Hi everyone, I’m Danielle I’m new to this forum, it just so happened google brought me here...
I’m 26, was diagnosed with ME, Fibromyalgia and IBS by a rheumatologist after having what felt like 50 blood tests, so many scans and hospital trips last year. It’s been a rollercoaster since then, I never knew how much an invisible illness could completely turn your life around, It has definitely changed me as a person in such a short time. I have so much respect and really do look up to everyone else that is dealing with an invisible illness, it took a while but I also have more respect for myself now, as much as I’m frustrated with my body on high pain days I am proud of it too.
What I came here to ask was, atm I’m really struggling with trying to keep some form of routine, I’ve read it can help with sleep and mental health etc and wondered if anyone could offer their advice what their routine might be that helps them, and what you can do to stick to it?
If I’m having a few “blank” days I call them, where I just feel nothing, can’t really hold much conversation etc I end up sleeping for about 14 hours straight, I wake up exhausted and feeling quite low depressed and demotivated for a few days. I have a fiancé who is so active and upbeat and the best support system for me. I can’t help but feel so guilty when my body isn’t quite on the same level as his some days.
I really want to snap out of this but I just don’t know how, when I wake up my body feels frozen to the bed so I end up asleep again.
I’m on amitryptline and just take one before bed, some nights they don’t make me drowsy and I can be awake till the morning.
Sorry to go on,
Hope ur all well x
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D_Alexandra
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D-Alexandra poor you - that is a lot to cope with. I’m not sure about ‘snapping out of it’
That sounds like someone else’s words. Anyway it’s not possible. Learn to handle the bad’ days. Cherish yourself be kind to yourself. I had a brain injury which is an invisible illness and then some. It changed my life completely. I’ve had to learn how to manage it, and at the onset of waning signs just take myself out of life really. On my bed no radio or music just rest rest rest, and then a little - very little yoga. Because being immobile as I’m sure many have said on this forum, can make you worse.
Why are you struggling for routine ? Perhaps high pain days are the times you sign off from lists and chores? Sure, I have times I take my pills and powders and try to eat. Stress cuts your appetite if you’re wondering about that.
I don’t do struggle any more. Struggle tells me I’m asking too much of my body.
Everyone changes during life. It’s a natural human thing. Otherwise we’d never put what we’ve learned into practice. All children change quite vividly- why should we think that stops just because we’re adults?
It’s hard not to want to get back to how we were. But that’s hankering after the past. Our challenge is to deal with how things are now, at this present time, I think.
Sometimes I stagger through feeding the cat giving him fresh water, emptying the rubbish - then take to my bed, keep silent and rest.
It’s not the same for everyone. Others might manage differently, but this is what works for me. I so hope some of it is useful to you.
With every good wish- and sending you courage and strength.
Hi and welcome to the forum I have fibromyalgia 12 years. copd 11 years rumertide arthritis20 year in all joints and other medical conditions I try to get up the same time every day usually about 5.30am .even when I cant get out of bed I force myself to get out I try and do some house work with my wife .we have a shitzu we take home for a walk come back I have a rest after a bout an hour (to get my energy back)I do what I can to help wife she is my rock and full time carer I get tired round about 4/5 I then have a nice bath or shower then I go to bed .I know if I to to much but I dont let it take over my body .try to get yourself into a routine it will work .hope it helps
I think your post will resonate with many fibromites, life can be hard and sometimes it is difficult to accept the new you.
It sounds like you have a good fiance who loves you even on your more difficult days so I really would not try to keep up with him, he has bags of energy, you don't, accept we are all different.
Most of us have trouble sleeping, and like you I have had nights when I have slept the clock round and others where I am still looking at the clock at four in the morning. There is no magic answer I am afraid.
My gp told me to go to bed at the same time and get up the same time even if you haven't had much sleep. Sometimes it works, sometimes it doesn't. I think much depends on what we have done during the day. I have found I sleep better if I have been doing things or seeing somewhere different, also keeping up with friends, although I know that has been hard this last few months.
I am also on amitryptiline and I have learnt if it makes you a bit groggy in the morning to take it a couple of hours before bedtime.
Have you been referred to a Pain Clinic? There is usually a waiting list so if you think it may help I would ask your GP to make the referral.
If you are worried about losing your fitness have you considered swimming, (after lockdown of course) Gentle swimming or aerobics in the water, making or going with friends, and not losing your muscle tone can make you feel heaps better, both mentally and physically.
We are all different and we all have different ways of coping, it is very much trial and error to what works for you. Don't beat yourself up with all the things you can no longer do, look for ways to make life easier, share the chores, keep in touch with family and friends and discover a new hobby that doesn't require too much energy.
There is something called "The Spoon Theory" which has helped many or at least put their life into perspective.
hi and a warm welcome to our community. here you will find information, support, friendship and laughter too. If you are looking for general information on fibromyalgia you should check out our main website at fmauk.org
getting a sleep routine can be difficult - and can take a lot of work and perseverence. My own experience with sleep & fibro is that some nights I can fall asleep fairly easily and sleep for a few hours; other nights i can lie awake until 3.00/4.00am then sleep a few hours. Every so often I will sleep almost round the clock - usually when i'm having a flare up.
Try to have an evening routine .... finish watching TV/ using laptops etc by a certain time; if you take medication - try to take that around the same time. Some people find a bath in the evening helps them relax; maybe a warm drink (i drink relaxing herbal teas - others like a warm, milky drink). Maybe read or listen to an audio book or some relaxing music for a bit.
if you cannot fall asleep - some people find getting up for half an hour, maybe having a drink and then try to go back to bed/sleep. Personally - i will listen to an audio book or just lie and do some relaxation/meditation I find that if i can keep my body relaxed, then i get at least some benefit. try not to stress about not getting to sleep - as that can make it even harder to do so.
I have exactly the same!!! You can't snap out of it you have to be kind to yourself and go with the flow. I'm having a bad patch at the moment, my Duloxetine is helping a lot with the pain and mood. Don't beat yourself up about things you can't do, set small goals and pat yourself on the back when they are achieved and move them to another day when they are not. Life is not a race, we are not a better person for having filled a day, by kind to yourself as you are to others. Keep a diary and rate each day with sleep, activity and mood then when you look back you will see your improvement. It may take a long time, be patient with yourself.😊
Hello, I have cfs/fibro so I understand what days can be like, some can be I sleep off and on all day and it’s not because I want too but my body feels like I have the flu and I generally do not feel well, but most days I generally set tasks and pace by having 10/15 mins before I start again, I know now I could never try and keep up with others, if he is understanding that’s good, go with what your body is feeling ,You are allowed to feel down it can be very much part of theses conditions, I did ask for meds from doctor to help with that and anxiety and that has helped me so much to cope(not for everybody but I got too the point I needed help) sleep can vary I know I tend to have a soak with lavender products, and I use a lot of herbal things like a roll to put on pulse points, and a balm on temples etc and no caffeine after a certain time. Take care and I hope chatting here and reading posts will be beneficial xx
Amitriptyline - if I haven't taken mine by 7.30 pm, I don't take it at all. It's very well known to make you feel groggy the next day and this could be worth trying.
I force myself to get up and go to bed at very similar times (10pm ish, 7. 30 am ish.... Otherwise I'd easily sleep more)
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Fed up with doctors, getting nowhere fast! 
Do you ever get fed up of having no life?!
