounds like she has the wrong type of a mouth piece to begin with. Just to see if it helps, put two (one on each side) pencel erasers (the old type) or folded galzes pads at the back of her teeth and have her gently bite down on them to hold them in place and see if she doesn't feel some relief within 30 minutes. If she does feel some relief, then she has been using the wrong mouth piece. To help relax her muscles, have her soak in epsom salts for 30 minutes, 2X a day. Use 5 to 8 handfuls of epsom salt in as hot of water as she can stand it and give this a try for at least two weeks. If her skin becomes dry, use EMU oil or a good skin softener. She needs magnesium to help relax her muscles, which the epsom salts will provide but she should also either have magnesium injections or at least take 1000 mg of magnesium oratate everyday.
“TMJ” Have her exercise her jaw muscles by acting like she's blowing-up a baloon 4 to 6 times but don't strain. Try to teach her to never let her teeth touch together unless she's eating and do whatever is necessary to help her to avoid grinding and clenching her teeth while she's sleeping, even if she must take half of a Valium or half of a Muscle Relaxer before retiring to bed. Have her use one finger and search the outside of her gums for any “Very Sore” or tender spots and she finds any, push and hold that spot, until the soreness is elevated (usually to the count of 100). This process may take a week to a month of performing it before the soreness goes completely away. Be sure to search for sore spots where her jaw hinges because I’ve found that this is where the tension problem first originated. She also needs to practice the following simple stress reduction technique two to three times everyday:
STRESS REDUCTION TECHNIQUE
I’ve found through experience, that a stress reduction technique, which must be performed two or three times everyday, needs to be a simple one. I’ve previously tried some more complicated techniques and found that I was concentrating so intensely on visualizing with my minds eye, that I was actually increasing the amount of stress (tension) in my physical body. Therefore, start out by laying flat on your back on either a massage table or bed (if needed, put a folded towel under the small of your back, another one under the back of your knees and one under your head, to take any strain off your body and just visualize your muscles relaxing one by one, starting with my feet – then your lower legs – then your upper legs – then your stomach – then up your back – then across your shoulders – then down your upper arms – then down your lower arms – then down the palms of your hands and finish with relaxing the muscles in your fingers. This works better if you mentally say to yourself; my feet are now relaxing and say this as you mentally relax each muscle. I generally start over and perform this visualization two or three times before I feel completely relaxed, which takes 15 to 20 minutes. Then just lay there for another 15 minutes just enjoying that “Warm” and “Fussy” feeling that you are experiencing. You can also mentally say to yourself; I now feel my “CHI” (energy flow) flowing through my feet and continue on with each body part, until this flow can be felt as a tingling or burning sensation traveling through your Meridians. Sometimes you may even feel a sharp pain, which last for a few seconds, which indicates that your “CHI” is stuck or blocked at that spot and when it works it’s way past that blockage, the unpleasantness will disappear. I personally perform this technique two times everyday and I can tell a big difference (drop) in my stress level. I also take one Magnesium Orotate tablet everyday, which helps to relax my muscles, as well as protects my Heart! To order the magnesium orotate phone: 1-800-223-1216 – Product No. KA-1827 – cost $6.00. I also have a favorite meditation tape which I listen to as often as possible. Its called “Rainbow Meditation” to order it phone: 1-800-862-2923. The CD cost $16.00 and the cassette cost $11.00. You could also sit in a chair and visualize the tension (a heavy feeling) draining out of your body, starting with your head. Mentally say; I feel the tension draining out of my head and keep saying this until your head feels light and continue on down through each part of your body, until you reach your feet, where the tension goes out and into the ground. You could also mentally repeat a “Positive Affirmation” to yourself two or three times everyday. Say something like this; Even though I’ve been sick - I (your name) choose to now be healthy, happy and stress free and I completely love and except myself! These are a few ideas that I hope will help! * S.H.A.P.E. *
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Hi, Bonnie.
The really important thing is that you are writing this and not your daughter. SHE has to take the bull by the horns. You cannot resolve this for her no matter how much you care.
EVERYTHING you have mentioned is either directly or indirectly caused by bracing! The options as to what to do about bracing are in the archives.
She needs to read Roger Golten's book and find a good Hellerworker or Rolfer to help her do the SR she so desperately needs. Alexander Technique would also help this start resolving.
I hope she, and you, can make this breakthrough as to who is responsible. If not, you are just going to have to love her as she is until the end.
