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Fibromyalgia Action UK

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Needsleep profile image
Needsleep
β€’12 Replies

Hi, I'm new to the site having just being diagnosed with fibromyalgia and chronic fatigue...I guess for me it was a relief because over the last few years I have felt so unwell and gradually getting worse...I tried to hide it because I honestly thought I was developing dementia... ( I nursed my Dad through it) I was a university lecturer and slowly but surely realised I was forgetting mid way through what I was lecturing what I was actually talking about...I was struggling to carry my books and struggled to get from my car to class...rather than confide in anyone I left...it felt better than facing what I thought was happening to me...I began to be slower in everything I did...my body felt like it was burning after only walking a few steps...every muscle ached... My head ached...my fingers and toes felt like constant toothache...I couldn't think straight and began to isolate myself because communicating with people was too hard...and I just couldn't be bothered...sleeping is a dream...my body can't control its temperature...I'm too hot or too cold...covers on...covers off...fan on..fan off....if I do manage to fall asleep...the pain or heat wakes me...standing in the shower is hard but a bath is harder and washing my own hair is a thing of the past...my friend does it now...I am more than tired most of the time...and find it hard to describe to those that don't know it...I guess on here you do...I don't need to...I am self employed and the ability to do my work has got less and less and there is no way I can work on a morning...by the time I actually come round from any little sleep I have had...un scrunched my body and straightened it out....actually got moving its nearly lunchtime...so I work from 2 ish until 8... And by that time am exhausted,,,in pain...can barely hold my head up and literally collapse when I get home...I live alone...so scared I will lose my house because I'm behind with all my payments...for everything...I honestly don't know where to turn...I am so sorry for this long post...just needed to say something to others I know will understand...my family don't....

Thanks for listening

πŸ˜„

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Needsleep
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TheAuthor profile image
TheAuthor

Hi Needsleep

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 genuinely hope that you find the forum useful, informative and loads of fun!

I have pasted you a link below to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information:

Fibromyalgia Action UK

fmauk.org/

I am so genuinely sorry to read that you also have Fibro, and all of its horrid components and traits, and I sincerely hope that you can find some resolution and relief to your sleep issues. I was wondering if you have spoken fully to your GP about this? As some of the medications that are used by GPs for Fibro contain sedative elements and may just help you to sleep?

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

Needsleep profile image
Needsleep in reply to TheAuthor

Thank you Ken...I have been given diahydrocodeine and nepraxan I think it's called...but spent the week end being sick so don't think they agree with me...I feel it's going to be try and test for a while... its so frustrating...just not being able to do all the things I want to...but luckily feel too tired to care most of the time....probably not the right attitude....but I guess I am at the beginning of a journey many are already on...just waiting for my fighting spirit to kick back in...it will I'm sure....feeling sorry for myself I guess at the moment...

πŸ˜„πŸ˜ƒ

TheAuthor profile image
TheAuthor in reply to Needsleep

Hi again,

I am so genuinely sorry to read that you are not getting on with your medication. If it is ''Naproxen' then it may be best to speak to your GP as they are a very strong (NSAID) Non-steriodial anti-inflammatory drug which can cause ulcers and burn the stomach. So if they are making you sick I would get this looked at just to be on the safe side?

One of the main Fibro medications that may be worth discussing with your GP is 'Amitriptyline' (if they feel it is suitable for you) as this contains a sedative component that many members on the forum have said helps them sleep. Just a thought?

Please do not think that you are just feeling sorry for yourself as Fibro genuinely takes its toll on you and can bring anyone down.

All my hopes and dreams for you

Ken

Needsleep profile image
Needsleep

Thank you....I will speak to my GP...who I have to say really listens and tries to help so I think she will go with what I ask for.....

I will let you know

πŸ˜„πŸ˜ƒ

Shadows-walker profile image
Shadows-walker

Hi so sorry your going through all this , just a thought about your mortgage have you got mortgage payment protection if your sick , perhaps you could have a chat with CAB or a benifits advisor or a disabled advocate might help , with the financial side of things ,

I must admit I was in the position to buy my own home a few years ago but because I had been ill the year before and they were undergoing tests to work out what was ring with me I was advised by bank not to buy a house and to stay in my rented on ,which was the best advise I have been given , as I would of properly lost it ,

I like you nursed my dad for 3 years before I became un well and got divorced I had 5 years well and the last 4 ill .

