Hi folks, I’m here looking for thoughts about lack of energy. After 4.5 years of PMR, I am tapered (third time) to 2mg pred. I have very little pain, and really feel like I am nearing the end of my PMR journey. However, I have zero energy. It feels like my gas tank is running on empty.
On sunny days, I get little bursts of energy, just enough to putter about my garden a bit...then back to the droops. My doc prescribed an antidepressant which helps with my mood, but I still struggle with lack of physical energy. Efforts to get into exercise routine have been absolutely non starters.
I wonder if my adrenal function is still sluggish? The endo I asked about the issue, was not concerned, and would not order a test.
So here I am, feeling about 20 years older than I am. Has anyone else experienced this lack of energy so near the end of this PMR journey?
Enjoying the start of winter Olympic games!👏🏼👏🏼
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1Purplecrow
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It is very common - and while your endo may not be concerned it isn't them living with it! But regaining full adrenal function doesn't happen quickly - most people who got off pred say it took them up to a year to get back to normal.
Yep, Yep, Yep to your question. I've reduced down to 2mgpd recently and experience the same thing - 'DF' (Deathly Fatigue). I'm sure the Aunties and others will be along shortly with their opinions, but I think (I stress, Think..) it could be a result of weaning-off the Preds as much as anything - especially if you aren't having a return of / increase in PMR Pain, Stiffness etc. If it helps, I've upped the Preds to 5 mgpd for a while, but like you, it hasn't the done much for the DF. Grrrr...!!!!
My (amateur) understanding is that even if the Preds are controlling inflammation etc adequately, and even at lower dosages, the sleepy Adrenals are still struggling to wake up and get back to Business as Usual in the production of natural cortisol. I can absolutely relate to the brief energy swings that you describe - a bit like the difference between Night and Day? And, of course, any efforts to push the Adrenals too hard will result in them protesting in the form of Fatigue. Yes, it's depressing - but I just wonder if anti-depressants are the real answer..? I don't know - unless you really are struggling emotionally.
If it helps, quite a few people here report the same thing - and even at very low levels of Preds, like us (i.e 2mgpd). I think we can have a false illusion that being nearly 'Off' the Preds means that we have nearly 'Recovered' - when in fact there's still quite a long adjustment / recovery process to get through - even after stopping them. Sorry to say it, but that's my take on things.
My strategy (if it helps)? Try to Roll-with-it and not push yourself / get anxious / stressed about the energy swings. It's probably your body telling you that it's not ready yet for too much extra 'load', and the need to Rest (even if quite a lot - as for me too) sending you just that message. Maybe not so near to the 'end' of the journey as you hoped! But be patient, have faith, and it will happen eventually.
On the Positive side - cold / wet Winter weather doesn't help most people's PMR / related symptoms one bit, and I'm sure that a nice warm Spring + some Sunshine & natural Vit D. will help quite a few of us get over the PMR Winter Blues.
Try to keep positive - and smiling - in the meantime
MB
Oooooo, 1Purplecrow, My heart goes out to you.
Your post shook me to my very core. I think it was the words "... after 4.5 years, " and "... 2mg pred" that hit me like a ton of bricks. : (
I have been attributing my ever present and deep rooted fatigue, exhaustion and general malaise to the high doses of Pred I'm on and the fact that I am only 90+ days int this miserable journey...
These words I write from my bed where I have been for the past 3.5 hours; sleeping, reading, writing... while my husband (who needed to get out of the house, God bless him) went into town exploring, without me.
Of course you can - at present you have a very serious systemic condition which feels like permenent flu and you are only 90+ days into it. It WILL improve but you must be patient. If you don't learn anything else you will learn 1) to put yourself first and 2) patience.
It is a whole new ballgame - but the only way is up: providing you get it right and go down first. You are on high dose pred so you don't lose your sight - in a year you will look back and see how far you have come. Ask Dorset Lady.
i bet your hub understands. I laze in bed on a heat pad with my iPad for a good long while - obviously this site is first and favourite favourite app. Also I have found a free local library app so am always reading library books, plus I am slightly addicted to words with friends... And without anyone taking it the wrong way, I play with myself ! Three solo games non-stop! Sometimes I reflect this is a tad sad... And then I think "sod it". I downloaded Spotify (which was all new to me) and I have lots of wellbeing apps. Enjoy this time and see it as rest and recuperation! All in readiness of your grandchild visiting next week. You can do this.
You will get there mamici1. Yes it's a tough road but we're all on it and you have the inner strength to see it through. I manage to work three days a week with this tough condition but am so much improved two years down the line. Take it a day at a time and focus on your gorgeous grandchild who looks at you and sees his lovely granma, not pmr.
The trick is to get him to do the food shopping while he's out. Be tolerant at first, and encouraging - with any luck he'll gradually get the hang of what you need. Good luck.
