Should I be worried?

[Snuggles2012]

Hi, I'm new here, came across this site (and learned about GCA/PMR) whilst researching some unusual symptoms I've had and wonder if anyone can help based on their experiences.

I'm a 43 year old female and back in April, I developed sudden onset pain in my left temple and headache which I thought was a migraine. After a week I went to GP as I'd never had anything like this before. I mentioned I'd read about GCA. She was very thorough in doing a physical check of me, but no blood tests. She said she didn't see any cause for concern and gave me co-codamol. Painkillers took the edge off the symptoms but didn't mask them completely.

I had the head pain and headaches every day for around five weeks. It wasn't at a constant level, it would change throughout the day. Sometimes my left temple felt slightly tender to touch, but not severe. Over this time I variously experienced pain in both temples, pain around and behind my eyes (I would describe these pains as stabbing), a feeling of pressure behind my eyes, and general headache. It wasn't so severe that it stopped me going to work but it wasn't fun.

Then, as suddenly as it started, the headaches and pain stopped, about 4 weeks ago. Great I thought, can't have been anything serious. However, on several occasions over the last 2 weeks, I've woken up feeling as though I've been weightlifting - aching neck, shoulders and upper arms and occasional sharp pains in the same areas. I cannot think of anything I could have done to cause this. The aching lasts a couple of days then goes away.

In general, I have lately been feeling very tired, and a bit down and lethargic. I don't have any head pain now, but I do notice a very slight tenderness over my left temple when washing my hair.

I have done lots of reading but haven't been able to ascertain whether symptoms of GCA/PMR could come and go like this without treatment. Or, if the headaches were GCA, would they have persisted and worsened?

As the headaches have stopped, I'm not sure whether it's worth going to my GP again but the unexplained aching in my shoulders and arms has worried me a bit. Funnily enough, for the last two days, I've felt good, better than I have for a while, so I don't know if I'm worrying unnecessarily.

I'd be grateful if anyone could tell me if their symptoms came and went like this prior to diagnosis/treatment.

[PMRandRA]

I am so sorry to hear of your awful experience, but particularly your lack of professional help. Your Doctor possibly decided that you were too young for PMR/GCA, but even if this is so, then they should have done more investigation to find out what it is. And there are several things it could be.

Yes, definitely return but if poss to a different doctor. Or perhaps a visit to your local A& E ( are you in UK?) . They won't let it drop until they find out what it is.

I wish you all the best and please let us know what transpires. xxx

[Jackoh]

I am no expert and I'm sure that those with more experience than me will answer you soon but all your symptoms sound very much like GCA and laterly PMR. These symptoms do wax and wane but as PMRand RA has commented presumably your GP felt you were too young for either but he did need to take blood tests to see possibly what was going on. Having said that though not all PMR/GCA patients have raised ESR or CRP levels, symptoms reign, but still GPs still need to do these tests to rule out anything else. I would say if either of the sets of symptoms return or you have any concerns to go back to your doctor ( maybe another GP in the practice) and ask for blood tests to be done. If the headaches or eye symptoms come back then go to A&E for them to take necessary action and don't delay. Seems like you have been proactive but in the meantime I would monitor my symptoms, generally look after myself and go back to GP if at all concerned.

[Patience_1 in reply to Jackoh]

Hello Snuggles, sorry to hear about your symptoms. What you describe (most recently) certainly sounds like it could be the pmr I know and love - even now, though on regular medication, I have good and bad days, and occasionally feel just about "normal".

As far as the headaches go, I had undiagnosed pmr for several months, and in the early stages had excruciating headaches like none I'd experienced before. Didn't have scalp tenderness or jaw problems (as seems to be typical in GCA) but very sharp stabbing pains. After several weeks, those head pains disappeared and I was left with "just" the disabling stiffness in my body. Since then I have been diagnosed with pmr, almost purely on symptoms as my blood markers were very little raised; no suggestion of gca. If I had known back then what I now know about pmr/gca, I would have been straight down to A&E - sight is too precious to risk!

