Fingers locking up and jaw pain, new symptoms - PMRGCAuk

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Fingers locking up and jaw pain, new symptoms

Mstiles profile image
15 Replies

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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Mstiles profile image
Mstiles
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15 Replies
SheffieldJane profile image
SheffieldJane

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

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...

PMRpro profile image
PMRproAmbassador

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.

Mstiles profile image
Mstiles in reply to PMRpro

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

in reply to Mstiles

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

PMRpro profile image
PMRproAmbassador in reply to Mstiles

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

Mstiles profile image
Mstiles in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to Mstiles

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

TooSore profile image
TooSore

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

Mstiles profile image
Mstiles in reply to TooSore

Good idea. I’ll see if she will.

Jackoh profile image
Jackoh

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!!"

Leeleep profile image
Leeleep

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

Mstiles profile image
Mstiles in reply to Leeleep

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

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

stiff19 profile image
stiff19

This is interesting happens to me and twitching finger. Get awful array of headaches and eye drop which gets bruised looking too. My jaws hurt intermittently and sometimes when I go to speak it initially hurts or chew then eases. If I yawn with mouth open the pain is excruciating, sometimes I forget to keep mouth closed And pain is through the roof and I’m not a wimp. Eyes keep blurring but not permanent but do feel weird , I kept cleAnjng my reading glasses thinking blurry because of that but sadly no.

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