Any tips on living with fibro

cb2

hi
i am new to this site so hope i am doing the right thing, i just wanted to say hello i am Claire 41 and back in march i was told i have fibro and sleep apena as well really bad headaches( about 8 headaches a month if not more) i have been unwell for 4 years now but the doctors have only just believed me, i joined this site to see if there is anyone on here with the same as me, and wanted to ask people i don't sleep very well i wake up at least 6 tines a night if anyone else is like that what do you do if anything to help you sleep?
Claire :!:

stickywicket

Hello again, Claire. I'm glad you made over here to LWA. I hope someone'll be around soon to help.

Folara

Hi Claire

Urgh Fibro - the bane of my life. I haven't slept properly for years, that was until I got the Amitriptyline, baclofen and pregabolin up to the right levels. You really need to get your doctor on your side. See if you can be referred to a Pain Clinic as well. They are really good and have vast experience in dealing with fibro and how it affects us. You need to try to catch up your sleep in the day whenever you can and DON'T feel quilty about it either. The headaches can easily be attributed to the fibro due to the muscles going up to your head get all knotted etc. I get terrible migraines now that I didn't before. Oh and painkillers don't really work, you need stuff like the baclofen etc that relax you as the pain is caused by your muscles etc being in constant spasm and pulling against the bones etc. if you can relax these muscles then you can stop the associated pain.

Fols x

frogmorton

Hi Claire

there are loads of folks on here who have fibro and I am sure more will be along soon to chat to you. In the mean time you could do a 'search' (top right of this page) I think there are umpteen threads you can browse.

I am so sorry about your diagnosis I know fibro is really hard to live with - my ex MIL has it and she really struggles. Sleep and memory loss as well as pain.

take care

love

Toni xxx

bubbles

Hi Claire, good to meet you and welcome to the forum.

Many of us have Fibro and fols has given you good advice. You do need a Dr that is working with you to get you to a level that works for you. It can take a while, but there are drugs that help, they don't make it vanish ( I wish ), but they do help. I was told I had Fibro or chronic widespread pain syndrome, whatever name, you have to have it, to believe how it can affect you life.
Being virtually unable to move, like hitting a wall, confusion, changes in sleep, changes in mood, pain that will not go away, the list seems to be wide and varied from person to person.
I get to a point in the day where I just have to lay down, then I cannot sleep, despite being utterly drained.
I take amitryptiline, diazepam, pregabalin, co codamol and tramadol, to keep as much as a lid on things as possible. The diazepam is good for helping to relax your muscles, a bit like baclofen, but vallium helps to relax your mind as well.
Have a good chat with your GP and ask for the help that you need. Take lots of care and keep us posted. XX Bubbles

Harlansmummy

Are you taking any medication?

I have recently started on amitriptyline which I take at night. It doesn't help me get to sleep but once I'm asleep I am a lot less restless, wake up less etc. It might be worth enquiring about.

Also, are you waking because of pain or just because you don't sleep well? If it's pain then it is worth experimenting with pillows to prop you in a reasonably comfortable position, and things like a decent mattress, hot water bottle, room at comfortable temp etc can all help a little.

cb2

thank you for your advice i am going to try all of it, sadly my GP is the best i went to a pain clinic back in march and i am waiting for a place to have 6 weeks of therapy, plus i will get to talk to a Councillor which will be great, as well as fribo i have sleep apena so i have to wear a mask at night which sometimes doesn't help me sleep!!
i take pregablin and amitiptyline (70mg) my doctor will not up my pregablin until i have been to the pain clinic ,
thanks again for all your help

barbara12

Hi Claire... welcome to the forum
Sorry I cant help with fibro, but I know how you feel about the not being believed, there are quite a few on here that have had a battle with there doctors.
I can see you have got some advice off the others, you take care and I hope you get the help you need xx

cb2

barbara12 wrote:

Hi Claire... welcome to the forum
Sorry I cant help with fibro, but I know how you feel about the not being believed, there are quite a few on here that have had a battle with there doctors.
I can see you have got some advice off the others, you take care and I hope you get the help you need xx

thank you
claire