All your fibromyalgia experiences, questions and answers.

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Postby shoog » Sat Jan 25, 2014 3:57 pm

Hey all,

I'm relatively new to all of this. I'm 27, currently studying a second undergrad and I'm in the middle of trying to get a fibro diagnosis (GP is pretty certain). I have a few other health problems, premature menapause due to primary ovarian failure and chronic sarcoidosis.

As I'm kinda at the start of my working life (I have worked full time before, but not in what I wanted to do which is why I went back to university) and I'm worried already about the impact of my illnesses on my career. I really want to work in adult education and community development, and I hope that's where I'll end up when I finally graduate from university (sadly not until I'm 30!) but I worry because my symptoms are already having a massive impact on my studies (uni are threatening to withdraw me if I don't get my work in) and I'm scared that I'll never be able to work full time. That's really important to me because there is so much I want to achieve and it seems impossible without a full time job.

I guess I'm just interested in finding out how many of you are able to hold down full time jobs, and if it has a serious impact on your health?
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Re: Working/career?

Postby libbiek30 » Sat Jan 25, 2014 4:44 pm

Hi I work 30 hours and term time amd that is more than enough! Maybe u cud teach part-time. :-D
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Re: Working/career?

Postby cozza50 » Sat Jan 25, 2014 5:05 pm

hi i currantly work 30 hrs a week and its such a struggle im waiting for assesment appointment for PIP if i can get that then i can lower my hours and life would be a bit better for me
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Re: Working/career?

Postby SopsIsTops88 » Sat Jan 25, 2014 11:27 pm

Hi I'm Sophie,

I'm only 25 and have just had my fibro diagnosis a few months ago. Before I was diagnosed I struggled a lot with all of my symptoms and got very depressed trying to struggle on my own, holding down a job and coming to terms with the thought of having a lifelong illness. It was very tough but I can safely say I have come out the other side a fighter!

It really sucks that you are going through such a hard time and it must be terrible trying to study full time with the weight of fibromyalgia on your shoulders. All I can say is push through, once you have a diagnosis you can explore all of the different treatments available and try different things that work for you.

Do you have a good support network around you, and do you know anyone with fibromyalgia to give you some advice?

I work 40 hours a week and I must say it's very tough, but I'm not going to let it stop me. Some days I want to just lay in bed and cry all day but I won't let this illness beat me! There are a few doubts in my mind about whether I will be able to keep this up for a long time, but I've studied so hard to get into my line of work I can't give up my dreams.

All I can say is don't give up, keep trying your best and try to take one day at a time. If you're finding it hard to cope then there's a whole load of people on this site willing to give you help, tips and advice.


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Re: Working/career?

Postby denys » Sun Jan 26, 2014 12:00 am

A lot of people still manage to work, I'm not one of then but would love to be able to again. Some people unfortunately cant, only you will be aware of what is possible for you, I would say the most important thing for you at the moment is to stay positive, listen to your body, rest when you can and pace.

Pacing will help you make the most of your precious energy and let you achieve much more than if you dont. There is nothing to say you wont be able to work full time and :fingerscrossed: you will get there

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Re: Working/career?

Postby robbiecramp » Sun Jan 26, 2014 8:55 am

I am a support worker in supported living and my company have made it plain that I have to resign if cant do the job I am now getting another sick note for a month if possible just to see what they say but I know they cant just dismiss me and the doctor GP thinks its highly unacceptable they have suggested I do this after only 2 weeks of being diagnosed. She has said there is probably no way of cycling if that what a resident wants to do or going for a long walk but my boss has said its up to you but if you cant fulfil your job description your no good to me all I want them to do is lay me off as now have a medical illness that prevents me from doing my job and they cant re-deploy me
anyone else had this trouble
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Re: Working/career?

Postby SchroedingersCat » Sun Jan 26, 2014 9:11 pm

Just turned 48 - diagnosed with fibro about 2 years ago, sufferer for at least 4 years seriously and mildly on and off for probably 9 years. I work full time in an office (office manager), have had some pretty high stress jobs in the last 9 years (though my current one is in a small company that is really relaxed and friendly), and the only time off ill I have had has had nothing to do with fibro. I don't take any of the usual medication that GPs offer, I manage with over the counter painkillers (I'm allergic to anything with codeine in it) and mindfulness/meditation, plenty of rest, and bloodyminded persistence. Hope that helps, feel free to ask if you want to know any more.
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Re: Working/career?

Postby LouLou » Mon Jan 27, 2014 1:18 pm

Hi shoog

I used to work 45+ hours a week in Finance and I really enjoyed my job but the hours were just too much for me. I started to feel so scared at one point when I couldn't make it though a whole day at work. Then me and my boss started to play around with my hours and found that cutting them to 30 a week and starting at 9am worked so much better for me.

I rarely have a day off sick now, I still have the odd bad day where I have to stay home and rest but I am able to work full days and weeks now without any absence from work.

It is hard, I have days at my desk where I'm only able to go home, have a bath and flop (gently lol) onto the sofa. Druing the week my aim is to get through work as best as I can and I spread out any other jobs and bits I need to do so I'm not doing everything at once if that makes sense?

So if I know I need to pick up a prescription or pop to Tesco for something I'll plan so I only do one of those on one day after work and then go home and rest. Took me a while to get into planning ahead and sometimes things go the shape of a pear lol but it's how I manage and cope and it seems to work for me.

