Deathly fatigue and return of pain

[jayemmemm]

I had my 89th birthday last week and I woke to searing pain in my right upper arm and shoulder. I was stable at 5.5 mg Pred and was about to start the DSNS drop to 5mg. Now, a few days later, I am finding it very difficult to cope with dressing and personal hygiene because the pain has spread to my left wrist. I assume it is a flare and reluctantly suppose I should up the Pred to 10mg for a while. But for how long? I have to get through Christmas but I'd like to be able to return to, say, 6mg and then continue the slow taper. Any advice/reassurance will be most welcome. May I also wish you all a pain-free festive season and a smooth progression to absolute zero.

[DorsetLady PMRGCAuk volunteer]

This link contains advice for dealing with a flare - but as it seems to be one-sided wondering if it could be something else -

healthunlocked.com/pmrgcauk...

Can you recall doing anything to right side, no matter how innocuous it seemed at the time?.. and have you tried painkillers to see if they help?

Would say the deathly fatigue is down to adrenals struggling…so if think other issues are definitely a flare, and you follow advice in link, suggest you drop back down to 5.5 or 6mg and stay there for a few weeks to give them chance to catch up.

[jayemmemm in reply to DorsetLady]

Many thanks, DL.

It looks as though it would be safe to increase to 10mg Pred and stay there until 28th Dec, thus getting through Christmas, then return to 6mg, so that's my plan. I haven't used painkillers for three years but will buy some tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to jayemmemm]

Doesn’t sound typically PMR… but it does have its quirks, so would never say never…

Hope you can get through Christmas pain free and the increase alleviates the shoulder pain..however if it doesn’t then you need to chase it up in the new year.

[jayemmemm in reply to DorsetLady]

Many thanks DL. I'll be watchful.

[PMRpro Ambassador]

The first thing to try with a flare up is to add 5mg to the dose where it happened for a week to 10 days. After that time you can drop straight back to where you were last good. So I'd suggest you try 11mg for a week or so and go back to 6mg to make things simple.

What have you been up to? Unwrapping too many birthday pressies?

[jayemmemm in reply to PMRpro]

Hi, PMRPro.

Thanks for your prompt reassurance and I'll follow DL's and your advice. I cannot recall doing anything that might have caused the shoulder/arm pain.

I assume the left wrist pain is because I cannot use my right arm at all all

[PMRpro Ambassador in reply to jayemmemm]

It's the one-sidedness that is confusing - it sounds more injury or something else. But see if the flare protocol helps - less likely to help injury.

[jayemmemm in reply to PMRpro]

Will do - thanks.

[Longtimer in reply to PMRpro]

Sounds exactly like what happened to me, all right arm/shoulder in pain! Had X-ray/ultra scan, showed Bursitis. Had steroid injection on Wednesday, no relief as yet! Dread going to bed, can just about get in, but getting out with Osteo in base of spine so difficult! Fingers crossed things will ease!

[PMRpro Ambassador in reply to Longtimer]

I have awful low back problems as you know and there is some thought it is due to arthritis in the lower spine. I saw the rehab doc earlier this week and he prescribed lidocaine patches to wear overnight - you use them 12 hours on, 12 hours off. They can take 4-6 weeks to work optimally but even after 2-3 days my morning pain is SOOOO much better, I'd had then for muscle pain before but they weren't brilliant - this is different. Yesterday I used no other pain relief and was fine all day though evening I had other sore bits. Maybe worth you asking? You can get lower dose patches OTC I think but they aren't cheap. Just hoping no-one finds an objection to these!!!

[Longtimer in reply to PMRpro]

Started this reply but it disappeared! Will definitely ask for those, if my arm dosen’t ease! Why do you think they are working now but not before? GP ringing me 8 January so will know by then and ask her. Had lidocaine rubbed on before needle went in. Hope it keeps you pain free!

[PMRpro Ambassador in reply to Longtimer]

Different problem I suspect.

[Orange_2022]

Thanks for your kind wishes. I don't have any advice to give but you have some from the experts anyway! Just wanted to wish you well and hope things improve for you soon. Happy Christmas and here's to a mobile, pain-free 2024.

[jayemmemm in reply to Orange_2022]

I'll drink to that! Take care

[BettyE]

Could it be neuritis? I thought PMR had returned after ten years in remission when I experienced extreme but very localised sudden pain on one arm and wrist. ESR and CRP showed only normal to borderline levels and GP recommended trying Piroxicam. This relieved the pain in a couple of days. When it recurred, but this time in one leg, I again used the Piroxicam and checked with my GP that this was ok. She said if it worked I could bath in it!

