Working with fibromyalgia

All your fibromyalgia experiences, questions and answers.

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Working with fibromyalgia

Postby charlie9 » Sun Dec 30, 2012 4:21 pm

I am a midwife and work 12.5 hour shifts sometimes without a break. If it is a break its normally a working one while writing notes or discussing care for a patient. It is mostly on your feet all day and its rare I go home on time at the moment. I feel absolutely exhausted, my body feels battered at the end of each day and I am really struggling. At times there is little support and when I'm struggling I feel others view me as weak and pathetic. I'm newly diagnosed, and have chatted to other staff and managers because I just couldn't hide it any more. Some have been supportive others have just made me feel pathetic. I have to wait for a referral to occupational health to then start discussing my health and how I can ease the symptoms. Taking forever and I am due to start night shifts soon and I'm on amitriptyline. :-( sadly thinking I need to change jobs as this is battering me. It's work and Try to recover from work so I can go to my next shift! Just so exhausted and this environment makes you fearful of how people see you. My big fear right now is that I have a lot of responsibility plus long hrs in a very physical, emotional and stressful environment may have serious consequences especially if I am not supported and shown understanding. I'm 25 and really worried about it all and my future. This is my first time on a forum, looking to discuss issues with other suffers who can understand how I feel! X
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Re: Working with fibromyalgia

Postby charlie9 » Sun Dec 30, 2012 4:23 pm

P.s I take co-codamol. Finding my hips especially are hurting loads I get very stiff and often standing feels excruciating at times. Neck, back, shoulder and headache pain are my main areas of pain. X
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Re: Working with fibromyalgia

Postby maxtomads » Sun Dec 30, 2012 4:50 pm

Hi charley & welcome.


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Re: Working with fibromyalgia

Postby shazq » Sun Dec 30, 2012 6:35 pm

Hi Charlie :welcome: to the forum

I take my hat off to you, i dont know how you are able to cope with doing your long hrs especially being on your feet most of the time. :hugs: I bet your body is screaming at you, dont know how you manage to do shift work.

You should make sure you get a break :nono:

Have you tried using a Tens? that might help your back while you are working on your feet or the heat pads are good as they last for 8 hrs.

Hope occ health can come up with some ideas to help you. :goodluck1:
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Re: Working with fibromyalgia

Postby denys » Sun Dec 30, 2012 6:40 pm

Hi Charlie and :welcome: to the forum :wave: You must be exhausted can you talk to HR about how much you are suffering and try to see if they can put you onto days for a while??? delivering babies must be hard on the body :yikes: :yikes: :yikes:
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Re: Working with fibromyalgia

Postby FluppyPuffy » Sun Dec 30, 2012 9:27 pm

:welcome: to the forum charlie :wave: :wave:

Please don't consider yourself weak or pathetic, or worry that others may view you in such a way, as you are far from that. You have a chronic condition, and are managing to continue working in what is such a special, essential and demanding role :grouphug: :grouphug: That shows a lot of resolve and strength. The reactions you've received from work colleagues, esp the negative ones, are typical unfortunately. Some people can't or won't accept that a condition like FM can have such a massive impact on life. These are the types of people that probably are best kept at a distance unless absolutely necessary. Sadly, most of us have come across such people, so understand just how much they can affect you and pull you down with their pessimism and general negativity.

There is lots of info and advice on here, so have a look and a read as you find your way around. You may come across some ideas you could try to make things a little more comfortable when working.

Amongst the people you've told at work, is one of them your ward/dept manager?? If not, then you may want to consider doing so, as once an employer is advised that an employee has a chronic/disabling condition/illness, they are covered by The Equalities Act 2010. Under the Act, an employer has to make "reasonable adjustments" so the employee's job is as suitable as possible for them to carry on doing, with their illness/condition/disability allowed for. Maybe this is something that will be covered when you get your Occy Health referral.

I've split your post and replies off from where you originally made it as you'd attached it to an old thread. It's now your own topic, so hopefully won't get as lost down the board as quickly as it might have done with being attached to the old one.
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Re: Working with fibromyalgia

Postby Niblet » Sun Dec 30, 2012 10:54 pm

Hi Charlie, I am a staff nurse and I work 30 hours a week on a busy surgical ward. I work a mix of early and late shifts. The late shifts used to kill me. I could barely walk out of the ward to my car and would sometimes have to sit and wait for pain killers to kick in before I could go home. When I got home I would often be in tears of frustration. When I was first diagnosed I went to occupational health and explained that I am much better on early shifts as before a late I am up at home all morning and then have to go on and do an 8 hour shift. I also explained that I can't do too many consecutive shifts and that night shifts would mess my medication times up. They recommended all this to my manager so I now mostly do early shifts. My colleagues are fantastic and if they see me struggling they insist on taking over or making me sit down. I also try and make sure I take my break although as you know this isn't easy. Work still isn't easy even on the early shifts and as you say it is often a matter of going home to try and recover from work so you can go to the next shift. I also hate it when the patients see me in pain. I get a lot of pain in my legs and end up hobbling along. I also get a lot of neck and shoulder pain and tension headaches.
I am on pregabalin which is really helpful plus I take co codamol and syndol for headaches.
As fluffy puppy said, fibro is covered under the equality act so they are obliged to make reasonable adjustments or you. Hope you get your occie health appt soon
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Re: Working with fibromyalgia

