hello lovely people.
I want to feel naturally tired.
On pred for PMR 5 and half years, now reducing from 4 to 3.5 using DSNS method. No flairs, some aches, no stiffness. BUT feel like a runaway train. Heart beating fast (BP normal) anxiety through the roof, fight/flight in bucketloads. This is 24/7, broken sleep, glassy eyed as consequence, cannot calm enough to doze pm.
Where is this deadly fatigue?
What do my adrenals think they are doing?
Any help appreciated before I spin off this planet xx
Take a big deep breath and then do something you really really like.
I was given a couple of adult colouring books and sometimes just sitting colouring fairys' flowers, birds........
Must admit I was sceptical but they did help me relax.
sounds lovely. Will get my paintbox out, have always meant to but.... just need to calm enough to stop hands shaking. Thank you for responding. Listening to our local church bells, muffled for the Queen, a sense of history and continuity xx
I feel for you! Sleep deprivation is awful. I can't remember feeling as bad as you but I found breathing 'exercises' to be really beneficial. It does take a lot of practise but if you are determined and don't give up it can be very successful. Have a read of this:
I don't know if this is any help:
pituitary.org.uk/news/2022/...
Might be worth trying their helpline.
I think maybe asking the GP for help night be worth it - they might have their brain in gear. Have you moved and got a new GP? At what dose did this start? And did you continue with the statins- how did this development rea=late to starting them?
yes, am now moved all are more or less settled. Partner home from hosp with leaky heart valve as op could not fix it. Have new GPs, haven't seen any of them, only phone. Present taper is when it started, and yes still giving statins (now different sort) a go. In retrospect, statins co-incide with taper - stop statins and see if improvement?? Am now so tired can hardly think straight 😪
I think I might - these symptoms can also be due to statins as well as adrenal insufficiency and maybe the combination is simply too much.
And insist on seeing a GP f2f, with at least some help for the lack of sleep because that will compound it all, sleep deprivation is a dreadful thing.
thank you! You have reinforced my thinking, just got to find energy to insist. More inclined to stick head in sand and hope it all goes away. xx
What support have YOU got?
F#@k all!
This forum excepting!! xx
Thought so. THAT needs immediate attention - especially under the circumstances. And yes - I know that is probably cloud cuckoo land! But the GP is the first place to start and quote mental health risk if you don't get something in place.
so many thanks. That makes so much sense. Save me from disappearing down plughole! Isn't life a bitch sometimes?! xx
It is. No arguing with that. Under the circumstances - is further tapering the thing? Should you maybe retreat for a while?
been on 4mgs for nearly 2 years! Stayed there while i thought i was sorting life out 🤣 ! Yes, completely take your point - maybe DSNS x 2. It does give a positive feeling that one is getting somewhere!
I don't know which statins you're taking but here's another thing to read if you can bear to.
reuters.com/article/heart-s...
thank you. Am taking rosuvostatin at present, changed from atorvastatin as legs ached. Really appreciating your help xx
No problem. I would think that most of us share or have shared unwanted effects of something or other. I can empathise with sleeplessness as suffered a lot in the latter years of my career. .....fall into bed exhausted then those thoughts invade and go round and round interminably: wake in the early hours, wide awake, look at the clock and it's 1.15am, repeat, repeat till can't stand it any more and get up around 5am.
All will be well - eventually 🤞🏼🤞🏼🤞🏼.💐
Have you tried to be more physically active? Long walks or whatever activity you like? That is how I calm myself. Also helps to sleep better.
That is the only way that I can force myself to sleep at night these days. Walk at least once but ideally twice a day if I can manage it. (Walking has always been my form of therapy too.) Keep my day lengths to the old timings that I used when I worked (6.30am to 10.30pm). Don't snooze in the daytime even if tempted after lunch.
I lost half a stone and walked the dog into the ground……seriously being out just walking concentrating on what was around rather than having a racing brain really helped Me.I used to like embroidery so bought myself a kit and enjoyed it very much and again the concentrating on something else.helped.At night when awake I would read, have a backlit Kindle so didnt need to put on a light.And slowly everything got back to normal,
My heart really goes out to you. One looses oneself on these drugs.
