Scared

Hi, Im 64, feel like 84, sudden neck pain started 4 months ago, now spread to shoulders, arms, lower back and thighs.

Doc said treat with ibuprofen, sent me to a physio who said I had poor posture and gave me exercises, which havent helped.

Rang an emergency number twice in the last month because in so much pain. Can hardly lift my arms to do anything, let alone bathe or wash my hair.

4 days ago put on prednisolone by an emergency doctor, pain 50% gone for 75% of the day, havent slept since taking it.

My own doctor doesnt know about this yet but will later today, been diagnosed with polymyalgia by emergency doctor.

Bloods taken a month ago were all normal, with a slight raised inflammatory marker.

Im so scared after reading some forum posts. I dont want this, I dont want to take medication for 2 years, I just want to be pain free and sleep.

Very depressed.

[123-go]

Hello sleebee. Your symptoms mirror mine exactly and it was also four months before my diagnosis. The only treatment for PMR is Prednisolone, the aim of which is to reduce the inflammation in your body and therefore the pain. Don't be afraid of Prednisolone, it is your friend, not your enemy. please tell us your initial dose of Pred.

[Hidden in reply to 123-go]

its 15mg

[123-go in reply to Hidden]

Ok. It may be that you needed 17.5mg/20mg to begin with but hopefully you'll be able to discuss this at your appointment today armed with some of the information you have received in the comments. I'll reiterate what I and others have said about not fearing Prednisolone. Many people have no side effects and others have mild ones. You will get relief and feel much more 'normal' with the correct dose which should be tapered carefully and gradually. Please come back to us after your appointment; there will be lots of tips from trusted people on how to proceed.... you won't want to be overloaded right now but be reassured that things will get better-maybe sooner than you think. 🙂

[Maisiek]

Hi, so sorry to read this: I’m afraid we all felt the same to begin with: Prednisolone is the only thing that helps and it’s like a magic bullet for the pain and you need it to stop any more serious symptoms: a low carb diet helps with the weight and sleep gets better as you are able to reduce the Preds . We’re all here to support each other - sending hugs . X

[DogAgilityObsessed]

Hello Sleebee Welcome to this group although I fully appreciate you would prefer not to be here. Others will be along soon to give you more advice and reassurance but as 123-go has already said, pred works. There are side effects but these can be managed. PMR isn’t easy to diagnose and many of us have a similar experience to you (pain killers, physio and low/no inflammation blood markers). Then we start pred and pain goes. Please try not to worry.

[DorsetLady PMRGCAuk volunteer]

Im so scared after reading some forum posts. I dont want this, I dont want to take medication for 2 years, I just want to be pain free and sleep.

Hi - all quite normal reactions - but there is no need to fear your illness nor the medication - the former will be controlled by the latter which you will realise will become your friend (although maybe not exactly your best friend at times).

Your illness may not be the nicest, but it’s not cancer nor is it going to kill you, it’s just going to take time to get accustomed to.

Have a read of this - you will get through it, with our help - healthunlocked.com/pmrgcauk...

[Bcol]

Hi Sleebee, welcome to the forum, you have come to the right place for information, advice and support about PMR. There will be others along later who are far more qualified than me to give you further advice. If you could put some more detail on your profile, what dose of Pred you are on, other relevant ailments etc it will help the forum members make relevant suggestions. Pred is going to become your friend for a while, and as with all drugs it can have side effects but, many of those can be managed with careful diet and behaviour. First thing, and one of the hardest to accept is that your way of life, for the time being, is about to change. You have just been been diagnosed, probably with a disease you have never heard of, like many of us. So, please don't hesitate to ask any questions that you may have. Nothing you ask will be thought as being silly. Not the start to 2021 you were wanting, but things will improve.

[DevonshireDumpling1]

Hello Sleebee,

I will echo 123-go in that your experience so far is very similar to mine 15 months ago. My symptoms were classic PMR but my inflammatory markers were within normal limits so my GP basically prescribed Naproxen and told me (nicely) to live with it. I paid for a private Rheumatologist appointment, was diagnosed within minutes of walking through his door and started a 2 week trial of Prednisolone. He also told me that although steroids have a bad press they do the business and should not be feared if taken under supervision. He was spot on and I got my life back - not quite as it used to be but I had to accept that there were adjustments that had to be made and expectations modified.

