diagnosed at beginning of July ,on Prednisolone can anyone point me in the direction of info about what I can expect living with this day to day,I know we are all different, so some things will fit and others not.I just want an idea so I know what's PMR related and what's just age. (.61) . I'm not getting more than our hours sleep a night if I'm lucky, tired through the day,. ..often cheat and have a snooze..... I'm off work as a carer due to social anxiety ( where that came from is anyone's guess) I feel very tearful, and have lost interest and get up and go in things I liked to do.having to pace myself with house work,walking as I'm not up to much of i try to do a lot in one day. I was never like this. Is love to give up work . Though can't afford to.my pills are doing ok but find that 10 mg pred. Runs out after 6 pm.Are cocodomol
Sorry to waffle on.
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Purplecheeks
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Do go and have a read of some of the posts in FAQs which contain more than most doctors have forgotten about living with PMR! DorsetLady has an introductory post she will link for you.
In brief - cocodamol with do next to nothing except probably make you constipated.
Did you start on 10mg or higher and reduced already? If you were only diagnosed in July I suspect you have been told to reduce far too quickly - you won't get through the day on a lower dose until the accumulated inflammation has been cleared out.
It isn't cheating to have a sleep in the day - especially if you are working. It is unusual to have that much difficult sleeping at 10mg but pred doesn't help and some people are more sensitive than others. Sleep when you can! If you really are sleeping that little - speak to the doctor.
Difficult to say what is just age - at this stage of PMR anything you didn't have 2 or 3 months ago is probably PMR but the best differentiator is starting on an adequate dose (at least 15mg) and staying there for at least 3 weeks until the aches and pains have resolved as much as they are going to and are stable. That level of pain relief is what you should expect as you taper the dose, you shouldn't feel worse after dropping the dose than you did before. Doctors seem to have decided that less and less pred is better - no it isn't, poorly managed PMR at this stage seems to set you up for a harder time later and doctors really aren't doing their patients any favours by forcing them to reduce too quickly. You will just flare and be back where you started and it could well be harder next time round.
Once you have had a good browse - come back and ask more specific questions. With something as general as you asked some of us could write all day - which is why FAQs was compiled so we don't repeat ourselves. But ask a specific question - and you will always get an answer
You've been given some excellent advice already regarding the host of useful and reliable information to be found in the FAQ's section.
Do read as much as you can as the more knowledge you gather and the better informed you become, the easier and more manageable you'll find things. You'll also be able to make better informed decisions about any treatment options offered and the varying different meds you may encounter.
I was diagnosed May 2019, and if you read my profile, it may help you to understand a few of the issues that many of us encounter and show that you're certainly not alone in the way you're feeling right now.
- It's scary because of the uncertainty of what the future will look like.
- Anxiety and worry can ultimately make our situation initially feel hopeless and insurmountable and this in turn may bring about feelings of depression and sadness.
I promise you that everything you're experiencing right now has been experienced by the majority of the people on this forum, so you're not alone in that respect.
I can't make your circumstances change, but I can tell you that you will be ok.
Living with PMR is definitely challenging at times, but the thought of living with it is often more disconcerting than actually living with it.
There is much you can do to help yourself through this process and make life enjoyable again, but you do have to alter your mindset.
This means accepting your life is going to have to change for a little while, including your 'expectations' for yourself.
You will need to rest regularly and this may involve changes with your work or even giving up work.
You will need to pace yourself as you won't be able to carry on as normal.
You will need to learn to say "No"!
As grim as this all may seem, there's still much joy and fun to be found by adapting what we do and how we do it. Life has to be 'tweaked' but it doesn't stop! We just have to adjust to a new normal for a little while.
I felt very much like you at the beginning, but now, I'm just so grateful that I'm not suffering with something far worse.
PMR has definitely 'taken' some aspects of my life away from me but it has actually also 'given' me new joys and experiences too.
As I said, educate yourself (and your family & friends!) as much as possible about your condition and the medication and you'll gradually feel more in control again and more able to manage your own set of circumstances.
Welcome to the place none of us ever thought we would find ourselves here.
Please will you follow this link thread, it gives you information how to complete your profile, once done it helps us to answer question you may have. You can click on anyone's avatar and read their profile.
Steroids are the only thing that really works for PMR. If other painkillers work they are usually helping something other than the PMR. PMR is life changing and you need to learn to respect it or it will turn round and bite you. I found I had to learn to say no to people. Start to pamper yourself, do things that you have not done before. Don’t push yourself. Lie back and smell the roses.
Hi. I too was diagnosed recently....in June. I will be 61 this year. Luckily for me, I had discover this forum before the diagnosis, so was able to ask questions and challenge my GP 's prescribed starting dose of pred. I did start on 15mg and then increased them to 20mg, as I didn't think 15mg was quite getting on top of the inflammation. All my knowledge has come from here, so like others have said, please take the time to read up as much as you can. I am fortunate in that I work part time from home and the charity I work for is very good and will do the best they can to ease my way. And to be honest I've decided I'm not going to be a martyr to work. I know it may not be possible for everyone, but I take breaks when I need to....we have a great flexi time policy so that is invaluable at present. Talk to your employers...they do have a legal obligation to assist you where possible.Like you, I find I sleep very poorly...maybe between 1am and 4am....I'm just going with it and when I nod off in the afternoon, so be it! I've very quickly dismissed the words 'should do' from my life. So housework has been pretty much abandoned and the energy I have is spent, as much as possible , in doing things I enjoy. As an example, I haven't changed my duvet cover this week...just turned the whole thing over, so it's a longer spell between washes!
I was very active less than 2 months ago...walking, running, cycling etc. Thanks to advice and necessity, that has stopped, but I am optimistic I'll get back to it at some point.
