Hi everyone, shortly after my PMR subsided an II was easily pain free without any prednisone, I took a terrible fall, EMTs took me to Sarasota Mem. Hosp. The pain was excruciating, I had to take opoids. I was then sent to a rehab for 5 weeks and was discharged Aug. 3, not going to outpatient PT. I use a walker and a wheel chair for now....................... My life has suddenly stopped. My wonderful husband is my caregiver, and I shoud be back to normal in time.l am SLOW.but improving.
Please all of you be very careful, one slip can change your whole life!!! (PS: One I had gotten my PMR under control 2 1/2 yrs. ago, I could function in full, not now!) Thanks for listening to me. Elinor
oh Elijo, what a shame. I am glad you are going to be all right eventually, but it must be so hard right now. Gentle hugs.🤗❤
I'm sooo sorry 2 hear of your terrible news. I am glad however that your home and on the mend! Please be careful and stay well. Sending u cyber hugs!
Soooo sorry to hear of your travails; sounds like quite a nightmare, but glad you are healing well, if slowly..
Also glad that you wrote and reminded all of us about the danger of falling.
Thank you!
Sorry Elijo, what a bummer! Get on the mend quickly. Think positive and try to smile. ☺️
So sorry this happened to you. You beat PMR, you’ll beat this.!!!!
Oh Dear love you, I am so so sorry that you have got to go through this. Thank you so much (in all your pain and discomfort), for posting and letting us know, what can happen. Please please rest and take it easy and let Hubby take care of you. You will rise again to fight another day, so chin up girl and breathe. Bless You.
I am sorry to hear that Elinor. Presumably this makes PMR look a doddle? Get well soon!
Hi, Elinor
So sorry to hear about your fall. Awful how one’s life can change in the blink of an eye.
Sending you hugs and good wishes from the Lakeland PMR club
(that no one wants to join).
Take care!
What a total bummer, Elijo. You are so thoughtful and gracious to share your experience and insights. I too am learning how difficult it is to balance the need to maintain muscle mass for stability with the need to manage muscle pain. And then there’s soft tissue.....I never knew the MSK system was so complex with all its different types of tissue and requirements. Yikes!
But with the support of this platform and the wealth of experience here, we’ll each learn slowly but surely how to not only survive but thrive.
Blessings to you and yr husband.
I sooo agree with you Harrie!! Had no idea about muscle mass, muscle strength, etc. till all this hit! I've never worn so many baggy t-shirts in my life so as to.try and camouflage my torsos! To second your sentiment, thank God for this forum! I learn everday.
My grateful thanks to all of those who responded to my above letter abut the horrible fall I took. I just returned from my 2nd outpatient therapy. Getting in a wheel chair, then getting in the car, then out of wheel chair and into the therapy bldg. is a "trip" in itself. But I did it with a smile (Mitchdom!). Next week are 2 more sessions, plus the exercises my husband helps me with home. On a very pleasant note: My son John from Franklin, NC in the mountains just drove to Boca Raton, FL to pick up his delightful lady friend and they came to visit us yesterday and today. What a joy!!! After he drives her back to Boca Ratan and spends a few days helping her get organized, he's driving back here to Bradenton and spending a few days with us. These things in life can make you soooo happy! My lovely daughter Sharon in Brick, NJ had sent me dresses with zippers up front to make dressing easier, plus so many other things she has done long distance. Family is so important, especially the older we get. Thanks again for you kind uplifting wishes, and always do be careful yourself! One second can change your whole life. PMR at first was crippling, but a few prednisone pills, and viola I could function! Love to all, Elinor
Well good for you girl - there's always a silver lining but I am sure you would rather have not taken a tumble. But look at all the good things that are happening - your son and his lady friend visiting you and then he is coming back to spend a few days with his wee mum and dad of course.
Also your lovely daughter, thinking about what you can wear, knowing that your mobility is limited and sending you dresses with zippers up front. Well now I am sure you are grinning like a cheshire cat. Good for you and a day at a time is a day nearer to getting better. You go girl. Bless :-)
I too have been out of commission from a fall. I slipped and fell getting out of my car on February 6. I broke my left ankle in three places and sprained the right ankle. I had to wair a boot on both feet and was not allowed to put any weight on my left foot for 14 weeks. On May 7 I was told I could walk. It has been a very long and dark time for me. I tried to go to a rehab place like you did but the place I was at was horrible and I told my husband that I wanted to come home. So on my 7th day at the rehab I went home. I had people come to my house to help me with my exercises and showers but I did everything else myself. I figured out ways to cook a few things. But mostly I cooked TV dinners. Luckily I already had a scooter to use. I would not wish that experience on my worst enemy and I'm am sorry that you had to go thru it. I hope your experience was not as difficult as mine was.
I do think my experience was dreadful, however you must have suffered even more, how horrible, and it's probably hard to believe you got through it so far. You must be a very strong person. I actually wanted to die at times. I have a very supportive husband, and a good cook too. One of these days it will be all past you and our minds have a tendency to block some of it out as time goes by. I did not like rehab and while I was there, they shipped me off to the hospital since my sodium and electrolytes were way off and I was sick. That delayed my discharge some, and it's hard to believe I'm out of there. I'm always sooo cold. Please continue getting well, you are through the worst. Hugs, Elinor
Omg! You guys all make me feel like such a whiny, complaining jerk of a person!! Your stories are truly heartwrenching. I'm sooo embarrassed at my seemingly small issues, ie heavy duty sweating, double vision, gross fatigue, depression etc. I deeply apologise and wish all of you well and speedy recoveries! Thank you so much for bearing w/my posts.
So sorry about your fall and hope you are feeling better soon. May I ask you how long it took you to get rid of your PMR pain and how long were you on Prednisone? I love this sight and sharing our information since we know better than anyone what we go through with PMR and the massive weight gain & all the other symptoms of the Prednison . I want to see that it didn't take someone 5.9 years to go into remission. I have been thin my entire life so to get obese at 63 yet eat like a bird is not only shocking to me but everyone I know. The look on their faces is so depressing but on the bright side & am grateful I am no longer screaming in pain and so crippled that I was going to end up in a wheelchair.
Can completely relate to your post. I too, (though not thin) have always been of average weight and been very confident in my appearance. Not so much anymore!😖I've only been dx for a bit over 1 month. Although the prednisone has greatly improved my joint pain, the side effects have been incredibly Awful!! I find myself constantly weighing out which is worse?!! What a journey we're all on. Glad for this forum!
This puts my back pain in to insignificance. I am so sorry you are having to cope with so much. I hope you recover well. Because I am feeling so much better I had forgotten how weak my muscles are and lifted my m-i-l from a wheelchair to her zimmer. She was unable to weight bear and I spent 2 weeks unable to sleep much because of pain. I was ok-ish on the move. Lesson learnt. I will not be proud but will call for a porter. I guess we all forget we are not do able and do what we automatically did before PMRj. Enjoy having your family and their thoughtfulness. Best wishes.
5.9 years is a MEDIAN figure - there are people who take longer, there are people who take less time.
There is a thread on zero pred:
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
I know one person who got off pred in 2 years and has stayed PMR-free and one with GCA who got off in 2 years - which I think is possibly more common to be honest. Most people I know who have been able to stop pred have taken between 4 and 5 years.
And I will say it again - cutting carbs a lot does help many people avoid weight gain and even lose weight while still taking pred. It is harder at GCA doses but it can be done.