Working with fibromyalgia

[stacylee78]

Hi all, I’m newly diagnosed with fibromyalgia also have endometriosis. I suffer with chronic sciatic pain and chronic headaches. Brain fog and fatigue is awful, I’ve not worked since end of 2019. I want to work but worry about how I’ll manage, how many of you work and what type of work do you do? Thank you 😊

[AllthatGlitters]

Hey I didn’t want to read and run. I have endometriosis too as well as fibromyalgia. I currently don’t work. I use to work full time and could not cope due to my horrendous endometriosis and adenomyosis symptoms, chronic fatigue and general feeling of being very ill. I wanted you to know you aren’t alone.

Are you part of the endometriosis site too on health unlocked?

Are you on any benefits to help you?

It took me a while to realise that my worth isn’t based on a “job”, it use to make me really sad that I didn’t work. I will eventually go back to work part time, what that looks like I don’t know at the moment. It will be nice to hear what everyone else on here says x

[stacylee78 in reply to AllthatGlitters]

Thank you, I’m feeling sad and a little lost xx

[stacylee78 in reply to stacylee78]

And yes I’m with the endo group on here..

[Cotswolds25121 in reply to stacylee78]

🤗

[AllthatGlitters in reply to stacylee78]

I know how you feel xx

[Hidden]

I don’t work I haven’t since 2018 and I was slowly easing myself back into work before I had an official diagnosis of fibromyalgia in June but while I was doing volunteering work at pdsa helping with donations in may I would get burning sensation aswell as pains in my arms and elbows and pains in my hands and feet and I had was to leave early twice the second time I cried on the way home it was that bad and I haven’t been back since or looked for work But i feel somewhat better when I’m doing next to nothing and the moment do anymore everything feels worse 😩 going from being really active to being limited does take a toll and can be quite frustrating 😏

[stacylee78 in reply to Hidden]

Yes I used to be really active, I qualified as a social worker in 2016 which was a difficult thing to do at such a late stage in life. Thank you x

[kittylove]

I’m 48, a medical PA in the NHS and work full time but it’s tough! It’s just me, so I push myself to work as I have to! It’s not easy and there is a lot I have to pace or not do in order to work. Working from home during the pandemic was great as I had more energy but now back 4 days a week and 1 at home and it’s really tough. Everyone is different though so don’t beat yourself up if you can’t do it… x

[debwhit]

I used to work I had my own cleaning company which was very successful. Around 2years ago it all got to much for me the pain I'm in is unbearable I regularly sit and cry. I attempted to work part time but even that was to much for me , so unfortunately I've had to stop working altogether now. I feel absolutely useless and my pain is so bad that some days I can't leave the house because I can't walk. I really hope you get sorted and I'm so sorry for you love to you ❤

[stacylee78 in reply to debwhit]

Thank you for sharing, sending you lots of love and light x

[Yassytina FMA UK Volunteer]

Morning, you do have my empathy as my daughter sufferers with endometriosis and combined with fibro I can understand why you have not been able to work. Have you looked into any benefits to cut your hours right down ? There are times my daughter cannot get out of bed , it’s so hard she works 3 days a week/has 2 little boys as well. Xx

[Spider1]

Hi hun,That is so awful for you.

I am also a fellow Fibromyalgiast ( is that even a word?) I have mesh complications too.

It’s so miserable at times isn’t it. Trying to make people understand just how awful you feel at times.

I have been a nurse for 45 years and alongside a counsellor. I am now restricted to telephone counselling as some days I can’t get dressed. I hat treatments are you on love ?

Jackie xxx

[stacylee78 in reply to Spider1]

Thank you, I’m a qualified social worker but also wanted to be a counsellor. Thinking about training for this so maybe I can work from home... I’m on meds but mainly for sciatic pain, haven’t properly looked at meds for fibro yet as they want to get headaches under control first. It’s such a long process which is frustrating..

[stacylee78 in reply to stacylee78]

I’m on amitriptyline and duluxotine as I react to most meds. I’m sensitive to medication and foods, lots of allergies 😏

[Spider1 in reply to stacylee78]

I thinks that’s a brilliant idea. They are hard courses but so worthwhile when your qualified.Xx

[stacylee78 in reply to Spider1]

To be honest I have so many ideas about what to do as I’m really passionate about helping people. Just not sure I can put myself through the studying as i really struggled with my social work degree and I’m not getting younger 43 in a couple weeks. My ideas to be a nutrition/wellbeing coach and or counselling young people.. I’ve worked with families and children/you g people for 25 years. I miss it soo much x

[Spider1 in reply to stacylee78]

I trained at 45. Best thing I’ve ever done part from my Nursing.Why not try a ‘taster’ online and see how you feel. Xx

[stacylee78 in reply to Spider1]

Yes I have an online course in psychology and in nutrition. Just need to stop procrastinating 🙈

Thank you xxx

[Spider1 in reply to stacylee78]

Sometimes hard to get going isn’t it. Just promise yourself 15 minutes a day, you will be amazed how quickly you get it done without it weighing you down. Xx

[stacylee78 in reply to Spider1]

Thank you for your encouragement x

[Spider1 in reply to stacylee78]

If I can help in any way, just shout hun xxx

[Lillylilac]

My heart goes out to you sweetheart and to everyone else. I gave up my part time job and must admit that although very upset it has done me the world of good. However I am one of the lucky ones who was not that far off retirement. I was in Social work for 30 years and managed a lady who was diagnosed with Fibro 20 years ago. She struggled but got alot of support. Such as a chair fitted for her, a rise and fall table, reduced hours and work load and being told to go home when I could see she was struggling. I do think it will depend on what kind of support you can get at work. She also got Enhanced DVLA/PIP.

