Having returned from holiday, I have now been on the higher dose of preds for 6 weeks, but I am still experiencing significant aches and discomfort. I know I overdid it when away, and I hope I have learned from that, but I am still trying to work out what level of activity is OK and what is too much (for me).
My current concern is that I was due to reduce back to 15mg after 4 weeks, but because we were going away I didn't (endorsed by this group - thank you). 2 weeks later, I am no better, in fact I would say, a little worse. My GP is due to ring me next week after I left a message for her asking what I should do. I don't think she agreed with another Dr increasing the dose from 15mg to 20mg.
Question - If the symtoms aren't fading after 6 weeks on 20mg, does that indicate I should be on a higher dose?? Should one ever reduce the dosage when still experiencing aches and pains?
There's more info in my original post / bio if folk aren't following what I'm saying.
Thanks in anticpation!
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CJDLSR
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I think it is likely that you are now suffering from the overdoing it on holiday - DOMS: delayed onset muscle soreness. And when you have PMR and are on pred that can take a while to resolve I'm afraid. At present, you need to curtail the activity considerably, until the muscle aches and pains have subsided. Exercising unhappy muscles really isn't good for them.
However - since it could well still be the PMR not under control. no, I don't think you should reduce the dose as you won't know what is due to what. How you get that bit through to your other GP I don't know though!
Thanks for this. We are home now and I am trying to do little (although I did clean the inside of the motorhome yesterday, but then crashed!) Today I feel as if I'm getting my husband's cold. I have a sore throat and don't want to do anything - also keep nodding off!! So I'm giving in to it. I have avoided Covid on the three occasions OH has had it! I've also considered I had a pretty robust immune system, but now I'm on steroids, it seems that is no longer going to be the case.
Is there any advice when contracting a simple thing like a cold when you already have PMR?
Lots of TLC and rest!!! And honestly - cleaning the motorhome should NOT have been on the menu!! Once in a while one of those car valet places has its uses!!!!
Oh dear! I do have a lot to learn!! I was going to go to quite a gentle yoga class on Tuesday and really do my own thing, but from what you've said that might not be recommended?
It's as gentle as you want it to be, and a teacher who lets you do as much or as little as you want. I could even leave after 15 minutes if I wanted to! I will see how I feel - another few days away yet, but if I feel as I do now, I won't go.
Thanks so much for your invaluable advice. I am thinking of trying to find a private consultant if I find myself at odds with advice from the GP. I understand if I private message you with my email and address, you could make some recommendations. Is that correct?
Fair enough. We're in Cumbria - north Lakes. Would probably travel up to 100 miles but would obviously prefer nearer! Should I start a new post for this?
Yes - here only DL and I are likely to see new additions. There are really good people in Newcastle but not sure they do private. I think someone was singing the praises of a doctor in Cumbria recently but no idea exactly where. Things change of course.
Mmm - lots more research needed I think. Next week I'm meeting someone locally who I knew but didn't know she had PMR until recently. I think she's quite a way down the PMR path to me (like several years), so she may know more about the local people - including at the surgeries and the hospital.
I'll write a new post too, to see if anyone else knows of anyone locally.
I'm going to say this from a place of love , but it is tough love.First, yes you may well need a short increase to your Pred dose following sick day rules for 3-4 days , but this will do nothing unless you commit to resting properly for those days as well.
You have probably got DOMS as PMR has said , but you probably had that from Day 2 of your holiday and didn't listen to your body telling you you had to rest.
It's your " Old Normal " mindset still in control.
Before PMR , you will have had the same habit of us all, if you felt sore after overdoing but still had plans, especially on a holiday , you would just decide to keep going because there were things you wanted to do , it would be alright , you could catch up on resting later.
With PMR , or any chronic health conditions , you can't do that, no matter how much you want to or how fine it was before.
Your body needs far more rest and unlike before you can't put that off without causing more severe health symptoms.
DOMS causes more Stress and Inflammation.
If you continue to exercise with DOMS , even if you don't have PMR, you cause more muscle soreness and more muscle inflammation.
Eventually your body starts to be overwhelmed and acts with shock.
And, if you also have PMR, this increased Stress and Inflammation will trigger a flare, you can even get an injury.
The dose you were taking was enough to get the inflammation of newly diagnosed PMR under control as long as you pace your activity and don't increase the inflammation from over exertion.
It wasn't enough to control additional inflammation by over using muscles which have already been put under too much Stress.
We all make these mistakes early on.
It's hard to accept going at a more sensible pace if you've always been a Doer but accept it you must.
You may want to live life at the speed you did before or think you should do this , or need to clean that , because that's what you've always done and you feel ok because your pain has gone on the steroids . But you can't.
If you do , you will spend the next year Yoyoing back and forth between steroids doses to treat the inflammation not pacing your activity will cause , and between activity days and then can't get off the sofa and I want to die days.
You need to be honest with yourself as well as others.
You might think you've slowed down but you probably haven't slowed down as much as your body needs you to.
