Normal bloods, Seen Shoulder specialist ?? +/- Frozen shoulder but for trial of oral steroids

[justcallmenurse]

Hi All

I hope I am posting this correctly so that all of you who helped me with my initial Qs will see this. I have seen a shoulder specialist today as the Rheumy referred me to him to rule out a mechanical injury. He informed me that it could be frozen shoulder but less likely as my pain and symptoms have been in both shoulders. I can see that my symptoms could be this but he and I agreed to ask Rheumy to give me a trial of steroids first and see if I respond and then +/- cortisone injections. So now I have to wait until the letters go from him, to the Rheumy and if he agrees to a trial of oral steroids then to my GP and off I go to see if it works.

One thing I wanted to ask, apart from my normal bloods, I haven't really lost weight. In all other respects I appear to fit with PMR although I can see that it could be frozen shoulder too. Does everyone loose weight with PMR?

Does anyone know if oral steroids would help with frozen shoulders?

[DorsetLady PMRGCAuk volunteer]

Hi,

My initial diagnosis was frozen shoulder - as one was always more painful than the other. I now know that was a combination of arthritis and GCA.

Pre correct diagnosis I had 3 steroid injections over a 12 month period, which slightly lessened the pain for a couple of weeks, but nothing more!(since GCA gone into remission I have had 2 more injections for arthritis - and they worked!).

I also had physio on shoulder, whichI also now know, was the worst thing for it!

I didn’t lose weight either. However what I did have was ever increasing fatigue - unfortunately the fatigue and the shoulder pains were not considered to be connected!

Depending on the dose, oral steroids mask a lot of pain!

Do hope you get a definitive diagnosis soon, and I doubt frozen shoulder if both affected. Don’t let it rumble on too long, I did, and suffered for it!

[justcallmenurse in reply to DorsetLady]

Thank you DorsetLady ( I used to live there) I'm a Devon Lady now!

Yes have had increasing fatigue too and you are right, I think the Shoulder guy got that today though and was very good at taking my lead on the decision to go for steroid trial.

[PMRpro Ambassador]

I never lost weight in the 5 years of PMR/no pred: in fact I gained weight because of not being able to exercise as usual and still eating as usual. I used to crave carbs every afternoon - didn't know what I wanted, just something sweet. The first day I took 15mg pred I suddenly realised that feeling had gone - I wasn't hungry!

I doubt oral pred would do much for frozen shoulder - but that is a common mis-diagnosis in patients with PMR. I had hip bursitis and foot/hand tendonitis - which eventually faded after about 6 months on oral pred.

[justcallmenurse in reply to PMRpro]

Ahh thank you everyone, that is very helpful especially because I have worried that because I have not lost weight that maybe I do not have PMR also two of my friends were told they had frozen shoulder ( only 1 shoulder not both like me) and their symptoms were similar although minus night sweats.. every night !! Thought they had gone a while ago!

So, I will, of course try the steroids and hope that it becomes clear one way or another.

I really appreciate your responses and the support i have had to reach out and talk to someone about this.

Shoulder Consultant said he knew nothing of PRM and I told him that up to 20% might have normal bloods with PMR having discussed this on this site, however he was happy to go along with a trial of steroids.

I will let you know when I have them in my hand/mouth and share with you all my response.

[justcallmenurse in reply to PMRpro]

RE weight gain on steroids, yes, am not keen on that as have always been " a good doer" If I were a horse I would have been an Exmoor or Dartmoor. Def not a Thoroughbred!! I have already started on low carb high fat since reading ARNE... ?s post the other day. ( lost a few pounds so that is good. )

[PMRpro Ambassador in reply to justcallmenurse]

Tell me about being a "good doer". My darling great-aunts always said I had a good set of understandings...

[Mary63]

Pre diagnosis it was thought I had frozen shoulders, or RSI, or bursitis, or anything else apart fro PMR. I also had a v painful back and hips which were thought to be unconnected. NO weight loss. I had to BEG for a diagnosis of PMR having found this forum, and read Kate Gilbert’s book. No pain killers worked. No physio worked. I had normal bloods. Keep nagging as it sounds to me as though you may well have PMR. If a trial week of prednisolone works then that would help you a lot.

I wish you the very best of luck !

Mary

[justcallmenurse in reply to Mary63]

Thank you Mary63. I found that physio has only made it worst and that is what he recommend for frozen shoulder. I know it would only cause me a great deal of more pain as been there etc...

[Hidden in reply to justcallmenurse]

Night sweats were definitely a symptom for me pre dx.

[Soraya_PMR]

Orthopod to rheumi to GP, oh what a frustrating delay! I’m impatient on your behalf. Can’t wait to hear your reaction to pred.

[suzy1959]

No weight loss prior to diagnosis, worse luck!

[justcallmenurse in reply to suzy1959]

Yes and Yes!!! Life can be so unfair

[Marijo1951]

Over 10 years ago, I had a frozen shoulder on the right side which eventually went away (and never returned) after I had a steroid injection into the site. The pain was excruciating as I recall. I now have PMR (since last April) and, although my current high-ish dose of pred keeps the pain at bay, I can recall it well and it was different from the frozen shoulder, not only in being in many areas rather than localised, but also in something indefinable in the quality of the pain. In addition, although frozen shoulder is very debilitating, it doesn't give rise to the overwhelming fatigue and general malaise of PMR.

[justcallmenurse]

Thanks Marijo1951 that's helpful . I can understand why Docs might find it hard to diagnose PMR in my case but I have had that overwhelming tiredness, good days bad days. Just hope the trial of oral steroids are definitive.

[polymy]

Have you had an ultrasound scan on your shoulders? My shoulders are a mess. One has severed tendons and a rotator cuff tear. The other has hugely enlarged bursa and muscle tear. Have been waiting 5 weeks to see a shoulder specialist. Am told I have been triaged and put on the list for an appointment. The problems were only diagnosed by ultrasound.

Liz.

[justcallmenurse in reply to polymy]

HI Polymy yes I've had both shoulders scanned and xrayed. All normal, no tears or artherits. I can see how my shoulder pain might poin to frozen shoulders as first the left and now the right have had an evolving pain and loss of movement. .but would I also feel this exhausted and tired? Would it cause night sweats or have I bounced back to menopausal night sweats? Mind you these feel different. With my menopausal ones I would wake up like someone had turned a switch and then I had that wave of fire engulf me. with these I just wake up in pain and sweating. Grrr so frustrating.

Just waiting for letter back from Rheumatologist now....zzzzzz