Arthritis or TMJ?

[Nonameme]

4 years ago was told by then GP this problem all in my head. 2 years on another GP said it was face arthritis and gave me one tube of cream. A year ago because the symptoms were to me more ENT Ipaid to see consultant January 2023 who immediately diagnosed TMJ which I had never heard of he said my dentist (BUPA) should have picked it up years earlier. He has referred me to Maxofacial.

Still no idea when I will get an appointment

Unfortunately I have failing health and my local surgery has become unfit for purpose instructing all patients to first contact 111 to check who I should go to in the first instance, if they say GPand it is after 8am they say I should have called earlier and to call next day and round in circles we go.

I have twice complained as e consults have been ignored leading to blue light admissions and stays in hospital in the past 12 months. Nothing changed except a note on my records saying I am difficult and possibly have mental health problems. I am 77 and female.

Over the past several months my ear and head and neck pain have become unbearable I can hardly move my neck in any direction ear pain is constant’toothache’ now permanent and it is now affecting my shoulders lower neck and tongue and throat. The headaches are constant and I cannot rest my head on any pillow I sleep when I can resting on my forehead.

Because of long standing conditions I have a 10mg Morphine patch CoCodamol and Gabapentin. This combination just about takes the edge off everything but I am never pain free and mostly I am in enough pain to be nearly bedridden. I luckily do not become addicted to medication and can trial drugs on and off without side effects which has shown that basically they make very little difference to the level of pain. Told by GP a year ago I was taking the maximum dose of medication available and there was nothing more they can do.

So my question is will it be worth paying to see a specialist and if so which.

[BenHall1]

Hi Nonameme,

I am very sorry to have read of your issues and although I can't offer you any thoughts on pain relief my views here are of support and guidance.

I too am in the world of pain but nothing as dramatic and as far reaching as yours. I have osteoarthritis in a number of joints and at the moment, although it is in both shoulders one has been treated and the other (my left shoulder) not so. Trying to get my GP to give me an injection into the left shoulder is like pulling hens teeth !

I too am awaiting an appointment with two Private hospitals for an Ultrasound I have been offered a private appointment in Plymouth (70 miles away) and one only 10 miles away .... I'll take whichever comes first. Mind you my GP has offered me the Plymouth one ..... I got the other one by sending an email myself. Bloody useless!

I describe the NHS as Pre CoVid and Post CoVid ! My GP gave me a steroid injection into the right shoulder based on an XRay in the Pre CoVid era. I expected only 6 or 9 months pain relief but here I am at 21 months and still free of pain. Brill ! The same GP still doesn't feel I need the same injection into my left shoulder ..... damn it... I can't even get an appointment with the moron ... she keeps referring me to either the surgery Pharmacist or the surgery Physio. Hell look, I can't even get a shirt or a jacket on without help much less do Physio exercises. As for getting sleep all she does is prescribe me either Amitriptyline or Gabapentin .... neither of which work as they give me unwelcome bowel side effects. So for now it is CoCodomol 30/500.

Being a nice and patient patient isn't working. I have now decided to make a formal complaint to my MP with the request he refer my case to the Secretary of State for Health and I will also bring a complaint against my surgery to the Care Quality Commission, just for good measure. But one way or another I'm gonna kick ass. If I'm gonna suffer I'm gonna make my GP surgery suffer too. I did this once before with my local Hospital Trust on a different issue .... boy did that get a response. If you have the strength to do this I recommend it as a course of action.

Have you tried getting a referral to a Pain Clinic ?

I wish you well for 2024 and really hope you can get things sorted.

John

[texigal in reply to BenHall1]

Hi Ben Hall1… You describe not being able to get your jacket sleeve on without help makes me think perhaps you have a torn rotator cuff in your left shoulder. One of the signs is weakness and pain when your affected arm is raised from the side 90 degrees , or you cannot hold it in the raised position as it starts to drift down. You may really need an orthopedic consult.

[BenHall1 in reply to texigal]

Thank you for your comments. Yes, I have been think along those lines myself. I did have a MSK Interface review in July 2021 by an Orthopaedic Extended Scope Practioner commenting "Quote .... there seems to be an element of stiffness at the end range which may indicate a resolving frozen shoulder but he ( me) also has an irritable rotator cuff on testing .... physio therapy seems to be improving range of movement ....end quote"

Here is the rub, I am always referred to Physio to improve range of movement. Nobody refers me to anybody to examine the cause of pain. Nobody ! Just get painkillers. The point is the pain I feel is coming from bone, not any particular tissue, ligment, muscle, tendon or whatever. I press down on the bones from the top of the shoulder the bone or bones give most pain.

By the way I think an OESP is a sort of consultant/senior/ specialist Physio. Want a fancy name ... just apply to NHS. Meanwhile I am still waiting for an Ultrasound appointment.

[Paulbounce]

Hi Nonameme.

I won't go into the details although it is quite funny. I tried a few things and found these be very effective. You won't even know you are using them when you sleep. Cheaper than the dentist maybe just as effective as well. Worked for me but may not work for you - we are all different.

By the way I have no affiliation with this business at all.

HNY Paul

amazon.co.uk/Milisten-Sleep...

[Tilly1957]

I have clenched my jaw at night for years(only on the right side) , my dentist made a gum shield for my lower teeth which helped a bit. I found this guy. Adam Field DC , his TMj/jaw exercises extremly helpful. If I didn’t use something to bite down on at night, I developed horrendous head, jaw, neck, shoulder pain, nausea, with headaches from hell, which would actually stop me being able to function. Pain relief just didn’t touch it. His little YouTube videos are brilliant, and gave me a lot of relief. I actually use my cotton fielding dressing gown belt golden in hslf, and bite down on that on the right side - but I have to make sure i only wash it in water otherwise I get a sore throat and mouth from any detergent left it in. But Adam fields helped me a lot.

I can’t seem to paste a link to the video, but here is a photo so yiu know what you are looking for. I am a retired body worker of over 30 years experience, and I have always recommended this guy’s TMj clips to my friends and clients,

Thank everyone

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