struggling with fibro pain and unable to sleep

polly1985 · 30. May 2011, 18:26

hi, i've been off the radar for quite a while, but i really need to speak to people who know where i am coming from. My mum does try but she cant understand the depths of it all,she cant understand why i cant just pick myself up and get going, and now i am not allowed to talk about pain at all in her presence.

Arthritis affects my lower back,but now have been told i also have fibro, which at moment is affecting my neck and shoulders and why im so low. I am at the point where i feel i cant cope, but i think this is mainly because i cant get proper sleep - i cant get comfy for more than 5 or 10 min i try different pillows, positions, sleeping on sofa ect ect but nothing is helping, ive been for massage.

I just dont know what to do where to go who to turn to. completely lost and cant function properly. Any advice on coping stratagies, techniques, treatments ect ect would be most appreciated.

Thanking u in advance of replies xxxx

Poppyg1rl · 30. May 2011, 18:46

Hi Polly,
I don't have fibro but do have PA, which is affecting amongst loads of other joints my ribs!! Which means trying to sleep is nigh on impossible, so I do sympathise with your predicament.
Also it doesn't help that your Mum is less than sympathetic, speaking as a mum, it really hurts when you see your children in pain and you can't do anything to help....maybe that why you're Mum is behaving the way she is?
May I suggest a trip to see your GP? I was in hospital with breathing difficulties due to a reaction to Humira which damaged my lung,which then kicked off a huge flare in my ribs :evil all in all 4 weeks of little sleep as I wake up in pain at the slightest movement of the ribs, if I turn over, cough, etc. My GP prescribed a short course of temazepam to help me sleep, which has worked

I'm due to see him this week to discuss what else I can try as long term use of it us not recommended, but I can
honestly say it's worked for me and I'm very grateful for that.
See your GP and explain fully how you're feeling.
Best of luck, thinking of you and let us know how you get on? Xxx

dreamdaisy · 31. May 2011, 03:25

You don't mention any of the meds you are on, have you asked about amitryptilline? I understand that this acts (at the dosage we have) as a muscle relaxant, and those of us on here who take it all report better quality sleep. It may be worth mentioning it to your GP, see what he says. It should be taken somewhere between 7 and 8pm, that way you don't wake up feeling all muzzy. DD

polly1985 · 31. May 2011, 05:43

Thanks guys for your replies. I might relent and go to gp again but i just hate having to keep going back and fore. this is best gp i've ever had, for years i had no diagnosis and basically told it was in my head but moving practice helped and this gp was determined to get to bottom of it which she has. but i still have fear she will tell me where to go.

but maybe a trip is in order, so you got temazepam as a short term fix poppy? are you still on them or once you stop taking them does the no sleep suddnly start up again?

DD, i am on dihydrocodiene, paracetamol, amitriptyline (75mg), Pregabalin (150mg), Sertraline (50mg - got very depressed) and short term diclofenac as i cant take them too long cos of stomach problems.

I think my mum cant cope with the fact that i never know what is going to be sore when. when she speaks to other people she shocks me with her views and support and behind me 100%, but she wont show that side to me. i know she prob thinks she is helping me by "if we dont discuss it you wont think about your pain and you can get on with your life" but at the moment i cant get the pain under my control and im struggling.

Has anyone been to hydrotherapy? what actually is it?

Oh and poppy that time you were in hospital sound terrible, it must have been a horrific time for you. :sad:

thanks xxxx

bubbadog · 31. May 2011, 05:54

Hi Polly, I have Fibromyialgia as well as Osteo-porosis(sorry for spelling!) so understand where your coming from. I have had a problem with sleep patterns and pillow trouble! The 1st thing you need to look at is your pillow, I tried loads and I settled on a pocket sprung pillow, it is very suportive on head and neck. But the best thing is to go to a bed shop and try the pillows out. The reason you can't get yourself going is because of the fibro unfortunetly. Your best thing is trying to relax as you say massage is good if it doesn't upset the fibro area's. But I try and spread my day, computer till 12pm then lunch then relax rest of day, maybe a siesta for an hour or 2 read my book or cross stitch. Unfortunatly the Fibro is in control. It tells you how it wants to be each day. As for your mom that is not nice, mom my is the same, it's their way of coping with the fact their daughter is sick!! My OH is the same!! That is why I am glad to have this place. If you ever wanna talk just private message me. Hope this helps alittle. Big ((HUGS)) . Amanda.xx

