Getting over Christmas

[Nextoneplease]

First of all can I say that I had a lovely Christmas, and hope as many as possible of you did too 🎄

I spent December very gently preparing for family (including grandchildren aged 3, 5 and 7) coming to stay for three days. I did the organising while my supportive hubby put up the decorations etc and cleaning lady did her stuff including making up beds 😊

During December I also reduced from 6.5 to 6mg of pred 🤷‍♀️ Then for the three ‘full on’ days only (or so I thought) I took 7mg. I coped okay, felt good. Was able to play with kids and make snacks etc. while adult daughters and hubby did all the heavy lifting, put turkey in oven etc. Between us I honestly don’t think we could have done it better.

On 26th in the evening everyone left and I had 27th ‘off duty’.

28th was hubby’s birthday. As usual we went to friends an hour and a half away, for lots of good food, drink and talk. At the last minute I thought I’d better take 7mg for this also, but I was so bleary eyed I took an extra 5mg instead of 1mg. This was a revelation!! On a total of 11mg I accidentally had a great day, didn’t do a lot but also didn’t flake out, sang carols etc with real joy, and then….when a visiting one year old was handed to me I could hold her for a minute or two with no pain or stiffness. Bliss 🤗x

We were home by 5 on 29th. All seemed well until I went to bed. No sleep for me 😟The joints in my left hand in particular were so painful they brought tears to my eyes. My GP and rheumatologist say this is osteoarthritis. I could feel the general ‘PMR’ pain and stiffness building up too in my shoulders, hips and feet. After several hours of this I got up, smothered my left hand in ibuprofen gel, took 1mg pred, two paracetamol and a magnesium for cramping muscles. Eventually this took the edge off things enough for me to fall asleep.

So to today: My hand is still bad, I feel exhausted and tearful, and my shoulders, wrists, biceps and knees have PMR type stiffness and aching.

New year is coming up, not doing anything much. Then we’re looking after 7year old for 48 hours while his mums away. The day after she gets back, we’re needed to take him to school etc as she has hospital tests over 36 hours. We were going to take her in but I’m deciding already that she’ll have to take a taxi.

So…..sorry about the length of this. But from being happy on 24 December on 6mg, I now have no idea what to do or take. 6mg was fine but it seems to leave me no leeway to live any sort of real life.

Any suggestions gratefully received 😊

Happy new year to all ⭐️xx

[SnazzyD]

There’s something about uplifting and exciting times that gives us an extra something that puts off dealing with consequences. It’s not even a case of ignoring warning signs hang the consequences, they just don’t come. It’s so frustrating. I have transgressed in spades this Christmas including a bonkers gardening stint. What can you do when your sister and family offer gardening time as a present? When you say we can’t enjoy real life, it seems to me that we hold back most of the time and then when you get an absolute peach like Christmas, it is like moths to a flame. I now try to plan for an assumed garbage period after any event that pushes me out of my daily comfort zone. It feels like it still shouldn’t be the case.

Good idea regards the taxi. It is a shame to start the new year with “no’s” but there we are. It is no different to if you were laid up with a fever. 7mg and total rest? How many days have you got for that?

[Nextoneplease in reply to SnazzyD]

Thank you Snazzy and sorry that you’re suffering 😟

7mg for how long ideally? I’m ’free’ and could rest/ go to bed afternoon of 31/12, morning of 1/1, two days 3/1 and 4/1….then committed to child care etc until 8/1. Then have 3 days free….

10mg and go to bed for a week is what I’d like / feel I need 🤷‍♀️

Take care of yourself Snazzy x

[SnazzyD in reply to Nextoneplease]

For the duration? If 7mg isn’t in the dose zone that some people find is hard work for adrenal reasons, that is. Does it feel like a flare or a heavy dose of DOMS and exhaustion? Perhaps 48 hours of proper rest and pain killers and see?

