Am I GCA and PMR ? ... Hope not, but think I could be !

[Magpies_and_Crows]

Hello all,

I have many symptoms of both GCA and PMR and am awaiting a blood test result to determine the liklihood. what I do know is this contstant headache is the dominant thing in my life and I just want it gone !

I am having a crazy time with my eyes, they are painful to use and I prefer to keep them closed. When they are open (obviously most of the time) they are sensitive to light and I struggle to focus, though a trip to optician a few weeks ago show an actual improvement in 1 eye and no change in the other (very weak prescription) but seriously I am struggling with my "eyesache".

The head is always in pain and I keep a pain level diary. My pain fluctuates always, but is never gone. Today it is 240 days of pain. It's nucleus is my left temple, I kind of know it stems from there ... but it goes over to my right temple and causes it's pain in between. I also have a strange pain in my scalp, like someone has pulled my hair out or I have burnt my head. That too is there all the time.

Is the fullness in my ears related ? I think so.

Also have body pain. In the left side of my neck and radiating to my shouder. Have front thigh pain that also radiates into my sides. A strange little lump has also appeared on my forearm (a lipoma perhaps?)

Coincidently I am also perimenopausal - Does this have anything to do with it all ?

All in all, I am not a well bunny. Am struggling at work and struggling at home.

[SnazzyD]

I went to my GP with similar symptoms. I was sent to A&E as an emergency within 10 minutes and within half an hour of getting there I was on steroids to save my eyesight. Any signs of GCA should be treated as a medical emergency and not something to tough out. The blood test for inflammatory markers is not a definitive test as not all people have increased levels. Mine were normal even as my eyesight was shutting down. You need urgent care now!

[Yellowbluebell]

Hi, I only have pmr but I know that urgent treatment is needed for gca to protect your sight. You really need to visit a&e immediately because you cant afford to wait and risk losing your sight. As snazzyd has said the tests quite often show no signs of inflammation. I am sure the experts on the site will be along in a while but will confirm that this is urgent and you need to something now!!

Take care and let us know how you get on.x

[DorsetLady PMRGCAuk volunteer]

As others have said, please get yourself to A&E and get things sorted. Some of the symptoms are definitely GCA like, but even if it’s not that, then you do need a definitive diagnosis - a continual headache is not normal.

[Soraya_PMR]

I was diagnosed with ‘menopausal migraines’ when I was going through the change. The headache was diffuse and not bad at all, in fact I’d not have complained about it! But I did have weird vision, lost the left lower quarter, couldn’t read the start of words, letters were pretty colours! I rang my GP and he sent me straight to A&E (they thought I’d had a TIA) but I was treated as an emergency and had an urgent MRI with contrast within 3 days. (Vision/symptoms majorly reduced) They took it seriously! Saw consultant same day as MRI, I told him I felt a fraud, but he was lovely and said it was his job to rule out TIA and other dangerous stuff.

The scalp ‘burn/tugging’ sounds very GCA. The thigh pain sounds like PMR + shoulders. You really warrant some attention NOW!

[SnazzyD in reply to Soraya_PMR]

Yes, and that’s the thing, not just diagnosing GCA but ruling other things out. I was given an urgent head CT. better to feel foolish and be ok, than blind but still feeling foolish.

[Soraya_PMR in reply to SnazzyD]

Many many people get emergency treatment due to ‘chest pain’ that turns out to be indigestion, and nobody thinks them foolish for getting checked out ‘just in case’, because if it was an MI they could be dead!

The same principle should apply to GCA, and I think when eyesight is involved it is....it’s just that middling build up that medics aren’t reacting to.

If it walks like a duck and quacks like a duck, it may be a grebe, but let’s just check in case it is a duck!

[SnazzyD in reply to Soraya_PMR]

So true, I hadn’t thought of that.

Bird analogies are the way forward too.

[PMRpro Ambassador]

There is a form of PMR that is due to hormonal issues perimenopausally - has no-one thought to check that?

In terms of PMR you are describing pain that doesn't sound typical - not saying it isn't PMR though. What you do describe could fit with myofascial pain syndrome and your back muscles being in spasm and irritating nearby nerves - it is more common alongside PMR but can happen on its own. If your shoulders and neck are involved that could also contribute to the head pain.

[Magpies_and_Crows in reply to PMRpro]

Thank you for your reply - I will look into Myofascial - it is so frustrating not having a clue what is wrong.

My GP's are very supportive, but I feel they now don't know what to think or do (no disrespect to them at all) I have had mri's and an assortment of medication, counselling, osteopathy.