I hope you can find some help out there ,but the more stressed you become the worse you will become , so please get some advise so you can stabilise you need to rest and be gentle with yourself , I worked myself into the ground and got my 3 children through school and uni in the last 9 years as well , it's tough when you are just reliant on yourself and friends .

I ish I could say something more positive to help but your health must come before your house which is easy for me to say ,I wish I could wave a magic wand for you but maybe you just have to bite the bullet and seek out professional help with your finances ,so you are back in charge ,

Please take care of yourself

Shadow

Needsleep profile image
Needsleep in reply to Shadows-walker

Hi Shadow.....I am just starting to look into any help I may be able to get....it's so sad that this illness can take away opportunities that we should all have.... I think renting is probably for the best as you are able to receive help to pay it which is great. I only have a few years left then my house will be paid for so really want to try and hang on to it if I can, it just seems every day I am able to do less...sort of feel like I have walked into someone else's life and don't have a clue how to live it! really don't understand what is happening to my body and way of being!

πŸ˜žπŸ˜’ x

Shadows-walker profile image
Shadows-walker in reply to Needsleep

Hi I understand I feel my life was stole from me when I had just got myself back and felt I could start again , now I spend most of my time existing , my children understand because they know how indepent I am ,and how I did everything for everybody ,

It's arwful you can't get anyone to help with the sistuation with the house ! As far as your condition ,ask if you can go on a pain and fatigue clinic , it will help with pacing and exceptance and how to live your life differently ,

Would your employers at uni be able to help you as your free lance and now disabled it's a feather in there cap to be seen to be employing you diversity etc .

The house work can you afford a home help or get a friend to help.

Just a thought could you rent out a room to help with finance don't know what part of the UK you are in but as you lecture perhaps there's someone at the uni who might need a place during term time ,just a thought if it means you can keep your home .

Thought about your lesson plans how about cards with crib notes on to remind you roughly where you are and a trolley to put your books in so you don't have to carry , take one issue at a time even on here and ask for suggestion to rectify your issues many heads make light work .

Remember pace yourself and try not to stress is said than done , but take one problem at a time ., and see what you or we with you can come up with .

My children have done that with me , my eldest is staying with me at moment to get me level again .

Don't look for the negatives start looking for positives you have already started by coming on this site .

And re beer be kind and gentle with yourself ,

Chris x

KLR22 profile image
KLR22

Have you been checked for an underactive thyroid and also an Autoimmune Profile?

Karen

Needsleep profile image
Needsleep in reply to KLR22

Hi Karen,

I know my thyroid has been checked but not sure about the rest...I do know my body isn't absorbing iron and vitamin c so have supplements...had lots of blood tests but unsure what they all were for....

Xx

Shadows-walker profile image
Shadows-walker in reply to Needsleep

Hi me again , I am on folic acid it helps with cell regeneration ,

Hydrocholoquinne to help with fatigue , dulexotine to help with neuropathy and mood issues ,was initially put on amertriptalyn ,co proximal for pain ,

Hope this helps

Christina x

KLR22 profile image
KLR22 in reply to Needsleep

You really need to get your results with reference ranges as doctors often won't treat thyroid problems when they need treating. An autoimmune profile will check for antibodies against your thyroid which means you have Hashimoto's and definitely need thyroxine. You need to have adequate iron in order to absorb thyroxine too.

Karen

Needsleep profile image
Needsleep

Hi again....

Think I will ask my doctor for everything, .anything that may help.I know what you mean about always doing for others .guess that's been me too....if the fibro is caused by stress and trauma etc...you can sort of guess the lives of the lovely souls that have it...

I left my job at the the uni for many reasons but looking back this played a massive part I just didn't know it then.I was employed there but many changes meant taking on battles that I didn't have the energy to fight even with the union behind me! others left too sadly.

My family don't really understand, my sons have their own lives and really don't seem to get it! I have 2 close friends that understand but they have their own commitments and help when they can. My fella has been great, we don't live together but he does what he can whe he can and knows this is not me or my fault. My freelance work is in many teaching settings so I don't really have the personal touch there! I go in, teach and come out! There are so many similar stories on here and all have so many common themes in terms of having to adapt to a new way of living! It's not fair or enough to just exist! 😞 I have decided to take one day at a time and find a way to keep the wolves from the door! today has been a relatively good day, I haven't tripped and fallen which I seem to do quite a lot! πŸ˜„ I feel like when I close my eyes in a minute I will sleep, I have been able to think a little clearer too! So today has had a few achievements in it. Tomorrow will be what it will be I guess! Hope you get some sleep too.

Hugs xx

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