I would echo what others have said - don't ignore the symptoms, get checked out. You may need to take control and ask/demand to have blood tests done - seems an amazing omission on the part of your doctor!

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes think you do need to go back to GP, or maybe see another one if possible in same practice.

Many of the symptoms you describe could be either PMR or GCA, and although it is normal that they steady worsen over time, it is not unheard of them to come and go as yours seem to. You are on the young side for either, but that shouldn't rule you out completely - it has been known.

Think you need to get a second opinion, plus blood tests. Painkillers will lessen the effects, but, as I found out over many months, they will not give you the relief you need, neither will NSAIDs.

Please keep us informed on your progress.

[altywhite]

Hi Snuggles....not a good experience for you. The very least your doctor could have done was to order some blood tests. I'm not an expert...just a ' sufferer' of temporal arteritis (GCA) and I had really bad headaches for about 5 or 6 weeks before I saw a locum who did bloods and prescribed prednisolone....'just in case'...the results were dramatic. I'm 20 years older than you and I know it's not common in one so young but I believe it shouldn't be ruled out. I'd be going back I think. Good luck.

[PMRpro Ambassador]

I had 5 years of PMR symptoms before it was given a name. They were not constant and at one point I had scalp pain for a few weeks which disappeared on its own and I also had jaw claudication over a period of a few months. The most severe pain I had was thigh claudication - pain that started within a couple of minutes using the cross trainer in the gym and went entirely when I stopped and bicep pain when holding a phone to my ear. Those are all usually classified as symptoms of GCA.

I imagine that like all autoimmune disorders in the early stages it is possible to have a status that varies and when the autoimmune disorder is active you may have symptoms but when it calms down a bit they go away. And it does sound as if there is SOMETHING going on. But it is like an intermittent fault with your car - the devil to identify!

Unfortunately I think it is very unlikely that you will find a doctor who will accept the likelihood of PMR/GCA at your age without much more obvious symptoms. I couldn't get heard when I was in my 50s and with much more consistent problems! Had I known what I know now I would have been more persistent and in the same place again I would keep a diary of signs and symptoms. In your place I would try to get a doctor to allow me to have ESR and CRP blood tests done at a point where you are having symptoms. Ask for the request so you can go and get it done without having to wait weeks for an appointment. Not that they are gospel - about 1 in 5 patients with PMR/GCA do not have raised blood markers - but if they were high it would add to the evidence.

In the meantime, I suspect the best you can do is be watchful and if you have any visual symptoms at all or the headache/scalp pain returns and especially if it is severe go straight to the doctor if you can get a same-day appointment, to A&E if not.

[Snuggles2012]

Thank you so much for all the replies, I very much appreciate the comments and advice. I do wish I had pressed the issue when I was having the headaches, but it seems like a fine line between being rationally concerned, and sounding like a hypochondriac because you've read about something online. I also keep trying to rationalise the aches, thinking I might have just slept in a funny position, or maybe I was tense without realising and that's caused aching.

I do feel that if I go to the GP now it will be dismissed, because of my age, and because this week I've really had no symptoms other than a slight tenderness on my temple when massaging my hair during washing.

I think I will monitor what happens and take the advice of keeping a diary of any symptoms and get straight to the GP if the headaches come back or the aching becomes more frequent or persistent. I do have a GP appointment this Friday for something else, I might mention it if there's time, but otherwise I think I'll see what happens.

Thank you all again for taking the time to reply, I will keep you updated if anything changes.

[Amkoffee]

I think it's best if you quit lifting weight while your sleeping. LOL

Seriously, I would defiantly go see a doctor, though what you need to see is a rheumatologist. If you have to see your gp first then so be it. But I'll tell you that my body pain did the very same thing. I went to see the doctor while I was in pain, got the dx and then the pain stopped. No meds or anything. But lo and behold the pain returned soon after.