1. < Polymyalgia Rheumatica (PMR)
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Very uncomfortable face and head sensations

Posted by frenchfrank51 @frenchfrank51, May 20 2:11pm

Hi all.

This is really driving me mad as well as feeling really unpleasant pretty much every waking moment now.

I get lots of itching on and around my head which includes my scalp, the back of my head, behind my ears, in front of my ears, my face tingles, my lips tingle, my nose tingles, my hair, even my beard and mustache hair are painful as is my eyebrow hair. Plus now I'm getting quite a few pimples all around my scalp that never erupt but can be really painful when I lay my head on my pillow. Sorry for that image! But on top of all that, I find it hard to talk properly, often slurring my words, often can't eat properly or keep food in my mouth and find it difficult to chew and swallow my food. Going on how my face feels, I'd half imagine I was having a stroke but I can't be having strokes every day! Plus a recent MRI of my brain has ruled out strokes and was, apparently, normal.

I'm also feeling very tired and very agitated when I try to get through my day but can't relax for more than a few minutes at a time. Especially as I'm having to deal with joint and nerve pain too.

I don't know if this is from PMR, prednisone (it did happen before I took prednisone and before the PMR diagnosis).

Anyone else going through this?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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pah17 | @pah17 | May 29 9:36pm
In reply to @frenchfrank51 "@pah17 yes I am dealing with a rhumatologist after having sudden very high CRP levels (178)..." + (show)
Profile picture for frenchfrank51 @frenchfrank51

@pah17 yes I am dealing with a rhumatologist after having sudden very high
CRP levels (178) and many other blood markers that were suddenly way out of range. Diagnosed with PMR and started on 60mg of prednisone even though I've been feeling ill for many years before with blood markers within range apart from moderate hypogammaglobulinaemia. I've had the scans for GCA twice and they were normal. I'm on 5mg of prednisone at the moment but I think it's not enough to keep my pain away and possibly too low and making me feel really ill.

I do itch pretty much everywhere especially around my torso and chest and arms which I think is a mixture of very dry skin and nerve pain from thoracic/ribcage inflammation/arthritis.

This facial discomfort and the feeling like I'm having strokes all day long is extremely tiring and although I've mentioned it to my doctor and rhumatologist, they haven't come up with any answers.

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@frenchfrank51 How frustrating.

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miluna | @miluna | May 31 12:30pm
In reply to @barjohnson62 "@frenchfrank51 First, I'm very sorry to hear hear you are going through all of this. I..." + (show)
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@frenchfrank51

First, I'm very sorry to hear hear you are going through all of this. I know this is very frustrating on top of the pain.

I have had a similar -- although not as severe -- experience.

Before my first bout of PMR in 2017, I had some rather minor but unexplained facial numbness/neuropathy. Nobody could tell me why.

Once PMR set in, it became a full-blown cranial neuropathy with intense headaches, sometimes the sudden shooting kind (perhaps similar to what you're describing as strokes?).

Lots of tests, including GCA and MRIs and neurological studies, resulting in only shoulder shrugs from docs in return. Even after my PMR was under control and off prednisone, the head condition continued. The shooting headaches went away for the most part, but the neuropathy and underlying headache never went away and has never been explained. The only thing that helped some was having vertebrae fused in my neck for deteriorating disc disease -- obviously an unrelated condition.

I did have lots of skin conditions on my head as well, but not as severe as you seem to have it, which I attributed to the prednisone.

PMR hit me hard again this past November and with it the headaches intensified, but not the sudden shooting kind. Got the body pain under control with prednisone once again but the head condition continues.

So unfortunately, I have no good answer and have been given no answers over the past nine years. But the intensity in my case did at least ebb some.

All I can say is that perhaps your PMR is interacting with some other underlying condition.

Hopefully you will get some more answers in this forum. And please keep us posted on how it's going.

r/Barry

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@barjohnson62 There is so much to say about prednisone side affects …you mention slurring your words I call it stuttering and it is from the prednisone. I also had trouble with my vocal cords collapsing and and I had some head shaking tremors! Also from the prednisone.! I can’t wait to get off the prednisone!

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sloped483 | @sloped483 | Jun 1 12:37pm

Has your rheumatologist ruled out Giant Cell Arteritis (GCA)?

A lot of your symptoms sound like it could be GCA.

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stonewheel | @stonewheel | Jun 1 6:12pm

@ frenchfrank51
Yes, I have the itching, tingling, tenderness, headaches etc., for 2-3 months now, it’s frustrating!

I was reading another thread here today and “occipital neuralgia” was being compared to “trigeminal neuralgia.”
Both are scalp/head nerve sets.
Dadcue (Mike) had put the link in his comment. Mike had trigeminal.

I’ve lost the thread, but it was in today’s list.

I’m going to speak with my rheumatologist about “occipital neuralgia” on my next visit, since GCA was negative on US and negative in biopsy.
Google occipital neuralgia .

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prettypatti76 | @prettypatti76 | Jun 1 7:33pm

M head itches every night when I am trying to go to sleep.

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