Postby mand » Sun Dec 30, 2012 11:03 pm

:shock: phew.....don't know how you manage 12.5 hrs ......try and hang fire and wait for occupational health, at least you have found this site it has been a lifeline for me...just keep posting

i work 20 hours a week due to caring commitments at home....i did find it rough when i was diagnosed, tired sore etc........now just trundle on and rest when i need to, and when i can.... i take co codamol(cannot take anything stronger due to sore tum) and also 5htp from holland and barrett (natures answer to antidepressants) im trying to stay off prescription meds as long as i can

you will get lots of support on here.... i certainly hope you can stay in your job delivering beautiful babies..... occy health are there to help and make adjustments in the workplace,i think you will be covered under the disability act as fibro is a long term health condition ...is that right guys :?: :?: :?:

take care and keep in touch, best wishes...mand
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Re: Working with fibromyalgia

Postby mand » Sun Dec 30, 2012 11:07 pm

forgot to write disability discrimination act and comes under equality :roll: brains frazzled...i think :crazy: :crazy: :crazy:
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Re: Working with fibromyalgia

Postby difly » Mon Dec 31, 2012 2:09 am

hi charlie workin with fibro is a balancing act and fitting time in for yourself is vital to recharge , I am working full time at the mo been
diagnosed for two years now but had various symptoms for four years , my empolyment is also demanding working in the criminal justice
system with challenging individuals , some days i could just give up work but it keeps me going and i like what i do ,ive learnt to try and cope with the pain etc in work mainly with medication but had to be careful not to impair my thinking etc and although i have spoken to my manager about my condition she doesnt really understand , i havent attempted to explain to my
collegues ,ive had meetin with ocy health but had a negative response ,
given fibro falls under the DDA your management should make attempts to support you , working 12-5 shifts must be hard especially nights as well , your work must be rewarding but also demanding .
i am so glad to have found this forum it has helped me to understand fibro and also lets me know im not alone , hope your meetin with
occy health is productive take care xxxx
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Re: Working with fibromyalgia

Postby LouLou » Wed Jan 02, 2013 1:16 pm

Hi Charlie

I really do admire you for the job you do and the hours you put in. I'm 29 and had FM for about 2 years now though sypmptoms started showing around 3-4 years ago. I used to be one of those career focussed women. I work in Finance, I had a really good wage and worked 40-50 hours a week. I was the main wage earner as my other half's job doesn't pay a lot but he loves it so what can you do.

Since my FM got worse I've had to cut my hours down and on a good week I can just about do 30 hours now. I wish we could afford for me to stop working but we can't and I still want to have some sort of a life. (I don't mean that to offend anyone who has had to give up work as I know so many of you have FM sypmtoms much worse than I do at the moment) It's amazing how you haven't given up yet I don't know how you work those hours I thought mine were bad enough.

I know what you mean by all you do is work then rest to get ready for your next shift. The second I finish work I find I'm doing everything I can to make sure I can get to work the next day.

Just be honest with your employers, tell them what makes your FM worse. I don't know if I'm assuming correctly but if you still want to stay in work try and reduce your hours. I know this won't be as easy as it was for me as the nature of your job is very different to mine. It may be a hard decision to make but ultimately you need to put yourself first, and if this job and your employers don't allow you to do this it may be worth looking for a similar job which is less demanding.

I fully understand your fears for the future as I'm the same. This forum is fab as there is always someone who can understand what you are going through.

Take care and good luck

x
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Re: Working with fibromyalgia

Postby charlie9 » Tue Jan 15, 2013 1:53 pm

Hi everyone,

Thank you for your warm welcome :-D

I went to occy health, and to be honest i find it hard to go back and re explain everything that has been happening in the past 4 years. They always try to put a date to it and it's not really that simple! The Dr was nice, I guess I didn't explain enough about the struggle I'm having although I had already said that in my initial email to them. Anyway he said continue what I am doing and write a diary including what shifts i'm doing and when I take my amitriptyllin. Then visit them again in a few weeks with proof of how I have been with the shifts and meds. I don't know if anyone I've spoken to actually understands FM. I have now changed wards to delivery suite which means night shifts and sometimes manic stressful shifts so I was really worried (you get the same on the wards but a closer group of colleagues that can be more understanding - my friend nearly collapsed on delivery suite and was not allowed to leave! She also had recent heart problems which the manager was aware of!! that's the kind of environment it can be!) . I spoke to one of my managers there and she was actually lovely, seemed very supportive and said herself that perhaps dropping my hours and doing 8 hr shifts would be better for me. I find it weird that the occy health didn't seem to want to even think of that. The only prob is that is one manager and I know others may not be so understanding.

