Neck and shoulder pain

[Pinkpepper]

Hi it’s me again! I’ve had neck and shoulder pain for the last 12 weeks. Blood tests show normal readings and doctor and physio both dismiss it could be my PMR flaring. I’ve been on 2mg for the past six months and had no problem for the first three months. Would it be advisable for me to up my dosage to see if the pain goes, if so what dosage and for how long please? I won’t ask doctor as she wants me off steroids ASAP. Many thanks.

[DorsetLady PMRGCAuk volunteer]

If you had issues for last 12 weeks with no change in blood markers- assuming you had raised ones at diagnosis - I would br inclined to agree with medics.

At such a low dose, the aches and pains are probably due to something else that may have been masked at higher doses.

Perhaps doctor should be looking for the cause if she doesn't think it’s PMR.

Of course if it is PMR it could be the you are on too low a dose, How long have you been on Pred?

[Pinkpepper in reply to DorsetLady]

Three years two months

[Pinkpepper in reply to Pinkpepper]

They thought it could be stress causing tension in neck and shoulder muscles

[crafty_grannie in reply to Pinkpepper]

I also have a sore neck and shoulders that are sometimes very painful. I have mild osteoporosis in my neck so it could be that. However if I have a few of therapeutic massages, it improves very much and sometimes doesn't trouble me again for quite a while. The massages need to be done by a therapeutic massager practitioner, not the usual "feel good" massage.Hope you find a solution soon.🙂

[Pinkpepper in reply to crafty_grannie]

I’m looking to enquire about massage once lockdown is over again. Are they specialised as opposed to a normal deep tissue massage?

[PMRpro Ambassador in reply to Pinkpepper]

I get my therapeutic massage from a proper physiotherapist - their more detailed knowledge of anatomy means they can identify exactly where the need is.

I was talking about physio for PMR with my physio yesterday - here the emphasis is much more on manual mobilisation of the "stuck" bits in the soft tissues, back muscles and muscle attachments around joints and bones, rather than "exercises". Of course that does make physio by telephone rather pointless!

[Pinkpepper in reply to PMRpro]

I’ll have to see if we have any in Southampton when the lockdown is over, many thanks.

[PMRpro Ambassador in reply to Pinkpepper]

Sports massage therapists are good too ...

[Pinkpepper in reply to PMRpro]

Thank you.

[crafty_grannie in reply to Pinkpepper]

The person I see is trained in therapeutic massage. I'm not sure what training is required for deep tissue massage. PMRpro has given more information which is very explanatory. Thanks PMRpro.

[Pinkpepper in reply to crafty_grannie]

Thanks for your advice, much appreciated

[DorsetLady PMRGCAuk volunteer in reply to Pinkpepper]

Ok, in that case it could still be PMR - I see you’ve written a couple of previous posts about same things - have the replies helped at all.

You could try an extra mg or 2 for a week just to see if that helps....if so you might have some ammunition to go back to doctor.

Sometimes at low doses it difficult to know what is PMR and what is just life!

[Pinkpepper in reply to DorsetLady]

Thanks I might try a bit more and see

[PMRpro Ambassador]

I get similar discomfort in neck and shoulders due to tight shoulder and back muscles. In my case the cause is myofascial pain syndrome which is now being recognised more widely as part of PMR - it has been accepted for many years in most of German-speaking Europe:

jrheum.org/content/46/12/1552

I get physio/therapeutic massage to eradicate the knots of hardened fibres in the large muscle groups - because of the ongoing nature of PMR they do tend to recur though. I also find warmth helps a lot - when I have low back muscle spasm, 800mg ibuprofen and sitting against a hot water bottle for several hours can work a miracle!

PS - because the inflammatory substances are trapped in the knots in the muscles or in the muscle fascia they probably don't result in significant increases in the blood markers. There must be enough inflammation for long enough to trigger the liver to produce the proteins that increase the lab results - and for a lot of people still on red that may not happen or may lag a long way behind. However - increasing the oral pred doesn't work as well as more targetted non-drug treatments although steroid injections can be very effective. The manual treatments may make you feel worse immediately after as they release the inflammatory substances from the muscles into the bloodstream and it feels like a flare of PMR until they are washed out of your system. But it is a one-off event, not ongoing like the PMR.

