Fibromyalgia Action UK
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I have been unwell for over a year sore neck arms hands and loosing grip in my hands dropping thing all the time

shooting pains in my feet making it hard to walk sometimes also consistent pain in my lower back i have caught every cold flu virus that's going and been in hospital twice Sent home each time after a few days like i have wasted their time and no further forward after being at my doctors every 10 days to 2 weeks for a year i have been refered to rhumatoligy and am awaiting a mri scan to see if i have fms or fluid on my spine can anyonegive me tips on living with fms if this is what i have thanks xx

9 Replies

just sending a hug for now (( :) ))

someone will be on tomorrow,



Sounds like I posted that and I have fibro plus arthritis which has just travelled up to my neck, and I keep dropping things. So glad you are getting things checked out. Unfortunately living with fibro can be great if you have what I called a remission and had 7 years of normal life after diagnosis with just painkillers, others and myself now have symptoms almost permenantly but these can be made manageable when you get the right meds... I say right because it is a lot of trial and error as to what suits you... But never give up hope .... There are so many of us out there who come on here and we are all still alive and kicking. If you are diagnosed with fibro it will be life changing not threatening so hang on to that thought


VG x


Hi and a huge welcome to you. Im afraid its usually difficult to get a fm diagnosis, but it does sound like you are on the right track. The symptoms you have are symptoms of fibro but they can also be symptoms of something else. The mri scan will also be usede to rule out ms which again, has very similar symptoms. The rheummy will examine you and talk to you and then hopefully give you some much needed answers. Getting a diagnosis is only the beginning of the battle im afraid.

Hmmmm advice on livivng with fibro......I think there are stages starting with a mixture of relief that youre not going mad and these symptoms are NOT in your head and numbness/shock. Next its the needing every scrap of info going and reading it saying "oh my god, thats me too!" Next its probably the adjusting to your new life and anger that youve lost your old life, learning your new limits and balancing good days and bad days and learning what you can and cant do ( look on here for the "spoon theory") that is a very good way of describing how we feel from day to day.

It is vitally important that you grieve for your old life as you will have times when you feel so angry at everyone and you must gather info for your family and friends or anyone who has a lot of contact with you as having a good support network to lean on will help enormously, but unfortunately not all people have this so if you do then please use them for much needed support.

Go to your Gp with your diagnosis and insist some meds to help you cope day to day with pain. There are many meds available and it takes a while to get the balance right but if you have a good gp it will be much easier.

Meds dont help with everything though and you will find ways to help yourself, i like you, drop things all the time so after dropping so many glasses my OH bought me some lovely plastic tumblers....problem solved! Fibro fog is another big problem for nearly all of us so....have a diary that you write everything in. Have a whiteboard and write everything on it and i have a noterpad that i keep on the worktop in the kitchen and i jot thingsdown every day as i think of helps but doesnt solve the problem im afraid. I walk into things all the time, worktops, door frames etc and i havent found a way to deal with that and i cant judge distances at all so im always falling over, tripping up and driving is becoming a nightmare!

The pains you describe can sometimes be soothed by wheat bags you but from shops or the chemist and you heat them up in the microwave and place on the affected area when resting (rest is soooooooo important!) Pillows supporting you all over your body in bed can help too. I have a v neck pillow and memory pillows between my knees and im lost without them. On this site you will find so many things that people try to ease the pain, go through the archives and you will see so many suggestions for you to try.

The rheummy will probably take some blood. For some reason us fibromites often have a low vitamin D level (myself included) and your gp should prescribe vitamins or if not go out and buy yourself some anyway as they can help with the catching every bug going problem but im afraid when your body is constantly fighting a chronic illness such as fibro, then there isnt a lot left to fight other bugs and illnesses and we are prone to catching allsorts of nasties.

You have already found a massive way to help have found us! This site will prove to be invaluable to you as a source of infromation from pain to benefits and everything inbetween! You can ask as many questions as you like no matter how silly they sound to you and no-one will think anything of it at all and someone will always help if they can. Sometimes it helps to talk to someonw who knows exactly how you feel and this site again is great for having a good moan and cry, no matter how low you might be feeling...share it with us and you will never be judged or thought ill of here.

