Severe neck pain.: I am on a river cruise at the... - PMRGCAuk

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Severe neck pain.

Jeanjean16 profile image
17 Replies

I am on a river cruise at the moment, relaxing and not too strenuous, but I am doing more than I normally would. For the last three days I have had severe pain and stiffness in the muscles in my neck and the back of my head. I am unable to turn my head In either direction due to the pain. Also I am experiencing unusual sensations in my scalp. I have been on 10mgs of pred but this morning out of desperation I took 15, better than yesterday but still in a lot of discomfort.

I have never had pains in my neck or head before. Is it ok for me to take 15mgs for a few days?

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Jeanjean16 profile image
Jeanjean16
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17 Replies
nevagivup profile image
nevagivup

Severe neck pain and back of head pain with very tender scalp around the base of my skull are always my first symptom of a flare of PMR. Indeed, that was the first symptom ever for me. It is very debilitating. I liken it to icy fire, because there is no other way I can describe it. It is so debilitating. I always go back to 15mg to control the pain, for me it takes a week to work totally. But then it is the tapering again. Hope you feel better soon.

Jeanjean16 profile image
Jeanjean16 in reply tonevagivup

I know it sounds callous,but it is reassuring when you find others have suffered in the same way!

Patience47 profile image
Patience47 in reply tonevagivup

My first PMR symptom was severe neck pain too.

Headaches came later on.

nevagivup profile image
nevagivup

Severe neck pain and back of head pain with very tender scalp around the base of my skull are always my first symptom of a flare of PMR. Indeed, that was the first symptom ever for me. It is very debilitating. I liken it to icy fire, because there is no other way I can describe it. It is so debilitating. I always go back to 15mg to control the pain, for me it takes a week to work totally. But then it is the tapering again. Hope you feel better soon.

Sorry, I managed to post this twice.

PMRpro profile image
PMRproAmbassador in reply tonevagivup

You can delete it if you want to - click on the box with the downward pointing arrow, gives you the option to edit, delete or report. Though why you would report your own post I have no idea!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Ohh, I don't know!

SheffieldJane profile image
SheffieldJane

I had similar pains on holiday. I think it was pulling a case on wheels. Paracetamol and codeine helped so that proves it wasn't PMR, especially when I swapped arms and it started that side. Pred causes a certain amount of muscle weakness.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Ah yes - strange pillows and pulling wheely cases!!!!!! Not good...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

No problem, up to a week if necessary. Hope you soon feel better, and even though you're on holiday, you must still get your rest-time in!

Enjoy the remainder.

GCA1947 profile image
GCA1947

Dear Jeanjean16

Only got GCA-I also have pains in my head as you describe plus a very painful right jaw hinge but I'm still in a flare that started on 28th July, I went up to 15 mgs of Pred. recently which was enough to mask the pain and I felt a lot better. One thing you must not do is tell your Rheumatologist. I did putting my foot in my mouth and he went ape and told me to get down to 10 mgs. I also have an inflamed gall bladder currently under investigation or will be when NHS get their finger out and program my CT Scan. I've also got Klinefelters Syndrome treated with Testosterone Replacement Therapy and Osteoporosis treated by Zoledronic Acid infusion, because I couldn't stand upright to take Alendronic Acid, a fractured spine bone which keeps me on the painkillers all the time. You cruise sounds ideal I do hope you can enjoy it. I stayed on 15 for three days but you stay on it for as long as you need it. When I was first diagnosed I was on 60 mgs for 28 days, then 40 for 28-days, then 30 for 28-days and no one batted an eyelid. The flare started at 3.5 mgs and it was grim.

Best wishes

Colin

EdithWales profile image
EdithWales

I had similar pains in the Maldives on a paradise island. I blamed it on too much snorkelling and having my head at a strange angle, I was uneventfully down to 3mgms, Of course it wasn't, it was a flare. I learned then if you have the symptoms , it probably is a

flare,so don't take the risk just increase the dose.

Enjoy the rest of your hols

The others are right holidays are relaxing but also stressful as you are out of your environment

Jeanjean16 profile image
Jeanjean16 in reply toEdithWales

Each time I try a holiday four days seems to be my maximum pain free time. After that I have to increase the preds.

Amkoffee profile image
Amkoffee

I suffer from really bad neck pain and headaches that come from my neck quite often. My doctor took an x-ray and he said it was the beginning of arthritis so I took him at his word. Not meeting some of these comments I'm starting to think it's p.m. are related not arthritis at all. However I take Excedrin Migraine for the pain and that helps a lot. And I doubt that if it were PMR that just taking Excedrin Migraine would do the trick. Now I don't know what to think. But I was under the impression that if your scalp hurt as well as other symptoms that it could be a sign of GCA

Jeanjean16 profile image
Jeanjean16 in reply toAmkoffee

The scalp sensation was what worried ,e, but I have increased to 15mgs and at the moment feel much better.

EdithWales profile image
EdithWales in reply toJeanjean16

I think you have your answer

Grants148 profile image
Grants148

Hello Amkoffee,l have been having trouble with my neck too.I have Pmg,and all the muscle pain in my arms,legs,shoulders etc, and l keep getting missed beats in my pulse.My doctor said that the Pmg is nipping the blood vessels in my neck.This is quite scary and l have an appointment with.a cardiologist next week.l am wondering if anyone else has had this problem.l hope your neck will feel better soon.x

Cookiekelly profile image
Cookiekelly

Not to be an alarmist however this sounds like GCA to me. Mine sorted with neck pain so intense that I considered cutting my head off. Scans were inconclusive and pain killers did not touch it. It was worst at 2 AM. Finally self-prescribed upping prednisone and splitting it into doses every six hours. The results were nearly instantaneous.

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