Recently diagnosed & struggling

Recently diagnosed & struggling

Hi everyone

Only just found out I have this horrid condition so still getting my head round things & trying to be positive ( which i am finding really hard as I ferl so low). I have pain most of the time ( even lying in bed hurts) feel drained & nearly fall asleep through the day, but never stay asleep, & wake up every morning between 3 & 5.

My hands shake a lot & i get bad muscle spasams/ jerks/ twitches, really bad cramp in my feet/toes. I am 53 & usually a very active person with 9 Grandchildren, I care for my elderly dad & work as a residential practitioner( a very stressful job, and off sick now) Luckily I have a supportive husband & family & I am putting on a brave face.

Back at GP next week so hopefully some things will be put in place to help, my be change my antidepressant which I have been on for yrs, physiotherapy? Etc ,

Any advice would be good as I feel so lost

Kind regards Diane

6 Replies

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  • Hi Diane,

    so sorry you have become "one of us"! Take your time to get to grips with Fibro. We are all different so there are no hard and fast rules for everyone.

    My advice to you is to pace yourself in everything you do. Your fibro will unfortunately give you bad days, not so bad days and okay days. If you get up after a reasonably good nights sleep don't rush at things like a bull at a gate. Do a bit, rest a bit and be kind to yourself. If you cant do anything so be it. I know it is hard for you with all your commitments to do but you must pace yourself, if you don't you knock yourself out and you really will feel miserable letting your family, but mostly yourself down. I seem to be rambling sorry.

    You say you suffer from a lot of pain and restless nights. Have you got a good GP (I do hope so) whom you can talk to openly and honestly ? See if your medication can be adjusted to improve your quality of life i.e. less pain more restorative sleep.

    It is a great community here and I am sure you will get loads of good advice. Look after yourself Honey

    Ian B

  • Thanks so much Ian x

    Not on any medication at the moment for the fybro so hopefully when I see my GP on Tuesday I will be given something for the pain etc

    😊

  • Hello and welcome to our lovely forum everyone's supportive and caring here.

    We are here to support you on your journey.

    Please take a look at the homepage there is information on the right pinned posts in blue if you cant see these because you are on mobile let us know.

    Please try our mother site fmauk.org there is a great deal of information available.

    Good luck my friend

  • Hi Smithdian

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read that you are suffering and struggling and I use a TENS Machine when my pain becomes too much. I was wondering if you have tried anything like this yourself? I have pasted you a link below to the NHS Choices cache on this:

    nhs.uk/conditions/tens/page...

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • HI Diane. How are you ?????

    I really meant to drop you a line on Tuesday evening but Fibro fog, pace of life, getting ancient,dementia and gastric reflux all got in the way !

    Oooops just had a thought (which is rare for me). Hope you don't think I am stalking you. As a 62 year old gay guy in a relationship for 44 years (would have got less for doing someone in!) that just ain't gonna happen honey.

    My interest is you as a newcomer to the dreaded Fibro.

    Did you get to see your GP? Did he come across as being caring? Did he leave you with any questions that I maybe can answer for you.

    Boringly I was a SRN for many, many years and my area of expertise is dare I say it very good. I was diagnosed (after 4 year rattling around various Rheumy Dept's) with Fibro (aka Fybro). I have all the symptoms (except for Ladies problems) in the ruddy book.

    Anyway, in short my brain and hands are open to you should you like or need any help.

    Please keep in touch. Keep Happy, keep healthy

    Kind regards

    Ian

  • Hi there

    I am so sorry to hear that you are feeling as low and as bad as you are .

    I can only tell you how it makes me feel having been diagnosed over I think 5-6 years ago now.

    I have periods of time when I am very low and in a lot of pain and regardless of how tired I am during the day I do not sleep at night .....

    I can also go through long periods of time in pain too .i can hardly move at times and feel really bad in the fact that every bone in my body is aching even bits of my body's with ok pain ache .

    I have tablets for the pain but they make my throats very dry and because I have sjogrens I don't take my pain killers .. but to be fair the pain killers only make me sleepy noting ever relieves you of pain I feel..

    I wish you good luck.

    Gentle hugs

    Aud xx

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