Back pain and PMR

[Singalong1]

Hello. I have posted a few times over the past 9 months, but mostly I just check in every few days to keep up to date. I have found the information shared on this site so very helpful, thank you.

A question please: does anyone else have severe pain in their lumber region, which Pred does not reach, nor strong painkillers? I was diagnosed with PMR in December last year and started on 15mg Pred. I am slowly reducing (following DL taper) and I’m currently coming down to 7.5mg from 8mg. I suspect the vicious pain in my back is unrelated to PMR because the bouts started a few years ago, coming out of the blue every few months and lasting for 6 to 8 weeks. And the back pain has just arrived again (as usual, no obvious cause/trigger), having been free of it for the past 12 months - about the time I started on Pred! Is that a coincidence? I wonder if the Pred kept back pain in check, until I reduced. But I think back pain is more to do with nerves than muscle. I’m in such pain every minute of the day, which is limiting my activities and making me miserable. I’m dreading the next few weeks. Thank you for reading this long message! Any advice gratefully received!

[PMRpro Ambassador]

Mine is myofascial pain syndrome (MPS) - I had had it for some years pre-PMR but it is allied to PMR in that it is caused by the same inflammatory substances but in PMR they are systemic, in MPS they are either in the muscle fascia (the transparent skin covering large muscle groups you are probably familiar with from joints of meat or poultry) or in the form of knots of hardened inflamed muscle fibres in the muscles. Sometime it improves in response to higher doses of pred but returns as the dose falls. It is found more often in people with PMR than in the general population and some experts think they are the same syndrome.

In general, it results in the muscles tightening to protect themselves from more irritation - even just catching your head getting in or out of the car or being on a bus that stops suddenly and you try to stop yourself falling can be enough to set it off. Mine particularly involves the piriformis and lats muscles and once they tighten the pain can be excruciating. Using the vacuum or a sweeping brush can be enough to set it off, the forward leaning movement is poison. And the hard muscle fibres, trigger point, can irritate nearby nerves and result in referred pain into the area supplied by that nerve - sciatica or neck/shoulder pain.

spineuniverse.com/condition....

[Hidden in reply to PMRpro]

That could explain a lot of my problems. This forum is so useful, my doctors wouldn't have a clue, if they do, they certainly don't show it.

[PMRpro Ambassador in reply to Hidden]

UK doctors are particularly bad - I learned all about it in Germany when I first lived there and the MPS/PMR connection from a German orthopod giving a lecture in Innsbruck uni. Doctors here are mostly trained in Austria or Germany - same sort of background and quite willing to think sideways as well as use manual therapies. They certainly don't hand out painkillers like they do in the UK! They rarely come on prescription anyway. Nor does Lidl and co sell them - pharmacy only.

[Hidden in reply to PMRpro]

Very interesting, l have heard similar thinks from a German nurse. Thanks again.

[Singalong1 in reply to PMRpro]

Thank you PMRpro. My symptoms do seem to match those of MPS! My GP doesn’t seem to be aware of MPS. I was referred for a video consultation with Physio dept at Kings, and he also didn’t offer this as a possible cause. Basically, lower back pain is extremely common and there’s not a lot we can do about it. When I asked if a scan might help in diagnosis, he said no. And it wouldn’t change their ‘treatment plan’ (exercise) in any case!Do you have trigger point therapy? If so, has it helped you? I guess I’ll search for local therapists.

Thank you again for your very informative response.

[PMRpro Ambassador in reply to Singalong1]

I have had steroid injections into the trigger points, Our local hospital admitted me when it was particularly bad (I couldn't move without terrific pain in the sacroiliac joints) and their first line treatment was morning infusions of high dose NSAIDs and steroid, evening infusion of diazepam as a muscle relaxant. Fantastic result after 2 days but after the second i.v. diazepam I had a major episode of atrial fibrillation - which it turned out I had already been having due to the PMR! They thought at first it was the steroid but it happened the next night too! So I was sent to the pain clinic for the slow approach. They use a technique called wet needling, multiple sub cutaneous injections of lignocaine all over the back. It can also be done with saline and still works. The first doctor did manual mobilisation too - that woman had the most amazing thumbs! I have also had courses of therapeutic massage, also very effective. At present I have finally got to have physio when it is fairly well under control so we can do other things, I daren't do housework that involves leaning forwards at all - great excuse

[Singalong1 in reply to PMRpro]

That’s interesting PMRpro - I was diagnosed with AFib last summer, a few months before PMR kicked in. And I agree, with the article you attached: stress does seem to be a trigger for my episodes of back pain, although it doesn’t seem obvious at the time. I’ll research local therapists. Thank you again.

