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
carolk marthatidbit
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marthatidbit carolk
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iellen32 marthatidbit
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it helped my fatigue.
i would try it.
Anhaga marthatidbit
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dan38655 marthatidbit
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Over the last two years of my prednisone treatment, my tapering dosage has at times been sufficient to powerfully control my pmr skeletal symptoms. This seemed best when I passed through the 10mg range 1-1/2 years ago. This was also when I was not experiencing any noticeable amount of fatigue.
When I got down to about 5mg, I began to have to "extend" my dosage reduction timetable in order to more tolerably manage my pmr symptoms, taking only the minimum amount that I really had to. I spent almost a year at around 5mg per day.
So while I have endured some level of pmr symptoms in order to "force" a lower dosage level, I have also endured the return of a certain level of fatigue, especially during hard exercise. I am currently dosing at a just-tolerable 2mg/day, which I split, so I am taking 1mg at 6pm and 1mg before bedtime, which controls the worst of the symptoms when they would otherwise be at their worst.
I recommend staying as active as possible throughout the day, particularly in the morning, and making fine adjustment to dosage levels and times to control periodic flare-up of the worst (at the time) symptoms.
Symptoms tend to wander about thoughout the body and fluctuate in intensity, so real-time adjustments to dosage can be effective, but with GCA/TA one should probably respect their physician's prescribed minimum dose.
I don't have any GCA symptoms, so took over my own daily dosing "prescription" with real-time adjustments toward the minimum that I can endure. I was able to reduce from 5mg to 3-1/2mg back in November, and from 3-1/2mg to 2mg just last week. Both reductions were greatly facilitated by hours of daily exercise that better weather permitted.
I also declined to begin taking the Plaquenil (hydroxychloroquine sulfate, 400mg/day) that my rheumatologist very recently prescribed.
Good luck with your symptoms!
joymac dan38655
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Thanks, Joy
EileenH joymac
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This is a very old discussion and although I think Dan is still around only a few other current users will see your post - you would be far better starting a new thread which everyone will see.
"13 mg controlled my physical pain, which increases as 13" - doesn't ake sense, at what dose does your pain return?
It really isn't worth tolerating pain to decrease - all you are looking for is the lowest dose that manages the inflammation as well as the starting dose and if the dose isn't enough to do that, the inflammation will just build up like a dripping tap fills a bucket and it will overflow in the form of a flare and you will need more pred to manage things again.
If you reduce in too big steps you also run the risk of something called steroid withdrawal rheumatism which is very similar to PMR pain. It starts as soon as you try the new dose and then usually improves over the following week or two. A PMR flare often takes a bit longer to start but then increases over time.
Have you seen our "reading list"?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
dan38655 joymac
Posted
I have toagree with Eileen, that it isn't worth it to suffer all day in order to be taking less prednisone.
It would be normal though to have some pain here and there at certain times of the day, due to the pred's effects fluctuating and wearing off at certain times of day. That much I will tolerate, but when pain and fatigue start greatly impeding my productivity and quality of life I will increase my dosage slightly to maintain control of symptoms.
My diet favors eating foods with fat and protein before ingesting much carbohydrates like fruit, starches/grains or juices. The fat, protein and soluble fiber in food acts to slow the entry of sugars into the bloodstream and to maintain fat burning via improved glucagon/insulin ratio balance, and this should have a favorable effect on one's systemic inflammatory response. I prefer to start each day with some exercise or vigorous work, which somehow improves my metabolism and reduces inflammatory symptoms thoroughout the day.
You are doing fairly well to be at 13mg already! I would use enough pred to support your being active each and every morning, as "chair time" always tended to bring back my symptoms.
EileenH marthatidbit
Posted
The pred reduces the inflammation that is caused which reduces the pain and stiffness to allow a better quality of life in the meantime while the disease is active - but it doesn't have a great deal effect on the underlying reason and the muscles remain intolerant of acute exercise - they can't tell you that you are doing too much and take far longer to recover than they would normally - and are easily fatigued. The Holy Grail of PMR/GCA will be to find a drug that DOES change that underlying immune process - not available yet though it could possibly be on the horizon, at a price: $17,000/year!
