I was diagnosed with fibromyalgia in October 2022.
I’ve had numerous different meds - at the moment I take duloxitine 30mg, propanalol 80mg slow release and pregabilin which has been up’d to 300mg since being in a RTA - I take 150mg morning and 150mg evening.
Just looking for advice - my sleeping is horrific! I am constantly exhausted which doesn’t help with my pain - the pregablin was meant to be to help with sleeping, but im still lying wide awake at 2 / 3 am .. I have young kids so cannot go on like this much longer.
Wondering if anyone else has any experience with medication , sleeping or any advise? Sorry for long post x
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whatsername11
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I have young kids aswell, and I'm a life long insomniac, it's not a great combination. I take Amitriptyline in the early evening. It was prescribed by my neurologist for migraines it doesn't help them at all but it does help my sleep. It gives me a sleep window, if I'm not in bed in that window or something happens I don't sleep but it does give me this window.Currently I'm sleeping on the top bunk of my kids bunkbed while my husband and two kids are in my lovely huge bed next door but it's just got to the point any noise or movement and what little sleep I get is made so much worse that this is where we're at currently. 🙄
I also sleep in a separate room from my wonderful husband for the same reason. Sleep is so crucial but sleeping separately from your partner is so taboo 🤦! X
I know it's sad isn't it? My kids are annoyed too bc they want me to sleep with them too but my sleeps just so bad I go to pieces fairly quickly.We're going on holiday in June, hopefully as tui already cancelled it once, we're getting a room with twin beds. On one hand it makes me feel really old and on another I'm just hoping I can cope with him in the same room.😆
I'm chuckling because we are just back from Lanzarote. We had twin beds, I struggled through 2 nights before I had to say, sorry love I'm exhausted. We ended up taking one of the mattresses into the lounge and took it in turns to sleep out there! It also doesn't help that he snores like a train and gets up for a wee! I know he can't help it but it just disturbs me further. Bless him he also loves to cuddle up to me and fall asleep (in seconds 😤) but it physically hurts if any of him is laying on any of me, so sad isn't it. He's a marathon runner so very slim so it's not like he's heavy or anything 🤷. Hope you get on ok in June. Next holiday I'm looking at 2 bedrooms, it makes me sad and it's more expensive! x
Ha ha that's just like us! Although I have Bladder Pain Syndrome so I'm up every couple of hours to wee. My husband falls asleep instantly too, just to rub it in I reckon 🤣. I can't get to sleep if anyone is touching me anywhere either, I'm like a night time cactus. Must be wonderful being married to us!
I know! The guilt of being a pants wife is just blooming awful isn't it 😫. I also have Interstitial cystitis but it's settled down over the past year. I have to avoid certain things but if I'm careful it's manageable. It's been dreadful in the past so my heart goes out to fellow suffers x
I too sleep in a separate room from my Hubby, I thought it was some hush hush, My hubby has huge medical conditions too,
We tried the different rooms because neither of us were sleeping well and just waking each other up all the time,I am in my room pretty much all the time now,We have our meals in my room and watch movies on date night sometimes take away, He sleeps an awful lot and I hardly sleep at all, We are ships in the night
Hi dedsdelight, lovely to hear others sleeping separately too. I think if more couples were brave enough they would choose to sleep separately too! I'm sorry you're not managing to get out your room much. This day will come for me too soon enough. Take care x
We found that I hung up his dressing gown in my room and the same for him,
He said it really helped him sleep, I did not, But I agreed anyway, Then I had an idea, When the kids were young I would cut up a terry nappy (a new one) and before you know it your little one is dragging it through the puddles to play group contently then I would have to try to get it back, In the end I had to cut a smaller piece and put it in her pocket,
Sorry went off piste ,any way we both have blankies now, It's a comfort blankie,
I think It's coming up to 3yrs now with staying in my room, I have a lot of diazepam at hand to get me to appointments (wonderful doc) I have set myself a couple of goals this yr, I want to sit in my back yard and do some colouring, And to take my dog's for a good walk (if I remember to charge my chair) I have a contraption that goes on to my chair and down to the dog leads, It was first used so cyclists and pooches could go for a ride and not get run over by the bike,