[crafty_grannie in reply to PMRpro]

Thanks for the more detailed information PMRpro. Explains it clearly.

[Pinkpepper in reply to PMRpro]

Hi PMRPro, I’ve tried upping by 5mg for 5 days but just as bad. I think you’re right and I need a bloody good massage. Thanks as always for your advice.

[PMRpro Ambassador in reply to Pinkpepper]

I could do with one too!!!!

[Pinkpepper in reply to PMRpro]

Amazing how stress can affect you.

[PMRpro Ambassador in reply to Pinkpepper]

Tell me about it!!!!

[MrsNails]

Has your GP ever suggested low dose Amitriptyline for your Neck/Shoulders as many people benefit from it as it works as a muscle relaxant and you sleep better thus helping reducing the tension in the shoulders.

MrsN

[Pinkpepper in reply to MrsNails]

No she hasn’t, just wants to get me off steroids ASAP I think.

[MrsNails in reply to Pinkpepper]

Often even GP’s suggest them along side Pred.......

[Pollynolongerinagony]

Hi pink pepper . Sorry to hear u r having problems with neck and shoulder pain. I have PMR . Currently for a week now, it is attacking the point where my right shoulder meets my neck. It is not muscular nor skeletal pain, more like excruciating nerve pain. When I awake I’m not in pain. ASA I move to get up the weight of carrying my head and arm trigger the inflammation locked in that area and the pain is so excruciating I feel sick. Agony to get downstairs safely. I cannot open my painkillers and prednisolone packs as the pincer movement of finger and thumb is agony. I can’t lift my arm to put my cardigan on, nor comb my hair, lift my cup of tea or my spoon to eat my porridge the pain is so biting and vicious it makes me cry. I thank God for my loving hubby who tenderly helps me get through this hour and half till meds kick in and pain subsides. Heat pad helps though weight of it hard to bare. I’m convinced it’s PMR inflammation as it’s released on moving out of bed, just like the locked bilateral hip and shoulder pain that indicated PMR originally April 2018. I am right handed and type a great deal so I believe this is why my right arterial area is being inflamed. I’m tapering pred on 8 mg using DSNS method. This PMR attack will pass. Other PMR attacks I’ve had on this rollercoaster ride are GCA symptoms, AVN crippling right hip pain and recently an atrial fibrillation attack to name but a few. I only get a call from My lovely Rheumy every 3 months where I update her. We treat symptoms , and Like everyone on this wonderful forum, we’ve just got to ride it out and firefight the collateral damage along this journey. The help and advice here, are incredible. Thank you for sharing your situation and I do hope the advice and support of members will make your struggle more bearable. Good luck and best wishes, Polly..

[Pinkpepper in reply to Pollynolongerinagony]

Hi, thanks for your comments, it's funny I'm left handed and suffer badly from left sided neck zdx shiikdef pain especially first thing in ths morning doctor insists its not PMR flare

[PMRpro Ambassador in reply to Pinkpepper]

Possibly not - but it could well be myofascial pain syndrome which is closly allied to PMR and found more often in PMR patients than those without. One group has identified it as part of the underlying pathology of PMR and the physios here have said so for a long time

jrheum.org/content/46/12/1552

[Pollynolongerinagony in reply to Pinkpepper]

If it was muscular, skeletal, arthritic , tendon pain i imagine it would affect you on and off all day and night, that’s why the clue for me is morning pain asa I move, then it’s resolved with pain killers and steroids, and ok by lunch time, gone by evening. I’m aggravating that point in my shoulder/neck whilst writing, cooking, typing using right index finger, texting, ... and inflammation build up asleep at night explodes asa I move , not on waking, but on rising... it’s a viscous spasm that locks and grips that area till I medicate for relief. that’s been the key for me. Take care and good luck, where would we be without this incredibly helpful forum... Polly.