What to do when the pain is just to much, PMR or ... - PMRGCAuk

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What to do when the pain is just to much, PMR or something else

Gaz227
Gaz227

Hi All , Had in brackets probably PMR for 5 years now on 3.5mg pred, had an horrendous night last night awake since 3am. Posted a week or so about chest pain I have had for best part of 2 years, I have always had back pain also but last few weeks my upper back and neck have been terrible convinced it’s skeletal not muscular , I spoke to a Rhuemy on the phone the other week and he loosely said I could have AS . I believe that is also treated with pred. Thing is if the dose is to low what other damage to my body could I be causing , as usual the last thing the Rhuemy said was get off those steroids as quick as you can , but if something else is going on sounds like a ridiculous statement especially as he said the next face to face app will be more than 6 months away . What would you do increase ? I really am confused Incase it’s something else and not PMR and my chest pain is worse then ever. 😩

22 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Chest pain should always be checked - think you need to get an appointment with your GP - face to face - not phone call. When you ring for appointment tell them you have chest pain, and if the receptionist prevaricates say you’ll ring 999! And if necessary, do that.

It may not something serious, but it may be, and lots of hospital doctors are now getting worried that patients are not going to A&E because of the virus when they should be.

Please get it checked.

Gaz227
Gaz227 in reply to DorsetLady

I had a ECG when I first started getting the chest pain and it was fine, as far as getting a face to face with my GP at the moment to hopes , no hope and Bob hope. I just took my morning pred and increased it by 2.5mg to 6mg to see if that reduces the pain , when I cough it’s that feeling like a chest infection , like it’s all bruised inside but my sternum is so painful when I sit up from laying down have to roll onto my side .

PMRpro
PMRproAmbassador in reply to Gaz227

In the event of chest pain the NHS is supposed to still be there - so the gubmint keeps telling us. If you have chest pain - then call 999. That is what you should do in normal times - and what you should do now.

Gaz227
Gaz227 in reply to PMRpro

GP rang me this morning said he is trying to get me a chest

X -ray But not sure if the hospital is doing general X-rays, when he phones back later to give me the outcome of his conversation. If X-ray not available , there is a private imaging centre in Solihull that is open , I will ask him to refer me there plus the social distancing will be better there being a small private centre , think an MRI would be better then an X-ray your thoughts on that ? That see’s a lot more soft tissue and bones , I had an MRI on shoulder and collar bone in February is there a time scale before you can have another as the SC joint might just fall into a chest MRI ,

PMRpro
PMRproAmbassador in reply to Gaz227

It depends what it is. Sometimes you need an x-ray, sometimes you need a CT and sometimes you need an MRI - and they tend to come in that order, sometimes an x-ray shows you need a CT to get better detail on something that can be seen on the x-ray and then an MRI for the different detail that, for example, a surgeon needs to nail a mangled knee joint back together in the right order!

Gaz227
Gaz227 in reply to PMRpro

It’s a good start the ball is rolling as they say . Got to wait for the x ray letter in the post as not aloud to go to the GP surgery

Gaz227
Gaz227 in reply to PMRpro

Just been doing some research this is interesting your thoughts , Cervical Angina , spine disorder which causes chest pain due to compressed nerve roots , I have been suffering with neck problems for so long now stiff hard to move especially ear to shoulder. Could be barking up the wrong tree don’t know whether to put this to the GP before the x ray or after , how would you play it ?

PMRpro
PMRproAmbassador in reply to Gaz227

Does sound a possible candidate - and I would collect documentation and mark the relevant bits before presenting it to the GP. You do need to have it properly investigated.

Hidden
Hidden in reply to Gaz227

I had Two full body MRI within a couple of months. Unlike x-rays it uses no radiation , just magnetic imaging.

So sorry that you had a horrendous night with chest and neck pain. Do you think that you may have done something that has triggered this? Like digging in the garden perhaps? Or do you think this is a new pain? If so I agree with DorsetLady and think that your require face to face medical opinion either at the GP’s or straight to A&E - they are reputed to be quiet at present. You need to get to the bottom of this. Do painkillers help at all? This is another clue that it is not related to your PMR, it may be a trapped nerve or some sort of spasm. Good luck!

Gaz227
Gaz227 in reply to SheffieldJane

It’s been building up for a while now, started with the chest pain occasionally , gradually it increased till now it’s all the time , I have spine problems with my neck and back osteoarthritis also have Edema on my left SC joint never got the injection due to Co-vid outbreak . I think that’s why the Rhuemy wasn’t to concerned when I spoke to him but that was no consolation for how I feel , haven’t really taken any strong pain killers just paracetamol, I have a box of co-codemol but haven’t used them yet , as I have taken 6mg pred this morning will wait and see what happens when it gets in my system . Question . So if pain killers work it’s not PMR is that correct ?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Gaz227

Answer to question - yes you are correct.

SheffieldJane
SheffieldJane in reply to Gaz227

They don’t seem to have any impact on PMR at all, whereas they are helpful with arthritic pain. I hope co-codemal helps. It’s the only drug that helps my husband’s back spasms, he is prescribed Diazepam when in really severe pain and that totally does the trick. I have Cervical Spondylosis and can feel like I have been hit on the back of the head with a cricket bat ( not kidding). I was prescribed Tramadol which dissolves it. They can’t offer much else except a risky sounding operation. First though, you need a definitive diagnosis as soon as you can get one and stronger pain relief.

Constance13
Constance13 in reply to Gaz227

I have been taking cocodamol for years, but I also have inflammatory arthritis. I find the cocodamol eases some of the PMR pain. Not supposed to, but I certainly feel it if I don't take it for a few hours!!!

Hidden
Hidden in reply to Constance13

You are lucky then. Tramadol and co codamol didn't help PMR pain at all. 🥴

Constance13
Constance13 in reply to Hidden

I AM lucky! Ask Pro!😂😂

Hidden
Hidden in reply to Constance13

🤣😂🤣 you kill me constance.

Constance13
Constance13 in reply to Hidden

I hope not!?!😂

Hidden
Hidden in reply to Constance13

🤣😂🤣

PMRpro
PMRproAmbassador

The other obvious things have been addressed - so I'll do the AS.

Ankylosing Spondylitis typically causes pain earlier in the night than PMR which usually is after 4.30-5am and it is more regionally spinal I think. It also improves in the morning once the patient is up and getting moving. It is easy to confuse with PMR in the early stages when it appears in older women - it is probably most common in young middle-aged males. If your rheumy thinks it might be AS, why isn't he doing the testing? Most individuals who have AS also have a gene that produces a “genetic marker,” a protein called HLA-B27, which can be tested for. Many who carry the gene don't develop AS but in the presence of suspicious symptoms it is another brick in the wall. MRI will show the changes - x-rays don't. All those could be done before you see the rheumy again if the suspicion is there.

Typically, NSAIDs such as Naproxen help AS pain - as we know they rarely help PMR. But nowadays AS is treated with one of the anti-TNF biologics and they are very successful. Pred isn't used that often - it does work to some extent, but other things work better. What is often seen is that while pred at higher doses deals with the pain, the patient finds it impossible to reduce to low doses and the rheumy gets frustrated. One lady on the forums had apparent PMR and GCA symptoms, even Prof Dasgupta agreed with that, but when she was able to see Prof Mackie in Leeds and mention night time back pain that improved when she got up and moving, AS entered the room and that was what it turned out to be.

I’m sorry about your pain. It sounds like you might need to talk to a cardiologist.

Gaz227
Gaz227 in reply to smoothilly

Had an ECG that was fine 👍

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