PMR symptoms after steroid injection 12 days ago

[MsWhistledown]

Happy New Year everyone. I hope you all had a wonderful Christmas .🎄

I posted just before Christmas about awful shoulder and neck pain and that I saw a private doctor who thinks my symptoms are PMR. He gave me a steroid injection. It has helped dampen down the pain. It was excruciating but has since improved but not completely gone away.

Can I ask your experience of symptoms please, before I go to see my own GP tomorrow? I want to be as prepared as possible because I know my age will be a factor in putting them off the PMR diagnosis.

My symptoms of pain seems to move around. One day it’s the right shoulder, the next the left. Sometime some pain goes down to my elbow or wrist. Today I feel it between my shoulder blades. My neck will hurt alongside my shoulder pain. I have stiffness when I wake up but this subsides as the day goes on. I also have range of movement in my arms. I can lift them up and to the sides and it doesn’t cause pain. However, I notice when washing my hair or blow drying my hair that my arms do fatigue fast and start to hurt. Is this indicative of PMR?

I have read that a lot of people with PMR don’t have much arm/shoulder range of movement due to the awful pain. I don’t have this. So, are there varying degrees of pain and location of pain?

The pain is really affecting my sleep. I wake up quite frequently having to shift from one side to the other due to pain in my shoulders.

Many thanks for advice.

Have a great day everyone.

[PMRpro Ambassador]

Your GP should be referring you to a rheumatologist - urgently. You are very atypical - being young doesn't exclude PMR but it makes other diagnoses equally or more likely. What you describe of your symptoms is also not entirely PMR-ish and it would be really helpful for the rheumy to see you before lots of pred obscures the view. I don't know if it is universal across the UK but there is supposed to be a system whereby a GP can get direct advice from a specialist and your GP needs to employ it. However you want to look at it, it is something that is very autoimmune-sounding with the fever/sweats/symptoms and your family history supports that.

The moving around of the pain is very unusual in PMR but would be typical of palindromic rheumatism. When you say "early morning" what sort of time do you mean? But as I say - rheumatology needs input at an early date. No more prevarication and guesswork.

[MsWhistledown in reply to PMRpro]

Thanks for your quick reply PMRpro.

I’m not sure of the exact time in the morning. I think it is early hours that I wake up with the sweating around my neck. It must be around 2-3am. I might go off to sleep okay if I can get comfortable but I am soon waking up with pain around 1am and then on and off all night. When I get up in the morning it’s between 6:30-7am I am in some form of pain and feeling stiff. This usually gets better as the day goes on.

You’re completely right. I will insist on being referred urgently tomorrow to a rheumatologist.

[PMRpro Ambassador in reply to MsWhistledown]

That could be typical of a spondyloarthropathy - back pain due to that tends to be earlier in the night than that of PMR which is 4-4,30-ish. That pain also improves once you are up and moving about,

Where in the UK are you? Rheumy referral since Covid is a bit of a postcode lottery, not helped by apathetic GPs (whatever they say). You have done private once - a good private rheumy might get a faster opinion your GP could then work on.

[MsWhistledown in reply to PMRpro]

I am in the South London/Kent area. I’m not optimistic about getting a quick referral in my area.

[PMRpro Ambassador in reply to MsWhistledown]

If another private consultation is an option, Prof Rod Hughes at Chertsey is our choice - worth a journey. Empathetic and, above all, listens to you and treats you as an individual.

[MsWhistledown in reply to PMRpro]

Thank you PMRpro. I will certainly try that option if it proves difficult with my GP.