Help please.

[AmberAliona]

I was diagnosed with PMR in December, and my Preds were yo yo'ed from 20 to 30 to 15mgs until January when I took the matter into my own hands, and stayed at 20mgs for 4 weeks before dropping just 1mg. I'm now down to 17mgs a day, and not too bad, but just trying to live with the pain. I have not been referred to a Rheumatologist at all. Should I ask my GP for this as I feel I;m struggling on by myself not really knowing what I'm doing? Haven''t had a blood test since February either. Please help.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry I’m going to ask some questions to try and work out what the problem might be.

What pain in particular? Does it come on after you’ve done something specific. If so, you may be trying to do too much. Your PMR has not gone, it’s still there and needs to be managed.

If you are on the correct level of Pred, then really you shouldn’t be in pain as such.

Were you pain free at 20mg? If so, can you pin point when the pains came back.

Your tapering regime sounds sensible, but there’s obviously something not quite right if you’re having problems on a daily basis.

If you don’t think your doctor is capable of treating your PMR then you can request a referral to Rheumatologist, but you may have to wait a long time.

Early days I had my bloods tested monthly, but as we often say they aren’t the be all and end all - symptoms are the key.

[AmberAliona in reply to DorsetLady]

The pain is across my shouders, often in my neck as well. Hips and down my buttocks into the backs of my legs. I think you're right, I feel better and do too much. Hoovering seems to be the worst, or anything low down ( dusting skirting boards!) On 20mgs I felt quite good, but never completely pain free. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to AmberAliona]

Not everybody is completely painfree, but you do need to learn to pace yourself, and that means not doing too much all in one go!

Bit difficult as we’re so used to multi-tasking, but you aren’t doing yourself any favours if you continue as pre PMR!

Take care

[AmberAliona in reply to DorsetLady]

Thank you so much. I will try. As you say, we are used to multi tasking and it is so frustrating to feel so tired and in pain.

[Hidden in reply to AmberAliona]

Yep. Hoovering and anything that requires the back bent or knees bent or head below hips. If you don't clean skirting boards you may have the energy to do something more enjoyable. Unless dusting floats your boat ...then enjoy🌻

[PMRpro Ambassador in reply to AmberAliona]

I'd suspect that pain is due to spasmed muscles in your back, probably due to myofascial pain syndrome - and the one thing that is guaranteed to arouse my back pain is hoovering or using a broom! My orthopaedic specialist in Germany many years ago told me that was forbidden - leaning forwards as you do puts a massive strain onto the back muscles.

The pred manages the inflammation - the rest is up to you with pacing, resting appropriately and lifestyle changes. I now have a Roomba to save my back. I used to have a cleaner for the things I really can't do but I haven't been able to replace her. Dust is very patient, it will always wait, and if my husband doesn't like it - he may do it himself.

If you must do low down dusting - try sitting to do it, though you will still have to be careful of leaning forwards.

[Lanakay in reply to PMRpro]

My Roomba helps so much! I love it. I also found someone who comes every other Tuesday to do general cleaning. Scrubbing the bathrooms was the worst for me. It made my arms hurt so bad. Love my Roomba and my cleaning lady!

[PMRpro Ambassador in reply to Lanakay]

OH has learned how to clean "his" bathroom for visitors. The shower in "my" bathroom is cleaned after a shower - Roomba does the floor. We won't mention the basin...

[powerwalk]

yes - I'm very guilty of overdoing it when I have a good day. Oh suddenly I'm cured!!!! What magic is this! But soooo nice to get a glimpse of how "normal" people feel and how good it would be if you were like this all the time. Then the crash - just awful and depressing. Every time - the disappointment - and the promise to myself not to fall for it again! But I do!

[Hidden in reply to powerwalk]

Yes over the years I have managed to adapt to pacing. I do overdo it for family occasions but fortunately I love them so happy to have the bad days after. It's worth it if it's something nice that makes you knackered yourself.

[powerwalk in reply to Hidden]

I know and really I get I don't want to be the one there "minding" myself!! Because its just impossible for people to know what you feel like. But I've had a lot of years "pretending" as I already had ME and Fibro - but you can't see them either!!!! Best wishes!

[Hidden in reply to powerwalk]

Pretending is exhausting!!

[powerwalk in reply to Hidden]

Oh totally!!!!!

[Hidden in reply to powerwalk]

Hahahahahaha, "What magic is this?"

Yes... Fool me once, shame on you. Fool me twice, shame on me!!!!

Shame on me!!!!!

[Hidden]

Ohhhhh, I know the pain you describe, ALL too well. Take it from me AmberAliona... I'm one who DID NOT listen to the GOOD ADVICE she was getting here, on this site, in the early days, and paid dearly!!!! PACE YOURSELF!

I would have one good day and go crazy; cleaning, running around, all happy and carefree... and then I'd spend the next 4-5 days ON THE COUCH! : (

It's hard not being able to do the things you used to do, but try finding NEW THINGS! Art projects, writing, reading, research your disease, start a blog!!!! Anything that keeps you still, quiet and introspective. Relax, rest, be calm.

Best of luck.

[Jackoh in reply to Hidden]

So good to see you giving this advice Melissa! What a turn around !!

[Hidden in reply to Jackoh]

Hahahaha! I know, right! ...but if you notice, I only give advice on stuff I'm pretty "sure" of, like finding alternative ways to keep busy, looking for the still and quiet, relaxing, resting and being calm... you know, the stuff I've really failed on in the past!!!! : )

[AmberAliona in reply to Hidden]

Thank you. I will try!

[AmberAliona]

Thank you everyone. It's encouraging to know I'm not alone with this nasty condition. The fatigue is just awful, but I've picked up some good tips from you all. X

[ClarkB]

I was referred to a Rheumatologist quite quickly. However the appointment was for 3 months later, despite referral being marked urgent. I made an appointment privately, and was seen within a few days. I was put on steroids immediately. It was well worth it, with follow up consultation, and able to contact with any problems or queries.