Could burning shoulders be something other than GCA PMR?

[Cally55]

Stuck on 9mg prednisolone after 3 and a bit years. Azathioprine as steroid sparer. Rheumatologist always say shoulder pain is not the disease, has sent me for ultrasound, x ray and physiotherapy all of which rule out osteoarthritis. I am also taking pregabalin and full dose of tramadol for back pain, but burning and stiffness in shoulders persists. Not scheduled to see rheumatologist until end of October, should I try to see her or the GP? I am desperate to get off the prednisolone but suspect that I do need a little more.

[SheffieldJane]

Far be it from me to contradict your Rheumatologist but shoulder pain is a sure sign of a pending flare for me. I would describe it as grinding rather than burning. 3 years 4 months PMR, 5 mgs of Pred ( just hanging on).

[Marilyn1959]

Hi Cally55. I get a burning sensation (which actually hurts) across the back of my shoulders near the base of my neck. This is always the first symptom when I try to taper. Since it interferes with tapering and is localised my Rheumy referred me to pain management. They are due to inject the area with a scan led pain blocker. It has to be scan led as it is close to spine. The injection has been delayed as I broke the ball joint of my left shoulder which meant I could not lay on my front and maintain the stillness required for the procedure, so yet to have it done.

[Cally55 in reply to Marilyn1959]

Still trying to get appointment with pain clinic, last one cancelled after 2 postponements, apparently because GPs hadn't provided some information although it seems care uk hadn't told them so. GP referred me for back pain from fractures before Christmas, since then had another fracture which is beginning to heal! I suppose by the time I get there I will have something that they can help with!

[Cally55 in reply to Marilyn1959]

Tried to edit my reply but kept getting server error! Was going to add that your description absolutely fits my pain, between shoulders and up back of neck. I suppose it could be because of the kyphosis (hump) from 3 thoracic vertebral fractures, physiotherapist says the weight of my head is now in wrong place. Do you find that painkillers help at all, I don't

which is why I wondered if it is a flare.

[Hidden in reply to Cally55]

Do you take any antacid or indigestion meds do you? I have had burning pain like hot poker behind dug between shoulders blades radiating into the blades. Because of another members message about Ranitidine helping her shoulders I realised mine had eased dramatically the past few days taking Ranitidine. Perhaps try a few days of that. Symptoms in the mid shoulders are a symptom

of acid reflux.

[Marilyn1959 in reply to Hidden]

That is really interesting Poopadoop. I should take Ranitidine for acid reflux after stomach bleed at Christmas, but haven't been doing so as I didn't want to add another med into the mix. I often get wind pain in unexpected places such as side of left boob! so your reference to acid reflex may be cause of shoulder pain has struck a chord for food for thought. Thank you.

[Hidden in reply to Marilyn1959]

I know those boob ones. I haven't had any issues with it so far. And if I don't take it for a few days it starts in my blades again.

[Marilyn1959 in reply to Cally55]

I try not to take painkillers since they quickly mess with my bowels! Your osteoporosis sounds bad. What meds are you taking for this? I ask since I have big decisions to make regarding this. Rheumy wants me to have an annual injection as I won't take AA. However to have the injection I will need to have all the rest of my teeth out and would be at greater risk of jaw osteocronosis since I have had ops for crumbling jaw in the past. Ho hum decisions, decisions.

[Cally55 in reply to Marilyn1959]

Difficult isn't it! I don't have too many tooth problems so various experts thought risk from osteoporosis was greater than risk of jaw necrosis and so have had an infusion of zolendronic acid, felt terrible for 2 or 3 days but no problems since, beats weekly day of indigestion from AA!

[Baileyw06]

Could it be Bursitis?

[Blearyeyed]

It sounds like you have alot going on in that region which could be confusing things .

You mention certain tests and a number of fractures , how did they rule out the osteoporosis, have you had a Dexa Scan ?

If so , and you don't mind saying , what were the results?

Unfortunately , with varied back issues and PMR , each of your neurological , musoskeletal and PMR issues could be causing additional pain and aggravating flares of inflammation in each other.

What level of Pregbalin and other neuro pain / muscle relaxant medication are you on?

Did you have greater pain relief in that area on a higher dose of Pred?

