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Working and fibromyalgia

May 09, 2018 4:25 PM

Hi guys,

I wanted to hear other people's experiences around working while having fibromyalgia or other chronic pain problems. I'm still working but I have had to change my hours so that I have a 3 hour break so I can nap. I'm constantly having time off work too. Today I had to work front reception and it has literally wrecked me. This has prompted me to think about my future and what having fibromyalgia means for me and my family. We've just been accepted for a mortgage to buy our home so I'm working towards saving for the deposit, so realising today that I am struggling with working was a kick in the balls.

My employer has been fantastic, extremely supportive but I feel guilty.

Hope everyone is having a low pain day ๐ŸŒˆ

May 09, 2018 5:53 PM

The last thing you should feel is guilty but I understand where you are coming from - I own a business with a partner who just happens to be my mother who I thought would understand but turns out that unless they actually have fibro - no one can understand. My advice is pace yourself. Iโ€™m working hard to do this myself. Itโ€™s new to me also. Determine what you can and canโ€™t do. And go from there. Take lots of breaks and donโ€™t overdue it (like I did today)

May 10, 2018 10:37 AM

Thanks for the advice. I just hate how this stupid thing is taking over my life. I got sent home from work today because my blood pressure was 176/140 (I work for a Dr so the nurse checked it for me). Then nhs 111 called an ambulance to me because I was having arm pain with sweats and headache and my blood pressure was still high. I could literally see the ambulance crew roll their eyes when I said that I had fibromyalgia. I'm feeling better now, I'm seeing my Dr tomorrow. Sorry for the little rant it's just another example of my life being so out of my control ๐ŸŒˆ

May 10, 2018 11:13 AM

My husbandand I have our own company so I work everyday but luckily we have 2 secretaries in the office so that I can go home when needed. There are days though when coming in to work is impossible.

May 10, 2018 12:20 PM

Hi Joybell45, I agree somedays are just so hard. What business do you have?

May 10, 2018 1:41 PM

I am currently on sick leave from work. It is getting too difficult to hide my illness and work through it anymore. I just can't do it. It has been hard to accept, but my life has taken a different direction and the pain and fatigue are too much foe many things that I used to be able to do, including my job.

May 10, 2018 1:59 PM

Hayley you should practise relaxation techniques like deep breathing to relax your body in any moment you feel like giving up or feeling something not right. You should also take meds for blood pressure this high pressure is life threatening.

May 10, 2018 2:39 PM

I feel the exact same way Sanch. I hate the fact that I have lost control of my own life. Hope you're okay today *gentle hugs*

Jolly my GP won't give me anything for it. She says I'm too young. Then when I see my rheumatologist he isn't happy because my blood pressure is not controlled. I'm seeing my GP again tomorrow to pass on the advice of the paramedics. I do deep breathing exercises and fibromyalgia based yoga but sometimes with fibromyalgia it will just flare up and there is nothing you can do to help, you just have to ride it out. It's awful at times. Other days I'm okay just achy like I have flu.

My work have provided me with a new chair! That has better support for my back and they have moved my work station so I'm more comfortable.

Hope everyone is okay today ๐ŸŒˆ

May 10, 2018 5:23 PM

I worked for 8 months in constant pain. Weakness prevented me from lifting, carrying, stacking..a must in a 500k food pantry. Stairs became a rationed activity. Brain fog killed my organization and tasks seemed to never end or I didn't know where to start. I was lost in my office. I came in late or not at all. Left early almost daily. I eventually took 1 month leave hoping I might be rejuvenated. Upon my return I resigned and packed my office that day. My employer and workmates were all so supportive and flexible. I loved that job but it was no longer fair to anyone to even try.

Nothing has changed-- except I can stay in my jammies for days without recourse or guilt. Luckily I was in a financial position to stop working. Everyday is still a struggle but I can ration my energy etc with much less guilt and anxiety.

May 11, 2018 6:00 AM

Sorry to hear that you had to leave your job. It's such a worry. I'm finding my organisation skills are suffering too - I've had to start writing things down or using a electronic reminder to do stuff. Thanks for the advice. Take care Hayley ๐ŸŒˆ

May 15, 2018 3:50 PM

I attempt part time office work, have problems
I have open ssdi case in appeals.
I was able to work until 2014 (25 yrs more or less). Pain has made work impossible to support myself
Most fearful part

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