And you definitely can't keep going at the old speed on holiday , doing housework , at work or at family events because your body does not recover in the same way you used to rely on.
You need to create a " New Normal".
That doesn't mean that You aren't the same brave , strong , beautiful, resilient You that you have always been , it just means what you do changes.
You need to take more rest breaks between and during activities, listen to your body , ask for more help and delegate more domestic and physical tasks, accept that you might need to stop or cancel a plan if you've done too much or you feel sore.
When you accept this your control over your PMR will be better , your path towards tapering can begin properly, you will recover more smoothly and hopefully reduce the time you have to give house room to the PMR.
You could try paracetamol for the DOMS as well as the steroids for the PMR .
Drinking the recommended water and eating a light diet with less sugar over the next few days will help the inflammation as well.
It will help if you rest in Day 1 but add in a few minutes of stretching or a little potter ( not cleaning) in the house to stop stiffening up from Day 2. Do the same on Day 3 but sit there and plan how you are going to pace yourself from now on. Plan your diet , get used to planning your diary so you are not doing too many days of activity in a row.
Learn to say , No , or ask if times or dates can be changed so you can attend something to make sure you haven't got too much on at once, Believe it or not , your real friends and loved ones will be happy to do this if you explain what PMR does to you and they understand and want to help.
Tell your loved ones how it is and delegate certain tasks that you don't " have" to do yourself ( that's often 50% of what you do domestically) and ask you loved ones to help you pace yourself by telling you to slow down when you won't stop.
When you get to day 4 , slowly build up what you do again because you will be returning to a lower steroids dose again.
Make sure you take it slower on the days before a taper and first week after as your body needs to get used to each new dose.
But you do need to slow down before you go POP!
Sorry you feel so rough , and sorry for the Mumsy talking to , but I know I needed to hear it when I got unwell and I hope it will save you a lot more pain in the future, you will get there , hugs , Bee
PS : Tip for the next holiday get hubby to make the meals , pack up and clean the van.
Thank you so much for this post Bee, it could be written for myself. I have a lot of thinking to do. I have been wondering how best to explain PMR to my family in a short message that they can understand. I realise this illness is part of my life for the foreseeable future and I need to get it in perspective. Thanks again x
Happy to help.I found just being simple , kind , positive and matter of fact worked.
I struggled with other illnesses and pacing for years before I finally did this.
I discovered I'd put myself through more hell than I needed to , everyone I really cared for reacted kindly and wanted to help ( in fact they also opened up by saying they had been worrying I did too much and about how unwell I was but they hadn't said anything because they didn't want to upset me ).
Everyone relaxed more and became less stressed.
There was the odd sharp word but that came from loved ones whom just felt upset that they hadn't helped before , it was a a quick but if guilt talking because they loved me.
Within weeks I had a more balanced life and things were still being done ( maybe not to my standards but you can't sweat the small stuff and learning not to be a perfectionist is a good lesson to learn).
Fairweather friends drifted off, but that was a good thing too, the last thing we need is friends whom are only there in the good times or if they want something , friendship is meant to be a two way street, not all give.
By working out my weeks removing the things I thought I "should" do or " had to" do ( delegating if they really needed doing , and only including the sensible things that I "wanted" to do or " needed" to do reduced my activity by 50% and removed even more Stress. I even found I could fit in doing the odd thing I had always wanted to do but didn't think I had time to do it.
It's easy steps too.
For example , if you like to have Sunday lunch at your house, and your family does too, you can do it but you share the load.
Don't think you have to clean the house from top to bottom before they come.
Get others to prepare vegetables etc.
Sit when you can to prepare.
Prepare as much as you can in little jobs in the days before.
Get help getting stuff out of the oven .setting the table, sorting the drinks.
Just do what makes the meal "made by you".
Buy a dessert , get someone else to make one , make one that can be made the day before or frozen.
Get them to clean up and wash the dishes while you have a cuppa or get to join in on some board games for a change.
Don't feel bits of mess must be cleaned as soon as they leave , tidying can wait until the following day or train them to pick up their own mess!
This is soooo good, thank you. I am my mother's daughter sadly. She has been gone 20 years but I still hear her voice and her reprimands despite counselling therapy. If this illness teaches me a new way of being then it can be a good thing.
Well, that brought tears to my eyes - and a smile at the end!! (hubby does do the cooking btw!!!)
Thanks for taking the time to write such a full response. Tough words, as you say, but I need to hear them. I knew it would be hard for me to accept that I can't do as much, but I didn't realise that I might not be able to do hardly anything for a while!! That's very tough. I've never been able to sit still!!
I did manage a day off yesterday as I felt so lousy (and following PMRPro's advice), and I didn't go far from my comfy chair with my laptop on my knee. I have just sorted out some washing and find I have to sit down again - so yes, learning to listen to my body.
This group is amazing. When I think what little information I had from the Drs when I was diagnosed - there was nothing about pacing yourself, getting tired, doing too much, changing your routines etc etc.