If you did , requesting an increase to the dose from the GP now , to a level you felt comfortable at , until you get things thoroughly assessed by a Pain Specialist seems like the most sensible step at first.

If the GP is reluctant , then ask them to check with the pain clinic or Rheumy to get their advice on it , and see if you can at least trial increasing your dose to see if it helps as it's really unacceptable for you to have to wait until Oct for more practical help and it could cause you more issues in the delay.

If they are still reluctant call the Rheumy and leave a message with their secretary explaining the situation and asking for a call back so they can advise you , or maybe contact the Pain Clinic for you to get you an earlier appointment.

Often the process with non PMR pain relief fir many types of issue or injury follows a course of neuro drugs , local anaesthetic injections in pain sites , then steroid injections , or Pred medication if the one off injection does not help , all done in combination with self care and appropriate physical therapy .

With this in mind the pain clinic should not really object to you managing what is going on by an increase in your steroids anyway . If they are being logical of course.

See how it goes with the GP and then let us know and maybe we can give some more advice.

Take care x

[Cally55 in reply to Blearyeyed]

I fear I am somewhat complicated! I have osteoporosis, spinal score last year -3.1. Had another fracture, T5, in march. Have had numerous x rays, the interpretation of which varies between specialists, some say I also have lumber fracture others not! I have just had a MRI of spine to see if I have any non healing fractures, not got the result yet. No suggestion that there are fractures higher up. I am inclined to agree that increasing prednisolone will probably help. What gets me is that rheumatologist radiates that I am not really trying to reduce pred, and then leaves me my own devices for 6 months! I will tackle tge GP next week.

[Hidden in reply to Cally55]

They can't have it all ways can they.

[Blearyeyed in reply to Hidden]

No but they will try!😋

[Blearyeyed in reply to Cally55]

Are you on any other medications or osteoporosis specific physical therapy to improve your bone health?

You might want to look at some Herons posts to read about her pathway with improving bone health or PM her to ask about it to get the right links.

She may have some useful self help tips that will help you reduce the pain .

You will find her in the list of members , she is one of our new Ambassadors and has done alot of work personally on improving bone health so she may be the most useful guide for you in this forum.

If you can't find her , send me a reply and I will message her to see if she can read you post and share her links here.

I don't know if there is an osteoporosis forum on HU but if there is that might be a good group to join to get some added advice and tips on reducing that area of your pain.

I do think in self help terms ( outside of medications) it may be of greatest benefit for you to find out what things are best to avoid and best to try in both of your health categories ( either from support groups , books , or reading websites from official or charity sources and links they suggest ) then create a programme of foods , supplements , life style changes and exercise for yourself that helps both PMR and osteoporosis from the advice they have in common.

What I mean is , don't do exercise/ therapies that would help PMR but aggravate osteoporosis or recent fracture injuries and vice versa.

[PMRpro Ambassador in reply to Blearyeyed]

Heron's osteoporosis journey:

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Someone doesn't know much about PMR: shoulder bursitis is a common integral part of PMR. Not everyone gets it - just as not everyone gets hip pain/stiffness - but many cases of PMR are misdiagnosed first as rotator cuff problems. Don't tell me rotator cuff problems aren't signalled by shoulder pain!

healthunlocked.com/pmrgcauk...

as mentioned by Bee.

But I get similar central back and neck pain to what you describe due to spasmed muscles and that is the approach the pain clinic here takes - working on the muscle spasm.

[Cally55 in reply to PMRpro]

I need the pain clinic! I now have to chase care uk myself, the original referral having been cancelled because the GPs hadn't provided some information, they didn't know this because they hadn't been asked. Isn't outsourcing wonxerful!

[PMRpro Ambassador in reply to Cally55]

Yeeees - funny, that's what we said umpteen years ago when it was first mooted! Back-door privatisation ...

[Odosmum]

My rheumy explained that the pred helps with other inflammatory conditions (especially temporary ones) and that my shoulder pain was not a flareup (worse one side). Turns out it is a rotator cuff issue and paracetamol is quite effective. I cannot take anti inflammatories as I take them daily for my ra. So, if you feel pain and stiffness is shoulders that can extend to the upper arm muscles and possibly elbow, rotator cuff might be your problem too.