I'm wondering how to deal with fatigue and muscles still get achy and stiff after moderate exercise?

[catdance]

I have had PMR since September of 2019, was diagnosed by March 2020. I started with 20mg prednisone and I'm down to 4 mg but still struggling with fatigue, lack of energy and sore achy muscles.

[piglette]

You are at the point where your adrenal glands are leaping back into action which can really cause fatigue.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Or not leaping, as the case may be!

[DorsetLady PMRGCAuk volunteer]

As piglette says could well be an adrenal problem, but you also may have gone below the level of Pred your illness actually requires.

Perhaps stick at 4mg for a while longer, make sure you are pacing yourself properly and see how it goes……if it is adrenals they need gently nudging into action….for most people it’s very slow reducing and patience!

[Cosmos22Marigold]

Hi. I was diagnosed in nov 2020. Put on 20 mgs and am now down to 5mgs and following D. Ladys plan. Very slow plan. Its working fine but i do get fatigued quite a lot so i just rest up or try and have a quick nap. Just 15 mins usually does the trick. I dont do physical exercise much but i do find walking is good for me. I think my adrenal glands are kicking in as i start to feel like my old self now and I again. Who knows with this illness!!! Good luck.

[catdance in reply to Cosmos22Marigold]

I never thought about it but having my 2 yr old grandson to watch has actually been easier than oall the other days in between. Maybe it's because I take a nap with him!

[Cosmos22Marigold in reply to catdance]

Could be so try and keep it up. It really does help me and I'm not asleep long. I expect the little one wears you out so a little 5 mins works wonders. All the best.

[SnazzyD]

If like me you were given the impression that low doses give you wings it may be disappointing to find it can be the opposite until your adrenal function returns to full capacity. This can take many months or not occur at all. The key is don’t over do it, listen to your body, nap if you need to and drop no faster than 0.5mg per month or even longer. It can be difficult to distinguish between too low for the PMR or just sluggish adrenals so be very vigilant.

[catdance in reply to SnazzyD]

Actually was under the immpression this will go away and my Dr. wants me off the steroids asap. Is there something to look for that will tell you the difference? Is there a test to check the function of the adrenals? Funny my counselor just suggested the same thing. He called it tactical retreat.

[DorsetLady PMRGCAuk volunteer in reply to catdance]

Normally it does into remission (known as a self limiting disease) - but can be anything between 2-6 years. Not many doctors tell you that!Test re adrenal function has been answered in thread..,

[SnazzyD in reply to catdance]

Both PMR and poor adrenal function usually do just go away but often not in the timescale that we wish or what the doctor believes it ought to be. As to how you tell, it’s really difficult especially without the PMR pain being present. If autoimmune activity is revving up people have complained of extra fatigue and sweats but you can get this with adrenal insufficiency, which can also cause fluey aches and pains. I only had GCA but I expect PMR pain is not a vague cloud of aches like I had. I suspect adrenal problems go up and down and if your dose is too low for PMR I would have thought it would slowly progress. It is a minefield and we are all a bit different.

With the tests spoken about, you may find you have an ok one on the day but your adrenals don’t function spot on all day every day. I could have a good day and then a wiped out day and in the beginning if I had a shock like nearly falling down the stairs, I would feel weak, tired and shakey for hours afterwards. All this unpredictability and needing sleeps every afternoon again, went slowly over months. You just have to see how you go and look up symptoms of adrenal insane adrenal crisis so you are aware when to act.

[PMRpro Ambassador]

The fatigue is an inherent part of autoimmune disease and, at the dose you are at, now a factor relating to adrenal function. The pred doesn't really have an effect on the first - except at high doses where it is a false friend, convincing you you can conquer the world. But you can't. More pred at lower doses might make it feel better - but doesn't help the return to normal function.

At either stage the links in this post are useful:

healthunlocked.com/pmrgcauk......

Above all the Sjoegrens 15 types of fatigue article is enlightening. It is all part of the life-changing side of PMR.

And don't forget - we are 2 years into another life-changing experience and it is February - the end of a dragging winter but not really turning into early spring yet if you are in more northern climes.

[Hidden]

I was diagnosed Dec 2109. Started on 15mg which is normal starting dose for PMR. However, in March 2020 GCA was diagnosed, so told to take 40mg. I managed to taper to 6.5mg when GCA symptoms came on again. Increased to 10mg which took those symptoms away, but, I have experienced painful arms, shoulder and neck for quite a while, even on the higher dose. Trying to ignore them as only bad when I have to lift heavy shopping bags, and my husbands mobility scooter. Try taking the B12 mouth spray called BetterYou. I find it so good and gives me lots of energy. I was bit low on B12 after a blood test a while back. Advised to try the mouth spray, my B12 has risen to a normal level. Are you taking D3 with K2 and Magnesium ? the three taken together helps with absorption. As we age I think we all need help with extra supplements. I also take Krill to help with arthritis.

