PMR and Excersize - Experiment in Progress
Posted , 40 users are following.
Hi Everyone!
In search for information about PMR I have come acress this site with lots of information and links. I have learne a lot and in return I would like to contribute about the topic of PMR and excersize....
Background: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15mg/day mid December.
If there is an interest, I would like to post about the progress in recovery, with special attention to excersize. I am seeng specialist every 2 weeks and complete blood work is done to monitor inflamation caused by PMR.
I would like to post what I have done thus far and future progress in (hopefully) sucessful recovery. Please let me know if there is enough interest in the subject.
14 likes, 226 replies
Oregonjohn-UK nick67069
Edited
Hi Nick, long time since I last logged in to Patient - as one who was very active prePMR I can understand the need and frustration to try keeping fit and active.
To set the scene; I was on preds for 2½ years starting at 30mg and finally reached zero in Jan 2017, after a few hiccups, and realising it was not a matter of getting to zero in the quickest possible time (a hard lesson and something doctors don't seem to understand!) I'm now aged 77 and a lot wiser?
I tried to maintain my level of activity but found it extremely difficult, so sought other means of trying to keep as fit as I could in my circumstances at that time. I took up Tai Chi which is very gentle and helped me a great deal, not only physically but mentally as well (important!). I also walked a great deal (some days 15+ miles) and cycled when I could - the walking I found was the best as I could control the amount (speed, distance and resting) to not 'overdo it'. A lot is psychological and not trying to 'push it' to the extreme - PMR is still there active in your body and preds only 'cure' the symptoms. I found first of all - remember we are all different - so what may suit one will not the other person. It gets harder to keep the muscles 'fit' the older you get and exercising 'more' is not always very helpful? To give everyone hope, once you are off preds it takes some time to get back to 'normal' - by that I mean the effects of taking steroids for a long period, and the 'effects' of PMR itself - in my case around 9/10 months - here again, one must be patient and let our bodies not our minds 'control' what we do. I learnt to 'read' my body and not let my mind/brain say 'you can do more' I just don't work! - the body will react!
Keep well and good luck, John
nick67069 Oregonjohn-UK
Posted
Hi John, long time no "see". Glad to hear from you and that you are off pred for more then a year! Congrats!
I am about 2 and 1/2 years into PMR journey and at 3.5->3.0 taper. While I never had flare thus far, I am a bit slow in reducing pred. Taking my time...I am a bit younger and perhaps "lucky" to regain almost 100% of endurance. Next obstacle for me will be to rebuild strength. First tests indicates that there will be pain involve
. But I am very careful to let the body recover between workouts. If the pain goes away in 2 days, then it is "normal" muscle recovery pain. If it does not go away, then I back off for a week or two. You are correct, one has to be careful and not to let mind rule over body, to force us beyond our current ability. Very fine line to walk, up to, but not over.
I hope you drop by sometimes and let us know how you are doing!
Nick
Anhaga Oregonjohn-UK
Posted
Oregonjohn-UK Anhaga
Posted
Anhaga Oregonjohn-UK
Posted
Thank you. I got to 1.5 last year, about this time actually, but flared a bit later and am now back to 2.5. Which I'm happy enough with. Could be worse!
Oregonjohn-UK nick67069
Posted
Going to be slightly controversial here!!
"Patience is a virtue, Possess it if you can, Seldom found in woman, Always found in man.” end of quote!
I await the response!
nick67069
Posted
Greetings Everyone!
I have been lazy and did not update this thread for a long time. Thread got locked and for a while I could not update, but thanks to Alan, now I can.
So where to start? Last May ( 2018) I was at 3mg . I started developing problem with base finger joints while traveling to Europe. By the time I was back in Japan, the problem got worse and I ended up at 9mg since rheumi suspected possible RA, but was not sure. After a month (and symptoms gone), he concluded that it was not RA and told me to taper down....It took me almost a year to get back to the same dose. Isn't PMR fun?
Currently I am at 2mg. I still exercise regularly as before, but not as much. I got busy with building a shed in the back yard . Now back to discussion about exercise...
When I was first time down in my taper to 6mg level, I felt such a surge of energy and was able to do just about any level of activity without any negative impact. In contrast, now at 2mg, my endurance level has dropped ( not increased) and while I can still go for long bike rides or long swims, I have to watch my intensity level carefully. My test time are not as good as they were before at 5-6mg level.
