Arms back shoulders really aching : Not sure if a... - PMRGCAuk

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Arms back shoulders really aching

Uglow profile image

Not sure if a flare on the way but my arms shoulders neck aching. How long should I wait to change prednisone please

38 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have you done any activity that could account for pains? No matter how small or seemingly insignificant.

Why do you think it’s a flare? Have you recently reduced? Could it be withdrawal pains?

If you’re convinced it is a flare, then why wait to increase?

Follow the rules outlined in this post -healthunlocked.com/pmrgcauk...

Uglow profile image
Uglow in reply to DorsetLady

I don’t think so maybe longer journey in car but that’s just sitting. So I’m unaware. Of anything that may have caused. Than you for your quick response.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Uglow

Even just sitting in a car can do it….that an a recent reduction msg have been enough. I would be inclined to go back to 20mg for a week, maybe 2- and then when you reduce next time by 1mg only.

20-17.5mg maybe be s recognised taper, but it doesn’t suit all.

If you haven’t got 1mg tablets request them - or cut the 2.5mg (provided they are plain uncoated ones) in half..

Uglow profile image
Uglow in reply to DorsetLady

I get so annoyed I think I’m going down on pred then something happens. It’s odd I kinda feel like a failure when I have to go up! Why I do not know. Iv had a bit of work stress this week more mentally. Maybe hey can do it. I still don’t understand polymyalgia at all. My Gp always make goes a massive sigh when she knows I’m not coming down. I said sorry but I trust you lot and I’m not going through that initial pain if I can help it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Uglow

Few comments -

You are NOT a failure,

Stress will affect your PMR, whether it’s mental or physical,

Your GP may huff and puff, but she does not have your illness, nor does she seem very sympathetic,

PMR is difficult to understand, but in time you will understand it and learn to manage it, not let it manage you.

…and finally being annoyed (though it’s understandable) will not help!

Just give yourself some TLC - and stop beating yourself up about your illness… it and you will get better, but it takes time.

Uglow profile image
Uglow in reply to DorsetLady

❤️❤️

SnazzyD profile image
SnazzyD in reply to Uglow

You’re not failure; it isn’t a race even if it’s a yawn fest for your doctor. Those on here who have an active life or work, seem to have a less easy time of it because autoimmune upset doesn’t like one to push through and to do it day after day. It’s very hard when docs insist on a schedule because it makes one feel there is something wrong and others ‘do it’ better.

SnazzyD profile image
SnazzyD in reply to Uglow

Car journeys were the worst and I didn’t even have PMR, just the Pred for GCA. All that constant head adjustment compensating for the little bumps and things, meant over an hour in the car would lead to headaches and neck and shoulder pain. Then it would recover after a few days.

Uglow profile image
Uglow in reply to SnazzyD

Actually the bumps can upset my body I’m alwaysSaying to my hubby. Hole in road and those humps even slow give your body a real shake and come to think of it it was a bumpy ride. So maybe that. Thanks

Is it the same sort of pain you had before diagnosis? Has it lasted for a few days? If yes to both questions you are probably on too low a dose of pred at the moment. If it's only just started wait a day or so (not too long) to see if it gets better, which would more likely indicate pred withdrawal. If it gets worse, then, again it's likely to be too little pred, warranting a higher dose. Usually we recommend going back to the last dose where you felt perfectly fine (or as good as you are going to get), and staying there for longer before venturing a very slow and careful taper.

On the other hand if the pain has a different quality, and has been sort of the same for a bit, it may be something else. Pred can cause muscle weakening and a lot of us start to get aches and pains which are sometimes hard to sort out from a PMR flare, but actually can be sorted by doing appropriate exercises or something else other than extra pred.

Uglow profile image
Uglow in reply to HeronNS

I will see how I am in morning. Can’t recall any activity different I’m on 17.5 reduced from 20mg week ago. I can’t seem to get it right. I do feel very tired. Thank you for extremely quick response.