Walt
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Bonnie,
Wow, what a difficult case. What you have going on is pretty complex, so I hope Dr. Stoll and some of the others answer you soon. Sounds like you and your daughter are going through hell.
Dealing with leaky gut syndrome (LGS) and candida-related conditions should be beneficial. Helping You and S.H.A.P.E. have both posted information on healing protocols for that. Consider starting with a very small dose of Primal Defense--a quarter of a tablet daily, maybe. See the archives.
You mentioned a root canal being one of the things that kicked off these problems. A lot of alternative healers believe that root canals can contribute or even cause a large number of chronic illnesses because they are a constant source of bacteria that leak toxins into the body. Also, depending on where the tooth is located, it might be affecting the body's energy/organ meridians. You might want to consider having the root canal tooth removed. Of course dental work is very difficult for people who already have TMJ problems. Hal Huggins, DDS, is a pioneer in removing root canal teeth and other aspects of toxin-free dentistry. The sickest people go right to his clinic in Colorado and have the work done there. Also look into possibly replacing her mercury dental amalgams with composites, if she has any. See Dr. Huggin's website and books (Uninformed Consent), curezone.com, Sam and Michael Ziff's publications, Genung Dentistry--www.toothwisdom.net/m.battery.html. I'm sure there is other information out there on the web and there are a number of other books on the subject that your library could find for you through interlibrary loan.
If she could learn to do skilled relaxation, even for just a few minutes a day, it should begin to help. Whole food supplements like Perfect Food, vegetable and greens juicing, good, clean, usable protein sources--either organic meat and eggs or whey protein drinks, and home-made broths would nourish her without too much stress on the digestive tract. For constipation, look into Super Seed by Garden of Life. I take a couple tablespoons of that mixed with juice and additional ground flax seeds, sometimes plain psyllium powder also, twice a day, and follow it with a glass of water. It can also be mixed in a bowl with yogurt, applesauce, etc.
Do you/she have an alternative/complementary medicine doctor? It doesn't sound like allopathic medicine has had much to offer you so far. Have you looked into magnesium IVs for the muscle spasms?
Bless you for being so dedicated to your daughter. Thank goodness she has your support. I believe she will make it, with your help. Please keep us posted.
Wishing you the best,
Nutmeg
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Walt Stoll on April 24, 2003 at 10:25:06:
I agree with Walt, your daughter needs to get involved with the process of healing or else you will simply become the rescuer of someone who may not wish to be rescued. The exception to this would be if she is unable to physically or mentally help herself.
As far as treatment goes I agree that she should be doing Skilled Relaxation (in the archives), Rolfing sessions (which I took and found great relief, and also found in the archives), while continueing to investigate her symptoms and treatments for same.
Further, take a look at the attached link to see if there are similarities in symptoms to your daughters.
Good luck and are prayers are with her.
Dave
In Reply to: Re: Severe TMJ Myofascial Pain posted by guifenesinistheanswer on April 23, 2003 at 17:44:59:
Hi,
Thank you for responding. My daughter and I have been on every FMS, TMJ, IBS, VV, IC, CFS, MCS websites we could find in the past five years. We also have all the books. The doctor does not recommend BOTOX as she has severe Multiple Chemical Sensitivities. The fact that she has so many problems has hindered treatment. A specific treatment for IBS affects her Interstitial Cystitis and vice versa. She wants to try the GUAI protocol but she will not be able to take her "green concoction" for her severe constipation. She has been in contact with Dr. Armand.
Thank you for your suggestions.
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain posted by pj on April 23, 2003 at 18:42:37:
Hi,
Thanks you for responding.
She is taking a mild form of magnesium. Magnesium is detrimental to her Interstitial Cystitis as the ulcers in the bladder become inflamed from many vitamins, minerals and herbs.
We will check out the Bartter's Syndrome and Gietel Syndrome.
Thank you.
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain posted by michele on April 23, 2003 at 19:33:19:
Hi,
Thanks for your response.
My daughter does not eatsugar, bread or any other carbs. No caffeine. She is hypoglycemic. Right now she cannot eat anything but baby food or foods that have been put in a blender.
She has a small biofeedback machine for home use and goes for professional biofeedback regularly. That has helped some in the past. She can no longer bring herself down with biofeedback.
We will check out holistic healing of the jaw which sounds interesting.
