PMRGCAuk

Fingers locking up and jaw pain, new symptoms

Thank you wonderful people for being there for me and all your knowledge and support. I don’t think I realized how stressful the week was until I wrote it all down, especially the emotional stuff. My sister still questions if I really have GCA. She is helping me financially and she’s probably getting tired of it.

I’ll see how it goes today....no grocery shopping! I did get 3 hours sleep last night, so plan on napping today for sure. I’ve got the roaring and pounding tinnitus going on for more fun. So far no jaw pain, but haven’t had my favorite bacon for breakfast, just oatmeal. Just a few little niggles and head feels like it’s made of lead. If I’m still not better I’ll take an extra 5 mg. this weekend and call my rheumy on Monday, stressful in itself trying to get ahold of him.

I never had visual symptoms, thank god, and don’t have anything unusual now except for some blurriness. It’s hard to tell what’s going on because I’m so nearsighted, with really old glasses and I get this bluriness sometimes when I’m tired.

I do take magnesium and it helps with cramps, I guess I just need more right now.

I’m grateful my sister is helping me for sure-but I wish she understood. Thankfully you-all do understand how scary GCA can be.

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Bless you, you are welcome and we are always here. 🌷

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Hi

Glad you’re a little better today, but advice still stands.

Get your sister to read this if you can - it might help her understand a bit better - that’s if she wants to!

healthunlocked.com/pmrgcauk...

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Does your sister have a rheumatology/opthalmology/neurolgy medical qualification? Just wondered. Even if she does - even medics get this one wrong.

Whether it is GCA or one of the possible alternatives - you have a serious systemic illness of some sort. And that alone requires cognisance.

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No, but she is an occupational therapist who has had patients with this, “their headaches were terrible...

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Tell your sister that I never had a headache but all the other symptons but I have GCA. Hope all goes well at Drs.

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I wonder how many patients go blind because "they didn't have a headache" or "the headache was in the wrong place"...

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Yes. I had a headache, but in the back of the head, not the temporal arteries. Tylenol etc didn’t help. I Had visited an ENT and had an ultrasound of the head a month before diagnosis. Nothing showed up. Luckily the rheumy had read of a case where a patient lost sight with this type of occipital headache and he put me on the 40 mg. Immediately.

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Occipital headache - VERY typical of GCA. I know that - why don't all rheumies? It IS their field after all!!!!

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Would it help to have your sister come to a doctor's appointment? Hope tomorrow's better for you.

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Good idea. I’ll see if she will.

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Unfortunately many folk do not understand at all the problems with GCA but then I think I probably wouldn't if I hadn't developed it. It's so hard to describe and the symptoms can change. I think the suggestion of taking your sister with you to appointment is good. I think for most of the time I try to accept that folk won't understand and probably think I'm exaggerating some of the time or making a mountain out of a molehill. Thank goodness for this site and support groups- folk who completely "get it!!"

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My jaw and fingers were awful . The symptoms change and wax and wane. You must be patient. It’s not easy.💜

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Yes this disease is a shape-shifter for sure. Patience and acceptance ......thank you

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Yes isn’t it great having such a supportive community of people who DO understand. Even with PMR you get the comments like ‘you do look well’ and questions like ‘are you getting better now?’ I have found myself just saying ‘well it isn’t something you just get better from overnight/in a week’. The aches and pains all over don’t show, but we sure know they are there!

Hope you can get more sleep soon.

Bridget

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