I have learnt a lot from this forum and the advice given to others has helped enormously although I have been lucky to have had a fairly uneventful time since diagnosis, as I think many do with this condition. You must remember the forum exists to give information and to help people with their problems so you may be under the impression that everyone has a rocky road to recovery however I know several people like myself who have or have had PMR and who have been able to get through it without setbacks.

Remember though, if you want help or support then you will always get it here , given with wisdom and in abundance, but I would avoid other online forums like the plague!

[PMRpro Ambassador]

"Doc said treat with ibuprofen, sent me to a physio who said I had poor posture and gave me exercises, which havent helped."

If I had a pound for every patient who met that ...

There is nothing to be scared about - the majority of the members of this community will tell you that approached sensibly the rest of your journey will be better than the previous 4 months. However, if this really is PMR, you need the pred to be pain-free. You won't atay at the starting dose for long - you taper to find the lowest dose that works for you. everyone is a bit different.

What dose did the emergency doctor put you on and how/when are you taking it? The management of PMR should start with 15-20mg/day. I have been lucky in that 15mg has never really affected my sleep: although I do have nights where I lie awake for ages I also have nights where I sleep like a log! But it will get better.

[Hidden in reply to PMRpro]

Wow, thank you so much everyone for the information and kind wishes. The emergency doc put me on 15mg. day 3 felt a bit better, day 4 today, pain in arms again, no energy, little sleep.

Im a very, very active person, never sit still, look after 1 or more grandchildren most days of the week, used to run 5/10k runs, jog most days.

Also on 125 thyroxine. Im now thinking perhaps somethings happened there and those levels need to be checked. Also read that pred reduces some thyroid levels, so that could be another problem.

My own doctor due to ring before 12 today and im dreading it. She's unsympathetic. I asked for an emergency phone call back from her 3 weeks ago and was given today as the earliest. So have been in bad pain all over xmas and new year until I then called 111.

So miserable and fed up. Ive had a lot to cope with in my life (not medical) and I cant believe after being fit and healthy this has come upon me to add to my stress. I was hoping for an easy retirement.

Sorry to sound so miserable but I just feel like crying all day. I am trying to help myself by reading up about it

Many t hanks

[PMRpro Ambassador in reply to Hidden]

Have you also cut back your activity since taking the pred? It only deals with the inflammation and the actual illness, an underlying disorder of the immune system which creates the inflammation on an ongoing basis, is chugging along in the background making your muscles intolerant of acute activities. I get sore upper arms just from carrying a heavy shopping bag! Which was a good excuse not to - I use a shopping trolley always, even for a few items, load it into the boot bit by bit in smaller bags and empty the boot at my leisure.

For a while you will need to moderate your activity - not forever but it definitely helps in the first year or so to be careful about what you do. If you do too much at one time you are more likely to develop DOMS (delayed onset muscle soreness) and your muscles are less able to tell you they have had enough so it is easy to end up sore. Then they are unable to heal properly so the pain is worse and lasts longer than you have been used to. You learn to adapt and do things a bit differently. Walking is good but you may find 2 shorter walks easier to manage than one long one. You will get back to something like normal life but possibly not quite as active as you were. That said, Skinny Jonny was in a wheelchair in his early 50s:

healthunlocked.com/user/Ski...

but climbed Annapurna IV last year

and Michdonn was also in a wheelchair at Easter one year after a flare, was back to teaching small people how to ski the following season and cycling up and down mountians again in the summer:

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Many of us discovered our retirement wasn't to be quite as we expected and many of us were very active pre-PMR. PMR and GCA love stress - so it will pay to try to remove any that you can, obviously some things are unavoidable. You are not alone - and plenty of help is available here.

If your GP isn't helpful - ask to speak to the Practice Manager and remember you can contact the CCG (Clinical Commissioning Group) to ask for help and advice.

[Hidden in reply to PMRpro]

thank you so much.

[piglette]

It does sound very much like PMR. At least they gave you steroids. Unfortunately PMR is life changing, you cannot just carry on as if nothing has happened. You need to REST, REST, REST. I agree it is very frustrating, however look around and there are a lot of people in a much worse situation than we are. I think everyone on this forum would like to be pain free and sleep, but unfortunately life is just not fair!!

[Coffeebeans]

Hello

I can totally understand, all of us here have have probably gone through the same thoughts on diagnosis.

Things won't always be this bad. Once you get the pain under control things will look better. You will need to make some changes but they will help overall.

Keep reading here though, there's loads of help and tips for every issue.