Help

[Teacup777]

Hello. This is my 1st post and need some advice please. I was diagnosed with polymylagia March this year and was put on 40mg Prednisolone and have now tapered down to 12 1/2 mg and have been there for sometime. I have recently developed upper back pain and spasm which gets severe at times which goes around into my chest, with all the muscles in back v sore and v stiff especially in mornings it gets a bit better in day and returns in the evening. Can anyone tell me do you get polymylagia in upper back and also stiffness in feet only when l google it nothing mentions about the upper back and feet so am l right in presuming its not part of the condition. My Doctor is sending m e for an xray ? Osteoporosis. I have not seen Rheumatologist due to covid l am now so fed up of pain and not being able to move around and feeling low at times. Any help would be appreciated. Many thanks

[PMRpro Ambassador]

It certainly is for me - something called myofascial pain syndrome (MPS) can also be a part of PMR and although disputed there are rheumatologists who agree. You can have it on its own but it is more common in people with a PMR diagnosis.

In PMR the inflammatory substances are all through the body, systemic it is called. In MPS the same substances cause the problem but they are localised either in the muscle fascia (the transparent skin you will know from joints of meat and poultry) or in hard knots of inflamed muscle fibres in larger muscles, so-called trigger points. These irritate the muscle and nearby nerves and that leads to the muscles tightening to prevent further "damage" and referred pain in the areas the nerves supply - often sciatica or around the ribs and into the shoulders and neck.

I also had sore feet - tendinitis around the metatarsals we assume. If they are swollen it may be due to RS3PE syndrome although that does normally respond to similar doses of pred to PMR.

Sometimes it may take a few months though - I needed the best part of 6 months for feet and hips. The MPS is ongoing, I also have a scoliosis and that makes my back muscles very picky and the slightest trip, lifting something too heavy for me (and that isn't much!) or even catching my head getting into the car can be enough. I get very good manual mobilisation of the trigger points from the hospital physios here in northern Italy but the chances in the UK are rather less!

These may help:

spineuniverse.com/condition....

spine-health.com/video/myof...

If it is soft-tissue problems as I describe an x-ray won't show much though it may rule out other causes. I found Pilates helped a lot - carefully adapted for me and NEVER trying to do more than was right for ME.

[piglette]

Have you had a Dexascan? That will analyse your bone density to see if you have osteoporosis. Anyone with PMR taking steroids should have a scan.

[SheffieldJane]

I get costochondritis which is an inflammation of the cartilage that joins the ribs together. It feels like being hugged too hard. Heat helps, a hot water bottle with a cover for instance. Painkillers and waiting it out I’m afraid - plenty of rest and box sets. I hope it gets better soon, whatever it turns out to be.

[Teacup777]

Thank you for all your replies l will google them. I have not had a dexascan everything has stopped due to covid. I am using heat patches and a tens machine on my back, tens help a little as it distracts from the pain but my back becomes v sore after a while. The only painkillers l can use is paracetamol which is not a lot of good stronger painkillers upset my diverticulitis . It seems to have triggered pain and stiffness from polymylagia so l though it might have been part of it . Thank you everyone for taking the time to reply and your advice.

[bugs-bunny in reply to Teacup777]

It sounds counterintuitive but I have found cold packs very useful for back & shoulder pains. It brings me real relief - may be worth a try.

[Purplecrow]

Hi, early in my PMR journey (2013), I discovered that acupuncture, Bowen Therapy, and massage were effective treatments for the transitory pain which was severe in early stages of my PMR.

Another remedy was a long hot bath.

You will discover what works for you, and methods may change over time.

This group will provide plenty of ideas and support as you journey.

Be Covid safe.

Kind regards Jerri

[Teacup777]

Thank you for your advice much appreciated

[Noosat]

I find the very hot shower on my back does help. I also massage those long back muscles, especially when I walk. I do have osteoporosis. Enjoy the day !

[Teacup777 in reply to Noosat]

Thank you for your reply. I have since been to the hospital where they done an xray on my back . They found one of the vertebrae's is not straight and that is is normally the 1st sign of osteoporosis so l have to go for a dexa scan to confirm. They have started me on Alendronic Acid 70mg once weekly. Im still in a lot of pain as l cant take codeine l tried but they have really hurt my stomach so l guess hot showers, rest and a bit of exercise. I dont really know much about osteoporosis if the pain eases or tends to flare.

[PMRpro Ambassador in reply to Teacup777]

Osteoporosis itself does not cause pain - any pain may be due to fractures of the affected bones.

[Noosat in reply to Teacup777]

I sympathize with you. I cannot take anything in the ibuprofen/aspirin family so just occasionally try Tylenol which does not help much. I've learnt to live with the complaint. I do find good posture and stretching helps. I was surprised that over the years I have lost 3" in height. The pain/discomfit probably occurs because of "collapsing" bone

[Teacup777]

Oh, only the hospital said as the vertebrae had changed shape this would be causing pain especially on trying to bend over which l can't do at the moment the pain is at the site of the said vertebrae they did not say there was a fracture so bit confusing then.

[PMRpro Ambassador in reply to Teacup777]

The change in shape may be what is called a compression fracture - the bone is squashed together and yes, it will hurt.

[Teacup777 in reply to PMRpro]

does the pain go away? all l can take is paracetamol which doesn't work. I thought lidocaine patch might work but doc said it wouldnt.

[PMRpro Ambassador in reply to Teacup777]

It should improve as the fracture heals and medications take effect - 3 months is a usual sort of timescale without treatment although the pain should lessen considerably much sooner than that. Have you been offered a brace/corset? That and lying down rather than standing may make it less painful.

[Teacup777 in reply to PMRpro]

The only thing l was given was co-dydramol which really played havoc with my stomach so had 2 stop it. I not been offered a brace/corset just told 2 keep moving which is easier said than done lying down is easier but can't keep doing that.

[PMRpro Ambassador in reply to Teacup777]

OH found the codrydramol worked a treat - but the idiots who put him on it didn't hand over a laxative at the same time! That resulted in a fairly unpleasant weekend ...

I think only people who have experienced it should be allowed to manage it - the pain can be excruciating without effective pain relief. I'd make a big fuss about the pain relief - there must be an effective alternative.

[Teacup777 in reply to PMRpro]

I do have probs with a lot of tablets , I am already on laxative because of diverticulitis and ibs. No it was either take what they offered or put up with pain no matter what l said 2 the doc at the hospital she just are u refusing the tablets so l took them knowing they would make me feel poorly. I they just don't know how bad the pain is so l will have 2 put up with it until it heals. Thank you for replying 2 me.

[Teacup777 in reply to PMRpro]

I will have to look these things up its all new to me .