New Patient

[holty]

I've suffered with incrrasing pain in both upper arms for weeks before I went to my GP who wasn't sure what it was. Then one morning two weeks ago I woke with pain in my shoulders, back, thighs and buttocks and had to see an out of hours doctor who thought it sounded like PMR after having blood tests I was put on 15mg per day of pred. After taking them for 2 days I felt so much better but today which is day 3 I feel stiff and in some pain again. As this is all new to me i wonder if this sounds familiar to anyone? Thanks

[Yellowbluebell]

Hi welcome to the forum. What has probably happened is that you felt so good after taking predthat you have either continued doing your normal activities or have done even more than normal. We all make this mistake. You have a serious illness and you need to rest. Plus pmr affects how our muscles deal with exercise.

There is lots of info on the forum although it may feel over whelming at first. If you have any questions please feel free to ask, there is usually one of us about. YBB

[holty in reply to Yellowbluebell]

Thanks for your reply it helps to know I'm not alone in this and yes I think I got carried away. I will try to rest. Thank you.

[Yellowbluebell in reply to holty]

We have all done it. Especially when its taken months or years to get a diagnosis, the temptation to clear the inch of dust is too much. You will work out what you can and cant do soon enough. Blearyeyed is posting an advent calendar online at the moment and there are some serious tips on how to avoid some of the pit falls and how to get enough rest over the christmas period. Others have joined in with their ideas which might help you. YBB

[holty in reply to Yellowbluebell]

Thank you.

[PMRpro Ambassador]

Hi and welcome!

And what did you do on Day 2? Did you try to catch up on everything you hadn't been doing for the last couple of weeks? That is the most common reason for this sort of effect.

The pred has "cured" nothing - it is managing the inflammation that causes the symptoms - the actual disease process is still chugging away in the background and leaves your muscles intolerant of acute exercise - much the same as you would be if you had proper good-going flu. Do more than your body is able and this is what happens - you feel as if you have been out for a 10km run without training.

Here is a link to some lighter reading - but it still makes very serious points.

healthunlocked.com/pmrgcauk......

[holty in reply to PMRpro]

Hi Yes you're absolutely right I was so impressed with the effects of the pred I thought I was cured. I'm grateful for your reply and will take note of your experience. Thank you.

[SnazzyD]

The usual formula is Pred + Pain free + Pred false energy boost + Over doing it = Fatigue + Pain + Hurt surprise. This is a long haul condition where your body has to decide when it is going into remission while the Pred just suppresses the inflammation that your body is trying to produce. So what you need is Rest + TLC + Gentle exercise + Low carb excellent diet + Patience + Slow dose reduction = Better quality of life. Simples!

[PMRpro Ambassador in reply to SnazzyD]

Love the equation Snazzy!!!!!!

[Yellowbluebell in reply to PMRpro]

Great isnt it? Might have to steal it occasionally!!

[holty in reply to SnazzyD]

Thanks for your reply. I guess this is a learning curve. I'm so grateful to everyone who has replied as the information shared is so helpful. Thank you.

[bunch1974 in reply to SnazzyD]

Love this ☺️ Being newly diagnosed, it helps to know what I can expect and how to handle my days 👍

[Maisie1958]

Hi holty -absolutely familiar to me. Started on 20mg Prednisolone on a Friday and had such a good weekend-not so good on the Monday-had been busy, busy, busy. Was put up to 40mg daily at GP review which I probably didn’t need if I had been sensible. I’m a bit better about pacing now but still will push my luck. It does get better as time goes on, all good wishes.

[holty in reply to Maisie1958]

Thanks for your reply. Glad to know I'm not the only one who overdid it after the first few days. It's so good to hear everyone's experiences as it helps so much. Thank you.

[Highlandtiger in reply to holty]

We’ve all done it. The relief when pred kicks in makes us think we're back to normal. Pred euphoria.... Yay! From virtually not being able to move on the Tuesday when I started taking it, I went climbing mountains in the North West Highlands on the Saturday. Schoolgirl error! We all live and learn. Good luck.

[holty in reply to Highlandtiger]

Thank you all the advice is so helpful as the doctor didn't tell me anything about it or what to expect.

[Hidden in reply to holty]

No mine neither. I found things out online, especially on the forum. Just never be afraid to ask a question. I learnt a lot from questions I didn't know I wanted to ask!

[holty in reply to Hidden]

Yes thanks I will and I'm grateful to you all I feel I've learned so much tonight already.

[Yellowbluebell in reply to holty]

Doctors are notoriously good at NOT letting us know what to expect. There are also some great doctors out there and some really bad ones.

[Yellowbluebell in reply to Highlandtiger]

I shudder at the thought!!x

[Highlandtiger in reply to Yellowbluebell]

Indeed! In my defence my doctor hadn’t told me anything either and I’d not found this forum by then so I really hadn’t a clue. 🤷‍♀️ x

[GOOD_GRIEF]

Yes, your pattern seems to follow that of the initial onset and initial treatment for many of us.

Most likely, you zoomed around far too soon doing far too much because you felt so much better. A familiar trap we've all fallen into along our journey living with this condition. Part of it is just the relief of being able to move about more normally again. Part of it is "pred euphoria", a state induced by the medication itself that manifests in many of us at the initial higher doses.

So here's what you need to do: Sit in the most comfortable chair in your house and start reading the posts on this site. You'll find that not only are not you alone, you'll find the stories of all of us who have had both successes and failures in adapting to this new condition in our lives, and the accommodations we've made that allow us to live more or less normally most of the time. You need to rest. You need to relax. You need a good, healthy diet. You need your calcium and vitamin D3 supplements to counteract the side effects of your treatment. You need gentle exercise that aims to retain range of motion without incurring injury.

In the weeks and months ahead, stop far short of what you feel able to do on a daily basis. Rest - deep rest - is the most important component in minimizing the symptoms of PMR, and the one thing most in your control.

We're here to listen, and to relay our own experiences, and to offer what we've learned. Your mileage may vary somewhat, because we're all a bit different. But some things seem to be constants: take your meds, take your vitamins, eat well, rest well, exercise smart.

We're glad you found us, but not happy you needed to.

Take heart. The good news is we get better with time and attention and care.

[holty in reply to GOOD_GRIEF]

Thanks for those tips. I'd not even heard of PMR before last week so it's great to receive this information and advice it really does help me to understand my situation. Hopefully I'll get the hang of handling it soon. Thanks again.

[GOOD_GRIEF in reply to holty]

This is a rich source of information and comfort for all of us.

Let us hear from you. We'll be thinking of you.

[Marilyn1959]

Hi holty. Welcome. At 15mgs you are on lower starting dose. Whilst you may have overdone it thinking you are 'cured' if you slow down and are still feeling less than 80% of your norm (pre PMR) let your GP / Rheumy know. My Rheumy put the 80% of norm on the table for me to compare effectiveness of pred. It may just be you need a higher starting dose, but you won't know for a few weeks. Meanwhile try to pace yourself even if you feel fit and well.

[holty in reply to Marilyn1959]

Thanks for that advice I'm due back at GP this week so I will discuss my dose with her.

[Blearyeyed]

Welcome and please drop in whenever you need help or support as you begin your journey with PMR/ GCA . As you can see we are a friendly bunch and there is always someone around to give you a helping hand or an electronic hug any time of the day . Take care and take time to relax while you get used to your diagnosis we will because for you along the way xx

[holty in reply to Blearyeyed]

Thank you I will.

[sondya]

Oh, been there, overdone that.

Reminds me of the classic folly from Spike Milligan

Gladstone's famous last words: "I feel better now."