I am so tired, what do I do

[Itgoesonandon]

I was diagnosed with fybro in 2018 after many years of suffering. I have done 39 years in full time employment, having to travel on buses, trams, underground/overground trains. It was a struggle at times but i needed to have my sanity, i could not sit at home all day as movement does ease the pain. I have now reduced my hours to 18 a week, working part time for the last 3 years, my hours suit me better as no early mornings when I am at my worst, I work a 4 day week from 2pm to 6.30pm within walking distance of my home, 1.1 mile of which I walk and at times felt a little better. I was taking amitryptiline 30mg for at least 3.5 years, this did not help with sleep at all. I started having more flare ups/bad days much more and the discomfort got worse, I felt so low and approached my doctor, I am now taking 60g of duloxetine, these at first seem to work but now after 13 months, i am feeling too much pain, tiredness, brain fog, you know how it is and my sleep pattern is off the wall, sleep deprivation is adding to the flare ups. I will be 60 in February, I have a pension coming too. Do I give up my job or carry on working as this keeps my sanity and a reason to get walking or is it time for me to rest? I too have 2 grandchildren, 1 of 4 years, the other 6 months, I love to see them but I struggle to do certain play time activities with the 4 year old and after carrying the baby for a while, my back, shoulders and arms hurt

[Lillylilac]

Hi thereI can only tell you my experience and it is obviously different for everyone.

I gave up my full time job and like you got a part time job which I loved. I've always worked with children and I realised that safety had become an issue as I was in so much pain and with brain fog I couldn't do my job properly. So I left. Missed it so very much but after about a year I got used to it and found that I was able to cope with my symptoms much better.

I now please myself what I do, when I get up, go to bed etc. I go swimming twice a week which I find really helps.

Money was tight at first as I only had my private pension. I claimed PIP which I got Standard for both.

Now I have my state pension and am glad I gave up work altogether. I do keep in touch with girls I used to work with.

Sorry its so long but hope I've given you my perspective.

Good luck in what ever you decide to do.

Lilly x

[Itgoesonandon in reply to Lillylilac]

Thank you for your reply Lilly, I really don't want to stop work but there are days that I am so sore that I just wish I didn't need to go. I never go sick, I just struggle on but I think I am doing more harm. Medication may help some days. The female rheumatologist I last see put it down to not just having fybro which she can't help with but my age and the menopause and to start swimming or pirates of which I too consider will help but its a vicious circle because the day or two following that, the soreness returns. I had 12 tender points out of the 18 we supposedly can have to be diagnosed with fybro but since then, my hands can be very tight and swollen which adds another 2 tender points. The GP'S still don't know enough about this, they say there is no cure, so what can we do

[Meditationlover]

Hi, I used to work full time, then year ago dropped to part time, then 6 weeks ago I retired at 52, I was falling asleep 😴 at work, and pain was terrible, for me work was one of my negative triggers. Do what is best for you, if you do leave your job, try to keep some form of structure, set small daily targets so it's manageable. Good luck with whatever you decide, keep us posted xxx

[WeeAirdrieSoul]

Hi there. I take Duloxetine, 120mg per day. I'm different from you though, in that I don't work because I have a few medical conditions. However, it did get to a point where the Duloxetine wasn't enough, so I was put on Gabapentin as well. That helps. Obviously the pain is still there (especially when I'm in flare), but it's easier to deal with. I'm 50, and I was diagnosed with fibro about 3.5 years ago - but I'm still working on what will be best. It's an ongoing process. And even though I was told it's not, I believe fibro is a progressive condition - in that it will get worse over time and medicine may have to be increased or changed. I hope you get sorted and see some improvement.

[Dancerooni]

Do what you feels best for you. In my experience I worked in childcare which i loved, however it had a major impact on my flare ups, I tried full-time, part-time, juggled hours around, and eventually had to make the decision to not work. I still have flare ups, but much easier that I’m not having the additional stress to try and work. I am also on 60mg duloxetine and still have pain etc, the next gp appointment I will be hopefully coming off duloxetine and try more holistic approach to manage the pain.

It was a very hard and painful decision to make to give up my job, but it was the right decision in the end.

[Yassytina FMA UK Volunteer]

It might well be that if you give up your job it would take the pressure off you and when you felt like say alittle walk to the shops you could still excercise to the level you felt comfortable. It’s surprising how your day can get filled up doing things you enjoy and being able to take breaks in between, pacing more can really help with pain I find . Grandchildren are brilliant for keeping us positive as I know seeing my 2 grandboys always lifts me. I found when my last grandchild was small I got loads of pillows so I could support myself sitting down for a cuddle, moving round can get uncomfortable, then the 3yr old I laid all the toys out on a mate and sat and watched him play. Hopefully you have mummy with you for when they visit, good luck with your decision and take care x

[Hidden]

Hi itgoesonandon, sorry to hear of your struggles. Maybe you could do a pros and cons list regarding giving up work to help you choose xx