fibromyalgia

[Kazzza1976]

I was diagnosed with fibro 6 months ago. I work nights as a mental health support worker (40 hours aweek ) I have just been told by my Gp I should not be working nights as people with fibro need rest and he suggested maybe my flare ups I’m having is because I’m sitting up for 10 hours whilst on shift. I did work days but it was too much for me and I asked to work night shifts instead as I thought it would be easier. Now I just feel worse and don’t know what to do.

[Dizzytwo Moderator]

Hi Kazzza, I am sorry to hear your struggling especially with your job. Have you looked into what options you may have applying for benefits if you need to stop work ? We have our own benefits advisor called Janet. You can get all the info from the FMAUK link below if you wish to get in touch with her. and maybe see what options are open to you. The service is free and completely confidential

healthunlocked.com/fibromya...

I hope this helps a little . Good luck xx

Momo

[Kazzza1976 in reply to Dizzytwo]

Thankyou so much. I have just spoke to my manager because nights are too much for me. He is putting me back on day shifts and speaking with hr to see if they can help me in anyway. He did advise the days are busy but thinks will be better going for little walks with tenants as it’s a form of exercise rather than sit in a chair for 10 hour shifts. And I will be working with other staff rather than working alone of a night as well. I can only try and see how this goes but this is my last option now then I would see what benefits I am entitled to. Thankyou for your help

[Dizzytwo Moderator in reply to Kazzza1976]

You are very welcome and I hope it works out for you. In the mean time it may not do any harm to have a word with Janet to see how things stand for the future ?

[Kazzza1976 in reply to Dizzytwo]

I called and left a message on her phone she is going to speak with me on Monday

[Dizzytwo Moderator in reply to Kazzza1976]

Great, It never harms to have all your options in place . Good Luck xx

[Blearyeyed in reply to Kazzza1976]

HR should be able to ask for someone to come in to do an Occupational Workplace assessment for you.These are very comprehensive and give guidance to you and your employer about making your job easier , as well as suggesting which equipment , uniform changes or furniture that will make it more comfortable for you to work. If they don't suggest it you can ask for them to sort this out .

As you are a Mental Health support worker yourself I would hope that your employer's are more understanding about your needs and how your Fibro or work stress could effect you physically and mentally.

If you do feel that you still can't do as much there may be the possibility of some benefits via ESA or work disability benefits because you have Fibro which could make it easier for you to do shorter shifts or less shifts with rest days between or go part time , even temporarily while you get your pain and flares under control.

Good luck , Bee

[Jasmeet12 in reply to Kazzza1976]

Hello Kazzza,I was diagnosed 7 years ago now, I was running my own cleaning business with 11 staff and was constantly on the go. It got to the point where I was sleeping in my office and car tyring in the day to keep up with things and lots of coffee with caffeine tablets. I wrecked my body and just over a year ago closed my business down. I now survive on benefits as in unable to work with the pain and fatigue now. It was so hard to let go of being independent but I had no choice in the end. I hooe you find a balance. Big hugs

[Greyt in reply to Kazzza1976]

Hello Kazzza

I sympathise with you as I was working in a care home when I was diagnosed, 8 years ago with Fibromyalgia.

The day shifts are certainly more demanding!! I eventually left and went self employed and so was able to choose better and more suitable hours and amount of clients .

Hopefully your manager and colleagues will be understanding of your situation and support you . It’s all about pacing yourself with Fibromyalgia.

This is a great group for advice .

Wishing you well .

[puzzleprincess]

Hi Kazzza,

I am also a mental health support worker, but work in the community instead of on the wards. I find it much more flexible and have been through occupation health to get reasonable adjustments. I manage my own diary, so can work things so I don’t flare, but also have the understanding of management that if I am having a flare day, I can get things done from home.

Might be something to think about trying if you can’t cut down on hours, or don’t want to give up work? Good luck x

[Kazzza1976 in reply to puzzleprincess]

hi thanks for your reply

I spoke with my manager yesterday as I’m convinced working night shifts are not helping my flare ups with fibromyalgia at all. I am going back on day shifts but they can be busy , but atleast I will be getting abit of exercise when I’m walking with tenants. I just have to think about how many hrs I would like to do now as I m thinking about part time hours now

[gadgetgaz]

I had to start working nights again about 9 years ago and it didn't make much difference to my FM. Then later when I retired and didn't have to work nights anymore, still no difference. I think sleep duration and maybe regular patterns are more important than what time you go. So I wouldn't rush to change your job unless you've done some experiments first. Good luck.

[carollynn]

Hi there,All I will say is;

With fibromyalgia, read up as much as possible about it, In medical journals & updated reports. You will be able to access these reports more easier than most, if a practicing consultant.

Then my next advice is, learn to listen to what your own body is saying to you.

Everyone fibromyalgia is different and everyone's pain tolerance is different.

You and you alone will know when it is time to give up work.

I worked as catering management & Consultant, a hard slog job, mentally challenging and physically hard on your body.

I was determined not to let this disorder win.

I ended my career 3 years ago literally this month.

I left, not through fibro, but something else which caused my fibro to be impacted.

I get all the rest I need now, if only I could sleep.

For my fibromyalgia it was the worst thing I ever did, giving up work.

I feel in so much more pain, stiffer, weaker, a prisoner to be honest.

It's the lack of brain stimulation I feel with not much conversation to others what effects u most. Simple daily problems to figure out keeps the brain active and giving up work reduces all this.

My advice, from someone who was diagnosed at 25 & I'm now 57...I have acute, hyper sensative fibromyalgia . Work as long as you can possibly do. ..and u will know yourself when that time is. Don't listen to everything you are told by people who don't have this vile illness. You will eventually know more about fibromyalgia than most specialists.

I could write a book on what I know & how people are affected and what meds do & do not work well & which to avoid...My Dr always thinks I'm a Dr haha...as I have learnt so much about it.

Good luck with your decision. 😊😊 be kind to yourself.

[Mystique23]

HiThat sounds like me.

I'm a support worker for children with complex needs and challenging behaviour.

I worked 3 years on nights due to covid and needing to protect my family. It allowed me to still work but not be around lots of people this suited my life situation at the time.

My employers made me go back onto day shifts last April, as my contract was not for nights, it had only been allowed due to covid. As all limitations had now been removed any one in our company who had hours changed due to covid now had to return to their original hours.

Fibro has been on decline ever since esp trying to fit my caring responsibilities into my new shift pattern now to point where I've reduced my hours by half and I'm still struggling with day shifts. Currently on 4 hour shifts instead as recommended by my GP and by OH, but it means I now work four days instead of just 2 a week and I'm struggling with that too.

I'm coming round to the point of thinking that they may have to let me go on medical grounds., but if so that's ok I get it.

It's hard but you just have to do what's right for you. Find out as much help as possible and apply for anything you may be entitled to. Listen to your body and intuition and let them lead you.

I hope you find a suitable solution, it's hard work being a support worker, not just physically but emotionally too. Try to leave it at work.

Look after yourself so you can look after others. I let my circumstances overtake me and I'm paying for it now, but I'm determined to get it back under control.

Wishing you all the luck in the world. X