My blood test results should come back on Fri ... If it isn't GCA or PMR, then I don't know what to do ? How do I find out about looking down the Myofascial route ? or the menopausal PMR route ? Can I request this from my GP?

[PMRpro Ambassador in reply to Magpies_and_Crows]

Why do they have this idea that imaging shows all? What happened to clinical skills? (Don't answer those, they're retorical questions!!!)

The menopausal "PMR" diagnosis requires hormone estimations but although "menopausal arthritis" is acknowledged by some it is disputed and it usually means finding a doctor sympathetic to the idea. There was a lady on the patient.info forum a few years ago who went for a smear test and since she could hardly get onto the couch the nurse asked her why. She was recommended to see a particular doctor in the practice, tests were done and HRT offered: the result was clear!

For myofascial pain syndrome a physiotherapist SHOULD be able to identify spasmed muscles, they do here in northern Italy. I don't know where you are - but probably not an NHS physio since they are restricted by time and how NHS physio is provided. On the other hand, I would probably try to find a good Bowen therapist and see of they can help. You know if it will make a difference inside 3 sessions so isn't an open-ended committment although since there is no permanent cure you may need it intermittently. It kept me upright for 5 years of PMR with no pred - it didn't cure the PMR but it did help greatly with what I call the add-ons.

[Marilyn1959 in reply to PMRpro]

First time I have noticed reference to hormonal driven PMR. How would we know the difference?

[PMRpro Ambassador in reply to Marilyn1959]

You might not. Maybe there isn't a significant difference - my PMR started to manifest a few months after I stopped HRT, I was probably perimenopausal and it was another 6 years until I reached the post- stage - I'd been put on HRT for fatigue and sweats in my late 30s by my gynaecologist but that was 20 years before my LMP. Was that what I had? Or "real" PMR? Or did one morph into the other?

But apparently low oestrogen levels can be part of a PMR-symptomatic.

[Magpies_and_Crows]

To you all, thank you very much for your comments. Until I get my results I have no idea what is wrong with me ... but just to get your support is very much appreciated.

I am obviously incredibly worried about what my head is doing, and my eyes ... but can I really go to A & E ? What if it is not GCA, I don't want to waste their time or take valuable time from another patient ?

I hate being in this position !!

[PMRpro Ambassador in reply to Magpies_and_Crows]

What did the optician actually DO? Was it just an eye test for your prescription for specs? Or did they dilate your pupils to examine the back of your eyes in detail and do a peripheral field test? That is the test where you look at a field in a device and press a button every time you see a flashing light which moves about appearing at various points all over your field of view?

[Telian]

You need to be seen immediately to rule out GCA. Go to A&E now! Once on steroids your eyesight can be saved. if they’ve got it wrong you can come off them relatively quickly - in the meantime your eyesight is at risk.

[Magpies_and_Crows]

Hello

Thank you all for your replies and advice.

My blood tests came back normal, so GP has ruled out any auto immune condition. Yes I am totally pleased but yes I am also totally frustrated. I am still in pain but now have nothing to shed light !

My headache is 8 months old now - but they seem to have ruled out anything sinister. I need to look at the "pain map" of my entire body and start all over again - I need to see them as sperate unlinked things that are going on at the same time perhaps ?

To all of you suffering with your condition/s ... I wish you all well and as pain free a journey through life as you can get.

Kind regards and thoughts to you all

From me

[PMRpro Ambassador in reply to Magpies_and_Crows]

"My blood tests came back normal, so GP has ruled out any auto immune condition."

Blood markers ESR and CRP that are "in the normal range" do NOT rule out GCA/PMR, up to 1 in 5 patients show results that are "in normal range", although sometimes they may be raised for them personally. My personal normal ESR is in low single figures. For several weeks while I was experiencing a major flare it ran at 16-18, no-one remarked on it as that is below the 20 that is taken as the top of the acceptable range. The "normal range" is not the range of results that is acceptable for one person, it is the range of readings found in 95% of a large population, usually at least 10,000 apaprently healthy people.

I keep hoping doctors may start to understand statistics and lab results but I am always disappointed ...

[keepfitdoll]

Hi there.

just seen this post. What was the outcome?

I like you had symptoms of both conditions. So I went to my GP who sent me to the hospital straight away for an emergency eye test. They could find nothing other than cataracts which can be treated. My inflammation rate is high, but is being monitored with more blood tests and further eye tests. They concluded it was not GCA at this stage. I was relieved by this, but it is still important to keep a check on things as I think the diagnoses of these conditions are still a bit of guesswork. No one should feel silly for checking out their symptoms, it is what the medical profession is for.

Good luck for the future.