Newly diagnosed and overwhelmed
Posted , 17 users are following.
hi all, I'm a 67 year old woman and was diagnosed with PMR yesterday. I'm looking for an active forum with people willing to listen and share stories and suggestions how to best cope with this fresh hell that has taken over my life.
here's my story
I was a very active and fit senior going to gym 5 days a week and able to do any physical activity. I spent all day May 12th preparing the house exterior for painting. I was up and down a ladder with scrub brush, pressure washer and bucket of cleaning solution working hard all day as rain was coming the next day. I was tired but not sore. Two days later I woke up in the middle of the night in agony, unable to move. pain was in both knees, hips, shoulders and elbows. since then I haven't been able to get out of bed unaided, unable to dress myself, forget trying to sit on toilet. after many visits to doctors they settled on the polymyalgia rheumatica diagnosis. started on 20 mg prednisone with follow up doctor in one week.
I've read a bit on the web and not thrilled to join the PMR club.
anyone out there have success stories of completely regaining their previous levels of activity?
anyone have suggestions for the speediest recovery possible?
any helpful sources of information?
thanks in advance for any responses? I am feeling overwhelmed and alone struggling to wrap my head around all this
2 likes, 19 replies
Michdonn OregonHazel
Posted
Hi OregonHazel, three years on my PMR journey. I have lead a fairly normal life on prednisone. I constantly over doing it, I am and have an active person. You can still be active, but must learn moderation. I never taper if I have any PMR pain. I taper using DSNS method: https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-53. I found the forum after many months on my PMR, I have received great support, been educated and met great people. Try to stay as active as you can without overdoing it, stay positive and try to smile. Good luck on your PMR journey. 🙂
ptolemy OregonHazel
Posted
Hi OregonHazel, did the pred work its miracle? We need to realise that PMR is an illness and the steroids do not suddenly make you better, they just help the pain. PMR is life changing and you need to take it easy and look after yourself.
OregonHazel
Posted
Michdonn and ptolemy, thank you for such speedy replies.
what amount of pain reduction is reasonable to expect after 1 week 20 mg prednisone assuming I balance rest vs movement appropriately
should I be 100% pain free, or a more gradual recovery.
also, is it common for pain to get worse when immobile such as sitting too long and feeling a bit better after getting out of chair and shuffling my feet across the floor for 15/20 minutes. I cant call it walking yet, my great grand daughter learned to walk 4 days ago and can outpace me
Michdonn OregonHazel
Posted
OregonHazel, l start on 20mg of Prednisone. I started feeling better almost immediately and almost normal after about a month. After rushing my taper down to 7 mg I flared ended up in a wheelchair and had go to 30mg to get relief. I now taper very slowly. Mostly pain free except when I have flare or over do it, which I do from time to time. Now I taper slowly and jump on flare quickly, before the inflammation get too far out of control. Good luck on your, stay active and positive with a smile. 🙂
BettyE OregonHazel
Posted
Well you have come to the right place. We might moan when the Tech. whizzes muck about with the format but in seven years on here I've never had cause to moan about the contributors. Someone will always reply and share their experience. It won't always be what you hope to hear but will always be sympathetic.
I well remember the shock of the pain and how relieved and lucky I felt to get a quick diagnosis. Starting doses of Prednisolone ( Prednisone if you're in USA ) vary. I started on 20 mgs. and got very quick relief from the pain. It seemed miraculous but you mustn't think this is just a case of diagnosis, prescription and cure. That is why this is such a good place to come. We all react in different ways. Some have more and different side effects. Some make steady progress. More encounter hitches along the way but there will always be someone who relates to what is happening to you. Come in frequently and build up your knowledge base and you will begin to feel less alone.
I have had two bouts of PMR but have been in remission now for almost six years. I continue to contribute here in gratitude for all the help I received in the past.
With best wishes and a promise to reply to you when I have anything helpful to say.
Lindalee77 OregonHazel
Posted
i was diagnosed at 63. i like you was very active. i went the prednosone route. i had my ups and downs but after a year and a half i was able to get off the pred. i am back to my normal self. this web site has proved to be the biggest help to me. i was lucky to have a rhumatoligist that listened to me, i pretty much was in charge of my dosage and weaning myself off of it. i cant stress enough how helpful the knowledge on this site is. it will get better and when it does you will have gained a whole new respect for the things you can do. hang in there.
EileenH OregonHazel
Posted
I'm afraid you won't find many here who have had PMR and got off pred - there are plenty of them but they have ridden off into the sunset to live their lives again! Although Betty is here - 2 lots of PMR and back dealing with her large garden!
If you want a really active group, with loads of advice and even recovered PMR and GCA-ers then try the HealthUnlocked PMRGCAuk forum
I'm sorry to disappoint you though - there is no way of speeding up the recovery process. PMR is the boss here, until the underlying autoimmune cause of the vasculitis that causes the symptoms we call PMR or GCA decides it will burn out and go into remission you will need to manage it. That means pred but not at as high as dose as you are starting on. That is the next stage.
AFter a week you should be looking for about a 70% improvement - it may be better but few people achieve 100% freedom from pain immediately and some never do. I;d say I an free of pain - but I won;t compromise on my dose of pred. I take what I need.
