Hi, Having reduced my pred dose from 20mg, i have been on 7mg for 3 weeks. I had some initial tiredness and sugar craving. That seemed to improve but have been having some low mood and cannot be bothered syndrome and get around to it tomorrow. Is this a common symptom and does it pass? Thanks
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Sounds suspiciously like adrenals stuttering - have a look at this -
healthunlocked.com/pmrgcauk...
It does improve as they decide to get going, but can’t say how long it will take -just a matter of slow tapering to nudge them into life, time and patience..
Thank you Dorset Lady. I will check it out.
I have had cant be bothered syndrome and low motivation for a long time. I don't know if its pred or if the whole caboodle of PMR gets you down? With me its OA as well limiting my mobility and I recently had a thing where I lost even more of my Independence but that's not forever just feels like it a the moment. Definitely weather related for winter I think. When I do get round to doing something that's been on my mind for ages I feel soooo much better. I also find if Parker starts a job I'll join in and that gets me going, doing it together. Thankfully he has just retired and as much as he needs training in how to put the tele remote down during the day it does help having someone to motivate you. I'm down to 5 mg after a flare so things should pick up. I just can't shift the weight and I think its thyroid but that's a good excuse also for low mood. Working on a doctor who will listen, hear me out and isn't too busy to check it out and get me out of his face.
Difficulty putting the remote down is something I suffer from also, and I try to be discriminating and avoid too much gloom and doom. In in the kitchen I listen to the radio to try to crack on a bit.! LOL I also know how important it is to find a doctor with emotional intelligence as encouragement and support makes such a difference. I think a sensible diet helps and when I can find the energy to chop up the veg to put in the slow cooker with beans or whatever I think I feel a bit better, .A sense of humour also is helpful and it sounds like you have a good sense of humour Estellemac.
Regarding the dark I have put up a few Christmas lights earlier this year
ours are up in the kitchen!
you have my sympathy. I felt wretched at this dose level. It was too high to properly trigger the adrenals to work and too low to make up the shortfall from the lack of Pred. Until I got low enough for the body to register there was an issue, I had very low energy, was tearful at teatime every day, couldn’t wake up in the morning and felt weak and that was summer. I had to shrink my life in order to slowly reduce by 0.5mg at a time introduced slowly over 6-14 weeks depending on how I felt. For me the no-man’s-land and worst time was about 7-5mg, before I started to feel slowly better. Everyone is different and some don’t hit the skids until much lower. Do read the links about adrenal function in the FAQ’s because you also need to know about adrenal crisis.
Thank you, that makes sense and is very helpful.
Don't know if it is a common symptom - I've had it since I got to 7mg and it is worse at 6mg!!!! Certainly not going to go any lower until I stop feeling as if I could sleep for Britain! It is nice sleeping as well as I do, but not the "can I go back to bed?" feeling all day ...
It is helpful to know it affects many of us in different ways. I often feel most awake later in the day.
Yes, he slooow start to the day was my problem. I forgot to say i had to go back to having solid 2 hour sleeps in the afternoon.
Oh Snazzy, me too. Just got up at 6pm. Hopeless!! 🤦♀️
I suppose its about our bodies telling us what we need and paying attention to it.
Yes ..it is all about that…
yes, because right now it really is running on empty and readjusting to not having a powerful cortisol substitute that caused you to switch off your own production. Your glands may be functional but the feedback system to the brain may be lacking; you have no idea where the memo got stuck in the chin of events that produces a squirt. The trouble is you just don’t know. If people are still feeling rough when they are well under 5mg a test (Synacthen) can be done that sees if the glands will work given the right signals.
Thats important to know and makes it easier to see why we feel as we do at this stage of the treatment. It also reinforces why it is so important to take good care of ourselves. Thank you.
So interesting to read all these... I shall read the link again, thanks for that DL. I'm on 7.5, reducing .05 every three weeks as also on Methotrexate and TCZ. But increasingly becoming more weary, tearful (yes!) and wobbly - I notice it gets worse about five hours after I take the meds, ie around 2-3 in the afternoon. Rally a bit late afternoon evening, but staggering about by bedtime. (GCA not PMR).
I want to go back to bed pretty much all day, which is totally unlike me. I’ve always been regarded as wakeful, never even dozing after a big meal….no longer, I’m afraid. I’m on 9.5mg so it seems a bit early for this 😴
I am at least at 6mg, after 13 years can't expect much else I suppose ...
yes it will eventually pass, takes a long time and lots of patience. Hang on in there.
And the support of this group is really helpful!
Yes, I have a bad dose of can’t be bothered syndrome as well. What I have started to do is I make out a list of things I need to do. I put every little thing on it and gradually work my way down it in my own time. I put one non routine job on it like maybe cleaning out a particular drawer. Now instead of sitting thinking about all I need to do I’ll get up with the intention to do one thing on the list which will often turn into a couple and in no time my list is finished. I start a new list every Saturday morning, some weeks I’ll do all in the weekend and sometimes it will take the week but I’m still moving forward which is all that matters.
