I have just the one symptom: intermittent pain on chewing, especially tougher foods like meat: no unusual headaches, scalp tenderness or visual disturbances at all. I know this isn’t a good reason for not going to the doctor, but I probably wouldn’t have noticed it if I wasn’t already aware of the possibility of GCA; and I have such a bunch of other unrelated medical things going on at the moment [post recent hip replacement, raised blood pressure and cellulitis] I’m afraid I’m going to be seen as a hypochondriac if I raise it.
My PMR was diagnosed in 2020; had reduced to 1.5mg but flare seemed threatening over recent medical crises so temporarily increased to 7mg, now reduced again to 3mg which seems to have done the trick.
Am I burying my head in the sand if I wait to see if symptoms increase or go away? Thank you
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calibriel
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Have you tried the chewing gum test? Chew at a rate of 1 chew per second for 3+ minutes. If you develop claudication pain while chewing that then resolves when you stop chewing that supports a suspicion of GCA. It suggests that if there is no sign of jaw pain after 5 mins chewing it is negative for GCA, Pain that starts immediately is more likely to be TMJ or bruxism (teeth grinding) but pain starting after 2 or 3 mins suggests GCA,
Thanks. I tried the test - I’m sure I did it right - and no pain,so still no idea of the cause; but hugely relieved GCA seems ruled out, especially given the lack of other characteristic symptoms. I wonder if it’s just general tension? I know I’ve always reacted to that by clenching my jaw, and I have been going through quite a lot recently: apart from all the medical stuff affecting me, my partner’s fronto temporal dementia has been getting worse. The idea was to get my hip done now before he gets too bad, so I can be strong for both of us, but the last few weeks have been pretty hard to negotiate.
As I mentioned, bruxism, the fancy word for jaw clenching, will cause similar pain.
Yes, balancing all that will also cause tension and that causes jaw pain too. Have you accessed all the help you are entitled to? YOU will need it while recovering from a hip op - you will need support too and he isn't going to be much help there is he?
Thanks. Yes, the help seems to be coming together. The trouble with FTD is it creeps up: the diagnosis has only recently been confirmed after years of suspicious symptoms plus a year of investigation, and I held back from involving his family too much because they were already dealing with other serious stuff; but they’ve now come forward; and, after a year or so of being sent round in circles by the support services people kept advising me to contact, he had a productive assessment last week which resulted in various promising referrals.
Everybody who finds out about it wants to help me with advice! I know it’s kindly meant - for instance they always think he’d be so much better if he got out more: do they think I haven’t tried? - but don’t seem to realise, if he doesn’t want to go out, it’s better just to go with that.
My husband had frontal lobe dementia the last few years of his life as well as a lot of physical problems so I sympathise with you. I eventually got support from a Carers support group and found it helpful chatting to other people who were caring full time for someone. My only advice would be to ignore a lot of the well meant advice and just go with the flow BUT look after yourself as well as your husband and give yourself a break if you need it. Every couple of months I used to arrange extra care for my husband and have a day out just doing whatever I wanted, usually a massage then lunch. It’s surprising how much better you feel for the respite. Best wishes
My experience of jaw claudication when chewing was it started off ok but then changed. My chewing muscles felt like my legs could do when in a mad moment I decide to walk 10 floors instead of taking the lift. By floor 5 my muscles start to run out of steam and by floor 8 they are screaming. I stop to recover and the muscles feel a bit better but when I start again soon after they quickly revert to giving up again. When I had TMJ problems, it felt like there was grit in the joint and that the joint was a bit wonky. It was worse on opening the mouth and champing down. I hope that’s not a metaphor too far.
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