Help …!! Exhausted

[Willzd]

Hi All,Hope everyone is well.I’ve only posted once before so please bare with me.Official Fibro diagnosis last week after suffering for some time.As I expect most of you do I have good day,bad days & horrendous days.Pain today is at a high but exhaustion these last few days is awful.I am struggling to keep my eyes open and can’t bare to get out out of bed.I am so frustrated myself,I literally feel so useless!!! Any advice welcome.Sleep sucks as pain in my hips is horrendous.i am just ranting sorry.Fibro carry’s so many symptoms I hate being me.If I’m not in pain I’m bloody exhausted or both 😩

[golly123]

Hi. I've just been diagnosed with this too. I am absolutely exhausted and fed up with the pain too.

What I find helps me sleep is zoplicone 7.5mg. It's addictive so I only take it every 3 nights if I can. It depends on what I'm doing. I take it about 10pm. I wake up the next afternoon - yes THE AFTERNOON around 1 or 2 pm. And I feel better.

Hope this helps.

I send you my very best wishes Jo

[Willzd in reply to golly123]

Hey Jo,bless you it’s awful isn’t it.I try so hard to stay positive but some days just ruin me mentally & physically.My brain & body won’t let me move 😩 I haven’t been offered anything for sleep I used to take amitripaline but it had a horrid effect the next day.Thank you for your advice I shall bare it in mind.I work 30 hours a week & even that is a struggle.I absolutely love my job and need it for my mental health.Wishing you well Jo keep smiling ☺️ 💗

[golly123 in reply to Willzd]

How you keep on working is amazing. Well done you. If you are working it might not be a wise idea. They might be able to give you a weaker version. Have you tried gabapentin? There's another similar one I think instead of the amytriptaline. Naproxen - it's an anti-inflammatory - they normally give you omeprazole to take with it to coat your stomach.

I can't take any of these as they clash with my other medication. I'm just on prescribed nefopam - a painkiller which I take 3 x 2 tablets a day or I sometimes take co-codamol at night - not every night.

I think one has to try and hopefully get the right balance which will work for them.

Positive mental attitude. I try - it mainly works. Got zero sleep last night again.

You are doing amazingly well. Hope your sleep goes better soon. Have a lovely day too. Best wishes Jo x

[Willzd in reply to golly123]

Work keeps me going mentally .I take regular tramadol and gabepentie ibprofen omprozole even oralmorph at times.Pain still there.I have a review soon & they are adding in another med (can’t remember name something line on the end 😂)

I’ve used naproxen before.

It is defo trial & error with meds.

You poor soul zero sleep.Lack of sleep then rules your day & makes things worse.

I do feel for you and send you positive vibes and strength.

I am now trying to get out of bed and go out with my daughter to the cafe 😍everything just seems so hard 😩

Take care of yourself and continue to to help positive.

Thank you so much ☺️ Xx

[golly123 in reply to Willzd]

What a lovely person you are. Thank you. Have a lovely time with your daughter.

Can I ask your opinion on something? I'm think of setting up a meet up for FB sufferers for want of a better word. In Warrington Town centre. Maybe in a pub or cafe every week, fortnight or a month. I'm still using a crutch but I can get there. Do you think it's a good idea? A good way of making friends and general support too.

I'm not sure if it's a good idea? Any advice would be appreciated. We could all maybe set up groups in our local areas possibly. Or is it a really bad idea?!

Have a lovely day. Best wishes Jo

[Willzd in reply to golly123]

I think it’s a great idea.Meet monthly in a local cafeteria a great support network.Some times I don’t want to leave the house so something like this is a purpose for others who feel this way.👍🏻A support circle where you can share stories,advice,even just a listening ear.Very thoughtful Jo 💙

[Anita1983 in reply to Willzd]

Amitriptyline is good for sleep. Next 3 to 7 days I feel very sleepy next day, however after everything back to normal. I didn't increase a dose after one week, l took one tablets 6 weeks and after l increased to 2 tablets. Hopes this helps 😊

[Hope164 in reply to golly123]

Hi, used to be the same. Try taking half a tablet, it works just as well xxx

[scotsgirl21]

Hi i have tremendous pain in my hip left hip all the time nothing takes the pain away and to makes things worse i slipped on yogurt at supermarket and have a groin injury in the other leg so walking is a nightmare so i totally get you my mum keeps trying to give me her stick but i’m only 47 taking this fibromyalgia so hard i’m so fed up 😓😓

[Willzd in reply to scotsgirl21]

You poor soul.Please keep smiling.I sometimes use crutches for weight bearing 🙄I’m only 38 and am too taking this so hard.Today is a horrendous day.i can’t physically or mentally get myself up.I feel for my family I just feel so useless.Pain is taking over my life 🤦🏼‍♀️Sending you well wishes 💗

[scotsgirl21 in reply to Willzd]

aww that’s why i love this page because everyone has the same symptoms or had them and we just pick each other up dust us off and keep going it’s really hard just feeling it more today thank you for your kind words ❤️❤️xx

[PenelopeClearwater]

I could have written this! I’m new to fibro, too… well, a recent diagnosis, but it’s clear all my issues over the last decade have actually been fibro. And it seems to be getting worse.

All I can say is keep coming here for support - this group gets me through some really dark days. I get so tired and in so much pain that I don’t know what to do and there are always wonderful people here to listen and relate - just sharing with people who understand is amazing therapy for me.

Also, this article really resonated with me:

creakyjoints.org/about-arth...