I, to, believe stress is a big factor. After being in chronic pain for over 5 years, her stress level is through the roof.
Thank you.
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain posted by S.H.A.P.E. on April 23, 2003 at 21:44:49:
Hi,
Thanks so much for responding.
I really love your "stress reduction technique". My daughter does a lot of biofeedback but I surely will tell her about this technique.
She not only has the wrong "mouthpiece", she has many "wrong" mouthpieces. We'll try the eraser test though. sounds like she might get more relief from that than any of the splints.
Vitamins and minerals and herbs are a difficult area for her. Interstitial cystitis is affected by anything taken by mouth. Regular magnesium just about kills her. The ulcers in her bladder and uretha beome highly irritated so she takes a special magesium.
She has tons of meditation tapes an videos but I will order the "Rainbow Meditation" and she can give it a try.
Positive affirmation is whatshe really needs now. She has given up and feels sooo guilty she has been unable to get even a tiny bit better.
Thanks again,
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain posted by Nutmeg on April 24, 2003 at 10:47:19:
Hi,
Thanks for your reponse.
I have seen some information on magnesium IV's. We'll have to check and see how that would affect her Interstitial Cystitis as magnesium by mouth irritates the ulcers in her bladder.
Another problem with supplements is that she has been told she is not absorbing much of anything she takes or eats, for that matter. She's allergic to wheat, dairy, anything acid. Which really doesn't make much difference right now as she can't eat anything but a little baby food or blended food.
We will try the Super Seed. We can find something to mix it with as she is allergic to yogurt and apples too. I know, it's nightmare. She can't eat things that are good for the bowel which in turn aggravates the constipation. Although she does have a "gren drink" that helps.
She has turned to alternative medicine which has helped some.
Right now, the frozen jaw and neck muscles are the biggest problem.
Thank you for your help.
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 24, 2003 at 12:23:19:
Bonnie,
A comment on the eraser test/trial use...I think Dr. Stoll, in the archives, says to use one of those hard, flat, pink hand-held erasers that is about 1x2 inches and cut it in half lengthwise. If she is going to be using it for any length of time (per the archives), a small eraser from the end of a pencil could be risky. I'm sure it would pass through if swallowed, but inhaling it would be another matter.
Also, has your daughter looked into seeing a counselor or therapist? Positive affirmations can help, but she might need professional help if, as you say, she has given up and harbors guilt feelings about not being able to get well. Finding the right person to help can be tricky, but that is where you can trust your instincts to lead you to the right one. There are many helpful techniques out there to deal with these emotions and their physical connections quickly and effectively. Hypnosis & rapid eye therapy are two that I have had good luck with, combined with more traditional counseling and a lot of reading, affirmations and other work on my own.
Nutmeg
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Dave G. on April 24, 2003 at 11:12:40:
Hi,
Thanks for your reponse.
My daughter dictated the post I posted. She is unable to sit at the computer without a splint as she clenches the whole time.
She has been very active in her recovery for over 5 years. She started spending time on various listservs years ago. Such as TMJ, GUAI, FMS, VV, IC, MFP. She has spent thousands of hours researching, a have I. Her time is spent going to doctors and dentists and therapists every single week. She does biofeedback at home and in a professional setting. She uses many relaxation techniques for hours each day. She has traveled to many cities seeking out specialists and their opinions. Looking for a splint to calm her jaw.
Her body is just tired. Her stress level is high. She's just tired of being tired and exhausted by the pain.
we'll check out the link you posted and Rolfing.
Thank you.
Bonnie
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Bonnie Zaccari on April 24, 2003 at 12:56:26:
Hi again, if there is a bright spot in all this it is that she has you. It appears you have been there from the start for her, and continue to be. Bless you.
It can be very difficult, often frustrating, sometimes depressing, yet neccessary and vital to do research for oneself. However, you will meet, talk to, learn from, and most likely heal yourself because there are people out there who truely care about other beings and are prepared to share their own stories, experiences, successes and failures.
You will find a vast array of information on this site along with helpful and experienced people just like you. Stay near this site and keep digging, asking questions, challenging, and communicating with others.
It sounds like your daughter needs just a bit of luck to discover the root cause(s) of her condition. It could be metal toxicity, FM/CFS & HG, & or EBV, LGS, Massive stress (definately and understandibly), fungus-candida, etc. etc. etc.