HeronNS profile image
HeronNS in reply to Uglow

I wonder whether you are one of the (many) people who find a 2.5 mg drop a little too much? We say generally speaking not to taper by more than 10% at a time, and of course that would be 2 mg at your level. Are you using one of our slow taper methods? That tends to help as it gives the body more of a chance to adapt. Also tapering by one mg at a time seems like it would take longer, but if the taper is successful, as it is more likely to be, then it is the best way and "It isn't slow if it works".

I didn't have the fatigue problem in early days so can't help there, but there will be people along to give advice as I think it is a not uncommon thing to happen even at the moderate (rather than low) dose you are now on. Almost all of us get fatigue when our dose gets much lower and that is caused by sluggish adrenals, but that should not be your issue at the moment.

Flosys profile image
Flosys in reply to Uglow

Hi.i got shoulder and arms pains I don't know what bough it on ,sometimes it really painful.am 4mgs.

Uglow profile image
Uglow in reply to Flosys

PMR 😩😩😩I don’t like you.

Kulots profile image
Kulots in reply to Flosys

I had the same pain particularly when I was at 5, 4, 3 mg.. As I went down each time by 0.5 mg, I experienced extreme fatigue and pain in the shoulder. I stayed on the dosage until I was stable. I stayed at the stable dosage pretty much 3 to 4 week before tapering again. My experiences taught me stick with the tapering plan. Do not taper down 1 mg once you reach 5 mg. Go slow by 0.5 mg. follow Lady Dorset protocol. I do not want to go back to my previous dosage. I'd rather stay the course and be at it until I am stable enough to taper down. I know it seems very slow by 0.5 mg but the side effects of prednisone is less as you taper down..Taking vitamin 10,000 Vitamin D3, Vitamin K2 and astaxanthin daily help me deal with the pain.

lalar profile image
lalar in reply to Uglow

After trying to reduce too quickly from that stage I had to go back up again....now my GP and this group says very slow so it is .5 mg a week for me. I tried to speed one week up by doing more because I hate the side effects and found myself in more pain again..

Uglow profile image
Uglow in reply to lalar

me too

PMRpro profile image
PMRproAmbassador in reply to lalar

Reducing every week is also too fast - it is very easy to overshoot the dose you need and it may take more than a week to be obvious.

I've been having the same problem too, and made worse by wearing my bra as the weight of my boobs seems to place a strain on my shoulders and neck. I thought I was heading for a flare too but then realised in the past week I've been on a long car journey to the mountains to celebrate OH's special birthday, sewed two new cushions, trimmed some bushes and shrubs, done extra housework, wiped down outside fans and blinds, etc. etc. In short I've been overactive and am now paying the price. At least I hope that's the cause. I will have to take it a bit easier in the coming days. Hope you feel better soon.

PMRpro profile image
PMRproAmbassador in reply to Pr0jection

You might benefit from a properly fitted bra - the shoulder straps shouldn't be taking the weight, all of that should be taken by the band

blog.thirdlove.com/does-you...

It is perfectly possible that you are wearing totally the wrong size bra - perhaps a 36D when really it should be a 32G! The correct measurement around your chest below your boobs is crucial!

Pr0jection profile image
Pr0jection in reply to PMRpro

Thanks PMRpro, I remember we had a 'conversation' about this a while ago. I've been professionally fitted for years so I know I have the right sized bra, but the weight of my boobs is causing the problem together with fused vertebra which gives me a forward head posture ( even before taking prednisolone). I've been tackling the problem for years. My mother had the same problem, and my daughter too. Until I met a few other ladies with similar problems I was beginning to think I was deformed! I now wish I'd had a breast reduction when I had the chance but I was too much of a wimp to do so. Thanks for replying..

Uglow profile image
Uglow in reply to Pr0jection

I’m wearing a bralet firmBut not tight seems to help.

