Just ride with it I guess?

[Allsgrandso]

Hi everyone, feeling a bit selfish here as I’m back for advice but feel I don’t know enough to give it back or help to anyone on here 😕

I’ve been on 10mg for pmr and doing quite well apart from few upper back pains and little bit of stiffness in shoulders.

Been busy past week or so and feeling ok... until I sat down last night and back was in bits when I went to move. This morning I could barely bend over to put on socks, neck shoulders and back stiff and sore.

Cancelled anything I had lined up for today and resting up.

Is this what can happen even though you’re settled on a dose? I can’t put my life on hold for this 😫

Do I need to up my dose or wait and see after a few days. Can’t function properly today, also feel bit like I have a fever but I don’t. Pins and needles in one hand and two fingers constantly for 3 days last week.

I’m 50 and have no other health issues ever.

Thanks for reading, I know I’m probably ranting a bit here. Be lost without the support here xxx🙏

[SheffieldJane]

You are not being selfish. You help a lot of people by sharing. It is how we all learn and feel less alone.

Well you have clearly overdone it and forgotten that underneath the palliative effect of Pred you have a serious systemic illness. Total rest may restore you, give it a couple of days. Then if you are not better you may have to attack the inflammation with a couple of mgs of Pred. Extra for a week or so. The important thing in my experience is the rest. I am always amazed when it works, but it does.

You are not so much putting your life on hold as adjusting it for the duration. You forgot to pace.

You might want to check with the doctor to see if you've actually done something to your back, especially if painkillers ease it a bit ( not PMR if they help).

[Allsgrandso in reply to SheffieldJane]

Thanks so much SheffieldJane ❤️ I think I’ve just run away with myself this last few weeks alright! It’s a most peculiar thing the way you don’t feel too bad when you’re moving but when you stop it’s unreal how awful you feel. I was determined to get active and keep going, so true I really forgot to pace!

I definitely didn’t injure my back. I always get pains in my upper back close to spine, this was the whole way down last night.

Lesson learned...pace and listen to oneself.

Hard when you find it hard to say no 😌 thanks again, amazing how much better you feel just talking to someone who understands. I feel like my family kind of think I’m over it now and can go back to doing more.... it probably looks like a made up illness to them 🙈

It certainly is not!

Wish you well too x

[Hollyseden in reply to Allsgrandso]

Yes I know exactly what you mean. Feel not bad so do stuff and regret it. Also get what you say about your family, I feel a bit like that too It's difficult isn't it 😞

[DorsetLady PMRGCAuk volunteer]

Hi Allsgrandso,

Would hazard a guess that 1mg was just about enough, but only just if you had a few niggles, so doing extra has put more stress on your body, and it’s finally rebelled!

You may find a couple of days of rest and TLC do the trick, but don’t let it go on much longer than that otherwise you could end up with a full time flare.

You don’t have to put your life on hold, but you do have to adjust it slightly - not easy, but a must!

As we always remind people just because you're on Pred and feel better it doesn't mean the PMR is gone. All the Pred is doing is controlling the inflammation caused by the underlying PMR- and that's a serious illness. Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it. Time mends, along with a little or a lot of TLC, pacing yourself and rest!

Take care.

If you haven’t read this before, have a look -

healthunlocked.com/pmrgcauk......

[Allsgrandso in reply to DorsetLady]

Thanks Dorset Lady 🙏 I was fooling thinking all was ok!! I kind of stupidly thought the pmr was burning itself out.

I do feel I look like a fake though..I can be seen busy and working/doing stuff as normal and look fine on the outside.

People really don’t understand and hard to expect them to when I barely do myself!

Thanks for the link 🤗 I must read it again x

Hope you are keeping well xxx

[DorsetLady PMRGCAuk volunteer in reply to Allsgrandso]

Yes, we all fool ourselves at times

When we look good it’s difficult for others to understand ...and when we feel good we invariably do too much. We’ve all been there..and learnt the hard way!

Battling on with dodgy knee, but otherwise good thanks.

[Allsgrandso in reply to DorsetLady]

Keep on battling 😘

[Perkey in reply to DorsetLady]

Dorset lady I too am struggling with dodgy knee the rheumi (a new one as I have only just moved to Newcastle). Looked at it and said that is not pmr. He drew off some fluid and stuck an injection in my leg and said see you in January. But no difference knee still swelling and all very stiff I can't walk too far that's for sure. So I presume it must be arthritic or something. What causes yours ? I cannot believe 2 years ago I was playing golf and outdoor bowls !!! Then pmr struck I am now off steroids but what next I ask . Hope you are ok and enjoying life 🤷‍♀️🤥 perky x

[DorsetLady PMRGCAuk volunteer in reply to Perkey]

I would guess it’s osteoarthritis. Mine was about before GCA, but then got consumed with the other pains pre diagnosis and then masked whilst on high doses of Pred. Now it’s come back with avengance and 7 years worse!

Waiting for appt with surgeon to see if it’s bad enough for op.

Ain’t life grand🤔😚

[GOOD_GRIEF in reply to DorsetLady]

It sure is grand. We're really lucky.