I will certainly try harder (to do nothing!!!) I really want to recover as quickly as possible and I know that means pulling RIGHT back now.
You will see me again! I will need more encouragement as I'm sure I shall slip, but I am getting the message (oops - think I've said that before!!)
I noticed in another reply you were considering starting Yoga.May I suggest that you give your body time to adjust to the new medications and new pace of life before you take on a new form of exercise.
Stick to just having gentle walks , little and often rather than long distances at first. Do some gentle stretching at home each day , again start with just a few repetitions and a few minutes and build it up.
Work within your comfort zone when you exercise.
As my physio always commands , we stop while it still feels like you have energy and it's easy.
If you feel you can do a little more , you do , a little , this way your exercise level expands and is consistent.
After you've got into a pattern you could consider new classes.
You do need to be careful about which type of Yoga class to choose.
Yoga may feel great for a healthy friend whom does it all the time but certain types aren't as relaxing or easy as the photos imply.
Research yoga classes in your area that are recommended for people with arthritis or other joint conditions.
Choose Yoga classes which are more about relaxation and gently held poses.
When you start any new exercise class make sure it has a teacher whom understands your health needs, is used to instructing classes for people with health needs, and instructs you when to stop or how to adjust the position for your needs,
Don't do the full class at first , try a taster , then try shorter classes.
Hydrate well before during and after any exercise.
Make sure you gently warm up and cool down the body.
Other exercise options that can help exercise your muscle with less pressure in the joints include local classes that may be available through the NHS Exercise Referral Scheme .
Low impact pilates
Walking with Nordic poles.
Swimming and Gentle Aqua exercises and Aqua walking.
Isometric exercises and stretching with or without resistance bands
Chair exercise classes
Recumbent exercise bike
Dancing to your favourite music whilst singing into your hairbrush
Playing with your grandchildren or pet
Non competitive Table tennis ( when you feel much better!)
Any gently physical activities you really enjoy in little amounts .
I think I'm going to have to copy and paste your replies and do a print out to put on a wall somewhere!!! It is so useful. No-one has spelt out exactly what is "gentle" / how far to walk to start with etc. THANK YOU
I have done yoga on and off for many years, and have been to a local class that was set up as a trial by a new teacher. She was encouraging anyone to give it go but it was starting at the very beginning and building up the moves. Most of the participants are older folk, actually less supple than I have always been. I have already spoken to the teacher and she knows about my diagnosis but gave no indication of having any particular knowledge or experience of it. However, she is more than happy for us to do what we can and even leave the class part way through if we've had enough. My problem is, if I start something, I like to finish it!!! I will probably not go this week as I think you are right, that I really need to give my body a rest and let it try to recover from all the abuse I have (inadvertently) subjected it to. PMRPro also advised "don't exercise already hurting muscles, they need to rest".
You will slip, everyone does, but over time you learn to stop and smell the roses and while you can't do what you did before, there are other ways of doing many things. Doctors think that once you are on pred, everything is hunkydory, "pred makes everyone feel better" they insist. Well, no, not always it doesn't and it is a different sort of "better", not least the wings you THINK you have, but which don't actually fly,
Thank you! It's hard being realistic but I will get there. Since retirement I have wanted to concentrate on my crafts, but have just been too busy doing other things - the garden, the community stuff, the walking etc. So I'm telling myself that this is an opportunity to spend time on the quieter activities that I also want to do. I am trying to be positive but I'm also quite tearful at this enforced change - I don't feel old enough - yet I know there people younger than me dealing with it, and I also know I'm lucky to have had so many healthy years so far. I am generally a positive person, just had a bit of a knock over this, but I will bounce back - especially with all the support from the lovely people here.
I was still 51 when PMR started, nearly 57 when I got pred, grudgingly by a rheumy and less grudgingly by a different GP. We retired here to walk in the mountains and ski. I skied but the walking didn't happen. It is horrible, we all know that. But PMR isn't life-threatening and far less horrid than something like Parkinson's or MS, to pluck 2 conditions out of the ether. Our brains still work fairly normally and the brain fog WILL improve, mine was worse with "just" PMR and improved on pred, It had to, I was still working!
Yes, I am aware that there are much worse illnesses out there (affecting some of my friends too) and for that I am thankful, I can assure you. It just feels that this is a safe place to unload the fears and moans whilst coming to terms with the enforced changes in lifestyle. I will get there, and I'm really grateful for everyone's input here. Onward and upward!!!
I don't imagine for one moment you aren't but sometimes we feel very hard done by with PMR when really it is not too bad at all and then become so immersed in our woes we don't get the right balance. This is a safe place to unload - but you will almost always get at least one of us reminding you it isn't all doom and gloom.
The aching muscles you develop after overdoing physical activity even though it felt OK while you were doing the activity - you feel it next day or even 2 days later, hence the Delayed Onset part.
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Reducing pred from 20mg
When should I start to reduce pred
After 3 Weeks at 40mg
Increase
20mg pred