Obviously it’s important to get info from professionals, but my main source of info and relief is this forum (with excellent advice from the charity and from people with the condition) and articles etc written by fellow fibro warriors.

Sending gentle hugs and really hope you give yourself some leeway and allow yourself to switch off x💙

[Willzd in reply to PenelopeClearwater]

Thank you for your words of support it is much appreciated 💙Really does help to know others can share experiences and I’m not alone.Hugs right back to you 🤗

[butterflygirl1]

Sorry your struggling hunni but please be kind to yourself it's okay, your not alone your having a flare and all you can do is rest, it's a horrible condition but it's a rollercoaster ride and flares are awful but it's not your fault, just breathe, step back and REST! I am in the middle of one right now, inside my body is screaming, I had a good day and did too much doh! But I know all I can do is rest, take painkillers etc. The more I fight it the worse it gets, I am very blessed to have the most amazing husband who gets it but still forgets that I have this fibro party in my body all the time, but we just get on with it as best we can. Sending big fluffy, gentle hugs x

[Willzd in reply to butterflygirl1]

Your words are absolutely spot on.Thank you so much for those words of support.I am my own worse enemy I do not do rest well & I think that’s why I struggle so much when having these “flares” I feel such a let down to everyone else around me.I haven’t made work this morning as feel so wrecked.Am aiming to go in this afternoon/evening for a little while.My work is amazing and keeps me positive.I have an amazing support network around me it is me,my mind battles with itself.Feel such a failure!!! 😫😤I think I am still getting my head around diagnosis and hate the fact I feel as though I’m so young!

Anyway rant over.Thank you so so so much for your response it really helps hearing from those in the same boat.Really is such a support.I hope one day I can repay the words and support to yourself .Take Care and keep smiling.Hugs accepted and sending right back at ya x💗x

[fibrogirl41]

bless you x I feel your pain. If you would like any support groups there is The National Fibromyalgia and chronic pain association and an online community on inspire. com. I hope this is helpful and don't give up. 😊

[saj01]

Hi... Don't know if this is of any help to you but might be worth a try taking melatonin....to promote sleep in a more natural way- there's a mention on the fibro org site about it. Haven't tried it myself, so would be worth doing some research on it. I'm not on any meds apart from otc painkillers and have increased magnesium, potassium and cq10... just wish I could get rid of the fog and find some energy. I want the old me back again.. even though she was a miserable old moo at times lol!This scourge is so debilitating for us all.I thought your idea of trying to contact people locally is a great idea, as you know yourself, what it's like and will be more supportive and understanding.

Take care, be kind to yourself. x

[NPR1]

Hi, you sound like me 2 years ago and by then id had fibro 10 years. I hope that with the help and advise both given and received on this site will help us all understand ourselves a lot better. Saj01 have a few good suggestions below with the mag, pot and cq10, i cant afford all of these but do use epsom salts at least three times a week. If you have or had a desk job like myself a few years back i had physio for the hip and pelvis pain and they used their elbow dug right into to the muscle going from above your pelvis running down the side to below your hip, it felt like a hot poker and was so painful the therapist wanted to stop but i made him continue and walked out of his room with no pain in my hip, to maintain this you need to regularly stretch this muscle. I also demanded an mri and that showed up that i had multiple slipped disks and some nerve damage. I also sleep with a small pillow between my legs which gives a hell of a lot of relief to the pain. I learnt one exercise a few years back to strengthen your to main muscles which run at the front from your lover abdomen to your lower hips and by doing this alone every morning and every evening helps more than any other exercise.

The reason you sound like me 2 years ago is that i couldnt stop listening to my negative self which had taken over and consumed me with anger, depression, self loating, pathetickness and a total lack anything positive for myself. I asked the GP for help to put me onto someone who can help me with my mental health as i just wanted it all to stop.

The main things i took from this was nothing that i didnt already know but it really helped to talk to someone who felt like they were on my side and unfortunately the GP is not that person for me.

Through this training i was able to carry on with my life with the following outlook:-

The way you feel about yourself makes a huge difference to how you can manage pain thats why we keep getting offered anti-depressants but im not depressed i have a depressing disability, you know when you look deep into your eyes in the mirror you are searching for yourself or staring into a bath or crying when you are alone, dont ignore these signs, this is where you need to speak to someone. It helped me to grieve over who i had lost and who i had become, i left work, now i have time to look after myself and try and learn how to relax and not feel like im slacking off and it helped me be kind to myself. The way i hated myself for not being able to do simple tasks like open a jar was so extreme it took ages for me to look at myself and smile but i put a few more mirrors around the house so that when i looked into it and saw my pain face which looks like your ready to lynch someone lets be honest so i tried to smile. Pain doesnt necessarily mean damage, stop for a while, slow down but dont stop altogether, i have to alternate between sitting and standing and walking, cant do any of them for too long.

I use CBD oil or patches, when things are really bad and i cant sleep for weeks i take half an amitriptyline so 5mg and a couple of paracetamol about 6-7 but i dont take them everyday as i need to feel my pain and work with it. Saj01 has mentioned melatonin i have asked about this but my GP has told me i would need to go private to get this checked??? i know that the more screen time you have without blue light glasses along with artificial lights deplete your melatonin and considering that most of us look at a screen for about 40 hours a week at work then this should be something that they check regularly.

I hope some of this helps, i have loads more tips and advise on previous posts if you would like to have a look but the main things to remember is be kind to yourself, learn what your triggers are and use herbs and food wherever possible they are amazing, oh and Arnica gel, not the one from the chemist i couldnt live without it. X