Yesterday was my first shift, it was long and hard and my hips and hands were causing me a lot of pain. I did manage to eat and take little breaks. Today I feel like I need to sleep all day! I just don't want to move, back in tomorrow. No idea how I'm going to do night shifts.. in a couple of weeks i'm on 3 long nights in a row (7.30pm - 8am) we shall see!

I think you all cope really well. It's so hard to try and hide pain, people judge so quickly and so ruthlessly.

Thank you for your support it's really helpful to speak to people who can understand.

:-) Charlie xxx
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Re: Working with fibromyalgia

Postby LouLou » Wed Jan 16, 2013 12:14 pm

Hi Charley

Again I just want to say how much I admire you for working in the job you have and doing all those hours! It made me hurt just reading your post.

At least you have made all the right people well aware of your condition. A diary is a good idea as it will help not just your manager/Occy health but also you. It will help you see how your coping on a weekly/daily basis.

If you find you're still not coping well with the long hours then cutting them down a bit may be your next option. I've cut mine down quite alot and I'm starting to feel the benefit of it. In regards to working nights, again I don't know how you do it lol but if the shifts are making you worse then your employer should support you and make appropriate changes to your working environment/change in hours etc to help you do your job.

You sound like you want to keep working and your job does sound very rewarding. Don't give up, rest whenever possible.

Take Care
x
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Re: Working with fibromyalgia

Postby Iceskatemum » Wed Jan 16, 2013 2:21 pm

Charley Welcome & well done for working such long shifts , I take my hat off to anybody who does anything over & above an 8 hr day.!

A diary is a good way of logging your symptoms and I guess occ health are just being careful in looking for evidence of how the work effects you . I guess from thier point of view anybody could write and tell them they needed to review thier working pattern for x reason.

Can I suggest you get one of those cheap diaries from a local supermarket and use it to track you pain levels at various parts of the day. What meds you are using for it and how your fatigue and other symptoms react. If you have ongoing fatigue issues also log how long after each shift it takes for you to get back to your new normal eg over rest periods etc. Impacts on home life etc.

Obviously working a busy labour ward is going to more stresssful that a ward situation so its important that you can show them any differences where you work might have on you .

Under thier duty of care your employer has to make "reasonable" adjustment, for you to continue your employment . What is reasonable for a small employer is totally different from a massive employer like the NHS.
As an example I understand that it would not be unreasonable for your employer to let you work only in a ward situation or clinic on days if that would decrease the pain and fatigue your FM might give you .

Good luck with your ladies and hope you don't have any tricky situations as I'm sure they would add to your stress levels and also hope your assessment goes in your favour as I know it can make such a difference in people quality of life and thier ability to keep on working
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Re: Working with fibromyalgia

Postby charlie9 » Sun Jan 20, 2013 4:41 pm

Hey just a quick reply.

Thank you for your advice. I have started a diary. I find that after 5pm I feel in a lot of pain, foggy headed and nervous about the next case that comes through the door. The thing is in a stressful environment people sometimes snap at you and treat you like an idiot sometimes and that happened on my last shift when I was nearly in tears when I walked then someone snapped at me, I wanted to snap back and show some reality of my situation but I didn't I smiled and moved on. But it certainly doesn't help it just makes me dread work.

I really do think perhaps 30 hrs a week and doing normal shifts (now known as short shifts 8hrs) Atleast if it's a very busy day I can walk out after 8 hours ish and have a bit of day to feel normal and relax at home.

I love the job in some respects but perhaps a low risk birthing unit would suite better, or clinic or community. I am certainly thinking about it because there are moment when I want out of it all I want to walk away. But then I remember the women I've met and helped and how passionate I am about true midwifery. And then I feel sad I am even thinking of leaving the profession. The one positive is that on amitriptyllin 30mg at night I am now sleeping much better. I haven't started nights yet but they are coming up shortly. I wouldn't say they've improved pain much but the sleep makes a big difference and my IBS symptoms went almost as soon as I started sleeping better.

I best go but I am really grateful for your support and being able to talk to others. It's like a little space where I can say how I really feel.

Keep warm every one. Another shift tomorrow fingers crossed for a good day!

Charlotte xxx
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