Fibromyalgia Action UK
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Pain around right temporal artery

I was on steroids for over 10 years for temporal arteritus, I paid to see a nurologist

who suggested I was imagining it, eventually 4 1/2 years ago I paid to see a Professor of Rheumatology, after an ultra soun d he said I did not have temporal arteritus the problem was a disc pressing on a nerve at the top of my spine, after injections in my spine it is much better, I do not get the pain in the rest of my head but still get some pain around my right temporal lobe, particually when tired. I was taken stright off steroids thank goodness, I think you hav e to fight for the right attention now.

6 Replies

Hello there

Unfortunately the NHS simply does not have the funding available that it did years ago.

I'm glad to hear that you have now been taken off the steroids, which must be a relief for you.

Wishing you wellness and peace

Lu xx

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Wow, I am going through this now, the pain in the back of my eye and ear is constant. The blood test for temporal arteritis came back negative this week, although there was inflammation and I am seeing the doc again on Tuesday.

My head hurts behind my ear just like I had banged it.

After I googled I saw that it could be something to do with my neck, which would make sense as I dislocated it and was put on traction. However, this was forty years ago so would that now be causing me a problem? Do you think it could be referred pain? Is it worth mentioning? I wouldn't like to be dismissed or laughed at.

I seem to be at my Health Centre so often it is embarrassing, am I making a fuss about nothing? I would hate to be labelled a nuisance.

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Have never had this but can relate to the pain issues and feeling like a nuisance in the GP surgery. I do think you have to fight for everything these days. The doctors not doing much for so long is counter productive because you have to go back over and over again. Sending gentle hugs to you all x

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I think you should mention it, I had an exray on my neck which confirmed the pain in my artery was from my neck.

I am still getting the burning pain in my artery, worse when I am tired, codeine helps and a lay down, with eyes shut

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Hi Clouting

I am so genuinely sorry to read of how you have struggling and suffered and I sincerely hope that you get the right treatment now this has been diagnosed for you. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken :)


It's really disturbing to hear stories like this. When you see a doctor or consultant you expect that they can give a person a correct diagnosis or at least work towards it. It is appalling for a consultant to tell you they think its in your imagination - is that a scientific response? He should have at least been honest and told you he didn't have a clue. It reminded me of a GP I saw. I was trying to explain that I had terrible fatigue that made my bones ache. She looked at me and said - "Oh I get very tired as well" the response completely threw me because it was so unprofessional. That is what I walked out with - the knowledge that my doctor got tired. Thanks a lot NHS - oh and don't forget to give yourself a bonus and a pat on the back for drawing a big pay packet for doing very little to help people. :) OK I know they are not all like that but unfortunately one like that is too many and I actually know from personal experience that a lot are like that.

I have actually come to the conclusion that apart from their own speciality - which might even be a speciality within their field these people have very little knowledge of any other health related possibilities for your problems. I think this means that you can end up going backwards and forwards seeing a variety of different specialists who haven't a clue what is wrong, they will just eliminate or confirm that you have something wrong that is within their own field - if your symptoms and test results don't tick the right boxes in their area or expertise you get flung back to your GP. You go back and see (usually) a completely different doctor where you have to go through everything again and they either write you some sort of prescription for anti depressants or send you off again to the hospital to see someone else. You wait another few months to get seen again and same story. This has got to be such a terrible waste of money. Why not just send you for simple blood tests first to see if their is any obvious reason for your problems and if not you should get sent to hospital to see a team of people who find out what is wrong with you. When they find out they can send you to the correct consultant then.

Sorry this has gone on so long. But I just felt so cross to hear you had been put on very strong medication like steroids and you didn't need them. That is negligence on the part of the NHS.


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