This was a reply to your post of several posts back - ref husband.
It IS a shock to the system at first, and we all have bad days but, as you can tell from this forum, we mostly do adjust to the situation. Take it easy.
Yep been there, for me I was between the doses 6mg down to 3mg and best part of a year...some days better than others. Thought I was never going to get through it, but eventually it all clicked and off I went.
Came as a bit if a shock to me, I’d never suffered from fatigue all the way through...apart from pre diagnosis of course.
You will get there...but unfortunately can’t say how long! But just persevere- staying at 2mg so long as you don’t have any other symptoms, but obviously going up if you need to!
Thank you for the words of reassurance. I know the practicality of what you say, but its been a challenge to see the forest from the middle of the trees.
Time for me to step back a bit and let let my system continue to heal.
I got down to 2.5mg and the fatigue and depression was dire. Not only that, it proved not to be enough pred for me and after 6 weeks I had a terrible flare of pmr symptoms. My lovely gp put me on 10mg for 2 days rhen7.5 mg for 5 days then down to 5mg. Have remained on 5 now for 4 weeks and I feel fine again. I think the fatigue was due to the slow build up of inflammation due to not quite enough pred. My Rheumy was not happy but, as I said to her, “my quality of life has a value. “
yes the fatigue as I always say is just nauseating. I got to the stage where I just wanted to end it all I was so bad and excrutiating leg pains. Then I put the pred up and felt a bit better.
PMR for nearly 4 yrs, down to 3.5 mg but struggled so back to 4mg; very fatigued. I was hoping to get down to lower dose within the 4 yrs but seem to recall that it's suggested the reduction from 5 mg to zero is done extremely slowly, e.g. 12 months. Make myself go for short 15 minute walks daily & 2 Pilates classes weekly. Weight loss a concern.
Do please check with your doctor - extreme fatigue and weight loss are both signs you may be developing secondary Addison's disease. In which case, you need a synacthen test to see if you forcing the continued reduction will work at all.
There seems to be some disagreement as to the optimum level. One thing to keep in mind is there are two measurements used, so make sure the number you have for your level, from a blood test, is really comparable to recommendations you may read on the internet. I'm not sure the name of the measurement they use where I live but I was told that 169, my first level, was above 150 and the level considered toxic was over 200. Later I brought this down to 80, and was told this was "low normal". Last measurement was 100, which I'm happy with. But you can read all over the web that 30 is considered normal, or that 50 is optimal.... and maybe these sites are using the "other" measure?
So that's what's happening. I thought it was my recovery from 2 serious bouts of a chest infection. I'm now down to 15mg from 50 Last september. Just about to go down to 12.5. Trying to pack to leave my house. This scourge has meant I've had to sell it and move back with my mum at 54 (god forbid). I have always had excellent energy levels, too much some would say. I find I even get fatigued at the thought of doing things. It's scary and frustrating. reading small amounts and having to sleep again...what's that about. My mum thinks I'm being lazy so watch this space for how long I stay there. But I'm staying positive. Walking into the future. This will get better and as soon as I get rid of these narcotics I will be managing this Homeopathically like a contact I've been given. Hers has never returned.Working with a nutritionist on the impact of foods on inflammation. I'll try anything other than those steroids in future.
I wish though there was a letter or something you could give to family members to remind them that while this is invisible we are still suffering and enduring this life changing condition.
Just booked a weeks holiday to sunny Lanzarote in the Canary Islands. Sunshine here I come. Can't wait.
Spoil yourself. I find my energy picks up a bit when I do something nice for me. And then there is singing. When I sing I don't have the symptoms.
"This will get better and as soon as I get rid of these narcotics I will be managing this Homeopathically like a contact I've been given. Hers has never returned.Working with a nutritionist on the impact of foods on inflammation. I'll try anything other than those steroids in future."
I don't know what your diagnosis is - but starting on 50mg suggests your doctor thought you have GCA. Narcotics have no place in managing either PMR or GCA - they simply don't work - and if they are helping your pain, it isn't due to GCA or PMR. Only an adequate dose of pred manages them.
If, on the other hand, you DO have GCA, then you need pred. If you decided to use homeopathic medicine in a case of GCA you would be putting your sight on the line - irreversibly. I know homeopathic practitioners who took pred because they KNEW homeopathy won't work in GCA except to possibly relieve some of the side effects.
If your friend had GCA then it is very unlikely it would return after cessation of pred - I don't think I know of a second case of GCA although there are a few people who have had PMR more than once. Obviously eating a healthy diet with many antiinflammatory food will be beneficial. But I wouldn't rely on it in a possible case of GCA.
