PMR and Fatigue
Posted , 11 users are following.
Good Morning! I'm wondering about fatigue and PMR/GCA I know that before diagnoses and prednisone, I was experiencing severe fatigue. That has gotten somewhat better (although I think pred just has me revved up a little - I'm on 40 mg). As I'm learning about all this and how to manage it, I'm thinking that managing my energy and strength level, my fatigue, is key to managing pain.
My job is very active. I'm an office manager for an early childhood center, and pre-PMR walked about 7 - 9 miles a day at work, at a brisk pace. Plus lifting, carrying, etc. Plus some sitting at computer and LOTS of up and down, up and down. Our owner and director have been very accomodating, and I'm trying to slow down, and cut back on my trips up and down our hallways. I need to work, but, whew! I'm leaving it all at work, and just crash when I get home.
Am I right that fatigue is a symptom of PMR? And that it will continue? It does seem that when I overdo it, I end up in pain. And really just weak. It's like I can't hold my body upright and just need to lay down.
0 likes, 23 replies
dan38655 marthatidbit
Posted
This really gives much restorative effect to my energy level, particularly after strenuous activities, without setting off the sort of stiffness that creeps in during nighttime sleep hours.
Taking a late-afternoon nap in particular, I can usually delay my 6pm dosage by several hours, allowing me to take my full pred dosage closer to bedtime for maximum effect heading into the morning. Note however that I am already at a very low dosage which isn't at all disturbing to my sleep.
When it comes to exercise, I advise to very carefully keep track of the response to varying levels and types of exercise, tending to do what is best tolerated without resultant soreness or debilitating fatigue. Properly managed, exercise can really help sleep patterns and improve ranges of motion under load. I very slowly worked up to being able to do pull-ups, over a period of two months, and this has greatly improved the usefulness of my arms in day-to-day activities.
marthatidbit
Posted
Right now, I seem to have a 2 day limit on energy, and so have adjusted my schedule to a half day on Wednesdays. I'm off by 10:00 am, and having a rest day in the middle of the week seems to be helpful.
Dan and Eileen, thank you so much for all of your very kowledgeable information. This whole diagnosis process is definitely a journey, and I've finally been referred to a rheumatologist. I will see her next week, and hopefully have a better idea about whether this is the correct current dosage for me, and what the next steps are. I like a plan. Knowing what might come next, helps me deal with what's happening now. Just like the 'First, Then' visual schedules we use with preschoolers in Early Childhood Education! "First we put our jackets on. Then we line up. Then we go outside."
I'm just a 3 year old inside! Knowing the plan will help me accept where I'm at now, and honor what I can and can't do, and know that that will evolve and change.
So thank you for your encouragement and suggestions!
FlipDover_Aust marthatidbit
Posted
Exercise? Forget it.
Everyone exeriences this differently, so take what you need from here and you will find your own path.
As for the high dose of pred - I was started on 50mg for a week, 25mg for a week and down to 20mg the week after as my Dr likes to hit it fast and hard, which is different to most other people's experience on here.
dan38655 FlipDover_Aust
Posted
It's fine to spend ten minutes or so at a time sitting, and it's wonderful to take an hour-long nap laying down, but chair time seems to be the most symptom-generating activity short of eating heavy foods.
That is my experience at least, and I now wish that I picked up on this earlier on.
I can also recommend having a pull-up bar handy, so that you can frequently grasp the bar above your head and gently tug on it for some period of time every hour or so. I alternate between bearing most of my weight on my left and right legs while doing this. I discovered later on that this helped get my shoulders functioning more normally, while providing some slight "exercise and mobility" benefit. It also seemed to free up my abdominal musculo-skeletal apparatus to some degree.
I hope that you have got below 10mg by this time. I think that I was needing all of 6mg when 17 months had passed, but for reference I am quite on the light side of average.
EileenH dan38655
Posted
Absolutely Dan - and that must be emphasised. When I had a major flare 4 years ago, in the early days I was exhausted just standing, never mind walking around. Many people can't reach up to get a mug out of the cupboard - never mind get at a pull-up bar. I could get my arms to shoulder level but very little further. I still can't carry a shopping bag with my hands - I can sling it over a shoulder, but even now I get sore biceps with lifting and carrying more than a couple of kilos briefly, never mind any more.
In the past I have been told off on the forums for "boasting at what you can do" because I said I could now walk around the village - that's a 30 min stroll. We may not post to show off about what we can do - but there will always be someone who sees a post and feels they have failed because they cannot do what someone else on the forum can.
dan38655 EileenH
Posted
As a starting point, a "bar" or other grasping fixture need not be at any particular height when starting out, but can be raised gradually going forward toward an upward reach.
Also, of particular note, I was pleased to discover that my immediate range of motion aboutmy shoulders could be greatly increased to the extent that I moved VERY slowly, perhaps taking as long as several minutes to reach upward.
I really did go "from 0-60" in a couple of months by very slowly expanding my ranges of motion, and I surmise that there is some sort of mechanism of fluid pressure within my joint tissues (muscles, bursa) which, given time, relieves itself to restore comfortable motion at very low rates of movement.
I'm actually pretty excited to share this discovery, it has greatly changed my outlook on what I can achieve without additional medical intervention in the form of higher dosing.
FlipDover_Aust dan38655
Posted
dan38655 FlipDover_Aust
Posted
You dis say that your doc had you down to 20mg about 16 months ago, which I tok as some indication that your treatment was perhaps further progressed than what may actually be the case.
And I myself was relatively immobilized for many months, even after treatment began. I did force myself to continue getting onto the bike each day, but believe me, it was quite difficult to mount onto the thing.
Let me emphasize again that one's range of motion can be highly dependent on the speed at which one tries to move, but it was only when I began trying motions in an extremely-unnatural sloth-like manner that I discovered that such movement was even possible! The way I saw it, I was wasting a lot of time sitting around, so I broke with my normal maner of trying to "get this or that done" and allowed myself to kill lots of time just tryng to run through my more limited body-motion mechanics of doing things. I'm sure that I nearly wore out the motor of my new, nearly-miniature lightweight vacuum cleaner because I was moving so slowly, but I think I also gained or maintained some coordination and balance through this exercise. Emphasis there on coordinating my movements so as not to aggavate the fierce bursitis that had crept into my shoulders.
Each of us is indeed different, we do what we can.