This site is good for a laugh...i must warn you....some of us are plain crackers and the daft blogs that go on will make you cry laughing and will make your day!

You will make some good friends on here and the admin always have lots of info regarding benefits which they will send you, should you need it

All thats left for me to say is a huge welcome to our lovely site and please keep in touch to let us know how you get on and you can always private message me if you feel too shy or unable to write a blog but need a chat, moan or advice...Much love....Charlii xx


Hi Charlie , may I say a big thank you from all us fibros out there for how wonderfully you've summed up life with fibromyalgia , I've had it for 13 yrs and I sure wish I had been able to read a blog like this when I was diagnosed ,because I wasted yrs trying to fight my way through life which only made me worse!!!! If I had understood it better from the beginning I could have saved myself a lot of heart ache !!! I truly thought I was losing my mind !!!! I'd already lost most of my friends !! They thought I was a hypochondriac !!!!! My I laws still do !!!!!!! I now accept my illness is a part of me I've grieved for the old me !!! I still miss her , but understand that she's gone !!!!! , I now reward myself if I achieve one thing a day it may only be the ironing but I am pleased I can still do that !!!!! A far cry from the days of old !!!! But it makes me feel good to do something !!!!!!!! And I've taken up baking got a heavy duty machine to do all the mixing but the end result is fabulous !!! And it feels good for me to hear that people love what I bake , makes me feel happy !!! I wouldn't be able to do it every day but when I feel ok I tablet up and go for it then I rest !!!!! That way I feel as though I'm usefull in some little way !!!

Any way I've completely lost track of why I started to write this !! Ha ! Ha! Fibro fog !!!!!!

Thanks again Take care out there. Xxx


Thank you all so much for all the info and time you have taken to answer me xx just been back my docs again as dropped the kettle and burnt myself this morning so they started me on med omeprazole, dihybrocodeine and amitriptyline so will see how i go with these until my appointment in Feb with the rhuemmy xx


Hi, I could easily have written what you wrote. My GP has told me it's fibro but will have to have this confirmed by rheumatologist. I am on Arcoxia for when the low back pain gets really bad also Amitriptyline at night and paracetamol and codeine when needed (most days).

I have no appt yet for rheumatologist yet but I do think I have fibro and probably arthritis in my lower back as MRI has confirmed a year ago it was starting in my neck.

I have found this place great for advice and cheering me up, letting me know I am not on my own.


ps I don't have much advice about how to cope as it's only been a month since my GP told me he thinks it fibro. I met with someone I know the other day whom I haven't seen in ages, she has fibro and she told me that it is hard to deal with, I will get down days but her advice was, get on top of the fibro and don't let it get on top of you. Already I have started to make little changes, but it is babysteps. Best of luck xx


I feel less crazy now that i know its not all in my head and there are other people like all of you going through this aswell i felt like a hypocondriact as everyone keeps telling me that i need to just get on with it and if there was anything seriously wrong the doctor would have found it by now. I have been off work for the past 11 weeks and as i am divorced with a 5 year old daughter my mum has moved in to help me in the mornings get her ready for school as some morning i can't move no matter how hard i try i feel like im not in control of my own life anymore and i think this is the hardest think for me to accept but am starting to come to terms with things thanks everyone xx


hi there ,

i started with all this when my neck went in 2011 and the severity was over whelming i get everything you have should i say i have everything you say i feel riddled in it all over and the feet too the pain when walking and gritting my teeth so no one can see as i feel such a wuss lol but it affects your day to day activities it even affects sitting and standing too.

i had confirmation of my issues via MRI scans so made more sense but then after such a period of hospital visits and Dr visits it became apparent my symptoms were not being caused by the neck issues as widespread like margarine on a slice of bread here there and everywhere picking on certain parts more than others at times.

you feel riddled in it.

hugs xxxxx caroline


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