Fibromyalgia and work Part 1

[remnant]

By self managing and controlling daily stress, most people with fibro can do almost anything they choose. A good first step is to discuss your fibro with your boss and co-workers for them to have a better picture of what fibromyalgia entails. Ask your boss if you can take rest periods during bad days. A midday map is very effective and you can come with a cot for this purpose. Employers should allow periodic rest periods for sufferers to reorient and also provide memory aids like reschedulers and organizers. Of ultimate importance is for employers to reduce job stress and minimise distractions.

 

[kdb890]

Sometimes employers aren't up to the task of doing this, though. If an employer has to make accommodations for their employees, they're less likely to keep those people on with them. I have chronic back pan, have tried every otc pain medicine and physical therapy, but none of it helped and my employers weren't so kind to me about it so I got an easier job. My boyfriend's aunt who has fibromyalgia works in landscaping and housekeeping, so she's constantly having to climb roofs and things of that nature. Luckily she works on a team with several men, so when she needs a break they're able to let her have one and take up the workload for her.

 

[diamond]

I am always momentarily surprised when i read posts of how people with fibro can work at all.

Then i remind myself that we all suffer to different levels and that for a few years i carried on working when my symptoms were much milder.

Nowadays walking/hobbling around my house to get a meal is often all i can manage or typing a few sentences.

I have been up now for about 3 hours and only made an easy breakfast and sat with my laptop.

Now run out of battery power ( me not the laptop lol ) , the room is spinning so i have no choice but to go back to bed with my hot water bottles to ease pain.

I am glad you guys can work and i appreciate it is still a battle to find ways to make it manageable.

It's a strange illness....i have a friend with CFS and she has been trying for 5 years to walk for longer than 5 minutes and has had to give up her career as an optician.

I also had a similar career but alas retired on medical grounds.

 

[TipBill]

You must have a much more sympathetic and compassionate boss then I ever had. I worked twenty years as a waitress and ten years as a housekeeper and I can never in my wildest imagination imagine them letting me stop and rest much less take a nap. I finally found an office job in 2010 and thought I would be able to handle that and I did for about 4 years. Then the fibro got to bad I couldn't even do that. I explained to my boss that I had fibro and chronic fatigue syndrome and told her what that was and how it affected my body, mind and job performance. She basically said if you can't keep up we can't use you. Mind you I was trying to keep up with 20-30 year olds. In fact I was old enough to be everybody's mother or grandmother. So I just finally quit my job and have been staying at home ever since.

 

[DK_engineer]

In some work places it would be really bad to tell all your coworkers you have fibromyalgia. Sadly some people are highly political and will use anything they can against their coworkers, including health conditions.

 

[savsgirl66]

I am blessed to be where I am. I have a desk job which helps, but the stress level is high - so I am working to find ways to cut some of that out. I can say that after a day at work, I am wiped - completely and totally wiped. Weekends are "recharging" times and my family has suffered not getting much of my time. As others have said throughout - I have better days and worse days. But at this point, it appears to be getting worse. That scares the crap out of me. I have 14 years until I can retire. I really want to make it that fourteen years - but if this continues, I am not sure what to expect. I hate not knowing. I hate the unknown. I am a fixer. I want to figure it out and fix it. This will not work. :/

 

[DK_engineer]

Hi savsgirl66, welcome to the forum

I'm in a similar position as you - I need to keep working. I'm the main breadwinner (my husband was a full-time dad). My husband is starting up his career, but cannot replace my income yet. My work week affects me very similar to what you described. Most weeks I make it through, but sometimes I have to stay home for a few days.

Despite what I said about political people I am very fortunate to have have some people at work who I can really trust, including my boss. That makes a huge difference. I use FMLA to cover abscences and protect myself.

My symptoms go up and down, but so far I don't think they are getting worse. Things that help me are pacing, resting when I need to, moving around (ie walking) when I need to, swimming as often as I can, avoiding sugar, eating lots of fruits and vegetables, getting enough sleep and avoiding stress where possible.

Stress is a tough one. I've found it helps every so often to take a deep breath. It sounds too simple, right? But it's so easy to forget to do while I'm at work!

 

[diamond]

I think this FMLA ( i looked it up) is a great idea.We don't have anything like it in the UK....either you can do your job or you can't. Too much sick time...being late and after a while you would be out the door.

They are tolerant for a while say if you had cancer and needed treatment for a year or had major surgery and needed time off to make a full recovery but if you have a condition long term some companies might help modify the job to help or maybe reduce your hour but after a year or so if you still had too many sick days or being late you would mostly face the sack on the basis you aren't fit to do the job.

You guys do so well managing work.

 

[DK_engineer]

FMLA has it's limitations - For one thing, it is not paid. The law says you get 12 weeks per year, but when the doctor fills out the paperwork they have to estimate how much you will use. If you go over the estmation, all the paperwork has to be resubmitted. They won't approve it for more than a few months at a time (max 6) so you have to keep resubmitting anyway. Every time I use it I have to report it three different ways.

I do know of a person who was fired while on FMLA. She succeeded in suing her employer but

 

[DK_engineer]

(ooops, posted early)

... But the settlement wasn't anywhere near what she would have earned if she kept working.

So the concept is good, but it will only get you so far. I think you British folk are pretty lucky to have a decent safety net in terms of health care, disability and so forth. In the US if you have a chronic or mental health issue you need to have people who will help take care of you or you will have a very rough time of it.

 

[diamond]

Yes we definitely do well on healthcare and my heart goes out often when i hear about you folk having to pay huge amounts for meds and can't find the docs you need because your insurance won't pay.

Our Healthcare appears to be free but we all pay something called National Insurance (12% of income) from the moment we start work it is deducted from our salary and the government uses this along with our taxes (another 20% to 45% ) to fund the Health Service.

Our hospital waiting lists can be long but we do generally get great emergency care....although there are some horror stories about people being left for hours on trolleys in A and E.

People with mental health issues here are waiting around 8 months to a year to be assessed by a specialist.

Our ill health allowance and disabiilty however is not as easy as it might appear. Ten years ago it was a bit easier but still required lots of medical evidence and assessment from our Department of Work and Pensions.

In 2010 the whole system was radically changed and millions of people are having support withdrawn and the new assessment is carried out by two companies with non medical staff assessing peoples complex needs and medical evidence even from consultants is frequently disregarded and a computer tick box method of collecting points used to either pass or fail people.

Even then people are reviewed frequently and can be told they are fit for work when clearly they are not.

There have been suicides reported due to the stress ....waiting for appeals/tribunals and hardship suffered.

I am guessing this part of our economy cuts has not been reported worldwide.

I know from reading here that in the USA you can wait years for disability and luckily that doesn't happen here...more likely months to wait but then if you are turned down you are stuck just the same.... reliant on family or friends or living in debt and poverty.

 

[diamond]

Sorry if i rambled on above was a bit off topic.

 

[DK_engineer]

No worries, it is all interesting! It's by individual people talking together like this that we get a more realistic view on how the systems in different countries work.

 

[Forgetmenot]

Take a nap lol. Sorry but I've never been in a job where u are allowed to sleep.i get the premise,but here in the uk forget it,

 

[DK_engineer]

Yeah, I hear you - every place I've ever worked, sleeping on the job is a firing offence.