Early Days

[E-wan]

I'm not yet diagnosed but am suffering terrible shoulder pain especially at night. Gp going down physio route first. Physio isn't sure what's going on but thinks possibly frozen shoulder one on one side: less clear on other. I just want to get referred to a rheumatologist as I can't bear the evening pain. What do you think chances are of GP putting me on preemptive course of steroids in the interim. I'm young for PMR but do have autoimmune issues and have a mother who had PMR in her early 50s

[SheffieldJane]

Does your pain respond to ordinary painkillers at all ? If not then perhaps you can make a case for trying a week's worth of 15 mg of Pred per day.

Ask yourself if you have any other relevant symptoms like weight loss, slightly raised temperature? Bilateral pains are a strong indicator. I was often sick in those early days but I think my body was trying to throw off whatever it was.

[E-wan in reply to SheffieldJane]

Painkillers not especially effective. I have just felt generally achey for ages and put it down to being busy / diabetic. Will see what doc says. Pain is always much better during the day. Thanks

[SheffieldJane in reply to E-wan]

A number of people have spoken about some kind of shoulder injury, or a frozen shoulder in the run up to PMR. It certainly seems to be behaving like it.

The doctor will want to take bloods because they may show an elevated level of inflammation. The clearest diagnosis is made by your symptom picture and a fairly dramatic , positive response to Prednisalone.

So you really need a consultation with your GP and possibly a referral to a Rheumatologist. Of course your Diabetes will complicate things. Is it type 1 Diabetis? Type 2 can be a complication of taking Prednisalone and diet needs to be watched carefully.

Whatever is going on with you needs to be diagnosed and treated. Make a note of your key symptoms and the times of day you suffer the most and see your doctor as a matter of priority. Let us know what happens E-wan. There does seem to be a family connection in some cases. Are you in the typical age group 50 +?

[E-wan in reply to SheffieldJane]

Forty eight. Blood tests done but ESR normal but understand they won' t always be definitive. Have a phone consultation this morning to see what next steps we try. Maybe x ray first.. who knows

[PMRpro Ambassador in reply to E-wan]

A non-elevated ESR is more common in younger patients.

[daworm in reply to SheffieldJane]

that was my run up to PMR...sore left shoulder for a few weeks, got worse, Dr said a strain or bursitis a couple days later it traveled across back to other arm, and down the arms..Prednisone time...we both came to the conclusion of PMR...

[Hidden]

Hi,

Are you on a statin? The reason I ask is that by chance I was speaking to someone the other day who is diabetic and had exactly your symptoms, shoulder pain at night that interrupted their sleep.

They had run out of statins and after a few days the pain disappeared. Statins can certainly cause joint/ muscle pain.

[E-wan]

I have been on statins yes but have stopped taking them for last two or three weeks to see if that was cause. Early days but no difference yet. Thanks

[Hidden in reply to E-wan]

When I first started statins (diabetes) I was on atorvastatin and had terrible upper arm pains. Took around 4 weeks for them to settle after I stopped taking them. I was in early 40s then.

Does gp think PMR a possibility? If so I would have thought better to try pred rather than wait weeks for rheu m. (In uk that is) .

[DorsetLady PMRGCAuk volunteer]

Hi E-wan,

I was mis-diagnosed with frozen shoulder initially, one always being worse than the other, but eventually it turned out to be GCA. As Jane says it’s quite a common mistake. Plus if it’s not a frozen shoulder, then physio will make the situation worse not better.

I tried stopping statins as suggested by Keyes, but no difference.

Mine went on for a long time, so please don’t be fobbed off because your blood markers aren’t raised or your age.

Your diabetes may be muddying the waters but if you begin to feel really fatigued and achy then push for referral to Rheumy.

Please keep us informed.

[PMRpro Ambassador]

The only way to find is to ask and possibly show this paper to your GP:

researchgate.net/publicatio...

A week of 15-20mg pred will do no harm - and may shed a lot of light on things.

[E-wan in reply to PMRpro]

Thanks for the paper

[daworm in reply to PMRpro]

don't be afraid of a trial run of pred..I was dead set against it after reading all the horror stories on the internet...seems maybe only the people with a bad experience write in...once I started I haven't had any great problems...some of course but much better than the pain and stiffness...

[E-wan]

Had phone conversation with GP today who said to hang fire on any steroids, stating that most people will feel better on steroids so may not prove anything and given I'm diabetic it could play havoc with my blood sugars. Going to have an xray next week (not sure what that will really show) and if inconclusive push for a referral to rheumatologist. Not sure on wait times so might have to dip into savings for initial private consultation

[PMRpro Ambassador in reply to E-wan]

Where DO they get this idea that pred always makes people feel better!!!!!! The idea is that one week of pred won't create too much havoc with diabetes - especially if you restrict your carbs a lot too - and would rule out fibromyalgia immediately. It might also help rule out some of the other alternative diagnoses which MUST be considered in young patients (and in anyone else come to that).

Where are you? Referral time really is a postcode lottery and not all rheumies are born equal...

[E-wan in reply to PMRpro]

I'm in Edinburgh

[PMRpro Ambassador in reply to E-wan]

Ah - no real choice then. Shame. You know there is a Scottish charity?

pmrandgca.org.uk/

They may be able to recommend someone who does private work if that is a consideration.

[SheffieldJane in reply to E-wan]

Edinburgh! My old home town. I used to live at Rothesay Place in the West End. It gave me a life long love of Georgian architecture.

I do hope the doctor lets you try Pred it really is the only definitive, diagnostic test for PMR. A two week trial on 15 mgs will do you no harm at all and most probably a lot of good. If it was the doctor's favourite diagnosis of Fibromyalgia it would have no impact whatsoever. I bet she's hung up on how young you are and the median age being 70 for PMR ( I actually doubt that is true now).

[SheffieldJane in reply to PMRpro]

I was just thinking " Give me strength"! When I read your reply to E-wan PMRPro.

I think you would only feel better on Pred if it controlled your pain and stiffness, otherwise I think you'd just feel a bit weird and toxic. Kind of overwrought.

Someone was told that they are to ease the dying!!!!!!

I'd rather have a large scotch.

[Hidden]

Having had type2 diabetes for 17years at time if dx I didn't care about pred putting blood glucose up in initial stages...the pain relief out weighed that issue. Eventually it did become an issue but I reckon once pred goes down I will be off insulin and back to a few pills and diet alone. I would be banging on door for sale of a couple of weeks pred that might sort dx out one way or other. A bout 8 months before dx if PMR I had terrible neck pain. Dr sent to physio. Didn't really help and other symptoms got worse. Neck pain was first pain to reduce within hours of pred. Surgery could have saved fortune in physio and xrays for a few pence worth of pred.

Good luck!!

[E-wan in reply to Hidden]

Thank you all for quick responses - appreciated. So odd that pain just ramps up at night but glad I'm at least making progress in terms of progressing investigation. I will get second opinion if xray shows nowt and GP doesn't suggest short course of steroids. Cheers all

[PMRpro Ambassador in reply to E-wan]

WHEN at night? Early nighttime (2am or so) or later, 4.30-5am?

[E-wan]

Usually 10pm or later

[E-wan]

Hi PMRPro - did your pain ever start to move to your elbow /down your arm? Have to get xray next week and then going to insist on referral or shirt course of steroids.

[PMRpro Ambassador in reply to E-wan]

I had elbow pain, sort of on the outside aspect which then traversed diagonally to the inside of my wrist. Both arms but the right was far worse. I thought it was RSI, it turned out to be tendonitis as part of PMR. The wrist is the first place to flare for me, the elbow hasn't yet resurfaced.