Yes i am a list maker too. I think the idea of pacing yourself is a good one. Its about putting our wellbeing first. I think doing relaxing stuff is important. I found some really nice music on classic fm last night which was really lovely.
It's a common problem for anyone , including the healthy , but especially with most Chronic Health issues that can effect our general body health or Autonomic Nervous System.Steroids and changes in them definitely take a big fee from the body for the work they do .
When doses are high our Autonomic Function can go into overdrive and cause insomnia , mood swings , irritability, palpitations, dizziness, brain fog and heavy sweating . The metabolism of the drug as well as Pain Flares can cause us to become depleted in vitamins and minerals essential for the body to cope and fight off Fatigue , even if our diet is good.
When doses become lower and the body starts to try to take hold of it's own responses and release of chemicals like cortisol , the adrenals , and autonomic nervous system , needs to get used to how to respond to the job. So , Fatigue , Neuro Pain , Poor Temperature regulation , excessive sleepiness or insomnia , sleeping after meals , breathlessness, poor thinking skills , low mood , feeling of anxiety with no apparent cause, digestive problems as well as the symptoms above can happen with little provocation.
This can be made worse and be coupled by stiffness , muscle weakness , neuropathy of different types , migraine , vision problems , numbness and tingling , restless legs and various digestion symptoms if you have also become low or deficient in certain vitamins and minerals over time or have some level of dehydration.
Getting your essential vitamins checked with blood tests is important when you take steroids or suffer from a chronic illness , even if you take a daily supplement and the additional supplements recommended.
Its not impossible to become deficient despite a good diet and supplements especially if you have regular flares , additional illnesses or digestive problems , or infections.
Getting the following blood tests will give you a baseline and prove if your symptoms could be linked to any deficiency. Ask your GP for a full blood count , liver panel and kidney function test if you haven't had them in the last six weeks.
Request a Vitamin B 12 , Vitamin D , Ferritin panel ( iron), Folate and Magnesium test.
You can request these and they are important to be proactive in keeping your body up to the job of healing.
If you are low in any of these taking an additional supplement will help your symptoms , if you are deficient the GP should offer you supplements to improve them.
Keep up the fluids . You can be dehydrated internally even if you aren't thirsty and the body needs a lot of water to cope with the jobs of repair and healing. It also needs good hydration to send those essential nutrients around the body to maintain all the jobs it needs to do. Dehydration can cause lots of symptoms especially Fatigue , Aches and Pains , and changes in mood and motivation.
Mentally speaking , as others have said , write a list but don't make it feel punishing. I copy off the daily list my Mother in Law has on her fridge which I used to laugh at in healthier years .
This is probably because I remember a Mindfulness tip that says that you have had a productive day if you can tick three things off your list for that day.
Well my MIL and I have a list that includes : Get Up , Go to Bathroom , Take Meds , Have Breakfast , Get Dressed .
That means I have usually done three things on my list before breakfast, so when I have a day that I don't even feel like getting dressed I can still do it feeling successful and guilt free. Hey , I might still be in my jimjams but at least I still had a productive day!
All jokes aside , when you hit a slump , give yourself time , Fatigue like Insomnia only gets worse as you tire yourself out worrying about it. Check if you need extra nutrient help to feel less tired then take it slow to add a bit more activity into your day. Eat light , with smaller portions through the day instead of 3 big meals and drink often.
A few minutes of slow walking or gentle chair stretches a couple of times a day is good in a real slump as it does boost your mood and energy without causing the chance of a flare.
Doing a few minutes of a job or pleasure activity and then resting also helps . Especially if you look at your list and find you've got up to 6 things on your simple daily list.
And assess what is really important to do during this time when energy is low. Write the list but then cross off all the things you included that you think you should do , or have to do.
Only include the things you need to do or want to do.
Believe me , the list will instantly shrink by half as you lighten your load by not including all those things that you just kept up for the sake of it , because that's what you've always done , or because others expect you to do it.
Take care and give yourself a bit of Me Time , Bee
thank you so much for sharing this , I can relate to myself here . I’ve been very breathless these last few weeks and reading this I now know why . I’m down to 5mg of pred from 15 mg in June . I have no motivation right now . I do take all the necessary vitamins but I don’t drink enough so I’m now going to drink plenty of water . Thank you once again , you’ve been so very helpful. Xx
Happy to help . Drinking before moving about after a long time helps , as does drinking before , during and after exercise or physical activity. If you still have breathing issues though , get your chest checked by the GP just to be sure that there isn't anything else causing it . Take care , Bee
Thank you Bee for your wisdom and knowledge.
Just read your post and cannot believe how accurate your account is of just how I feel today and for the past few days. Dreading going to clinic on Thursday. 😞
Pace yourself and take good care of yourself. I have decided to stop apologising for feeling lacking in energy etc and to listen to my body and what it needs. x
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