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[PMRpro Ambassador in reply to BettyE]

What does the GP think piroxicam is? It has a black box warning from the FDA like almost all NSAIDs! Damn sure I wouldn't be bathing in it ...

[BettyE in reply to PMRpro]

I used less than half a tube. After the borderline ESR/CRP results my notes were marked " Proceed with caution" so goodness knows what she'd prescribe if she thought it was urgent. Have never met her. Not sure I want to.

[jayemmemm in reply to BettyE]

Thanks for the suggestion, Betty E. I have decided to treat as a flare and have increased the Pred to 10mg daily. No change yet but I'm only 8 hours in. I'll stick to the flare routine till after Christmas and will then seek a GP appointment if no improvement. Fortunately my daughter is visiting over Christmas and she makes far better low-carb salads than I can.

[MrsMarigold]

Hello, as some of you know I love your forum but do not have PMR. I have lupus and a very bad spinal condition. So my advice comes from that perspective; however pain is pain in both these dreaded conditions. I have upped my prednisone during events and am getting used to it. I will have a very full house at Christmas and beyond as my father-in-law enjoys the weather here ( I’m in Southern USA). I’ve already increased from 3 to 5 mg. At first I felt guilty for it and began to go down. Why do we feel shame when we are in so much chronic pain? I’m going up to 6 mg.

I’m so sorry you hurt badly and I pray you get some relief. Merry Christmas 🎄 x

[PMRpro Ambassador in reply to MrsMarigold]

I really think most rheumatologists have no concept of the degree of pain we can experience and how much it affects our daily life. I have always been clear with my rheumy here but even so, I have had a horrible couple of years with back problems and some is due to having been able to reduce the pred for PMR thanks to being on Actemra and wanting to do what the rheumy is hoping for. The delays in getting other appointments have added to it - but I said to the rehab doc this week that what I really needed was an MDT meeting of ALL my doctors so they could find and approve some form of pain relief that isn't going to be nixed by one of them as not compatible with something in their realm! I have something that works it seems, who will say no next!!! I'm on my own, I must be able to function - and honestly, not sure I want to live for years extra with this level of pain when I have to actually do more than sit at the computer!

[MrsMarigold in reply to PMRpro]

Being on your own is damn difficult. In a way, we are all on our own because most people who make up our family and friends have no idea how chronic pain deteriorates quality of life. Here in US the doctors do offer more pain relief but as laws change we go to pain management doctors and I have a squinty eye for them. Gabapentin for nerve pain in my spine ( had 2 surgeries) I have a condition called myelmalacia, has been a miracle. I can walk, swim ( like an old person) I am an old person!! Lol. Merry Christmas 🎄 hope it is pain free.

[Griggser in reply to PMRpro]

As there is no sad button I just wanted to wish you well and appreciate all you do for this community, I’m sure I’m not alone here. Being on your own must not be easy but you give so much help to so many on here that you are like part of a large PMR family. Wishing you the best and hope you get some relief soon. Merry Christmas.

[PMRpro Ambassador in reply to Griggser]

Thank you. Being on your own isn't all bad - if I want a bite out of the cheese in the fridge, there's no-one to complain!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true - and you can watch what you want, listen to what you want, and read in bed as late as you want. But I do miss having my early morning tea delivered to bedroom... have to go to son's or daughter's for that..🤣😂

[PMRpro Ambassador in reply to DorsetLady]

Yes, have to confess I drink early morning tea far less often than I used to!

[jayemmemm in reply to PMRpro]

And no-one to count the empties...

[Avadip12]

Dear jayemmemm I feel that at 89 you should be able to have a good Christmas without the worry of reducing steroids . I would suggest at your fabulous years the priority is to ensure you are pain free to enable you to manage life without a struggle . Please discuss with your dr. On how to maintain a comfortable life without the anxiety of the side effects . I think that trying to be on a low dose of treatment is not the priority now , it’s quality of life that’s important .

Wishing you a happy comfortable Christmas .

[jayemmemm in reply to Avadip12]

Thankou, Avadip 12, for your kind response. If the flare routine gives no relief I'll try painkillers, and either way I plan to see my GP after Christmas. She is quite supportive of QOL as opposed to relentlsessly reducing the steroids, presumably because at my age the cumulative effects of steroids is not as significant as in a much younger person. (A not very subtle way of recognising I won't be around for much longer!)

Thankfully. I'll have my daughter with me at Christmasand that will cheer me up no end.

Take care and Happy Christmas.