Feel better

Anne

[catdance in reply to Hidden]

I am taking extra Calcium with Vit D3, I was also taking Vit K2 with D3 but stopped that after a test revealed I was doing great with Vit D and my Dr told me to cut back. I am also taking a Vit B complex as well. I'm wondering if there is a test to check for the adrenal function? I know everytime I exercise or as the weather forces me to do some shoveling &/or use the walkbehind snowblower, I find that I get absolutely wiped out and sometimes not just for the rest of the day but for 2 -3 days following. Living in Michigan is sometimes a challenge! I talked to my Dr. about the fatigue but she kind of dismissed it, which surprised me. I have also been told by my Dr. that she wants me to continue to come off the steroids, .5 mg at a time/month until I am completely off. I don't think she has a plan that includes continuing the steroids. Everything that I have read indicates that this is just temporary and will go away as mysteriousy as it came on after about 2 years. Well I've had it now for nearly 2 1/2 yrs and I am still having symptoms! It sounds like this is something that doesn't always go away but needs to be maintained? I also had a problem with tapering of the dose earlier on and then had a relapse from the first Covid vaccine which set me back on tapering off.

[PMRpro Ambassador in reply to catdance]

There is a test to see if your adrenals are CAPABLE of producing cortisol - not that they are doing so reliably. It is called a synacthen test. But having a basal cortisol level checked in the morning before taking pred for the day is also quite informative for the half of patients who either have a very low cortisol which suggests adrenal insufficiency or one that is nearer normal which probably means all is fine. In between you may need to have a synacthen test for more information.

[catdance in reply to PMRpro]

Well I'm guessing that my adrenals are producing cortisol ok because I have gained a lot of weight in my belly since being on the prednisone. I have weighed as much as 178 lbs, lost 20 and gained back 10 after the relapse. I'm not really eating right, as of lately I have no appetite, so I feel I should be losing a lot more weight than I am. I'm maintaining. When the weather is good I try to walk. When it's bad I have an eliptical but that seems to wear me out more than walking. I haven't really been using it because of getting too easily wiped out. I know I need the movement so I try to take it easy just haven't been motivated much. I think you are right about the winter season dragging on because I definitely feel better all the way around when the sun is shining, even if it's frigid out! I will discuss it with my Dr the next time I have to go in. Thank you!

[PMRpro Ambassador in reply to catdance]

No - the weight gain is not because your body is producing cortisol but because you are taking pred which is an artificial corticosteroid and has the same effects. You can help avoid weight gain by cutting carbs drasticaly - especially processed carbs and added sugar. You will gain weight if you are eating carbs and junk because it is easy. I have eaten more carbs because I can't be bothered - all good quality though at least!

[DorsetLady PMRGCAuk volunteer in reply to catdance]

ACTH -,Synacthen test - ask doctor - medlineplus.gov/ency/articl...

[Hidden in reply to catdance]

Thing is the D3 works far better with K2 and Magnesium. Docs rarely know anything about supplements. I take my advice from a qualified nutritionist friend.

[catdance]

Thank you to all of you who took the time to answer. As I read these replies, I am tearing up. It has been overwhelming and depressing to say the least and now I know it's not just in my head! 😀 I have been seeking counseling due to feelings of inadequecy, depression and other things that have been going on in my life. Thank you for letting me know I'm not alone in this!

[DorsetLady PMRGCAuk volunteer in reply to catdance]

You are never alone - please remember that. There is always someone around whatever time of day or night - so reach out.

[PMRpro Ambassador in reply to catdance]

Absolutely NOT alone! There is a DVD/video that part of the PMRGCA charity produced 12 years ago which is called "You are not alone". And almost always someone here to answer - it is an international group with members in the UK, USA and Australia/NZ plus some insomniacs

[HeronNS]

When I read that you are on 4 mg I had a flashback to that very dose when I went through a period of time when I felt like I was walking through water. One time hubby and son and I went for a long walk, and towards the end I wasnt sure I would be able to get back to the car. It was very much off the beaten track so I was a bit worried but as you can tell, I survived. Eventually I began to get better, but it was very gradual. No question of adrenals "leaping" back into action, but they have and a recent morning cortisol test shows my cortisol production is normal. So your doctor must NOT pressure you to taper fast. Assuming your PMR symptoms continue to be controlled you can continue tapering, but really, really slowly. You are at a level where dreaded prednisone side effects are much reduced so your doctor should stop pressuring you so your body can recover at its own pace. If you are not yet using a slow taper plan check the FAQ post for a couple that people have found very helpful.

By the way, the term some of us use is "deathly fatigue". You are allowed to have a nap even when you don't have a toddler to keep you company!