PMR with no hip involvement, common?

[SLCR]

I have all shoulder/neck/upper arm pain and stiffness with PMR. My doctor told me it’s “strange” that I don’t have hip involvement. I told her I thought she was incorrect. What do you think?

Thank You!

Stephanie

[paulst955]

Mine started with just neck and shoulders and later went to hips, something for you to not look forward too.

[Nextoneplease]

Hi, I did have some stiffness and pain in hips, thighs and ankles. However, the shoulder, neck, bicep and wrist pain was far worse and is the main part of it that sticks in my memory 😖 However, looking back, I think the hip pain must have been bad, because I remember I could hardly walk - I mean at all, had to hold on to wall to get to kitchen from sitting room - and sitting/standing and getting on/off loo was excruciating. Somehow I seem to remember the upper body pain more…..

So yes, I did have hip pain as well as shoulders etc…..not sure what’s ‘typical’, though xx

PS Just realised it’s the shoulder and arm pain that lingers most and gives me twinges now that I’m on pred

[winfong]

And, for me, it's mostly hips! From what I've seen and read, I'm guessing my state is probably less common than yours.

[HeronNS]

Polymyalgia means pain all over, and by the time I was diagnosed I could hardly move for pain. However recollection of the preceding year it did start with difficulty standing and taking the first few steps, but proceeded to being barely able to turn my head enough to shoulder check when driving and when I remember that year, like Nextoneplease , it's definitely the shoulders and neck which come to mind first. And my recent flare was focused very much on my neck and shoulders.

[Nextoneplease in reply to HeronNS]

Life was very difficult, Heron, for both of us and I’m sure for many on here, for quite some time before we were diagnosed. Like you, I’d say I had PMR for at least a year before diagnosis. I remember, for example, not being able to hold my phone, lift a kettle or even drink the cup of tea, once made….!

GP said I’d overdone exercise - if only 😂

Thinking about this reminds me to be grateful for those little pred pills xx

[HeronNS in reply to Nextoneplease]

I kept thinking I needed to exercise more, in order to get stronger and more flexible. 🙄In fact one of the things which finally drove me to insist on seeing a new doctor was losing ability to do even simple back exercises I'd been doing for years. One evening it took half an hour to get up from the floor where I'd been struggling through my exercises! Went through a bit of that last year when I had trouble getting out of my bathtub! Yes, thank you pred, my dangerous little friend.

healthunlocked.com/pmrgcauk...

[Viv54 in reply to HeronNS]

Snap ! I can't have a bath anymore, it's impossible to get out of.So it's a hot shower for me, nice but I do miss having a good soak 😞

[Nextoneplease in reply to Viv54]

Me too Viv 😞 I really think a good soak would help my muscles, but it’s been a good ten years since I’ve been able to get in and out of a bath (OA before PMR ). Ah well, showers are nice…..😬x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Showers are for waking/warming you up, baths are for relaxing/pampering….miss mine too at times.

[Viv54 in reply to DorsetLady]

Exactly😊

[Viv54 in reply to Nextoneplease]

Snap ! OA for 5 years before PMR, at least we have a nice showers 😊

[Sharitone in reply to Viv54]

Even with pred? I couldn't get into the bath before pred, but that cleared up quickly when I got it. Would a trip to a spa be worth it for you?

[Viv54 in reply to Sharitone]

Good idea, I would love hydrotherapy, but there is no pool near us .

[HeronNS in reply to Viv54]

I hate showers. For some reason I feel like I'm drowning. Had plenty of time to get used to it, pre-PMR, during weeks not allowed to bend broken leg. Back to the bath asap!

[Viv54 in reply to HeronNS]

I don't hate them, just miss my lovely bubble bath somtimes😞

[piglette]

I started with neck and shoulder pain and later on it went down to my hips. My GP did not diagnose it though. I had to go to see a rheumatologist privately in the end.

[Bcol]

When diagnosed it was pretty much all the joints in my body, but looking back I suspect I had PMR for at least 6th months beforehand (hindsight is so wonderful) but I had put it down to OA being grumpy. It was certainly affecting my hips at that time and I still get the occasional grumps there as well as shoulders and neck.

[SMH4CRNA]

New here. For me, I started with difficulty getting out of bed due to the pain in my lower extremities along with stiffness. Started struggling to get down the stairs. Hands would swell. Diagnosed with carpal tunnel syndrome on both hands. Had surgery on both. Wonder now if it was PMR or most likely a combination of both. Had periodic fevers through out the year. Finally decided to go see my PCM which ran tests. My inflammation markers were all elevated. Referred to a Rheumatologist. Got a MRI, x-Rays, more labs. Finally they prescribed prednisone and the symptoms went away within 24 hours. Now I suffer from the side effects of the prednisone.

[Suedeshayes in reply to SMH4CRNA]

What are your side effects? Sue.

[SMH4CRNA in reply to Suedeshayes]

GI side effects such as felling bloated, watery stools, and heartburn. Since I started omperazole few of the side effects decreased. On occasion I'll feel jittery, but typically this occurs if I have not eaten anything. Hope eventually to not take this medication for long.

[PMRpro Ambassador in reply to SMH4CRNA]

Is that "few of the side effects" or "A few of the side effects" decresed with omeprazole?