All advice above is wonderful. Especially seeing your new GP. You must find out what he/she is like! I have found Audible to be invaluable during those awful nights when exhausted your mind races. You need to sleep alone though! I highly recommend the Seven Pillars of Wisdom by TE Lawrence. You don’t need to know where you are in the book. His wonderful descriptions of travelling through the desserts on a camel just lull you off into nod land.
My first Rheumy advised piriton for a bad night. I am drug sensitive and it took me three days to recover from it! But she said it works for some. Needless to say I have never taken it again and hope I never have to!
I feel for you because I experience what you are going through everyday and am likely to even mildly fir Life.
I have Chronic Dysautonomia ( Autonomic Nervous System Dysfunction) and this was much worse at high doses of steroids and as the Adrenal system effected the autonomic nerve functions as it kicked in at low doses. Increasing steroids just made it worse for me.
The ANS is in charge of all involuntary body responses, so 'fight or flight' and ' rest or digest' , so when out of balance the dysautonomia can cause palpitations, anxious feelings with no obvious cause , dizziness , fainting, extreme tiredness producing over alertness and insomnia or constant sleeping , Fatigue , loss of thinking skills , tremors , nausea , IBS , sleeping after food , body temperature problems and sweating , loss of balance, shortness of breath, difficulty exercising.
Some tips to help with the increased heart rate are:
Drinking more cool water regularly to reduce dizziness and palpitations before activity and during anxious feelings.
Move positions more slowly ( from lying to sitting , sitting to standing and vice versa , and moving the head from side to side). Change positions after drinking cool water quite quickly and pause and drink again before walking off .
The water tricks your brain into making the ANS work on balancing your temperature stopping it sending your heart rate into overdrive as your circulation changes to cope with position differences.
Use slow deliberate breathing techniques. Do this when you feel your heart race in a chair or lying on the bed and do the breathing exercise for one minute every five minutes for three times in fifteen minutes just after you get into bed to help keep your heart rate steady to help you relax and sleep.
The breathing technique is to breath in deep to your stomach for a count of 6 seconds then gently and slowly breath out for a count of six. That's five in and outs slowly in a minute. It takes a little practice. This brings down the heart rate and is a tactic used to prevent tachycardia. Have a good drink of water before you start.
Even if you can't sleep still follow a sleep plan. Get relaxed , make your bed and bedroom comfortable for your temperature needs , when you can't sleep body rest is vital to keeping healthy. Stop all stimulating activity including reading or listening to music half an hour before you want to go to sleep and fifteen minutes before lying down to do your breathing exercises. Put off the lights and remove any devices from your temptation as the blue light of phones and TV actually stimulates the heart and brain , stimulates alertness and reduces eye blinking .
If you are feeling very restless after some time in bed have a little sit up or stroll in your room then do your breathing and try again. Try not to nap more than an hour during the day and not after 4pm.
Gentle exercise like walking , tai chi and swimming each day also helps calm the system down and increases oxygen levels making you more relaxed by the end of the day. You really need to pace yourself and reduce stress or overactivity of any sort to keep the nervous system balanced until you are over what is hopefully a temporary situation while your adrenal function and ANS get back in balance again.
Some people find a daily antihistamine can help reduce the symptoms that affect sleep.
Get your Vitamin B 12 , Folates , Ferritin, Kidney Function and Vitamin D tested by the GP. Too much sodium or vitamin deficiencies, especially B12 , can cause palpitations and dysautonomic symptoms.
After the blood test , if you don't take them already try Vitamin B12 with food but without anything with vitamin C in it , and after your fattiest meal of the day take a full vitamin and mineral supplement and extra vitamin D with Magnesium . My symptoms have improved a lot since doing this and being put on B12 injections as I have chronic B12 deficiency anaemia.
I hope it improves for you soon . If not ask the GP referral to Cardiology to check your heart rate and possible tachycardia .
thank you for taking the time to write such a comprehensive response. I will put much of it into practice. So sorry to hear your experiences. I am due a blood test next month so will request they include the ones you mention. Again, I appreciate your response, find it helps to put things into perspective which is one of the reasons this forum is so amazing. x
Holy Basil seems to work for calming. Also, magnesium.
thank you, have been using magnesium spray on legs. Think it works but not sure how - psychological?
we are so lucky to have so many “experts” on this forum. I for one feel so comforted by the fact that there is always someone available to respond quickly to any concerns we have.
Feeling very tired 
How should I feel?
So tired!
I want to help my daughter
Why am I so tired?
