Does anyone else feel isolated and misunderstood?

I predict that this post will accumulate more replies than you imagined could happen. What you will discover is that you have hit a wall where your mind and your body are no longer synched. You look like your old self, so your friends don't see a difference. you think like your old self so you don't understand and you feel like something you never imagined could happen to anyone, much less you. That is how I finally came to terms with PMR. It is a dragon to fight and not well understood even by the medical profession. You need to stay in touch with your Rheumy to find the Goldilocks dosage of prednisone for you then start coming down as your doctor recommends. Hang in there, the road is not straight and clear, but it has been traveled by many. I would suggest you consider an anti-inflammatory diet, if you have an inflammatory problem why would you want to feed that beast - goggle it and see what you think. It was a great help to me. I have been fighting PMR for 6+ years.

I am amazed how many of us were super into physical activities and doing heaps in life just to be stopped dead by pmr! You are definitely not alone and someone here has mentioned keeping a diary- maybe physiotherapist suggested this also and it was incredibly helpful to me- not surprisingly I found that stress impacted my physical state more than anything else, but everyone is different, so keep a record of food, what you can and cannot do etc along with all other stuff that is happening. 15 mg is quite low - I started on 20 and my doctor seemed to think that was a low place to start!

@katenz sorry meant to say MY physio… damn autocorrect!

Hi Sandy. You are certainly not alone in this. I was diagnosed in August this year after checking into the ER here in Germany. I couldn’t even lift my arms to dress myself anymore.. I was seen straight away by a rheumatologist, and after the bloodwork came back, was told that I have PMR. I was started on prednisone 30 mg for the first week 25 mg for the second week 20 mg for the third week and so on . at 15 mg it was only reduced by 1 mg every second week. My pain was gone almost immediately. I think you might have been started off at a too low dosage. In the beginning with the high dosage, there are sleeping problems that you will be able to deal with , rather than the horrific pain! I am now down to 9 mg but now it will be tapered off even much slower and I was told I will carry on taking probably for another year , before I can try and get off it altogether. All the best for you and never give up Hope. there are so many of us all over the world suffering from this illness but I believe the changes are very good to go off medication if you don’t rush it

@alissahe You are correct. I was started on 20 mg and within an hour all pain was gone. I have read that if you don’t get fast relief (maybe a day or two) then you probably don’t have PMR or your dose isn’t strong enough.

Hi Sandy, as you see already you are most definitely not alone in this. It also hit me out of the blue last year when I was at my fittest - the year prior to that I had gone through a significantly stressful time with anxiety and midlife stuff (just turned 50) and was really turning things around for the good. Like you, I questioned if this was what the rest of my years looked like; however, I've been working on trying not to look too far ahead and listening to healing meditations on the Aura app which has actually given me some stress relief, particularly when I listen to them going to sleep. Big hugs to all of you out there 🙂

Sandy, you are not alone. I have never posted here but I’ve read so many comments and have learned so much. You will get through this and I absolutely know what you are going through. our stories sound a bit similar. I have had PMR and GCA for about 3 years. I was on prednisone for 2 years for both I am sure that my rheumatologist saved my eyesight because he asked so many questions and listened. Initially my primary doctor tried to put me on an antidepressant which she said would help with pain. It would take too long to tell my story but I was finally referred to a specialist who knew what it was within 5 min. Last fall my rheumatologist retired. The new doctor had great new ideas. He started me on tocilizumab and helped me taper off of prednisone. I’m doing well. I hope this it goes into remission one day but in the meantime my life is so much better. Please reach out and let us know how you are doing. My advice is trust your specialist and communicate about how you are feeling. Hang in there and I know you will be able to get back to your life before long.

@ceturtle
Thank you! I like your idea of listening to meditation. I think it really helps to calm you.
Hope you are doing well!
I’m just beginning this journey and I feel like it’s going to be a long one so staying calm and keeping my body moving are going to be important .

@elsbeth
From my research less than one half of one percent of people over 50 have PMR. I don’t feel that is “common”.
I live in a good sized city as well and know no one with this diagnosis. Everyone I talk to has no idea what it is.
My mother had it so it is my only link to this condition. She passed away in 1998 after being on prednisone for 15 years.
I, too, am grateful to be able to share experiences of this horrible diagnosis with those who understand its complexities.

Listen to everything said here. We are your support group. No one understands because we still look the same. Sometimes I feel like standing on the table in front of my family and yelling can somebody please help around here because I don't feel good!!!!!
Re weight: My weight was so stationary. I weighed 117 for over 10 years. I started on 15mg and had instant relief. Like someone else mentioned--within 8 hours. So I'd question the rheumatoid arthritis possibility as someone else said OR maybe ask your rheumatologist if a little higher dose might help.
I have been on prednisone for nearly 8 months. I'm down to 4.5 mg. And 105 lbs!!! No one cares!
Seriously. This site has been a godsend for me. Post anything you want. You'll find help.
BTW has anyone else lost wieght????