Awwww the blankies are so cute! You guys 😍. I'm loving the goals you have set too and I hope you are soon outside. It's amazing how you appreciate fresh air and the sunshine once these are taken away from you. I'm glad you have a wonderful doc, these are becoming rarer. So, my hubby has just gone out for a long run (am I envious - definitely 😤) but you have helped me feel grateful for everything I can still do so thank you 🙏. Take care x
It’s horrible. Ive been so upset lately, cos I just feel like I’m such a crap mum now. I’ve literally got little to no energy to do anything.. and when I do I push too hard and end up floored for days it’s horrible. I wouldn’t wish this on anyone. Thanks for your reply… do you take any medication to treat fibro? X
We waited for years to have children in the hope I might get a bit better, not from fibromyalgia but for my chronic migraines amongst other things. Then when that didn't get better I was getting too old so we just had to go for it anyway. I'm not on any meds for fibromyalgia, I tried all them at one time or another, I was on Gabapentin the longest. I had to come off everything to get pregnant, it's only then I realised they weren't making much difference, after withdrawal passed first.
I'm on a lot of meds for migraines and Bladder Pain Syndrome though, but probably not that relevant for fibromyalgia, other than the Amitriptyline I suppose.
whatsername11,It pains me to see that you feel like a crap mum,
The first thing, you 'feel,' Nothing like you 'are', Have the children a warm place to call home and sheltered from the elements? Are they fed ? Do they have clean clothes to wear? Do they go to bed at night with you saying "goodnight, I love you and to give out some heck of a hug,
I wish I had even 1 of those things as a child,
Do you read a bed time story? (optional) Sometimes you can get upset, and then it can turn into frustration, as long as you can give your best and nothing less You're there already, Stop beating yourself up,I don't know how old your children are but I think like so many Mum's,you need to step back for a couple of hrs ,
Have you got someone that can help you? Even if it's possible for a friend to come to you for a cupper and a chat take your mind into a different set,
Get hold of your GP if you can get past their triage system. And ask for help,
I hope you get the help you need
take care
Debs
Hi im on different meds I know where your coming from
My doc said enough is enough and
Prescibed a strong sleep med she says helps lots and prescibes as last resort
as tryed lots and long term
The sleep med is
Trazadone
It helps
Also a routine to get tired a bed time
Up at sat 6.30 am give yourself a couple hours to function, and no sleep through day helps some
Can I ask what medication you take to treat your fibromyalgia? .. I can’t go on like this, I’m absolutely exhausted. I keep busy all day with the kids, I honestly feel at the minute I’m just in burn out mode constantly. Seeing the gp on Monday & really hoping they give me something even short term.
Hi it will be hard with the kids for you Even if you could just reduce the pain and exhausting
Everyone is different though with meds
Pregablin max dose 600 g a day
I get 400mg in morning and 200mg at night or tea time you do work upto that dose though
And for sleep
Trazadone early evening
Instead of
Amitriptyline
Paracetamol as well as pain clinic said they help
Pain meds work better
And dehydracodine as well when needed
Do have arthritis as well
Hope your appointment goes ok with doc and get right meds and treatment to help
I don't know what to say because my dr won't give me anything for the pain he just says think positive 🤬 but if you have family around would they take the children for a night or even a a few hours to give you some respite sending air hugs take care
Hi sweetie.So sorry to hear that you are suffering so much. Lack of sleep worsens everything.
I won't go into all my meds but for sleep specifically I take Zopiclone Trazodone and Lorazepam.
My sleep is terrible but I'm also bipolar. They used to work brilliantly but not lately😐. I've had to accept that relaxing when possible is the best I'll get. The meds help with that. I dose every day about 3 pm. It's not sleep. A pre sleep then which relaxes me for bed about 7-8 p.m. I'm currently coming off Tramadol as they don't work for me anymore. It's a big thing for me as I have been on them for 20 years.
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