Rachel and her TMJ Journey

July 2002 Rachel is 9 years old when she begins orthodontic treatment.
Mar 2008 Rachel starts complaining of pain in her mouth. As she frequently complains about all her pains I don’t pay much attention.

May 2008 After Rachel continues to complain we see her orthodontist. He questions if there is a family history of jaw issues and gets me to place my hands on either side of her face while she opens and closes her mouth.

I am horrified as I can feel cracking and unbelievable movement in her jaw joint. This comes as a shock as I am unaware of any family history of jaw problems. He asks if Rachel is flexibile – can she outstretch her arms and push the inner side of her elbow joint upwards? I didn’t believe that Rachel was flexible and didn’t understand what he was talking about.

We are unable to determine when she first started to have problems with her jaw. Rachel believed her jaw cracking was normal. The orthodontist says she has TMJ (TemporoMandibular Joint) issues. He recommends we see the only TMJ specialist in WA.

June 2008 The TMJ specialist asks about the cause of Rachel’s TMJ issues but we are unable to explain. He asks if Rachel is flexible, particularly in the inner elbow region and I say I don’t think so. The specialist organises a night retainer (splint) and prescribes a relaxant at night which should resolve the issue. He also suggests that Rachel start physiotherapy with a specialist jaw physio.

Rachel has an MRI on her jaw. The TMJ specialist indicates there is minor inflammation and her jaw joint discs are dislocated but that the special retainer should resolve these issues.

Aug 2008 The TMJ specialist can’t understand why Rachel is still reporting 9/10 pain in her jaw after wearing the night retainer for 2 months. He thinks that there may be psychological factors for her pain and also recommends a checkup with our GP.

Rachel stops seeing the jaw physiotherapist as the therapy was not making any difference.

We visit a clinical psychologist who believes he may be able to help Rachel with EMDR (Eye Movement Desensitization Reprocessing) therapy. Rachel refuses the treatment as she isn’t convinced that it will help.

We visit our local GP who arranges a number of blood tests. The results all come back within the normal range.

Sept 2008 Rachel experiences very sore knees after playing netball. We visit our local physio-therapist who tapes her knees and we purchase orthotics to help with her knee pain.

We return to the GP to try other pain medications. Nothing we have tried works. Rachel has been taking 6 x Panadol Osteo (625mg paracetamol each) every day since June 2008 without much effect.

Nov 2008 We see a psychiatrist who prescribes antidepressants for Rachel. My husband, who is a pharmacist, is very distressed at the thought of Rachel (now 14) taking anti-depressants. We have no other option but to try this medication.

In late November we see the psychiatrist again. Rachel’s mood has improved but not her pain levels.

Dec 2008 In desperation we try Reiki Healing. While Rachel finds this a relaxing experience it does not help with her pain.

During the school holidays Rachel does some casual work in a pharmacy. She enjoys the experience but the work makes her tired and she suffers additional pain in her knees and wrists.

Jan 2009 Rachel starts to complain of pain in many of her joints, particularly her elbows. She can’t bear to be touched.

We visit the psychiatrist again and he increases the dose of her antidepressant.

In total frustration we visit the GP and he refers Rachel to an arthritis specialist as he believes that her elbow pain is unusual.

We go on a holiday to Sydney to visit family. When Rachel is occupied she seems happy. The rest of the time she complains about pain in every joint in her body. When we arrive home Rachel can barely walk off the plane. I feel like tearing my hair out and she is very upset and frustrated by what is happening to her.

The arthritis specialist takes one look at Rachel and says that she has Benign Joint Hypermobility Syndrome (JHS). He is very positive and believes that with some medication (relaxant at night) and physical therapy, Rachel should improve. The tests he does to diagnose Benign JHS are interesting. Some of the signs of the syndrome are the ability to hyperextend the knee or elbow beyond 10 degrees and the ability to touch the thumb to the forearm.

I feel so elated at finally establishing a reason for all of Rachel’s pain. It seems that while the initial problem started in her jaw and this issue was not resolved, her body developed a chronic pain syndrome. I guess ‘pain receptors’ go looking for other potential problem areas, in Rachel’s case all her joints. Rachel now has pain in every joint in her body.

Rachel starts physiotherapy with the specialist’s recommended physiotherapist who is horrified by the condition of Rachel’s jaw and tells us it is the worst TMJ issue she has seen in her 20 years of practice. She is unable to help the TMJ issue but addresses Rachel’s postural problems.

After a few weeks of physiotherapy Rachel’s condition deteriorates. One day she wakes up and can’t move at all. Fortunately after a day in bed she becomes mobile again.

We visit the arthritis specialist again and he recommends Rachel spends time at PMH to see if his team can work through some of her issues.

Mar 2009 Rachel is admitted to PMH and is seen by a prosthodontist. He is appalled by her condition.

I think that kids, especially teenagers are prone to exaggerate, however I feel so sad that I wasn’t able to see that Rachel’s issues were genuine. One of the problems with joint issues is the effect of distraction. When Rachel is enjoying an activity she is engaged in she does not appear to be in pain. However, when stressed and at down times (especially before bed and in the morning) she experiences the pain the most.

Rachel spends a month in hospital coming home on the weekends. The prosthodontist, after consultation with all the dental specialists at PMH, believes that if the discs in Rachel’s jaw have not relocated within a year, then they will have to operate to put them back in place. He also mentioned that her lower jaw is not in the correct position and believes jaw surgery could correct this in a few years time when she has stopped growing.
June 2009 Rachel has continued with hydrotherapy at PMH and sees the prosthodontist once a fortnight. She is coping better with her condition but there has not been any change in her jaw pain. She continues to have chronic pain in various joints which differs on a daily basis and she gets tired easily.

I am at a loss with what to do to lessen Rachel’s pain. I pray for the day when she will be able to talk to us in the mornings. She doesn’t like being hugged or touched as this causes her further pain. Rachel also doesn’t like discussing how she feels about what is happening to her.

I would love to hear from anyone who has experienced similar issues. We have met a number of children with JHS but not anyone with TMJ complications.


Editors Note: You can email Christine via this website.

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