I’m having a tough time with getting restful sleep and the ensuing extreme fatigue. Had a bumpy few weeks with an infection, then a decision to stay with friends in Portugal once the infection was clear. I felt well travelling but did not recover much while there, unlike our visit in September which was so beneficial to my health. In fact headaches returned and I had some jaw ache when eating crusty bread. Emailed rheumie who replied immediately and steroids upped to 20 mg again from 17.5. We arrived home on Tuesday and I had bloods taken yesterday. Awaiting results. I am struggling so much with months of poor sleep. On the rare occasions I have a fair night’s sleep I feel better. I can walk and see friends and family. My legs then feel much less heavy. I feel very low at present, so ill and exhausted all the time. I was such an active, sociable person. Is there any over the counter solution to aid sleep that won’t interfere with pred? I’m seeing my GP on Tuesday to discuss bloods and will bring this up. I have tried all the sleep hygiene stuff he recommended but I am getting quite depressed on top of everything else. I have no energy for anything. Apologies for the moan. I have tried to remain positive but feel I’m hitting a brick wall. Anxiety, sleeplessness, jittery ness, dreadful. It feels steroid related but who knows?
Insomnia advice, extreme fatigue, steroid effects - PMRGCAuk
Insomnia advice, extreme fatigue, steroid effects
when my insomnia was at its worst, I took 10 mgs of Amitriptyline one hour before bed, this seemed to make me comfy enough for sleep. I also had a regular, after lunch nap, or at least a lie down, properly on the bed under a blanket, whether I wanted one or not. My insomnia is so much better recently. I have and would have Zopiclone in extremis. It works, with no ill effects or drug incompatibilities and you can get it in half dose tablets. Insufficient, poor quality sleeps makes everything feel worse.
Thanks so much for your reply SJ. After your own recent A & E visit it is kind of you take time to offer me this advice. I will discuss with my doc on Tues. He has been reluctant to give me anything but I’m desperate now. I’ve probably hit the brick wall many face at this stage. It’s like I’ve become a different person.
Hi,
Maybe have a look at this post - does contain others experiences in replies - hope you can find something to help -
If you have a look at my recent posts, you will see that I eventually succumbed to chronic insomnia, so I really understand how truly awful it is not to be sleeping properly.
I got to the stage where a radical solution was the only way forward!
I could share many tips with you but would not recommend this sleep re-training unless you are desperate like I was! It is very tough.
Amitriptyline worked for me for 8 years and I do have sleeping tablets ( Zolpidem) for an emergency, so these are short term options, but you could also get yourself referred to a sleep clinic to get the right kind of support.
Don't let it get out of hand like I did!
Thanks DL and Suzy1959. I am in a desperate state today. Thank god for this forum. I’ve always been a pragmatic sort it person but I feel at sea with this situation, very low and with energy levels at rock bottom. I know some restful sleep will improve things. I can rarely sleep in the day but just sit around trying to conserve energy. I do my Pilates stretching exercises but that feels enough. Although I was ill in Portugal it felt better resting outside on a sun bed - although I did panic a bit with the headaches and jaw pain - probably added to stress.
"I can rarely sleep in the day"
Like sleeping at night - sometimes it has to be learned!
As I said I used Nytol -as advised my GP -neither of us wanted anything stronger - but some do need more. Agree headaches etc wouldn’t have helped you relax.
Fingers crossed you can find something that works…
It depends on you to some extent. One lady in the south of England (not on this forum) found she did very well with one of the Nytol products - it was a specific one for her so you would have to try them all before saying they don't work for you. HeronNS found that taking her calcium supplement just before bed helped her. I find taking my magnesium supplement (I use it for atrial fibrillation) helps me.
Ask your doctor for realistic help - and that doesn't include sleep hygiene measures now! Many will give you something to take occasionally to break the pattern of sleeplessness - and that is an important part of it since you get into the habit of not sleeping and it becomes learned. It is actually surprisingly important to rid your bedroom of all light/lights: stand-by lights on the TV or other devices need to be hidden or (preferably) switched off and black-out blinds are a blessing.