PS: Agree- you should go easy on the housework 😊

[PMRpro Ambassador in reply to Singalong1]

Don't worry - I do!

[Kendrew in reply to PMRpro]

I really found your comments on MPS fascinating and I know you've talked before about it. I had a very bad fall about 7years ago, landing heavily on my coccyx. I fractured T11 vertebrae and ever since have had increasingly more issues with back pain that radiates around to my sides and then front when walking for a long time or standing for a long time. It's also massively aggravated by any action that causes me to lean slightly forwards with arms out in front of me......such as washing up in a washing up bowl.... reaching forwards for something, sweeping the floor etc.... that "forward leaning" movement you mentioned resonated so loudly with me! The pain always feels muscular and as if my torso has gone into spasm! Makes me wonder???........

[PMRpro Ambassador in reply to Kendrew]

Oh absolutely - don't know where to direct you in the UK though! I had a wonderful Bowen therapist, she could improve it a lot but it needs long term maintenance and you need a pragmatic Bowen therapist, not an airy-fairy one. My osteopath also helped keep me upright through unmanaged PMR. The need is to identify the messed up muscles and get them to relax so you can then work on them to strengthen them. I have a friend who was sent for something similar in the vague region of Newmarket or Stowmarket - physios who work on athletes/jockeys/cricketers can often offer something useful to us. The usual UK approach of "pain killers" just buries the problem and they aren't so aware that this isn't likely to go away entirely but will need long term attention.

[Noosat in reply to PMRpro]

This may sound too simplistic to you and is certainly not a replacement for expert care. I have found that when I am sitting and not using my hands for other "chores," I use them to massage my back constantly. I find upright posture very important. That slightly forward stance is like a knife in my back.

[Coffeebeans in reply to Noosat]

My sports therapist is very up on myofascial adhesion and pain and is a big believer that keeping the fascia moving is key.

Maybe look in this area? He is not a physio but is degree level qualified in anatomy and physiology and has several qualifications in massage and sports Therapy.

Unfortunately myofascial stuff is still seen as a bit of a 'new age' thing in this country and I've no idea why....

[Singalong1 in reply to Coffeebeans]

Thank you Noosat and Coffeebeans. I will definitely research myofacia and massage treatments.

[Dydee in reply to PMRpro]

I too have an issue with my piriformis with lots of pain in low back and hips. There are some great stretches for this syndrome. Bob and Brad have a Youtube channel and web site where they show how to do them. When I take the time to do them it really helps a lot.

[Singalong1 in reply to Dydee]

Thank you Dydee.Bob and Brad?! Will I find their exercise plan on You Tube?

[Dydee in reply to Singalong1]

Yes, they have a YouTube channel but also a web site. You have to scan through the offerings to find the stuff on piriformis syndrome. They have a great explanation using a skeleton of what it is all about too.

[Formula12]

Hi.Iam new to this site. But It is my back,ribs and other parts that affect me. I just wanted to say that Yes I have an area that causes great pain despite prendisalone but in the same breath it is related. However if you suffer with osteo arthritis or other similar issues prendisalone seems to only target certain "conditions"although reduces inflammation.

I apologise for how this is written but my health affects a once sharp brain.

Oh and their are a couple of conditions you should look up

TIetzi syndrome. And schurmanns disease if you have not heard of them.

Stay well.

[Singalong1 in reply to Formula12]

Thank you Formula12. I’ll look up those conditions. Currently, I’m sitting with a hot water bottle on my back, which does provide some relief. Pain is exhausting, as I’m sure you know! Wishing you well and some relief from pain.