Is these someone at Uni you can talk to about your studies and spreading things out a bit? You may find that they are able to make some allowances for you? Maybe putting together a timetable for your studies so that you do say half an hour then break then another half an hour or something?
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Re: Working/career?

Postby LauraLizard » Sun Feb 02, 2014 4:16 pm

I work approximately 40hrs a week and admittedly it can be very difficult, but I'm stubborn and refuse to be beaten by this illness! I manage by being quite open with my bosses about it so they understand my bad days and any time off I might need, but also by limiting what I do outside of work. I know for instance that I can either shower OR cook dinner when I get home from work, but not both, so my husband and I work around that and share the cooking. I also limit what I do at the weekends and if I'm doing anything too full on, I have to take the Mon/Tue off work.

Essentially it's all down to balance and accepting that sometimes it's work OR a social life and not both! I still have extremely difficult days/weeks when I want to pack the whole thing in, but with a good support network and a bit of compromise, I can do it.

Hope that helps a bit, and good luck with your studying :)
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Re: Working/career?

Postby clairbear » Sun Feb 02, 2014 10:16 pm

Hi Shoog,

:fingerscrossed: your uni start to take notice that it is an illness that is effecting your studies and that with support you will finish.
It takes great courage and dedication to follow your "true" calling, especially as you have quit full time work to pursue it.
Don't give in on your dreams, get through Uni, try some placement work and see how you manage.

I've gone from working 40+ hours a week as an Office Manager to 20 hours a week on a temporary contract with my current employer.
I am fortunate that my current employer extended my contract after my first year for a further 6 months but on the grounds that if I'm not in I don't get paid. :(

My biggest difficulty with Fibro and I say this to colleagues and friends is that I feel I wake up to go to work and I go home to sleep for work, all my energy is based on trying to get in work and weekends are for re-energising to go back on Monday.
I have no social life left as I'm either exhausted or in pain (or both) so the 20 hours a week at the moment allows me to still do little things without the worry of not being able to cope at work.

Good luck with your studies, take it easy and come and talk to us all and let us know how you get on x
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Re: Working/career?

Postby nikkinoo » Mon Feb 03, 2014 8:54 pm

I'm also 27 and used to work with children with additional needs, I applied for a job within he school I was working in as I went through an agency, who were really supportive. The school however also knowing I'm waiting for a kidney removal, discarded my application, to be fair I'd been off I'll for a few weeks and tried to come in to support the teachers, child in my care and below average children, it seems they were not willing to even interview me.

I not care for my future mother in law, claim careers allowance to keep my head above water, but am struggling massively, some days I can't even look after myself let alone the mother in law, I'm luckily that my OH is amazing and he cooks every night because I can't, helps me wash, shop, get around and sorts out our horses, which I'm gutted I can't do now :-(.

I was thinking of possible applying for pip but am worried I won't be able to claim anything especially because I can't hold a job and no one willing to employ me because of FM and chronic kidney disease which will eventually lead to dialysis ad transplant.

Anyone offer any advice? Some days I struggle to walk, have major fibro fog, my speech becomes slurred and have pain ad extreme fatigue everyday.
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Re: Working/career?

Postby MichelleJ » Wed Feb 05, 2014 12:20 am

I had to give up my job a few months after it really kicked off and I was diagnosed. I tried doing self employed work with the same company so I could work only when well enough but even that proved too much. I've got steadily worse over the last few years since it started to the point I now need full time care and can't even have a shower without help, at the min I can't even dress myself either. I use a wheelchair but can't self propel it so my carer pushes me everywhere. I have m.e too. I have several friends with fibro and only one manages to work but she works for herself so takes time out when she needs to.

But just because I can't work doesn't mean you won't be able to. Fibro effects us all so differently and so your story may be different to mine. I hope it all works out for you x
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Re: Working/career?

Postby painprincess1 » Wed Feb 05, 2014 2:28 pm

I had to give up work to. But look talk to uni and tell them what the dr said get the dr to write a letter for u, that way they will help you . If they don't know there's a prob then they will assume your just not bothered. So get something from your dr and go talk to as for work go for it don't let your dreams go if u try and don't work u tired, if u give up you will be forever wondering what if,lots of ppl work with fibro I bring up 4 children that's an everyday full time job in its self, so follow your dream go for it x
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Re: Working/career?

Postby Tinkasmum » Wed Feb 05, 2014 8:17 pm

Nikinoo I know exactly how you feel re work. I'm self employed and in the summer all is generally well but as my work is outdoors and this has been the most miserable stormy winter I have ever known I cant do my own work.
finding an employer is proving very difficult with one even turning me down out right on medical grounds but at least I got through to the interview stage :/
I have another interview next week for a self employed position so fingers crossed i'll get it on a 'on my own head be it' basis :mrgreen:

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Re: Working/career?

Postby nikkinoo » Thu Feb 06, 2014 2:20 pm

Hi tinkasmum,

Yes its horrible because its not like we asked to have any of this...
I have to tell employers about my kidney condition given I have a lot of hospital appointments and non are willing to even help in any way, and now I have this too makes it harder, given I rely on people to help me says alot, at the moment I try to do things on my own and end up frustrated and upset because I find it difficult.

I agree been outdoors in the wet and cold doesn't help.

I hope your interview goes well, fingers crossed you get the job! Let me know :-)
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