I wouldn’t rate my suffering very highly in the game of misery top trumps.

[Nextoneplease in reply to SnazzyD]

Yes I think for the duration if possible- see my reply to PMRpro x

ps feels like a flare so I think I’ll need to go up before I come down to 7mg….

[SheffieldJane]

Try to get as much rest and sleep as you can. That is what will do the trick more than anything else. Your Christmas sounds perfect, mull it all over while hugging a hot water bottle under a cosy blanket.

[Nextoneplease in reply to SheffieldJane]

Thank you SJ 😊

Yes it was the best Christmas for some years ….just horrible to start another year feeling like this 😟 But I know I’m not alone and will take your kind advice 🤗x

[PMRpro Ambassador]

I was ready to say "tut" when you said you'd tapered in December!!!!! There is a reason we say not to taper just before big events or even in the winter!!

I'm not the person to comment on the rest - that all sounds totally overwhelming to me, but it would have done pre-PMR too as our Christmases were never what you all consider "normal" because of our situation. My normal Christmas was a ski holiday with another family from our extended family - same ages, same interests and every day outdoors on the mountain, eating out most nights because cooking for 8 in a holiday flat was no fun - except for spag bol!!

But I can say that if taking the extra by mistake made you feel so much better - then it does suggest you need something in between those 2 doses. When I say that you shouldn't feel worse at the end of a taper step than you did at the start that isn't just the PMR, it is QOL in general. And there is also a good reason for taking it slowly once you are below 10mg - you need to know that the new dose is enough for you to have an acceptable lifestyle.

But don't fall into the trap of thinking that at 70-ish and after the last 5 years, being down to 7mg pred should mean you can do what you did in 2019. I know none of us want to admit the passing of the years but we have had a very strange period and I know that, despite some very much better medication in the last 3 years and, it seems, success in dealing with low back pain, I have aged very differently in the last 5 or 6 years than in the previous 5. Is it my age or is the strange events? No way of knowing. But we are very different now from what we were 5 years ago,

[Nextoneplease in reply to PMRpro]

Thank you so much PMRpro 😊

I was following medical advice in tapering 🤷‍♀️. But yes, personally I do feel that I need more than 6mg, even if I can just about ‘manage’ on that - with huge help from hubby!

I’d say my lowest comfortable dose is 7mg - and even that is pushing it in stressful situations (or at Christmas). QOL is so important for both me and those around me.

I will contact GP tomorrow to explain and try to get 7mg agreed 🤞I’m personally quite happy with that- you need what you need…

Thanks again 😊

Oh and yes, I’m not expecting to be the same as I was 5 years ago!

[PMRpro Ambassador in reply to Nextoneplease]

"just about manage with huge help from hubby" - that isn't QOL. You shouldn't be dependent on assistance if you don't need to be.

[Nextoneplease in reply to PMRpro]

I agree Pro - in fact I just said that to him. No, I don’t want to be any more dependent than I absolutely have to be x

[DorsetLady PMRGCAuk volunteer]

hi,

I’d be treating as a flare Imthjnk. So if you don’t know the procedure it’s here -

healthunlocked.com/pmrgcauk...

My daughter’s birthday in the 28th as well.. so belted greetings to your hubby.

There’s a very good reason why I wrote this - pity I didn’t post it earlier 🤨-

healthunlocked.com/pmrgcauk...

