Just saying hi: Hi, I am Gill and have... - Fibromyalgia Acti...

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Just saying hi

gillc0312 profile image
22 Replies

Hi, I am Gill and have just found out I have fibromyalgia. Not sure where to start with it really. I notice people have different symptoms and it seems I don't suffer with all. I feel a bit worried how to hold down a job though as I have just got my first job in 17 yrs after raising my family. What with the tiredness and pain in the hands, plus not thinking straight, how do people cope?

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gillc0312
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22 Replies

Hi Gill, welcome to the forum. There will be someone along shortly that will give you all the relevant information. This is a great forum for information and diversion, so enjoy a look around :)

I would consider myself lucky in that my fibro is not as bad as some and I only work part time. You didn't say if you were working full time or part time. Personally I find part time work enough but there are others on the forum that work full time and I am sure they will advise you on that. I have found that so e days I just come home and I am not really fit for much else, so on those days I try my best to put my feet up and rest. The key apparently is pacing, not overdoing it. Gentle exercise is better than a full on aerobic regime.

I hope that is of some help and look forward to seeing you about the forum :)

gillc0312 profile image
gillc0312 in reply to

Thank you :-) I will be working part time as I don't think I would cope full time. As you say when you're tired you just can't do things, I am thankful when my body is feeling exhausted, my children are OK getting food so I can rest. So.much to learn about Fibro isn't there? Lol

in reply togillc0312

Still learning myself, it takes some getting used to but there are a lot of friendly people on here willing to help :)

Night for now :)

fenbadger profile image
fenbadger

Hi Gill and welcome indeed. In the meantime here's a post from today that might help healthunlocked.com/fibroact....

Moderation is key as Tiredalot says. One of the things we do is have fun - to distract us from the problems - and Tired is a past master - rather past mistress of fun. Please feel free to join in and ask away for specifics.

Gentle hugs are always in order :)

in reply tofenbadger

As are tummy tickles :p

Shazzzy profile image
Shazzzy in reply tofenbadger

Shock, horror, tiredalot was a past mistress !?! I must say, never thought she'd have the energy .

in reply toShazzzy

I have to rest frequently ;)

gillc0312 profile image
gillc0312 in reply tofenbadger

Thank you I will take a look :)

Malwimmy27 profile image
Malwimmy27

Hi Gill welcome to this site,hopefully you'll find it supportive and informative.

Everyone has their own way of coping with the pain and tiredness. The main thing to learn to do which I still find difficult is to pace yourself through the day. Give your boss an information leaflet which you'll be able to find on this site and ask if you can take regular short breaks if you need to.

Fibromyalgia is recognised as a disability by the Government and benefits agency.

There are some people who have remissions sometimes for years, everyone is so different in terms of pain and tiredness.

I hope you find all the information you're looking for.

Becky. X

TheAuthor profile image
TheAuthor

Hi gillc0312

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I can see that you have been given a link to our mother site FibroAction[/] which is really worth checking out as it hosts loads of useful Fibro information.

I want to genuinely wish you all the best of luck

Ken

Gailj profile image
Gailj

Hi Gill, welcome to the site.

There are so many symptoms for Fibro, it takes an understanding Dr to diagnose it.

We all have different symptoms, some cross paths with other medical problems, some stand alone, widespread pain is the common denominator.

Some members are able to work and others are unable, I would suggest you speak to your Line Manager, explain your diagnosis and hopefully he/she may be sympathetic and suggest alternate or reduced hours.

Good luck x

Shazzzy profile image
Shazzzy

Had to give up work a few years ago so cant help there im afraid. just wanted to welcome you and say hi. Yes, symptoms are multiple and varied and is often hard to work out cause (fibro, medication reaction, other ) at least you can say its not a boring disease, sooner rather than later a completely new symptom will pop up to catch you unawares.

bluejeans16 profile image
bluejeans16

Hi. it has taken me a long time to get used to pacing myself and I still over do it a lot of the time (can't help myself). I work part time as a volunteer in a charity shop and was seriously worried about coping with a full time job I am about to move out of my parents place and thought I would have to work full time to pay all the bills. I used to work full time in the charity shop until I became ill. Yesterday I went to a talk organised by the job centre about universal credit. It was very interesting and will definately benefit those of us who can't cope with full time work as our wages will be topped up. It really put my mind at rest as it looks like I might be getting a job at the charity shop but my hour will go up and down all the time. One week I could be working 7 hours then the next week I could be working 14 hours or even 35 hours if the manager chooses to take a week off.