There are also training programmes for improving sleep - some can feel quite brutal while doing them since you are restricted with regard o the hours you sleep, going to bed late at first and a fixed time to get up. I think someone has written about something like that on the forum not so long ago. Lying in bed awake is said to be a bad idea - getting up and doing something else until you feel sleepy is recommended. Though I can be sitting here struggling to keep my eyes open but as soon as I lie down in bed, it is "ping" and wide awake!
Melatonin is approved in the UK for short-term use in adults over 55 who suffer from insomnia - but it doesn't mix well with pred so don't let the GP suggest that,
I looked at your post and then took a look at your bio and saw you were diagnosed on 29/6/22. So you are only 5 months into GCA.
You started on 60mg and have been down to 17.5mg twice in that short time - both times increased to 20mg.
That reduction in pred is pretty quick over such a short time and then symptoms re-appear and it looks like you are being reduced to fast and that it is not yet under control.
It also sounds as though you have been trying to carry on with your old life and not giving yourself or body to come to terms with a change that comes with auto-immune illnesses.
I have read your previous posts and do think you need to stop and take stock of where you are.
Both GCA and PMR are long term illnesses
I suggest you take the time to go to this link and read the experiences of some patients - it is a good insight to GCA and PMR.
. healthunlocked.com/pmrgcauk....
BTW I had GCA 5 years and now in remission coming up 12 years).
if I have sleep rhythm disturbances I use Promethazine, a strong antihistamine available over the counter if you ask for it in the UK. I don’t get on with the usual sleep meds, Nytol and things containing valerian make me a bit peculiar.
Sleep disturbance dogged me until my Pred dose was more like 10mg and below and the higher the dose the worse it was. I existed on daytime naps.
Your post also contains the sad lament for the loss of past activity. Nearly all of us were goers before diagnosis and it hits hard when it changes. Also, there is often a double whammy when the expectation that you take Pred and you get back to it, isn’t the case until much further down the line. There often follows desperate attempts to try to shoehorn one’s ‘old’ life back in and rarely dose it work because for now your body is dealing with an issue and needs your full cooperation. If one has a job or needs to be on it for some other reason and enjoys exercise it is a shocker to feel so shoddy and everything seem like it needs planning. Exercise is a tricky one because Pred makes one’s muscles and ligaments more delicate and I found that accumulated. We have it drummed in that exercise is good (plus it’s great) but our bodies say, “not on your Nellie!”. With this you need to find a level that helps and doesn’t reward with a kickback, which for many feels like diddly squat by old standards. I was super fit at 54 and suddenly all I could do was walk, never mind Pilates. For most it is essential to give in to the new requirements to a) avoid repeated disappointment and b) to avoid damage and over doing it. Feeling exhausted and rubbish all the time is not nice and the challenge is working out what is par for the course, what is from over doing it, what is sleep deprivation and what is the joys of Pred.
I've had GCA for three years now....and I was exhausted just reading your post. Believe me, I understand trying to do what you always did but for now you owe it to yourself to just slow down. Everyone is different, but I didn't get to 17.5 for 2.5 years. Maybe a slower reduction would help?
I can remember walking the halls with my cat when I had those months of not sleeping, but I would only do what I had to during the day and napped. A friend with GCA always said, "I'm lying in bed but my body is up cleaning the cupboards." I'm sure you get that...I used to just feel 'wired' too.
I hope you and your doctor find a solution, it may come slowly, but it will come!!💞
Thanks for all your replies, a lot to take in. Yes, I mourn my previous life. I have been following my body and pacing myself but my desire to stay with friends on holiday outweighed possible problems. Everyone was kind and understood the situation. Mentally and emotionally I needed to see them even though it was a risk. I relished the warmth of the sun and had time alone to rest. Please don’t think I’m a Pilates gym bunny. Just five minutes (sometimes twice a day) of gentle stretches I used to do in sessions makes my body feel better.