[Nextoneplease in reply to DorsetLady]

Greetings to your daughter too DL x

Thank you so much. I do think it’s a flare - I’ve never felt like this before when tapering- bad, but not with this much pain. Flare protocol it is 😊Plus hope GP will agree to 7mg restart 🤞

Happy hols to you xx

[Angelsmummy]

Sorry for you N.We all think we are Super heroes at this time of the year and possibly at times during the year.We KNOW we shouldn’t overdo things but we do and hell,don’t we suffer for it eh!As PMRpro said we are all that little bit older too but the Peter Pan in us does not recognise this.Hope you feel better soon and let’s hope 2025 brings us a healthier year eh? Xx💐🍾😜

[Nextoneplease in reply to Angelsmummy]

Thank you Angelsmummy and a happy new year to you too x

[Pixix]

You may like to try Flexiseq gel for osteoarthritis. You have to buy it yourself, it’s not a drug, but it’s had very good results. Ibuprofen is not good with pred, though I realise you are using gel, not tablets. Pred will not help your hands at all if all the problem there lies in OA. I have dreadful trouble with my hands, swollen, can’t remove jar lids, even with the help of aids! Can’t use my walking stick, either!! It really is a most unpleasant pain, & mine gets worse the colder it gets…summer isn’t so much of a problem. You can have steroid injections into your hands, but only a limited number a year. I wear splints, which were prescribed for me at hospital. It all depends how bad the arthritis damage is to your joints, which your GP can determine.

[PMRpro Ambassador in reply to Pixix]

"Can’t use my walking stick, either"

That's why I use a crutch, I don't have to grip the handle when I do need it - which is currently on the paths that are not totally clear and dry with no ice!!!! Or steps,

[Pixix in reply to PMRpro]

I have crutches, but sadly, can’t use those right now. It’s no big deal, we can’t go out right now, & I don’t use it round the house.

[PMRpro Ambassador in reply to Pixix]

I ony use the crutch as a walking stick, not as crutches, but I don't have to hold the handle, just rest my open hand on it.

[Nextoneplease in reply to Pixix]

Thank you for this Pixix 😊

My hands are swollen, hot and red in general (especially the left one). I can’t make a fist or do a ‘thumbs up’ and like you my grip is really poor. Some of the finger joints have little hard bony nodules that are so painful they prevent me sleeping some nights.

I do have some Flexiseq but didn’t have faith it would deal with this . I’ll give it a try- can’t do any harm after all 😊

All the best to you and thanks again x

[Angelsmummy in reply to Nextoneplease]

I have had fusions in fingers and thumb.Lots of little bumps coming up now on joints ,,noticing it more the lower I get on Pred pain wise,but when I am washing up or in a nice hot bath ,it helps the pain.Warmth DEFINATELY helps.,xxx😜🍾

[Nextoneplease in reply to Angelsmummy]

Sorry you have these problems Angelsmummy 😟And yes, I find heat does help! x

[Pixix in reply to Nextoneplease]

Hope it helps a bit. I suffer from Raynaud’s Disease, too, so have to wear gloves in the winter. I feel that the heat helps the arthritis, too. Yes, Ihave the lumps, too, & I had a nasty fall forwards onto the stairs & ripped 5he tendon off the joint of my little finger…I had a lot of treatment, but it will never be straight again, & is worse, arthritis wise than some other fingers. I do find that steroid injections help, though, & try to time them to get through the worst/coldest/wettest time of year! Take care, S x

[Nextoneplease]

Pixix and PMRpro, I found a useful walking stick online. It has an orthopaedically shaped handle that supports my wrist and hand (I have one for left and right). Just thought I’d mention it in case useful 🤔

walking sticks. co.uk

[PMRpro Ambassador in reply to Nextoneplease]

Thanks!! But I already HAVE a crutch that does the job - she said in her best Scrooge voice ...

[Nextoneplease in reply to PMRpro]

Ah well, you never know, one day perhaps …

What amuses me is the way they go on about how smart it is - that’s the last thing on my mind!!

[PMRpro Ambassador in reply to Nextoneplease]

I don't need one most of the time - currently back out as security in case of lumps of ice on the road, together with the flip down spike! Not so much of the "deep and crisp and even" at present - more the "water hard as iron"!!! And threats of snow to cover it all up to come ...

[Nextoneplease in reply to PMRpro]

Sounds challenging! Take care 😊

I use my stick all the time when out so the orthopaedic handle is vital 👌