Wow I've been having shoulder issues too and never gave a thought to it being my boobs/bra contributing to it. But as you say PMRpro, right size bra is very important! I've just up sized as put on weight (think due to Pred) and boobs getting bigger! Also have been busy doing lots of stuff so think it's a combination of it all.PRobjection - like you I forget that need to pace and not just do as it it will come back and get us 😁

Uglow profile image
Uglow in reply to Shiba64

Boobs yea I’llTake a look at bra too. I did think that

But never followed through. I’m very tired too

Shiba64 profile image
Shiba64 in reply to Uglow

Like you I find it so hard to get my head round this PMR! I'm down to 11mg. Tried going from 12.5mg to 10mg, gave up after 3 days, back to 12.5mg then down to 12mg for 2 weeks, now 11mg.I've got lots going on at moment (physically and mentally) so I'm not sure when I ache if it's the PMR or if I'd feel like that anyway?! Tiredness I know i has more of when in the higher dose but now I don't seem to notice?

This is just a thought and it would help even if not related - try drinking more water. I get really tired head if I get dehydrated and it feels like just want to go to bed - but if have glass water I feel so much better!!

Uglow profile image
Uglow in reply to Shiba64

Thanks I’ll try that. Water is a great healer.

lalar profile image
lalar in reply to Shiba64

Do you know if you gain more weight with more water? Have already put on 15 1bs and moon face. on 12 mg.

HeronNS profile image
HeronNS in reply to lalar

It's carbs that cause the weight gain! I haven't heard that pred causes water retention but actually never thought about it.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

It does together with a salt in the diet - Snazzy often mentions the salt and pred fluid retention problem.

badgut.org/information-cent....

Uglow profile image
Uglow in reply to lalar

Water doesn’t usually cause weight gain in fact it’s supposed to do opposite

PMRpro profile image
PMRproAmbassador in reply to Uglow

Water causes weight gain if it is as fluid retention. Our weight quite often fluctuates from day to day as we retain more fluid some days than others.

nhs.uk/live-well/healthy-we...

"Fluid retention can cause you to gain weight as parts of the body become swollen with fluid. Some types of fluid retention are common, for example:

standing for long periods

being premenstrual

The swelling can occur in one particular part of the body, such as the ankles, or it can be more general."

If you have been eating a low carb or low salt diet and then suddenly binge on carbs or eat salted foods (as in a restaurant meal where they use more salt than you are used to) that can also cause you to retain fluid to dilute the effect in the cells.

Uglow profile image
Uglow in reply to PMRpro

Yes I get that.

cycli profile image
cycli in reply to Uglow

Water of itself doesn't cause weight gain. It helps clean and sort the digestive system and helps lose weight in the process. With excess salt it can be retained. Without changing diet and drinking 750ml first thing when you wake ,mid morning and mid afternoon you can actually lose weight.

Long journey in a car almost certain to set me off. I do have other joint problems so now, before taking any extra pred, I look at what I have done different in the last 24 -48 hours and then try paracetamol and/or ibuprofen and rest up for 24 hours. If the pain is relieved by the painkillers, for me, its not a PMR flare. If it isn't then I up my pred for a few days. For me I normally take 5mg so I double to 10mg and if I don't feel better within a few days then I contact my GP and we decide what's next. I am lucky as this strategy has stopped me yoyoing and kept my dose at 5mg for about 8 months. Most of my flares turn out to be mechanical rather than autoimmune. Short course of NSAIDS puts me back on track. Its taken 5 years to get to this level of pain/condition management and I am lucky to have excellent GP and Rheumy who have made sure I have the meds I need to manage my various problems.

Uglow profile image
Uglow in reply to S4ndy

I’m trying similar not upping for few days then up if painkiller don’t work.

lalar profile image
lalar in reply to S4ndy

What can you take ..Advil or?

Acetaminophen (paracetamol in uk) or Advil (Ibuprofen in uk) is what I usually try.

Uglow profile image
Uglow in reply to S4ndy

No ibuprofen not allowed paracetamol and oxycodone for muscle pain

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