Did you start anything else at the same time as the pred?

[SMH4CRNA in reply to PMRpro]

Those are the side effects I have been getting since starting prednisone over a month ago. Since starting omeprazole a week ago the side effects have decreased such as the watery stools and heartburn. Naturally these S/E are diet driven as well. No other medications.

Let me add. I decreased prednisone dose from the original 20mg to now 10mg.

[Janet57]

My PMR started in the shoulders mostly and generally feeling fluey/achy all over. The real pain and stiffness was more like you, in the top half of my body with my hips just feeling a bit odd. We are all different but I hope you get some answers so that you get the support you need.

[Angel_doll]

A friend of mine only had it in the shoulders. It came on overnight, she was diagnosed and treated straight away, and off pred in 18 months. As far as I’m aware she’s not had it return.

[calibriel]

Very definitely started with shoulders and upper arms only for me, even though I have previous hip problems (arthritis). In fact I allowed it to get very severe before seeking help because I thought it was arthritis in my shoulders, and I didn’t see how that could be treated. I have since had what might have been a flare in my hips without any shoulder symptoms, and which has responded to a temporary increase in pred, but I’ve since seen my dr (yes, actually seen her) and she couldn’t confirm what the hip pain was due to - possibly PMR or arthritis, but she thought it sounded like bursitis - because pred would have helped with any of those. So, in answer to your question, in my experience it can “just” be in the shoulders - and very painful too. At the peak, I couldn’t lie down so had to (try to) sleep sitting up, and after I did finally drop off, I woke without the strength in my arms to lift myself off the bed: hips not noticeably affected at that point at all. Good luck and hope the treatment works for you

[PMRpro Ambassador]

It happens - the criteria for PMR say that there is involvement of shoulder and/or hip girdles. It can be one or the other or both. And often one is worse or earlier than the other.

Everyone is a bit different - and PMR presents in a whole range of ways. It isn't a simple. straightforward illness that is easy to diagnose and manage. Too many doctors fall into that trap - Prof Mackie from Leeds and my rheumy here in Italy and other members of a research alliance all say it is a complex and heterogeneous disorder. Those of us who have doctors who appreciate that are very lucky.

[Highlandtiger]

It’s such a confounding condition isn’t it… I’m just getting over a significant flare. It has affected mainly my shoulder girdle this time. Last big flare was in July 2021 and mainly affected my hip girdle. When I was first diagnosed 4 years ago it affected both hip and shoulder girdles. I think it started in the hips but I can’t really remember the order it happened now.

[Francesbarbara]

Both my husband and I have had PMR. For me it was all in shoulders and upper arms. My husband's pain was mostly in hips.

[Bonnie-ma]

Well if it’s any comfort even though I have had PMR for 10 years it has only ever affected my upper arms. For the first three years it only affected my left upper arm. This seemed to baffle GP who just dismissed me as atypical but eventually it became bilateral in the upper arms. No hip involvement whatsoever.

[SLCR in reply to Bonnie-ma]

Thank you!!!

[Viv54]

My neck shoulders and upper part of my body are worse than the lower , even though my legs are so stiff , my spine is awful ,but it's a different pain .

[Pawscat11]

My Consultant described 2 bands one of hips and thighs and legs and one of neck shoulders and arms and said you can get 1 band or 2. My Mum only has it in her arms whereas I have both bands. My Aunt only hips and legs.

[nuigini]

PMR pain for me has always been in my shoulders, upper arms, neck and upper back. At it's worse I couldn't lift a dinner plate. Prior to PMR I had undiagnosed legs of led, but never "hip" pain. Legs of led have followed me throughout my 8 years of PMR and prednisone. To this day, a flare of PMR results in increasing pain in my upper body.

For the last few years I have bouts of trochanteric bursitis or myofascial pain in my hips which I understand can come alongside PMR.

I believe, what finally capped things for me in getting the proper diagnosis was sky rocketing ESR and CRP, which were both over 100. CRP of 10 or higher can still confirm a flare.

[winfong]

Does anyone get PMR in the knees? I don't see a lot of that, so I'm thinking it must just be osteo.

[DorsetLady PMRGCAuk volunteer in reply to winfong]

This shows knees - but that doesn’t rule out OA / probably depends on level of Pred.

Overlap

[PMRpro Ambassador in reply to winfong]

PMR can cause knee pain - though try persuading some rheumies of that! In the very early days of my PMR when by far the worst pain I had was in my hands and feet and occasional pain in my knee, the rheumy I saw, wondering if it was inflammatory arthritis, informed me it was OA, she could "feel it" in the knee. That was very clever of her, she did no imaging at all and when I did get x-rays of the same knee some 13 years later, there was no sign at all of OA!

The knee inflammation is in the fibrous capsule - there is a study about it in PMR:

pubmed.ncbi.nlm.nih.gov/238....

and it isn't new stuff, 2013.

[scrambledegg]

I have had PMR for 6 years. All shoulder and neck and upper arm, and occasionally ribs. Not a hint of anything in my hips. I don’t think it “strange” at all. I’m very grateful as I’d be lost if I couldn’t have a long daily walk.