Diagnosed with PMR

Hi Lynda, I too am newly diagnosed and have found this group to be full of great suppport and suggestions. I too am finding not doing as much exercise a real problem both physically and mentally. I have been on 25mg of Pred since Dec and once the majority of my pain went I was keen to get back to the gym. I have found though I do need to listen to what my body is saying and understand that I can't do what I used to do. 

I find I wake really early, anytime from 5.30am and am not able to stay in bed. i'm not sure if this is PMR or worrry about work but it builds to a problem where I am very tired in the evenings. 

I have been really lucky that I have managed to work through but am worried about coming off the pred. Each time I have tried to reduce the pain in my back has come back. I am due to to back to doctors next week and will try getting 2.5mg tablets as a 5mg jump seems to be too much. 

I have not been able to answer any of your questions but just wanted to let you know that I do know how you feel and you will get there in the end. 

Elizabeth

Hello Lynda and welcome, but sorry that you had to find us.

It isn't the Pred which limits movement, but PMR.  PMR muscles are intolerant of repetitive movements which limits the amount you can do at any one time, and I found - as did others - that movements which required a leaning-forward stance were definitely a non-no.  If you try to force such muscles over and above their limit, you will find that they very effectively bite back!   (Think vacuuming or sweeping).  So little but not very often is the key.  The best possible exercise is walking - I must have walked around the world!  Swimming - in a heated pool - is also very good as well.

Every patient is an individual and we all react in different ways to the PMR and to the steroids,so it's a bit of trial and error on each patient's part to work out what is best for them.  You may find that you can build up exercise but it will probably take time and you will need to learn to pace yourself.  Sometimes you will hear 'pacing' and nothing else from us. 

Yes, there are chewable calcium and vit D tabs, most large medical shops will have their own brand available and Adcal is very often prescribed.

I was very lucky and managed to work for 8 years (the last 2 part-time) but I had the most supportive and kind management and colleagues you could wish for.  Be sure that they understand PMR and steroids - it isn't well known and often you will be told how well you look even if you are feeling like something the cat brought in plus plus.

If you have any questions, someone around here will have the answers.

Hi Lynda, I'm new to this group also, but maybe our experiences can help each other.  I was diagnosed with PMR 3 yrs ago and treated with prednisone - starting at 30 mg and tapering to 5 within a 6 mo. period.  Prednisone is a great drug, but the side effects can be killer - for me, sweats, threw my blood sugar way off, and I was never diabetic, high blood pressure, insomnia.  Your body does adjust and ou will feel better soon though.

After 3  symptom free years, I had a PMR flare and a diagnosis of giant cell arteritis.  This required 60 mg. pred daily - I'm down to 50 now on a 5g per week taper.  The GCA symptoms and PMR symptoms have resolved (blood work pending) but again, pred at those doses is hard.  Take heart that you will feel better and go back to your normal routines.  Until you feel better, you need to rest and not push it, it will not help.  I went from 3 spinning classes and strength training twice a week to walking around the block and coming back exhausted.

Please stick with this - you will get better and people go back to full speed all the time.  Good luck and stay in touch.

Most calcium/vit D supplements are chewable, or at least, the ones I've had are.

Disturbed sleep can be either PMR or pred - for some people obviously, both . It iwll get better. If I have night sweats now though it is because I am having a flare and need slightly more pred - we discussed this on another forum recently and there were one or two others who found the same. Strange but true!

I wonder if the low back pain and hip pain may be due to myofascial pain syndrome (the hip pain could also be bursitis). That's what mine is due to and treating the MPS separately works far better. A good sports physio may be able to do manual mobilisation of the trigger points - hard knots of inflamed muscle fibres that can be felt as hard knots, in the low back they are about where the baby's dimples are. Steroid shots into the trigger points get a very fast improvement but you have to find a doctor who will do them.

I found that Pilates (done after an aquaerobics class usually) and Iyehgha yoga kept me upright and in a reasonable state even when I had PMR without pred - I could only do what the pain and stiffness allowed. But core stability improved with Pilates - and it didn't cause too much trouble. Walking and doing the stairs if you can will keep leg muscles in reasonable nick - and as you reduce the pred it will get better. But you have a new normal I'm afraid and you may have to accept not having that wonderful toned body for a while. As Nefret says - it won't be the pred that limits what you do, it will more likely be the PMR. it makes your muscles intolerant of acute exercise and you will have to start at a much lower level and work up again, but more slowly. The muscles do not recover in the same way from training - so very low weights, low reps and long rest pauses are the order of the day at first. 