Not all that long ago getting a new knee wasn't even an option.

The advice I have there is to get it done in spring because you have months and months to recover without the worry of walking on ice and snow. And do your physical therapy exercises diligently and as often as you can without setting yourself back.

My mom had hers done for Easter and was walking across the beach and in the ocean surf by Independence Day, swimming in the waves by the end of July.

[DorsetLady PMRGCAuk volunteer in reply to GOOD_GRIEF]

Hi,

I’m hoping to have an operation date in the post when I get back home. Hopefully, working out the timescale from initial appointment with surgeon and waiting lists it should be around April time - depends on the vagaries of the NHS, unfortunately can’t specify what day you’d like it done, but as it’s at no cost then you take it when you’re offered.

Am with family at moment, and grandson had knee op last week (not as serious as replacement) so I’m carefully watching his rebilitation. Bound to be easier than mine as he’s 50 years younger!

Just want it done really!

[Kath567 in reply to DorsetLady]

Thank you for that analogy. As recently diagnosed with ? PMR ? GCA, I was having a hard time understanding what prednisone was actually doing. You helped put it in perspective.

[DorsetLady PMRGCAuk volunteer in reply to Kath567]

Hi Kath,

Have you finally got a definitive diagnosis yet? Your first post indicated there was some dispute as to what you actually have.

[Kath567 in reply to DorsetLady]

I just got discharged from hospital yesterday. The final diagnosis is rheumatological disease nyd, likely PMR, ? GCA. I am awaiting a temple artery biopsy. Unfortunately, not enough tests were done initially, misdiagnosis as fibromyalgia, no throat swabs, artery biopsy was not done early on. I am back on 50 mg and feeling better. The Rheum said he may never know for certain because prednisone masks everything. At least I am seeing someone now who seems to be paying attention.

[DorsetLady PMRGCAuk volunteer in reply to Kath567]

Okay, well at least you are being treated. The TAB may tell you a bit more, but they are not always 100% conclusive.

If it comes back positive then it is GCA, but sometimes the result can be negative, but that doesn’t mean you don’t have GCA. That’s because sometimes the small amount of artery taken doesn’t show any inflamed cells, either because that bit of sample doesn’t have them (they are not consistent throughout the whole length of blood vessel) or they were there but are now being controlled by the Pred. Hope that makes sense?

Please let us know how it goes, and more importantly how you are.

[Radley01]

Check out symptoms for fibromyalgia..its very similar in some cases..might be worth a trip to your gp..xx

[Allsgrandso in reply to Radley01]

Thanks Radley but it’s definitely pmr. Esr and Crp levels were both very high and preds were amazing after first 24 hours. Appreciate your comment 🙏 hope you are well x

[PMRpro Ambassador]

Sounds like a flare to me - it can happen, the activity of the disease ramps up.

You sound to have been on the cusp - did too much - and the hands sound like carpral tunnel syndrome which can happen in PMR.

Try a bit more and REST for a few days.

And sorry - but you will have to learn to accommodate your gorilla!

[Allsgrandso in reply to PMRpro]

Thanks Pmrpro 🙏 hope it’s not a flare... but I must say since posting this earlier, I do feel calmer. I’m not on my own 🤗

I’m resting loads today, just did bit of cooking and collected my son from school so very slow day. Oh and managed to get in two episodes of Stranger Things which was a bonus!

Plan on doing the same tomorrow and see how it goes 🤞

Really appreciate the reply x be lost on days like these without this forum.

Hope you are keeping well PMRpro xxx

Oh edit to add the gorilla does make me laugh 😆

[PMRpro Ambassador in reply to Allsgrandso]

You have seen the post about it? Just in case:

healthunlocked.com/pmrgcauk......

[Allsgrandso in reply to PMRpro]

Yes I sure have, it’s brilliant😂

[navejasjoe]

Hi Allsgrandso,

My wife had been on 10mg for quite some time, and she was able to function somewhat well, but being that she is a diabetic, she needs to exercise. She was not able to exercise very effectively and was in a lot of pain just when she would begin her exercise routine, so she had to cut it short. Her GP increased her dose to 12.5mg and she has been able to exercise with minimal hardship. Sometimes she tries to overdo her home obligations and she tires quickly. But now her GP wants her to see another rheumy (her first one was useless, as he tried to get her to taper down to nothing too quickly) to manage her intake of pred. She has an appointment on Friday with her new rheumy.

Joe

[Allsgrandso in reply to navejasjoe]

Hi Joe, your wife’s gp sounds really good. It’s awful wanting to exercise and not being fit to. I’m afraid I haven’t been able to get much walking in at all. I feel all my energy is taken up with other stuff.

My husband is incredibly supportive and understanding. We have two adult college kids still at home and a 12 year old, so we drive them around a lot. I work part time and also from home.

At present I have been looking at painting our living room for past 4 months (I always have painted and love it) but there’s nothing left in my reserve to get stuck into it 😕

If I could pick anything for myself to do, it would be painting or up cycling furniture ❤️

I hope your wife gets on well with her new rheumatologist on Fri. Let us know 😉

I wish you both well.