Painful arms and shoulders: I have very painful... - LUPUS UK

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Painful arms and shoulders

daniel55 profile image

I have very painful upper arms and shoulders very stiff when I wake up in the morning can't lift my arms up I feel exhausted all the time my legs really ache when I want to walk when i'm outside. I lay on my back at night the pain going down my arms to my hands my wrists really ache and sometimes my right hip hurts. A GP thought I might have Polymyalgia Rheumatica but all my bloods are normal. Has anyone any ideas what symptoms could mean lol to you all

23 Replies

I’m sorry you feel so bad at the moment Daniel. Unfortunately it will take time to recover whatever the cause is. Had you been overdoing things? The best advice I can give from my experience of similar pain is to take paracetamol regularly, use heat pads in bed and get lots of rest. I hope you feel better soon.

daniel55 profile image
daniel55 in reply to BK47

thank you BK47 I already take paracetamol along with gabapentin hydroxychloroquine and zomorph I have also been taking severadol as extra at night.

The fact your blood markers are "normal" doesn't stop the diagnosis being PMR - up to a fifth of patients have blood markers that are within the normal range - but that doesn't mean they don't have PMR. My normal ESR is low single figures, it ran at 16-18 for a couple of months during a severe flare some years ago but nobody registered that, that is still "within normal range". Normal range isn't a range of levels that is fine for a single patient - it is the range found in 95% of a normal healthy population of all ages, often 10,000 or more were tested.

You must also have a rheumy? Try asking them rather than a GP unless there is another GP who is better informed available to you.

KellyInTexas profile image
KellyInTexas in reply to PMRpro

Was about to tag you ! 🥰

PMRpro profile image
PMRpro in reply to KellyInTexas

I look at every post here- even though I don't often reply xxx

KellyInTexas profile image
KellyInTexas in reply to PMRpro

I’d say I catch about 10%

PMRpro profile image
PMRpro in reply to KellyInTexas

I mean new posts - if they are relevant to my knowledge I follow. I read every reply on our forum! Must be nuts ...

KellyInTexas profile image
KellyInTexas in reply to PMRpro

We are saying the same thing! ( neither one of us are at that level of “glutton for punishment!”!)

Only headliners, please!

daniel55 profile image
daniel55 in reply to PMRpro

thank you for your helpful information I do have a phone call booked with my GP on Tuesday morning he is calling to talk to me about a letter he has received from the hospital about when I was recently admitted with pancreatitis so I will take this opportunity to discuss these symptoms with him. I should have had an appointment with my Rheumy in the new year but he is not doing any clinics and hasn't done any since before Christmas they are so busy on the hospital wards that is where he is needed so no Rheumy clinics.

Hi Daniel

You definitely need to speak to someone knowledgeable as bloods can change over time and you need to monitored .

A good Dr will look at your symptoms not just your bloods . My GP didn’t have a clue so was very happy to refer on !

If you are in the UK the wait for rheumatology can be long so if you can afford a private appointment the GP Can easily refer you . Rheumatologist often request different tests to GP and they can write and ask GP to do some of them (they can be expensive ) . They can also ask GP to perscribe medication .

I’m sure you already do but keep a diary of ALL symptoms , pictures of any swellings /marks . We all feel for you on here and can empathise as we also get those horrible pains take care xx

daniel55 profile image
daniel55 in reply to Tiggywoos

Hi thank you Tiggywoos for your sympathetic reply I do have a rheumy but he is not doing any clinics at the moment take care of yourself xxx

Note my diagnosis is Stills Disease which for me manifests as RA in the main but I do have pain and weakness in my upper arms and shoulders (which I attribute to RA) in fact I put everything down to that tbh as my GP is clueless and I’ve managed living with Stills for the last 40+ years. However this last year all sorts of new pain in joints, fever, skin rash, heartburn,nausea, constant headache, flare of Lichen Sclerosis, sore eyes, prickly skin have become constant. I know I must try and see GP and get referred but the thought of starting trying to explain and get understanding from a GP is not appealing.Any way my point is that yes I get pain and weakness in upper arms without diagnosis of PMR or Lupus.

thank you Stills disease for your reply I hope your get an answer soon sending hugs your way xx

I have this all the time & to be honest, I just put it all down to lupus, MCTD & hEDS as they all cause muscle/tendon/joint pain (I actually walk like a crab for a good hour in the mornings). As for bloods, my diagnosing rheumy (who was a lupus expert) actually once told me that blood results aren't always indicative; quite often my bloods have shown 'normal' when I am in the middle of a massive flare & I am generally ANA negative (think it has only tested positive about 4 times in almost 30 years). Are you taking any medication?

LottieLou96 profile image
LottieLou96 in reply to Sher78

I agree completely with you. I put the pain, weakness and fatigue down to lupus etc. I know when I'm flaring, and it's obvious on examination, but my bloods can appear mostly normal.

daniel55 profile image
daniel55 in reply to LottieLou96

thank you Lottielou96

daniel55 profile image
daniel55 in reply to Sher78

yes I take gabapentin zomorph and paracetamol thank you for your reply

daniel55 profile image
daniel55 in reply to daniel55

I also take prednisolone

stillsdisease profile image
stillsdisease in reply to Sher78

Hello Sher78, like you I tend to attribute all aches and pains to my diagnosed condition Stills Disease as it’s so under researched. In recent years I’ve come to suspect more is going on and the new symptoms are worrying but I feel if I keep it all lumped into one thing with a name, when I do see a GP ( as if) at least it gives them a starting point and some direction.

hi, I too have lupus and i get all of this, sadly it has been the same for over 30 years now xx

Perhaps it could just be a lupus flare ? thank you

LottieLou96 profile image
LottieLou96 in reply to daniel55

Hey Daniel

It's not easy sometimes, even amongst ourselves to know if this is a lupus flare or something new, or something acute. Can be hard to say, and a number of AI conditions can cause these things. Likewise can viral infections, stress, overdoing it etc. You know you though. And if it doesn't improve or it's new and concerning for you then definitely see what your rheumi says if you can. I find heat helps my pain a bit as well.

Bless you lottie

daniel55 profile image
daniel55 in reply to LottieLou96

Thank you lottieLou for your reply I have a face to face appointment with my GP on Friday (29th April) It gives some ideas that I can discuss with him xxx

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