Wondering if I have PMR or not

[anniearp]

I'm a 63 year old woman who woke up one morning nearly 4 weeks ago with joint stiffness and muscle pain in quads, knees and feet, so getting out of bed and walking was suddenly difficult. Also the balls of my feet felt hot. I already had a suspected rotator cuff injury in my shoulder, so that was sore too. Managed to get enough mobility to get myself to work, where I'm on my feet all day. Felt better with activity, worse for resting, every change of position painful. I've made an appointment to see my doctor, but that's 10 days away still. Saw a random doctor at a clinic, he dismissed my fears of RA (too old!) and prescribed an anti-inflammatory (Mobic) which I'm reluctant to take. Have been taking curcurmin etc for past 18 months for very mild OA in hands. Have seen my osteopath 3 times, gives only temporary relief. Symptoms have continued, the only variations being which parts are the most painful, currently feet, knees, quads, upper arms, shoulders and neck (upper trapezius). So since the pain keeps me awake at night I turned to Dr Google, and here I am.

[Constance13]

Welcome anniearp. 💐

Well, you are certainly in the right place by the sound of it.

It does 'sound' like PMR but to be sure, you need a blood test. It's a pity you have to wait so long for a doctor's appointment.

Other's will be along soon and go into more detail about PMR.

[anniearp in reply to Constance13]

Thank you for your welcome, it's been very enlightening reading so many varied experiences

[YuliK]

Like Constance said, it sounds like you have pmr. Your symptoms are very familiar to us all.

Even if your GP does blood tests to verify pmr, a negative result doesn't mean that you don't have pmr.

Stay with us here and you will gleam so much information about pmr.

Try and get an appointment with your gp or rheumatologist asap.

Good luck.

YuliK 🌷

[anniearp in reply to YuliK]

I must admit that initially I was horrified at the thought of having an autoimmune disease because I've always felt my immune system functions very well. Finding this forum has been very encouraging, reading the survival stories and the accumulated wisdom.

[teesher]

Hi Anniearp, it does sound like pmr, especially the problems getting out of bed and painful walking. We all recognise that. However, only a blood test can say if PMR or not. It's a tricky one to diagnose. Let us know how you get on.

[anniearp in reply to teesher]

Yes, mornings are definitely the worst. In the afternoon I feel almost normal just for a while. So I'm wondering when I see my doctor whether I should just describe my symptoms and see what she comes up with, or cut to the chase to save time. I have a feeling the first may be the most diplomatic.

[PMRpro Ambassador]

I've heard some daft things in my time on the forums but someone being told they are TOO OLD for RA is a new one! You are still working so you aren't THAT old - and has he not heard of LORA/EORA (late/elderly onset RA)? It can strike at any age.

However - IF it were RA or another inflammatory arthritis then the Mobic would probably ease the symptoms - it is unlikely to if it is PMR. So it might be worth trying to see.

There is no definitive test for PMR, it is a diagnosis made on the basis of symptoms, raised blood markers in 80% of cases and a prompt response to a moderate dose of corticosteroids all of which make it more likely it is PMR rather than something else. What you describe is typical of PMR - but PMR is just the name given to a set of symptoms due to an underlying disorder and there are several. Some are nastier than others and must be ruled out by the doctors before they decide it's the PMR we talk about.

What a shame you have to wait 10 days - and of course Easter doesn't help does it.

[anniearp in reply to PMRpro]

I have to admit i had a little chuckle about being too old for RA, as my sister-in-law, similar age to me, was diagnosed with it a couple of years ago and is doing well on methotrexate. But no point arguing...

[PMRpro Ambassador in reply to anniearp]

Perhaps you need to see her doctor?

[anniearp in reply to PMRpro]

Good idea. Unfortunately she's currently away on a cruise. The sister in law, not the doctor. So I think she's incommunicada. But I'll give it a try. Thanks.

[piglette]

If you can get a week’s trial of say 15mg of steroids that is usually quite a good indicator if it is PMR or not. In my case I went from being virtually housebound to having a life again in less than 24 hours.

[anniearp in reply to piglette]

Yes, I'm thinking that, but I'm also wondering what diagnosis my doctor is going to come up with and whether she'll send me to a rheumatologist and I'll have another wait. It's a great opportunity to learn some coping techniques.

[bunnymom in reply to anniearp]

Rice packs in the microwave help me tremendously. I use them in the morning and through out the day as needed. Love a warm bath with Epsom salts if you can get in and out that is. Happy Easter and hope you get relief soon.

[anniearp in reply to bunnymom]

Thanks for the suggestions. Don't have a microwave so heat packs are a bit tricky but not impossible. I've been having a lot of Epsom salts baths lately, love them, but as you say, getting in and out can be a challenge!

[piglette in reply to anniearp]

In the end I was in such excruciating agony I was ready for a one way ticket to Switzerland. My GP said I had a virus and just ignored me. I went to a rheumatologist privately in the end who diagnosed me in about five seconds.

[anniearp in reply to piglette]

Yes, I wondered about that route. I'm in Australia and I think the system here is that a GP has to refer you to a specialist. Not sure. I'm managing ok at the moment, but given the sudden onset of this thing who knows what will happen next. I'm just preparing to drive 300km to look after my grandsons while my daughter and her husband move house. Should be interesting. Just hope I can get out of the car at the end of the 4 and a half hour drive. I'll be taking lots of breaks, so maybe it'll be a six hour drive.

[piglette in reply to anniearp]

If you have health insurance in U.K. they normally like your doctor to refer you, but if you pay for a consultant yourself you can just phone them up and make an appointment, although a lot of people like their GP to be involved.

Take your trip easily and don’t overdo it.

[PMRpro Ambassador in reply to anniearp]

I found it made little difference: I was as stiff after half an hour as I was after 3! I was definitely better driving than as a passenger - mainly I think because there is a good lumbar support on the driver's seat and not the passenger one.

[Meggsy in reply to anniearp]

Hello Annie, I’m in Australia and I think you are correct about having to be referred to a specialist by a GP. I don’t see a rheumatologist just my GP who ordered the blood tests along with a bone density scan and prescribed the prednisone. I hope your trip is not too stressful and grandsons are on their best behaviour. ATB 🌻 Marea

[anniearp in reply to Meggsy]

Thanks Meggsy, My GP appointment is now only a week away. Let's hope it's worth the wait. I think she'll probably set me up for a raft of blood tests. She's already identified that I have an MTHFR gene defect so I'll be interested to find out if my current symptoms could be related to that. My symptoms seem much better at the moment, so maybe caring for grandsons is less stressful than my usual job, or maybe all the supplements I'm taking are starting to work.

[mgarvie]

I'm in a similar position of not knowing whether I have PMR or not. And this AFTER seeing numerous doctors and specialists. What really helped me was regular swimming and relaxing in a hot tub! Good luck!