Poppyg1rl · 31. May 2011, 06:06

Hi Polly,
I do think your mum maybe struggling to come to terms with it all, have you told her about how her behaviour makes you feel? Can I suggest you give the helplines a call here? (number is at the top of the page) they are fab and full of helpful advice, they will also let you talk and cry if you need to. I don't take temazepam every night, the short dose is simply to tide me over this latest rib flare, it will die down...eventually

I'm a mum to three boys it's not practical to dose yourself up every night

I wish you well Polly, keep talking to us, and maybe give the helplines a call? they have more resources and knowledge than I do

Sending hugs your way xxx

polly1985 · 31. May 2011, 06:34

Thanks amanda, its just that everything has changed so much in last 18 months. i was a nurse and always busy and was able to cope, kinda, with pain but then more and more and more pain appeared i had to give up work then i tried other types of work but the arthritis and the fibro just take over and wont let me get going, my mind wants to do this and that and the next thing but body says no!
Thanks for the offer of PM and if you ever need to talk then im here too.

Pauline xx

It can be quite difficult to talk to my mum about how i feel. yeah i might try the helpline number, thank you. Someone listening and understanding makes it feel better so thank u all guys. xx
Going to phone gp and see if i can get an appointment this side of xmas. xxx

dreamdaisy · 31. May 2011, 06:49

Oh, so you are already on the amitryp: sorry, fresh out of ideas then tho perhaps a larger dose could work? If your new GP is supportive and encouraging then I think the best thing to do is have a natter with her and see if she knows of anything else you can try.

Re your mum: it is difficult, my mum does not really understand what dealing with this malarkey is like, I have just started a short course (and I am determined it will be just that) of anti-depressants and, wisely, have not told her. I don't need a lecture about my lack of backbone and positive thinking working wonders. Arthritis and its chums hits everyone in a family, not just the sufferer. Your mum could equally well be struggling with it all too. This is not an easy situation for anyone to deal with. DD

jilly · 31. May 2011, 08:53

Hi I have fibro ,arthritis and inflamortary arthritis , i find sleeping really hard for the last few months i have sleeped on the settee which is not a good idea. I have been given pregabalin lately and it is helping ,Ihave had amatriptaline but they didnt help me. I find my neck and shoulders are the ones that keep me awake mostly.

As for your mum my mum isnt with us anymore but my dad at age 84 is really bad to be around when i am in pain . All I get is '' I'm 84 you are still young '' I am 61 so he thinks i should'nt be having any pain.
I would ask about the pain clinic they helped me a lot .Hope you sort it soon i know how it gets you down........................jillyxx

bubbadog · 1. Jun 2011, 06:34

Hi Polly, I understand what you mean about trying different jobs, I tried working doing some voluntry work as a P.A as I wasn't nailed down to set times I did as much when I wanted. It started off fine but after a couple of months the pain was too much and I was exhausted. And it was my doctor who said enough is enough because my blood pressure shot up! Day by day it is hard, and you just have to learn to listen to your body (an old friend taught me that! it is one of the only things I remember of her, because she was right!) your body will tell you how it feels and how much it can take. And as much as you might want to do more if you don't listen you will pay for it big time the next day! I have done too much many a time and the next day I'm no good to anyone!

Hi Jilly, Nice to know another person with Arthur & the dreaded Fibro. I have some good nights sleep and others bad. Of course it's down to the pain and other things like pillows and the bed it's self! We have a new bed and I have changed my pillow to a pocket sprung pillow. Yes I have found changes I am more comfortable and the pillow is supporting my neck and head alot better, but I am still having broken nights sleep due to the pain. I hope you find the happy medium and something to do when you can't sleep, I have a magazine in my bottom draw I just lean down and grab it. Soon sends me off to sleep again. As I said to Polly, Jilly if you ever wanna chat just PM and I will look forward to chatting with you.

polly1985 · 1. Jun 2011, 17:51

thanks for all the replies. id wrote this reply out already and lost it all, nightmare. Physio came round today so got more exercises to do to help with the tightness ect. she thinks there are still alot of problems coming from shoulder from when i fell. falling apart. away to try and get comfy in bed, fingers crossed i drop into a good sleep. xxxx

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