Royalspec01 profile image
Royalspec01

Hi there don't worry about working out the differences were all the same I say this as fibro as you'll come to realise is so ooooooooooo complicated. What I can tell you is each of us fibromite is that each of our conditions can stress us out in variable ways and fibro being stress related, reacts to the stress caused by our conditions and there for makes it difficult to manage at times. Me for e.g. have lower lumber with nerve damage that aggravates and pains me throughout my day and if the pains increase so does my fibro symptoms mainly exhaustion with passing out regularly and wide spread pain from mild to severe. This over a period of time has made my muscles tired too exercise doesn't always make it better for me but in fact usually causes my lumber and feet to pain more so as you can see its complicated. What I would like to suggest is to please use this site for comparison or info there's a great bunch up here. Nothing more isolating as sitting in a room of lovely well people. Have you asked your doctor for a fibro/pain management course this can really help to personalise and understand how to manage your particular condition. Really hope this helps in some way and hope you take it easy and fluffy yourself up x

Peace2014 profile image
Peace2014

Welcome to the forum. Like you I do not have fibro too bad. Two of my colleagues also have fibro and are far worse than me. My advise would be to remain positive. Delegate at home where possible. Gentle exercise like Tai chi - I gave up on the tread mill!! Find a hobby that you enjoy or a little bit you time with no distractions. I hate to say it but pace your day.

Witchygirl profile image
Witchygirl in reply toPeace2014

My mother swears her crafting has kept her sane. Obviously during flare ups she cant do anything at all other than bed rest, but she likes to keep her brain as active as possible and her fingers supple too. Its a distraction as well

Peace2014 profile image
Peace2014 in reply toWitchygirl

My old Dr always used to ask me if I was crafting and if not used to up my meds!

Mdaisy profile image
Mdaisy

Hello Gill,

Welcome to the FibroAction community!

This is a popular topic and we did a poll a while ago which you may be interested in, link below;

healthunlocked.com/fibroact...

I also wanted to add this link about Work & Fibro from our website (link below) regarding your rights & reasonable adjustments. Have you discussed any adjustments which can be made to make working life easier?

fibroaction-public.sharepoi...

I hope you too find this community a helpful & supportive resource as many report they do!

Best Wishes

Emma :)

FibroAction Administrator

gillc0312 profile image
gillc0312 in reply toMdaisy

Hi, thank you for your help. I have not discussed with work as i am not due to start there yet and only found out the other day. I will be working as a temp so I can choose my own hours which is great, but on the down side it will mess my benefits up. I am on ESA at present, not claimed PIP as not sure i would get that. I will look over your suggestions, thank you x

gillc0312 profile image
gillc0312

Thank you to all of for your warm welcome, you have been a great help. I will certainly look round the sites that have been suggested.

Hopefully chat with you all again at some point.

Serenity61 profile image
Serenity61

Hi Gill

Welcome this forum is so informative caring also. You will work things out.

I have a friend who works and her company support her all the way with what she needs to make her comfortable.

Understanding Fybromyalga is the starting point once people are open to listening it is such a help

I have it pretty bad from head to toe literally and cannot work

Dr say I am complex I am not under any rheumatologist anymore as they say they have done all they can. My GP works with me So it's just trying different drugs which don't really help due to the side effects.

So I have to go cold turkey years of explaining myself.

since research has proven Fybromyalga to be a condition, the thing about being in your head is dismissed by many professionals now.

It's good to join a Fibromyalga group in your area they are very informative

Hugs x

Witchygirl profile image
Witchygirl

Everyone does seem to have different symptoms I think that's why it used to be so difficult to be diagnosed. Pacing yourself seems to help, not doing everything all at once, you know, jobs around the house and stuff. Get some books about Fibro and maybe join self help group.

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