Thats what the specialist described pred as. A narcotic. They rushed in without checking if I did (after months of claiming it was stress and no action). Still don't know if I have it or not. If I lived in Dundee they would have given me an emergency appointment with specialist to properly diagnose within 24 hours before prescribing such high levels of pred. It might not have been necessary. Scary that the quality of your treatment depends on where you live. The Health Postcode Lottery we call it. Can hardly type due to my split fingers (oh and yes I've got my moisturiser with me all the time, folks think I've got wringing hand syndrome).
So the way they are playing it is to reduce and see if the headaches return but without any advice on what to do if they actually do. And headaches have returned but I don't know if they are GCA or the fact I'm moving house which is stressful. Drs appt tomorrow for more bullshit and vaguery. Never mind I've asked for a referral to Dundee for 2nd opinion..... or at least an opinion.
I do object to doctors using misleading terminology - pred is a corticosteroid, not a narcotic. Narcotics are a totally different class of drugs.
Where in Scotland are you? I didn't know Dundee has the fast-track GCA set-up - though since the drivers of PMRGCA Scotland are based there I suppose it is logical!! You have your own charity:
I was also at the end of my Pred journey( or so I thought)I reduced to 1mg with orders from my Gp.Well I felt dreadful,aches and pains and so fatigued.I looked rough and ill.So I am now back on 5mg and can say I feel much better.I was under the impression that my PMR had gone because my Gp told me it's a 2 year illness !! x Sandra
Exactly whats happening with me - and yes even to looking awful. Black under eyes - when I increase the pred things start to look up. Just about to start the battle soon to be left on the pred!! As much as I hate it.
I was diagnosed with pmr at the age of 54 three years ago. I was down to half mg every other day and doing ok, and so, 3 weeks ago I decided to stop taking the pred completely.
I am still feeling the fatigue that I felt all the way through my pmr journey, I still feel a little stiff in the mornings too but nothing like the pmr stiffness and pain. I think with time and patience, plus a little sunshine and warmer weather, it will start to improve. What I've learned through all of this is to listen to your body, eat healthily and do moderate exercise daily (for me that's just walking the dog as much or as little as I feel able).
It's definitely a test to our patience and endurance capabilities, three years have passed quicker than I thought they would, it's not always been easy but we will hopefully all get there one day. It's relatively early days off the pref for me and I'd hoped to feel more energetic than I do but I know it will come if I take my time.......chin up you are getting there
I have previously been on prednisone for a number of years. With doses up to 25mg per day When I came of them my body doesn’t make steroids any more so I’m on a daily dose of 25mg of hydrocortisone. I had a blood test which told the doctors the full extent Of it.
This time last year I had got to 2mg and thought great. But so exhausted and while waiting for GP appointment the pain started and legs got so stiff that walking was difficult again. I even had to dust of the walking stick! Went back to 5mg and it settled. Just managed to get back to 4mg and am doing OK. Please try and hang in there
Hi 1 purple crow, I know the feeling, don't we all? If you want a cheat way to get some energy short term, try the extra energy tablets available in Super markets & Chemists. I'm afraid I rely on them in time of need.
Why on earth wouldn’t they allow you a test? That’s the first job, push for the Synacthen Test. Energy is a funny thing with this disease, it is kind of counterintuitive. The signals you get are not accurate. When I feel like lying down, I should go for a walk, with each step I get more, not less energy. I don’t mean we should over do things but movement and fresh air seem to give, not take energy. I hope that makes sense. Do push for a test on your Adrenal Function though, you simply cannot run on empty. I wonder if you would perk up with 5 mgs of Prednisalone? That is one of the treatments for a dysfunctional Adrenal system.
Thank you for the boost! The endo was working with thyroid issues, and wasnt interested in mixing the disorders(???)
However, My gp is very supportive and listens to my opinion regarding what I think and need. I will visit her this week and discuss the synacthen test. I need to know the facts, then I can move forward. I have had every other imiginable test this year...this remains the last to do.
Am familiar w that 'running on empty' feeling, Purplecrow. Commiserations.
Speaking personally, I find it comforting to know that I'm not the only one who has found it impossible, so far, to get into an exercise routine. Some people just make me feel totally inadequate! But I'm only down to 8>7.5, and it's less comforting to know that there's so much of the tunnel still to negotiate. However, am setting sights well into the future, and adopting a policy of tiny (achievable?) targets.
Am interested by SheffieldJane's comment that ' movement and fresh air seem to give, not take energy'. Does sound hopeful. Used to be true - is it still? Am determined to follow up on it - just need a bit more self-discipline . . . .
It is for me - though the repeated doses of snow here this winter and the (still) lack of warmth in the sun when it does appear have been a bit offputting!
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PMR and starting Pred
On 2.5 Pred and lost motivation
Tapering Pred
Down to 2mg 