Have you been referred to pain management. I went on a course specifically for Fibro sufferers and it really helped me.

Hope this helps and best wishes. Try not to let it grind you down. Love and comfy hugs.

Lilly xxx

[stacylee78 in reply to Lillylilac]

Thank you! Yes 🙌🏼 be been referred to pain management but it’s a very slow process as they have referred me to a specialist for chronic migraines. They want to get those under control before dealing with fibromyalgia.

[Lillylilac]

So hope you find something to help with the migraines. They are so debilitating. Take care of you. Xxxx

[stacylee78 in reply to Lillylilac]

Thank you. Love & light Xx

[Lw_2020]

Hi! I have endometriosis as well as Fibro also.

I’ve been on statutory maternity leave since Dec 2020 (coming to an end soon) but before that I was doing freelance marketing/social media work (desk/computer based) 16hrs a week split into 3 days. Before covid I had to go into the office twice a week but afterwards was completely home working. I also had my own small business making and selling crochet clothing so I was probably doing 24hrs work a week but largely from home. Travelling to work was always hard for me so homeworking was really beneficial, although working at a desk for hours on end is still exhausting and would wipe me out. I would sit on the sofa with my laptop so my neck could be supported but then my rib pain would flare up. Definitely need to invest in an office chair with neck support!

If you have any skills you can use for computer based work I’m hearing that companies are much more flexible with remote working + part time hours post covid. I’m about to start looking for a job myself & i’m also worried how I will cope with working now that I have a baby!

There is a website called “chronically capable” (UK) which has ads for jobs that are chronic illness friendly. Im planning on checking that out soon. Good luck xx

[stacylee78 in reply to Lw_2020]

Aww thank you for this! Best wishes for you and congratulations on being a mumma xx

[MummyinPain]

Hi, I work as a teaching assistant in primary school. I'm meant to work 5 days a week, but last November I hit a wall (not literally) and needed 3 months off and then a gradual phased return. I'm due to start back 5 days in September, but very worried about this as I'm struggling to cope during the school holidays with very little pressure upon me 😏 you need to do what's right for you! Everyone's fibro affects them differently. Go through an agency that helps people with disabilities get back to work, that's what I suggest, as you'll be able to try out what works for you with employers who support those with disabilities returning to work. Don't rush it! All the best xxx

[stacylee78 in reply to MummyinPain]

Thank you and all the best x

[fabpup01]

Hi, I work around 30 hours a week but I am lucky in some respects that I work for my husbands business and also work from home. There are days when I have strict deadlines to get work submitted but most of the time I can take a little rest as and when I feel I need to.

[Sally444]

Hi. I work full time as I don't have a lot of choice. My job is quite stressful and I do struggle most days, particularly with my hands and eyes. Thankfully I am desk based and manage the Finance & HR so I can decide what I need such as desk risers, larger screens etc. I did have to take some hours off last week though as my eyes just decided to give up and I couldn't see what I was doing! I'm working from home and am dreading going back into the office as I don't have the energy. Sometimes I just want to say enough is enough but I have a mortgage still so need to get that paid off. The website below mentioned by Lw_2020 sounds brilliant. I might take a look myself at some point. I hope you find something that you can do but don't give yourself a hard time. We all try to do too much these days and end up making ourselves ill!!!

[dippystuff]

I'm still working as a nurse. But instead of working in A &E on 12.5 hr shifts, I now work as an immunization nurse (babies rather than adults), which has suited me well. I can park next to the clinic and am seated for the majority of my 7.5 hr day, but still active enough to stop me losing physical fitness. However, it took me breaking down at work to finally admit I couldn't continue working in A & E. If it wasn't for my very supportive Band 8, who organized several short term placements for me while I was on the redeployment list, I would've just thrown the towel in completely.

As it was, I found I really enjoyed working in other departments including Day Case Unit and Theatre Recovery, and ended up covering longer term maternity contracts for over 3 years until I finally found a permanent immunization nurse post.

I know that I will be able to continue in this post either until I retire (still 10 years away), or have to stop work entirely due to ill health because although I currently work full time, there is always scope for me to gradually reduce my hours if necessary.

Keep looking for something you'd like to do which you can do physically, because sometimes the journey leads you to where you need to be.

[stacylee78 in reply to dippystuff]

Thank you 🙏🏼

[150120]

Hi Stacey,

I too have fibro and has been working with the pain. Im just doing sort of IT + customer service job. I am so forgetful and fatigue all the time. I sometimes tend to forget my own login sometime and job related issue. I am afraid there is not much help from the government for fibromyalgia other than Doc giving us med after med. Well I was in the Pain Management course and they say, exercise and relaxing our mind helps to cease the pain.

[stacylee78 in reply to 150120]

Thank you, this is my concern as my brain fog and fatigue is quite bad.. Meds make it worse and supplements and alternative therapy is s so expensive!!