What probably happens in PMR is that the tiny blood vessels that supply the muscles with oxygen and nutrients become inflamed - so narrower and the supply route gets clogged up. After exercise the waste products aren't removed as quickly and efficiently - and you get sore muscles as a result, as if you had done some really strenuous exercise. As far as your muscles were concerned it was.
Dan speaks about using exercise to help - that is a very individual thing and tends to be something that people who did athletics or similar prior to PMR and who were well trained can do - their muscles are at a better starting point, and that particularly applies to men. Certainly, getting your blood vessels dilated will help the blood flow - some people manage that by using an electric blanket in the morning before getting out of bed, stretching gently in a warm shower, gentle exercise and building up what they can do. But some people can't manage even that - so you have to work out for yourself what your own limits are. Then try to build that up slowly and gently - but no exercising to exhaustion (which some physiotherapists who don't know about PMR may try to get you to do). Just because one person with PMR can do something does NOT mean someone else can. Don't ever measure yourself against anyone else.
Since you are on 40mg I'm assuming you have suspected GCA - because it is too high a starting dose for PMR. The recommended maximum starting dose is 25mg, in exceptional circumstances 30mg and really not higher - it can mask other things and confuse the issue.
GCA is a potentially very serious illness - and really, having some time off to rest will help a lot in the early days. There are people with GCA on the forums who still work - but they often struggle and it is unfair to your body, which isn't well and needs some rest to recover. The same applies if you have "just" PMR - though it is sometimes more difficult to fit into normal life than GCA because of the physical effects. Many of us find even having ordinary visitors is too much, children around is really stressful - and the thought to having loads of them under feet just makes me fell weak at the knees - even if the PMR wasn't already there!
Google "The spoon theory" by Christina Miseriando for an allegory of living with any autoimmune disorder. By the time you have finished your day's work you have used up all your spoons - none left for you to feed yourself...
sheila28713 EileenH
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This is my third attempt at a reply - the last two are somewhere in cyberspace!
I found your post SO helpful. Your description of the physiology of PMR was just excellent and I'm sure we can all relate to it! Yesterday after a walk, I was commenting to my daughter about how I just need to sit and do nothing for awhile to rejuvenate from the fatigue and muscle soreness.
A friend sent me "Spoon Theory" just this past week and I had never heard of it before. It is a perfect metaphor for living alongside of chronic illness and I am now more cognizant of not overdoing it and using up all of my spoons.
I learn so much from the vast knowledge you share with us and just wanted to thank you.
Sheila
EileenH sheila28713
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My 16 year old granddaughter has very severe asthma and is on permanent high dose pred - gone from a slender 10 year old who shared her mum's size 6 clothes to somehting more like an 18. Last night she had posted a picture on FB of a nearly empty battery - "this is what I have left for the rest of today". She's down to part-time school - not too bad since Highers start very soon and most course work will be done but she couldn't even go to a pop concert with a mate without almost collapsing.
We don't know we are born...
linda17563 EileenH
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EileenH linda17563
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Oh yes - Nome has been in resus a few times with panicking doctors who couldn't stabilise her. A couple of them were because of the local paediatric specialist at Sick Kids who decided it wasn't asthma but "laryngeal dysfunction" and it should be managed with coached breathing and drew up an action plan that nearly killed her. The nurses could see - the doctors couldn't. Now she's in a no-man's land between paediatric and adult medicine. Luckily her mother is nurse-trained and worked on the chest ward after she qualified so has a fair idea what to do. It wasn't helped at its worst because her father insisted she didn't need an ambulance to transfer her the 12 miles to A&E - she could have gone off any time while her mother was driving her there.
It doesn't bear thinking about...
linda17563 EileenH
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sheila28713 EileenH
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