OregonHazel
Posted
thank you all for the replies,
I find I meet challenges best by doing thorough research and learning from the experiences of others, and this forum contains lots of knowledge from those who have experienced and learned how to cope with PMR. I'm currently browsing old posts and links and finding good answers to the swarm of questions buzzing around in my brain.
in half a day I've gone from overwhelmed to hopeful and am so grateful to everyone who has ever posted here.
Blessings,
Hazel
celia14153 OregonHazel
Posted
Hi Hazel, I was over a week on a dosage of 25mgs before I got huge relief from the claggy arm, neck and shoulder pain, let alone the wincy groin and calf ache. I was hugely grateful to Pred for relieving so much of the pain that made life a misery and was making me dread walking into town. So it's a mixed bag for you to adjust to but thank goodness for Pred to bring the relief it does. I was diagnosed in June 2017 and have tapered down to 10mgs taking plenty of time. Good luck! You are not on your own..:)
OregonHazel celia14153
Posted
thank you Celia. I guess everyone reacts differently so I'll relax and wait for the prednisone to do it's good work. We really are blessed to have access to modern medicine; there are some people not so fortunate.
bob03667 OregonHazel
Posted
Good news for you. First, this is a wonderful sharing group and I'm so glad I found it early on.
Secondly, I'm just completing my first year of PMR. I'm a 72 - going on 73 year old male. At its worst, I went from speed walking 3-5 miles 14 minute/mile to where I had to hold a coffee cup with two hands to get it up to my lips. I looked like a 95 year old man when I would get out of a car and try to start walking and the pain of putting on a seat belt was almost too much. Yes, and putting on socks and shoes, forget it.
So, I started going to physical therapy 2 days a week and it was getting better after several weeks. Then I made a discovery. We have a hot tub and because I'm an early riser, I started getting in that between 4:30 and 5:00 am. I now do about 45 minutes of exercises that I actually modified from the physical therapy exercises. Then I use TENS for 20 minutes which you can buy inexpensively online.
I started at 20 mg of prednisone and am now am down to 7 mg, decreasing 1 mg/month. I'm back to playing golf 2-3 times a week and am hitting the ball as far as I ever did. I walk our dogs 2-4 miles with no pain.
The only residual I have now is some stiffness during the night and stiffness in the morning before I do my exercises.
OregonHazel bob03667
Posted
bob03667,
Good news indeed, my 3 dogs were pleased to hear they will soon be resuming their walks.
we aren't blessed with a hot tub but I have discovered a hot shower immediately upon rising does wonders to reduce pain. My chiropractor father-in-law suggested doing range of motion exercises in the shower and that helps too.
I'm curious. Did you start out with stretches then move on to strengthening exercise? My doctor discouraged any physical therapy at our first PMR discussion but I am the type of person that needs to track my improvement with data. I am beginning to work up my own therapy plan and present it to him next week so any ideas are welcome.
Anhaga OregonHazel
Posted
Really, as the others have said, you do what you can do, what's best for you. After the pred miracle I was able to start taking long daily walks and to resume the large number of yoga and physio exercises I had been doing before a year of undiagnosed, untreated PMR eventually froze me. I've since added to and modified the exercises, taken up Nordic walking and sometimes remember to wear my weighted vest (in the interests of preventing osteoporosis). I also had a fairly uneventful slow taper from 15 mg start to 3 mg within the first year, but in the following three years I've been more or less stuck at about 2 mg.
You are discouraged from overdoing exercise, but never discouraged from doing what you can, what is right for you, and gradually building up closer to what you are accustomed to. Very active people are tempted to overdo it I think, but they soon learn their new (probably temporary) limits!
If you run into difficulties a good physiotherapist can be invaluable. Mine certainly encourages exercises which maintain range of motion.
And you have a great grandchild! Lovely!
OregonHazel Anhaga
Posted
hi Anhaga,
I hadn't considered the prospect of osteoporosis. Prednisone can also cause bone damage? I have a long and growing list of discussion topics for my doctor visit next week.
thank you for the weighted vest idea, I didn't know they existed. I found them online priced within my budget and ordered one for when I'm able to walk without so much pain. I live quite rural with hiking trails all around where I enjoy walking so the vest is right up my alley!
Bob shared some water exercises to alternative with walking and I am excited to put together a daily schedule for regaining strength and endurance.
I am so fortunate to have found such a welcoming group who are walking the PMR path and appreciate each and every one who answered my message. I will keep you all in
my prayers
bob03667 OregonHazel
Posted
OregonHazel,
The exercises I do in our hot tub could be done in a swimming pool. They start out with a 'breast stroke' sitting down. I do that for 2 minutes (120). Then I reverse and do a reverse what looks like a back stroke but with arms back parallel toward the front, not high as in a traditional backstroke.
Then one of the most important exercises to judge how you're improving - and this can be done anywhere sitting down - with your arms bent in a 90 degree angle - starting with them at your side - lift them both back as far as you can behind your head. I do 35 of those going straight back over your head and then another 35 lifting them pointing at a 45 degree angle to each side.
The next one with 3 pound weights, I replicate the machine in the gym where you are holding on to handles (one in each hand) and rotating them forward for 2 minutes (120). Then I reverse that as if I'm pulling toward me in a rotating motion and do that for 90 (had to work up to this).
The other exercises are too hard to explain which have eliminated my hip pain.
As someone already said, we're all different so the idea is to find out what best for you.