Fibromyalgia Action UK

Health now affecting my working and home life

Hi All, looking for some positive words from all you supportive people. My first post but read many with interest daily. 5 days of pains, headaches and anxiety / frustration. I seem to be on a downward slope meaning I take to my bed during the day and stops me doing the job I love. # I work from home. Hubby does most of chores too but I feel a non human like this. Neurologist next week .... Would love to fell there is light a the end of the dark tunnel xx

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Hi BDH2 and welcome to our friendly group. Have you had a diagnosis of fibro or are you still on the long road to diagnosis? Fibro is very different for all of us and some of us still work fulltime and live busy lives and some do not. Some take medications and some rely on alternative treatments. There are no hard fast rules to this illness except "learning to pace yourself". Easier said than done but for me it is the key to being able to work. Not to say I don't crash and burn because I do. It's human nature on days where we feel well to do too much. Only you will be able to understand your body and work out when enough is enough to avoid the pitfall. Take someone with you to your appointment and make notes before you go so that you can discuss everything. I find that I forget to ask things if I don't have the list in front of me. I am sure there will be someone along in a minute who can be of more assistance than myself. Take care and let us know how it goes.

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Hi there BDH2. Managing this Fibro thing if that's what you have been diagnosed with, is about finding a regime that works for you which can be a bit daunting. But there is one for you and you will find lots of advice and support on here. Along with your GP- find a good one - I have found an experienced Nurse Practitioner to be of huge help for random symptom control and use my GP for ongoing long tem reviews and referrals - you will need to work for the light at the end of your tunnel - which sounds tough but on your good or better days it is possible and there will be better ones than today! I have certainly had days of flare up - in one now - but know that in a few days, if a practise all I need to do for me - it will pass. I work from home too so know how easy and necessary it is to have time in bed sometimes in the day. But I have found over the months the more I keep up and am a little active during the day, the better I might sleep and keep from spiralling downhill with depression from not being able to achieve anything. just adjust your expectations of what you can do until you feel a little better.

Lets hope your neurologist is helpful and do write down all you want to say and ask - and have someone with you.

Can't recommend highly enough: warm epsom salt baths, practising meditation and 'This Works' sleep pillow spray, and accepting help from others. Just 4 of the many things I use to keep the lights on!!! Take care of yourself and don't beat yourself up for feeling ill - do acknowledge that you are bound to feel low until you find your way through the tunnel.

Let us know how you get on.

Ann x

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Good Afternoon BDH2

I'm really sorry to hear that you are struggling with your fibro and what sounds like a Flare at the moment. I can completely understand how frustrating this is and how it feels like a downward spiral when you are stuck in the middle. I'm not sure what kind of medication that you are on, and also what you are doing that isnt medication based? For me Epsom salts in a really hot bath, magnesium spray and also my TENs machine are a huge part of what I need to survive! Also pacing is another key part of beating this illness, I am actually in the middle of writing a post about pacing so hopefully that will help you! xxx

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Just like to say welcome to posting. Others have given valuable advice. Went add to that apart from saying there is life after diagnosis. It isn't always the one we planned but it can have compensations. Now I am slower I have more time to take in the world I was often too busy zooming everywhere to cherish each day. Hope that your appointment goes well.x

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Thank you all !! Hi Dinkie, it truly has been a long road of testing, more testing / x-rays etc and this will be my first neurologist appointment. Work can be famine or feast so the crash comment makes sense to me for this period. Thanks Ann, I guess after finally hearing the F word I've come to find this supportive community and so pleased I reached out to you all today, smile restored - the magic words "manage expectations". Cheers Danielle, i'll look out for your PACING blog ! Thank you rosewine, definitely not what was planned, i'll take a deep breath. Once again thank you everyone for getting back to me so quickly on my CRASH DAY xx xx

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Hi there BDH2 welcome to our group, I am glad you took the plunge to post. I am sure you will find many friendly and willing people here only too happy to help support and share their experiences with you.

I t does sound like you may be going through a bit of a flare at the moment like our lovely DanielleGemma already mentioned. I know Fibro is awful and the flare ups are the pits. I myself have been dealing with a mega flare for the last 2 weeks so you have my complete sympathy and understanding with that.

Have you taken a look at our mother site it has a wealth of information you may find helpful.

fmauk.org

Please try and take it easy there never seems to bee any one time limit on a fibro flare it differs from person to person. I hope yours will be short in duration xx

Mo

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