I'm focussing on positives and remind myself that I could have been diagnosed with something much more sinister.
I am also quite enjoying learning about a condition I'd not heard of....but then I am funny like that😊.
I had a 'sod it' moment last week and booked a holiday for next year. Not my usual thing, but an escorted tour with only a moderate amount (it says) of walking. I would normally look for a holiday to include walking and hills, but needs must.
I am pro actively building in small treats to myself ...helps to give a little lift in the day and even thinking about those sort of things have already helped me keep positive.
But the single biggest help for me has been finding this forum, so you too, have made an excellent start.
Sorry if I've been waffling on!
All the very best with your 'journey' and this community is a great source of support
I am no expert.....only been in this situation myself for 2 months, but 10mg pred seems low. You may be getting side effects but no benefits.! The worst combo! I didn't have the miraculous instant relief that others describe, but my pain and stiffness started improving more significantly after about 10 days on 15mg. But I chose to go up to 20mg for 10 days, which did make a difference. I have reduced to 17mg now and it's going ok. As has been said though, I have reduced my activity too. This has been/is hardf for me. I'm wary of putting on weight, losing muscle etc, but once I'm stabilized, I shall build different activity back in to my life. I have reduced my carb intake, after reading up here. Can't tell yet whether that will make a difference as 2 months on pred is not yet longterm...I'm just pre-empting what I can. It is difficult, but before diagnosis, i had wondered whether my aches, loss of mobility were the result of reaching 60! I was a bit low about that as I've always been pretty healthy and active. Now at least, I'm feeling that if I'm lucky, I'll be able to regain much of my former health once this illness sorts itself. Always an upside!
I agree with all the other comments. I was diagnosed last December and was In shock as I hadn't even heard of PMR. A few months on and I am adapting to my new lifestyle, and when I feel down I tell myself that I am fortunate to have a condition where all I have to do is take pills and rest a lot. Of course this might be easier for me as I'm 76 now. This forum has been so helpful in so many ways. I read it every day. Wishing you all the best.
Sorry to hear you are so down. Follow the excellent advice on here and you’ll manage fine. Read the FAQs and ask questions. You do have to adjust your lifestyle but it’s not forever. Put yourself first and take each day at a time. One of the first things I’d do is try get more sleep, maybe nytol or other methods but that will help. Good luck. X
Good morning Purplecheeks. Your bio doesn’t give us much information on your needs. Could you tell me where you are from? What dose did they start you on of prednisone? Did it give you relief of your pain? I suspect that your pain is waking you in the night. It did for me and then high doses of prednisone (80mg) to start messed with my sleep. Thanks for answering any questions so we can be of more help to you.I had to go to Mayo Clinic to get my first rheumatologist to stop pushing me to taper to fast which caused my flares.
Glad you have joined us. It’s been a great help to me.
You probably don't need my addition as well as the comments from others but it seems to be common for 'very active people' to get PMR and it does require some re-thinking, which is hard if being active has been one of your signature traits which often gains admiration from others (frequent comment to me 'I don't know how you manage to fit so much in') and also my instinct to help t solve other people's problems. I have had to modify that a bit and be more prepared to let others take over, or just do less. Sometimes I have felt very demotivated (not typical of me) but then I seem to bounce back. I would love to know more about how hormones and PMR interact as sometimes it feels a bit cyclical even though I went through menopause years ago. I have had PMR for two years and it took a while to get down from 15 to 10mg so I suspect, like others, that is your problem. The feelings you describe all sound typical of PMR. Really, it is a case of listening to your body and getting a feel for the condition and how it affects you, and taking the physical side of things easy. Good luck!
Hi Purplecheeks and welcome. I have PMR and was diagnosed almost 2 years ago. I started at 20mg and I am currently tapering from 12.5mg to 11mg. Not sure this is working yet and I have definitely experienced the disappointment in myself as many others on hear have. You really do need to take this seriously and rest whenever you feel the need. It is in no way cheating to rest. It would be cheating on yourself if you didn't. You need to stop beating yourself up. As PMRpro asked me; if you were sick with the flu would you still push yourself so hard? I have also experienced the weight gain and I was on a KETO diet when I was diagnosed so I guess diet doesn't really make that much difference for me. I agree with jinasc that you need to complete your profile. I read your first post from a month ago and am a bit confused. You posted that you have GCA and ONE? I know what GCA is but have never heard of ONE and I tried to look it up but was unsuccessful. You also posted that you were started on 40mg and it sounds like you were told to start tapering after only a week! Now you are down to 10mg from a month ago! If this is the case, no wonder you are having such a difficult time. Please can you clarify what you have and the dose you were started on? I worry for you being on such a low dose so quickly with GCA! This forum has such wonderful warm people, you are not alone and never feel you are asking too many questions.
Agreed! I'm no expert and don't have GCA but from everything that I've read on hear from others that do, I think Purplecheeks should be talking to her Dr asap! PC I'm wondering if the 40mg gave you any relief?
Lots of great suggestions shared by forum members already.
What certainly helped me in the early days after diagnosis was having the proper starting dose of pred (for me 20mg). This addressed the inflammation that had built up for over 5 months of symptoms pre-diagnosis. I stayed on that dose for 4 weeks before starting to taper. Not only did it provide relief from the pain/stiffness, but it gave me a feeling of hope for the future.
Getting to a place of acceptance took awhile longer, but learning to adjust to the uncertainty and immobility that came with PMR lowered my anxiety. My moods were up and down at higher doses of pred, but that improved as I tapered my dose down.
You are in the early stages but so glad you found this forum. Things do get better over time (for me anyways), especially when your condition can be “managed”.
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HOW CAN THINGS BE SO DIFFERENT FROM ONE DAY TO THE NEXT!
Hard to watch this at times!
Am I supposed to feel this "crappy?"
