I'm new to this

I started prednisolone 2 weeks ago after a "diagnosis" of PMR following weeks of unbearable pain. Am currently reading Kate Gilbert's brilliant book but feeling really concerned about how long this "recovery" can take. Am struggling with explaining this all to friends and family who think - its a touch of arthritis!!

Best thing done so far is to get a heated car seat - before this I could only drive for 15 minutes before my legs deadened! I've a lot to learn and accept and would love to hear of how others have managed. Thank you

8 Replies

oldestnewest
  • Hello Jude62 Welcome to our group.

    I'm glad you've found Kate's book as it's very informative & good to share with close family & friends. Other people certainly don't understand, so you'll make many new PMR Chums here.

    Don't try & look to far ahead, everyone is different but you'll find plenty of support & advice here.

    Best Wishes & Good Luck 🍀

    Mrs Nails 💅🏼

  • Hi Jude and welcome,

    Know what you mean about the arthritis connection!

    If you can, and it's not easy, you have to stop thinking about how long your recovery will be. PMR and GCA, the bigger and deadlier version, seems to come along out if the blue (to us initially) and unfortunately stays around as long as it want, and then eventually goes away, again if it's own accord.

    It not like most illnesses, it can't be cured as such, but it can be controlled, and that where the Pred comes in. Initially you're given a high enough dose to stop the inflammation that is caused by PMR et al and which causes you pain. You should get at least 70% relief, some get 100% relief. The art then, and it is an art is to start reducing the Pred, but keeping the inflammation under control. If you reduce too quickly, you may go below your optimum level and the pains will come back. The doctors don't always appreciate this, and want you to reduce too quickly. Don't. Only reduce when you feel alright, and not if you know you have a stressful situation coming up.

    You need to do your bit as well, your muscles and stamina are affected by the PMR and the Pred, so you need to build rest time into your day. You cannot continue doing half a dozen things at once, you have to learn to pace yourself, and take life a little more gently, and definitely slower.

    Life does change, it doesn't mean you have to stop doing what you enjoy, but sometimes it's takes a little more planning than before!

    Sure you will have many more questions as you go along, please ask anything, however trivial it may seem. We've all been there, and know what it's like trying to explain to others who haven't.

  • Hi

    Its early days for you yet

    Just take one day at a time listen to your body look after yourself

    Let others in the family look after themselves

    We are all different and have different experiences of the illness their are good days and bad days .

    My Mum is the worse she means well

    tells me if I did some exercises in the morning I would feel better .I just say yes I need to lead a normal life but not over do it .

    I used to walk to work each day but now get the bus most of the way but do a lot of walking during the day.

    I am on of the lucky ones don't have much pain most days ,stiffness some mornings is worse so hot shower works wonders .

    I sleep when I need to last week one day in bed at 6.30pm woke up 7.00am next morning

    This morning for no real reason struggled to get out of bed due to fatigue at 9.00am usually up at 6.00am .

    Ache and tired but doing little bits then resting could feel fine tomorrow theirs no way of knowing .

    Take Care

    Rose

  • DL and the others have said most of it. However - to put none too fine a point on it: there is no "recovery". This is not a simple illness that you can take a pill for and then it goes away like flu or another infection. This is a chronic illness that will be ongoing for as long as it feels like it. We often say, PMR comes when it likes and it will go when it likes.

    PMR is not the disease - it is the name given to the symptoms of an underlying autoimmune disorder which causes a dose of inflammatory substances to be released in the body every morning. These spread through the body and cause the immune system to attack your body tissues because for some reason it has become unable to recognise your body as "self" so thinks they are not meant to be there, like viruses or bacteria. This leads to cells being damaged and the result is inflammation, pain and stiffness. The pred does nothing to "cure" that, it merely relieves the inflammation, reducing the resulting pain and stiffness so you can have a reasonable quality of life in the meantime. It's a bit like rheumatoid arthritis - except mercifully PMR does not cause irreversible joint damage, it doesn't kill and, unlike many autoimmune disorders such as RA and lupus, for the majority of patients it does burn out and go into remission.

    For about a quarter of patients this will happen in a couple of years and they will be able to stop taking pred - but this group do seem to be at a higher risk of relapse at some later date. About half of patients need up to 4 to 6 years to be able to reduce their pred dose to zero and stop taking it. The other quarter need pred for longer, sometimes at a low dose for life. There is no way of knowing which group you belong to at the beginning, it doesn't appear to depend on age or severity.

    I have had PMR for over 12 years, I have been on pred for over 7. The first 5 years I managed without (not out of choice), it was painful but possible with a lot of adaptations and restrictions. The 7 years on pred have been not too bad apart from a very unpleasant 9 months 4+ years ago but that had other things going on too. PMR doesn't stop me doing things - I still travel without problems. You learn how to accommodate it! Pacing and resting appropriately are key - and knowing your limits. Learn those and be sensible and for the majority of us life isn't too bad. Some people do have bad symptoms - but they really are in the minority.

    The NE of England support group have a booklet and a DVD (I think there are some left) which was made by patients, doctors and other healthcare staff to explain to friends and family how PMR and GCA affect us, it is called "You are not alone". The shop is here:

    pmr-gca-northeast.org.uk/in...

    but have a wander around the site and read the articles and stories.

  • Hi Jude, welcome to the club!

    I too am fairly new to this illness - diagnosed last September, having suffered the painful symptoms since about March 2016. I found Kate Gilbert's book so helpful in getting my head around the condition, and it clued me up to know what questions I should be asking my GP.

    I'm trying not to think too far ahead, worrying about how quickly I can get better - or even if I can really recover. What's important for me is that my days are as good as can be, and my main battle is in forcing myself not to overdo things - or not feeling guilty when I just take things really easy. Nowadays I take a lot of pleasure from achieving just very simple small tasks (which I know I would consider pathetic when measured against what I used to achieve).

    One thing I think has been of major importance for me: acceptance that I have this condition, and not wasting energy trying to find ways round it and the need for prednisolone. That's meant that all my energy can go into managing the pred and trying to reduce sensibly; planning and prioritising what I want or need to do and what I can leave be; and making any diet/lifestyle changes that just might help - or at least not hinder.

    I've been so happy to find this forum - just checking out the various posts gives so many hints about what might be tried, and what might be considered "normal" (huge range, I think you'll agree!)

    Good luck!

  • I used to feel guilty if I sat around, but with PMR I had a built in excuse to take it easy. I was very bad at relaxing but PMR has actually forced me to and I appreciate it. I used to hate waiting for things now I am happy to sit and stare. I tend to chat to people more. I have started to pamper myself feeling that the PMR is a good excuse, I even enjoy a glass of champagne with friends all due to the PMR!

  • Hello Jude62, I associate with all you say. Explaining your diagnoses to some people is a waste of time, there is such a lot, at times, to explain i think people just turn off. I was shocked when my GP said 18 months to 2 years recovery, maybe longer. I did'nt want to accept that. I had a busy lifestyle and felt really down about it. However, I have had to learn quickly having PMR has seen to that. A heated car seat sounds ideal. It's amazing how marvellous discovering items to help us all goes towards mentally and physically feeling better. Good luck with your journey this is an excellent site, loads of people to help us

  • The "maybe" is in the wrong position! "Maybe 12-18 months, probably longer..."

    Sorry to be so cheerful ...

You may also like...