Another phenomena that I noticed is that if I have mild cold, it seems to cause enough cortisol shortage to invoke return of mild PMR symptoms. In the past I used to add few mg to a dose to compensate for it, but now that I am down to 2mg level, I am not adding any and letting body"learn" to kick in and try to make extra cortisol .
I have noticed that my muscle strength has increased. Year ago I had trouble lifting my luggage to the scale at the airport (30Kg). This year , while working on my shed, I was lifting and handling bags of cement, 25Kg each with no problem, which is welcomed change.
All in all, life is slowly going back to old normal.
Anhaga nick67069
Posted
Glad you could get this resurrected. But only people who followed it in the beginning are likely to see it. I still think it would be a good idea to post a link to this thread from a new post which new members will see. There is a depressed person on HU just now, a competitive runner, who feels his life is over because of the diagnosis. I've sent him a link to this thread. But I understand you are also on HU?
nick67069 Anhaga
Posted
I found it and posted in his thread.
MarkPain nick67069
Posted
Hi Nick, I am very interested in your exercise routine/experiment. I am very new here. I was just diagnosed a week ago. I too am very active and I am worried about my future. I am 66 years old and I manage a horse farm for a living and I can barely move in the mornings. I am taking 25 mg right now and it takes at least half the day before I can feel somewhat normal. Then the next day it starts all over again. I want to work out but I'm afraid of what I will feel like the next day. If I will feel worse than I feel now when I get up, I can't even imagine what that would be like. This is my first post on the forum. I know I have a lot to learn. I have to be honest, I'm scared. As if the soreness isn't enough, the weather here has been brutal for the past couple of weeks and there's more on the way. Working outside in the cold and snow has been a real challenge.
Anhaga MarkPain
Posted
You may get a reply from Nick, he's one of the few who still occasionally check in on this forum. Most people have migrated over to PMRGCAuk community on the HealthUnlocked forum, including Nick. Do look for us over at HealthUnlocked. It's a very active site and you'll get a lot more responses.
nick67069 MarkPain
Posted
Sorry for delayed reply. First 30-60 days were very hard for me too. Since each PMR is somewhat different, as we all are different, you have to find out what works for you by experimenting. I can tell you what I did. My life came to halt with PMR, but after 3-4 weeks I started to develop a plan how to recover. I simply took a noticed what limitations are ( in my case was very tight hip and groin area, very weak and muscles in my arms and limited mobility in my shoulders). I decided to start every day with 15min walk and then do stretching of the impacted area to gain range of motion. You have to do it first thing in the morning so that you can function the rest of the day. Slow and gradual increase in activity, often brakes help too. I have gained gradually my strength back and endurance, so that I was beck to normal in a several months and completely recovered as far as physical endurance and strength after first year.
Also, timing of your meds is important. Usual suggestion is to take all of it in the morning, but that was not optimal for me. I have split my dose in half and took one part late at night ( between midnight and 1AM) and the rest in the morning). That in itself made huge difference, because morning stiffness was much better and manageable. Since you are working relatively physically demanding job, you may need to be careful how quickly you reduce the dose. Symptoms should be your guide. Also use "slow taper" - which you can find info about on this site. Reduction above 10mg can be relatively fast, and done in 2.5mg steps, but below 10 can be a challenge. Rule is not to reduce more then 10% of the dose.
Hope that helps. If you have any other specific question, I will try to answer. In a mean time, take it easy and don't worry, life will get back to normal soon, but slowly.
nick67069 Anhaga
Posted
Hi Anhaga, I am locked out from "PMRGCAuk community " because I asked some tough questions on vaccine safety, in particular I expressed concern about long term safety, and inadequate (rushed) testing in particular related to new mRNA technology never used on humans before. Benson thought that my questions will scare people, so my comments are disabled 😃.
Anhaga nick67069
Posted
Oh good grief. Surely all they have to do is ask you not to post about vaccine any more? As it happens it looks like A-Z may turn out to be the questionable one.
gloria0 nick67069
Posted
I am interested in future posts. Especially exercise to help.
nick67069 gloria0
Posted
HI Gloria, I have started this discussion more then 5 years ago. Most of the relevant info is in the first year. As ex- triathlete I was very active before PMR. With careful and gradual increase in length and intensity I was back to pre-PMR conditioning by the end of first year. After that there was not much to write about. I am currently at 1mg dose and back to active life - with is at least 2x bike ride ( 90min each) and 1 swim session usually 2.5Km - 60 min.
If you were active before, I would try the same activity. Keep in mind that moderate endurance sports help with PMR recovery. Just take it easy.