The three legged stool is always the basic protocol for wellness and should never be overlooked, however she appears to require more immediate attention for the severe TMJ and myofacial pain. Try SHAPE and Walt's ideas first and also check out the site I linked the first time.
Dave
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Walt Stoll on April 24, 2003 at 10:25:06:
Hi Dr. Stoll,
Posting to this site was my daughter's idea. Her and I worked on the text together. We are, at this moment, working together to sent this post. Being on the computer hurts her jaw as it causes her more clenching.
She has been very active in her own recovery and for the past 5 years has spent many, many hours on the computer including reading hundreds of your archives. She has joined and been actively participating in many listservs.
She has been working with a special chiropractor who does aggressive trigger point release which had been helpful for a long time in releasing toxins from her muscles. Now her muscles are seizing even with treatment. Fear factor?
She is practicing Skilled Relaxtion 3 hours each day trying to pull herself out of this situation.
Her pain has now changed into muscle seizing in her jaw and neck.
It's only been in the past two weeks that she has been unable to calm her jaw down. The things that contributed to this were trigger point injections and an aggressive repositioning splint.
The Trigger Roint/Rolfing treatments make her muscles spasm even more. A myofascial specialist shed some light recently when he told her the aggressive muscle therapy can sometimes cause a "freeze" effect such as a mouse freezes when being attacked by a cat. Fear response.
She knows relaxation is the only thing that will pull her out of this and she is wondering what she can do differently or where can she go.
Her biofeedback psychologist is stumped!
She is trying to pull out of this without medication as any kind of muscle relaxant has no effect other than to irritate her bladder and bowel.
She feels her skilled relaxation techniques are no longer effective.
Can you please give her some suggestion?
Thank you.
Daughter and Mom
In Reply to: Re: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 24, 2003 at 12:41:05:
In case she is unable to tolerate enough Magnesium through other routes, below is a link to Magnesium by Rectum
In Reply to: Magnesium Suppositories posted by pj on April 24, 2003 at 17:09:24:
Hi,
Thanks so much for that suggestion. It sure is worth a try.
BZ
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Dave G. on April 24, 2003 at 13:31:34:
Hi again,
Tixicity is surely a problem but right now extreme stress seems to be the most alarming. Previously, biofeedback has worked in calming everything down. Not so now.
Yes, we have worked together from the beginning but she has done most of the work until the past few weeks. High stress level is causing panic attacks and anxiety. Again, relaxation techniques and biofeedback are not working.
We are delving into the link you posted. Thanks so much.
Bonnie
In Reply to: Severe TMJ Myofascial Pain posted by Bonnie Zaccari on April 23, 2003 at 16:27:39:
Howdy,
Your comment about having a "small splint" brings mine to mind, an NTI device that fits over only your top front teeth. It has helped me greatly in reducing my clenching problem.
Their web site has a list of dentists that provide it -- if your dentist is interested, they'll even send a free starter kit with enough supplies to treat several patients.
They're focusing some of their marketing on migraine sufferers, but it sure sounds like it could apply to you too.
Good luck!
Steve (CoffeeBreath)
In Reply to: Splint Re: Severe TMJ Myofascial Pain posted by CoffeeBreath on April 24, 2003 at 21:28:23:
Looks like it didn't take the URL I typed in. I'll try again, but here it is in plain text:
http://www.nti-tss.com
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Bonnie Zaccari on April 24, 2003 at 18:37:00:
Thanks, Bonnie.
Has any of her relaxation techniques been tested by biofeedback to see which ones actually produce the Relaxation Response?
Walt
In Reply to: Splint Re: Severe TMJ Myofascial Pain posted by CoffeeBreath on April 24, 2003 at 21:28:23:
Hi,
The NTI device did not stabilize the jaw enough to help the clenching.
The small splint that worked sits on the back teeth and relaxes the new somewhat. It worked well enough to wear for sleeping and when receiving muscle work when clenching is the worst.
Thank you,
BZ
In Reply to: Re: Severe TMJ Myofascial Pain (LOTS MORE!) Archive in bracing. posted by Walt Stoll on April 25, 2003 at 06:54:02:
Dr. Stoll,
Good suggestion! We'll try that.
Thanks,
Bonnie
In Reply to: Re: Magnesium Suppositories posted by Bonnie Zaccari on April 24, 2003 at 18:30:10:
You're so welcome! (I'd be curious to know just what her RBC Magnesium level is when you find out.)
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