Dancing with the disease

[bunnymom]

This is only my second post and as I try to wrap my head around just what PMR is going to mean to me I have come to the term that it will be a dance. I don't want to have a battle mindset as I feel I will be defeated at every turn! So for now I will dance and let my PMR take the lead. With that being said here are a few questions.

My Dr. says stay on current dose of 13 until I am doing well for several weeks and then I can cut down by 1. From what I read here that is too fast and possibly too much. Do well for 1 month and cut down by .5?

But what does doing well look like? I don't have fatigue but my rib cage is irritated and I take Arthritis Strength Acetaminophen at the maximum dose each day.

I am also going to physical therapy for pain in my shoulders from very tight muscles along side my neck which Dr. said was from stress and not PMR. This all gets to be very confusing. So I am doing exercises which are helping.

So bottom line. How do we know when to lower?

Thank you all for the kind help and enjoy the Spring!

[DorsetLady PMRGCAuk volunteer]

Hi bunnymom,

Just had look at your previous post to remind myself of your story. Would suggest you stay at 13mg for at least a month, hopefully by that time your rib cage irritation may have settled and muscles a bit more relaxed!

You would probably be okay to drop by 1mg, but with your history you might feel "safer" to just try 0.5mg a time. And definitely follow a slow reduction plan that takes a few weeks to get from one dose to the next rather than an "overnight" drop. That way, your body doesn't seem to be affected by the reduction, and you're unlikely to get a steroid withdrawal reaction.

As for when to lower, that's a bit more difficult as it varies from person to person! But really when you have no PMR-type pains. You shouldn't expect to be completely pain free, especially if you have other things going on as well, but, after a while you do get to be able to judge the difference!

As you are new to PMR, it might be an idea to keep a diary of your different feelings, pains etc - not War and Peace! - but just a few jottings so you can compare how you did in different scenarios.

Good luck, and keep dancing! 👣💃

[bunnymom in reply to DorsetLady]

Thank you so much. It helps to know that eventually I will be able to get somewhat of a handle on things!

[PMRpro Ambassador]

DL's idea of a diary is a good one - it allows you to compare how you felt with dose/reductions.

I'd suspect the other things (rib pain and neck pain) could be due to myofascial pain syndrome: if causes trigger spots to form in pairs on either side of the spine, in shoulder muscles, about rib level and in the lower back. They can then lead to referred pain in neck and arms, ribs and legs. I found Bowen therapy particularly useful but a physiotherapist and the local pain specialist also did manual mobilisation of the trigger spots - they can be identified as hard knots of muscle fibres in the affected muscle groups - and the pain specialist also used local steroid injections. The physio should be able to find them if they are there and suggest options. The Pain Clinic in the University Hospital of North Durham in the NE of England uses Bowen therapy - it isn't just an alternative bit of woo and quite a few people on the forum have found it helps the add-ons - not the PMR itself but every little helps.

[HeronNS in reply to PMRpro]

From your description it sounds like what my physiotherapist is doing, over and above the light therapy, is working on those trigger points. ☺🌈

[bunnymom in reply to PMRpro]

Thanks. I will look into that as well!