Bloods in. CRP 1; ESR 5. Rheumie thought Amitryptiline might help with sleep and I have a few left over from an earlier prescription. Re-booked GP appointment for Mon to discuss sleep and meds. Discovered I only have 10 mins so can only discuss one thing! Bizarre, especially when I’ve had good support at the practice. Next time I’ll book a double appointment. With this condition, there’s never just one thing. Fingers crossed. I really need to get some relief from a long period now of insomnia.
But with a complex condition the one-thing rule is ridiculous.
There is a fair bit of discussion about using amitryptiline - though if you have used it before you'll know to take it early enough to avoid a hangover next morning?
I take half a Zopiclone (=3.5 mg) for 2 or 3 nights in a row every now and then when I've accumulated too many bad nights and can't function properly. My reasoning is that the body can't regenerate and heal itself if it's tossing and turning all night long, not to mention the mind! I asked my doctor for something to help me sleep and Zopiclone is what he prescribed. I get 5 or 6 hours of uninterrupted sleep when I do this and feel much more energised the next day. Not something to do on a regular basis, probably, but a couple of good nights every couple of weeks does the world of good. Melatonin doesn't work for me. Good luck 🤞
You shouldn't take melatonin with steroids anyway - it makes the pred less effective.
My GP prescribes 7 x 3.75mg Zopiclone every now and then, I cut them in half and take with yogurt for a couple of nights after a few nights of broken sleep.
I've been in hospital with another TIA and really need the comfort of sleep.
I take trazadone when things get seriously out of whack
Morning all, A different perspective for me. I found many years, actually decades ago, when my OA was at its worst that lying in bed trying to get comfortable, which was pretty much an impossibity for more than a very short time, led to me getting very stressed and worrying about the fact that I wasn't sleeping. I fairly quickly realised that it was actually better to get up, move around, read a book, have a hot drink, Horlicks was and still is a favourite, and sit, doze, cat- nap, sleep (maybe) in a comfortable chair/go back to bed. Accept that this was the new normality and forget worrying and stressing.Now, I realise in those days this was a "pain" related problem and not a possible "Pred" problem, but it has meant, I guess, that I/my body? Is used to and not worried about disturbed nights and I don't get stressed about it, it's a reality. Taking my Pred etc at 02:00 is no problem.
I used to work full time in a stressful job and managed well. In the end Orthopaedic problems led to me taking early medical retirement, not sleep or stress problems. Today I would probably have received far more support at work and would have been able to carry on. Hey ho we'll never know the answer to that one.
The dogs are also used to, and enjoy that they could and usually are getting walks at any time of day or night. Also, to go totally against present day thinking, I read on my Tab, blue light enabled and find the TV on in the background relaxing and more sleep inducing as does my OH. Not saying this is right or wrong but it worked/works for me.
I am just catching up with all the new posts on here-
You could ask the GP for a referral to a sleep clinic. They are used to the more complex issues like medication interference etc. I agree with what PMRPro said in terms of how to correct your circadian rhythms once they have got out of whack- i.e. going to bed very late- I had to start from 2am (!!!)- and getting up early at the same time every day. No devices, caffeine in pm, no napping, only sleep in bed, no reading etc etc. This is working for me because before, I was exhausted but not at all sleepy.
Please do send me a private message if you want more information about all this. The doctor at the sleep clinic quite rightly said that sleeping pills do not change/cure anything and of course have side effects too.
A sleep clinic is helpful because we are all individuals as are the reasons we aren't sleeping and I had a horrible set back last week and needed a lot of support to get through it.
I have to say that this year has been my worst with PMR mainly because of the insomnia and the symptoms that have come with it - nausea every day, very swollen feet, itching all over, total emotional collapse! Today, I have had 5 hours' sleep and actually feel quite a bit better for it. The results are promising.
Like many others here. I was given Zopiclone when the sleeping was really bad. I took it for about 2 years, very gradually reducing the dose in tandem with the pred dose, using a tablet splitter, until I came off it altogether a couple of months ago. I can sleep a total of 6 or 7 hours a night, and can now sleep in the day, in fact I more or less have to. The reason I'm telling you this is in case you're worried about taking sleeping tablets in case you become dependent - I'm sure I was, but it was easily dealt with. Getting a reasonable night's sleep makes everything much more possible!🙂
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