How do people work? It depends on the job to be honest - I continued to work as a freelance translator - but I didn't even have to go out of the house, not even get properly dressed if I didn't want to. It was the brain fog (from PMR, not pred) that was worst with a "brain" job. My fingers became dyslexic - letters kept coming out the worng way round when typing! But in the past it has been less of a problem, women retired at 60, the usual onset is perceived to be at an older age (average is 72, plenty of us are far younger these days) so most patients were already retired or soon to do so. Totally different matter these days though. However, stress and PMR do not make good bedfellows - and pred will NOT help you ability to deal with stress. That alone may make the adaptation in the workplace that you are entitled to more difficult. 

But I would suggest you sit down and think very hard about working and how to do it at present - because of the sort of job you do. If it is stressful I imagine that also means there is a lot hanging on your decisions and both PMR and the pred don't help decision making and rational thought processes. The last thing you want is your colleagues to resent having to "carry" you. If you can put yourself first you will find living with PMR far easier - and it may be for some considerable time. Doctors will say "2 years" - about a quarter are off pred in 2 years and they are at a higher risk of a relapse. Half take up to 4 to 6 years and a few lucky people like Nefret and me are in the final group - we're on 16+ and 12+ years respectively. I have a good life, PMR doesn't stop me doing a lot but I still wouldn't like to HAVE to go out to work and make decisions every day.

Hi Lynda,

I'm so sorry you feel so bad at the moment, I'm quite new to all this too, but people are really helpful and supportive ere on this site,

I have had about 14 week off work as my reduction of prednisone isn't conducive to working and reducing as I'm on shifts and very sensitive even to 0.5 mg reductionS.

I also had to have a dental op due to my sjograns sinus lift and bone graft, but to let you know I'm 53 also doing a phased return and find the stress is making me worse so not sure what to do.

I'm on phased return ATM arranged a longer one so I could take it slower building up my hours. I am having to take holiday and no pay to sort it as they only provide 4 weeks.

I wish you well with your reductions but take it slow at YOUR pace not the doctors as they are not feeling your pain it's you that feels it!!!!

Take care

Thanks to all for your support and taking time to respond...I can't tell you how much it means.

Netfret....Thankfully walking is something I'm able to manage, some days less and slower than others, but I've read about pacing and will take on board your comments

Maria, sorry to hear of your flare and GCA, you must be gutted.

Adette, hope you manage to sort work out and take it at your own pace. I'm single so only me to pay the bills and mortgage but I could potentially take a few weeks before I go back, something I'll be mulling over the next 2 weeks. After reading a lot on here about dead slow reductions, I think I'll have a battle with my GP, who has already suggested only a year to get off pred! Don't GPs read currently guidelines??

Eileen, I was hoping you would reply! I'm reading over your suggestions and the info...Many thanks.

Re work...I work in a social work team, with increasingly difficult and complex work these days with weekly targets expected to be reached and an ever higher caseload to manage. I was becoming less able to make the most simple decisions...Yes brain fog was very apparent!!..and i felt in a continual state of anxiety and was emotional out of all proportion. On top of the stress I was exhausted and hurting from what I now know is PMR. I will see my manager next week. She is very understanding and I'll print some stuff off about PMR. Yes I need to put myself first and possibly look for a new less stressful job. Lots to think about but I think I need to not rush back

Thanks again everyone....What a great lot of people you are!!

I feel your concern!! I am newly diagnosed as well and I too am reading this forum daily.. I feel there is so much good advice and very nice and caring people...

When my Dr gave me the 2 week trial of Prednisone it work by 4am that night I thought it was a miracle!! Nope just a mask over the pain I found out, but oooooooh soooo happy and can now live life now better ..

Work - I work graveyard with very hard work non stop moving for 8 hours ... my Dr put me on light duty with restrictions but I am worried about pain coming back as I taper off Prednisone.

Exercise- I received a lot of good advice here on this forum, I have been cycling and light weights high rep so far so good although my knee does burn and back of neck as well .

Meds Prednisone- my Gp has lowered my dose to 15 mg and so far no pain just elevated heart rate ..

I know your worried and have so much questions as I do but you are at the right place