I am 31 years old. I was diagnosed with fibromyalgia in 2014 although I have suffered with it since being an early teen (I was always fobbed off with ‘growing pains’).
I have always worked full time and put so much in to the work that I do. As I’ve climbed the career ladder and the stress and pressure have increased I’m finding that I can no longer function properly. My flares are increasing, the fibro fog is horrendous, I’m constantly in pain, cannot sleep and the fatigue is out of this world.
I’ve always lived alone private renting since being 18 years of age, I like my independence.
I’m finding this soul destroying and I don’t know where to turn. My monthly bills are super high so I couldn’t afford to give up work completely albeit that would be the best thing for me.
Any advice or help is more than welcomed. I’m starting to give up the will and I im struggling to be able to think clearly in order to ‘save myself’.
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Boam
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Snap, my Mum was told by our GP that I had 'growing pains' (which turned out to be the hypermobile type of Ehlers-Danlos Syndrome) many years ago, when I was about 9. One has to hope that Drs have become more educated, but sadly not always the case.
To try & get the balance between needing to work financially, & needing to look after yourself, I'd suggest:
- asking for an Occupational Health assessment to determine the help you need to continue your employment (even if this is with reduced hours). 'Reasonable adjustments' can be discussed. Please see: acas.org.uk/reasonable-adju...
hi it can be very hard everyone is different I fifinally Had to leave work I have reasonable adjustment and reduced hours but in the ling run I could no longer get function I was taken to hospital every other month for nearly a year cause of uncontrollable flare ups and also found I had now got other health conditions in packing my fibromyalgia flare up. Since leaving work I am now on a walking frame and can no longer go out by nyself I ha e moved into a council bungalow and also call step change so that my debt where sorted our as ending work ment I could no longer pay my bills the pai is constant and brain fog a regular occurrence but I now find that the flare ups don't last as long and I have not been taken back into hospital for flare ups I nearly 2 years so for me ending work was the best option I also have a lot of meds and have done mental health with cams and also pain management which was very insightful. I don't k ow if you have spoken to anyone about pain management but I would definitely ask to go on a course. Speak to your doctor about a letter to move to a more suitable council property they can give you a letter to support your application then book an appointment with adult services occ therapy at council to come out and give you an assessment to be medica into a council property and then apply to the council.council.under medical grounds so that you have don't have to wait years to be housed this will give you a lower rent so if you do reduce your hours go into another roll or give up work it is one less thing to worry about step change can help with credit cards etc and your work also has a duty of care for you so They cannot just end your employment get the doctor to sign you off for a while you may find that having some time to yourself and time to get things rolling with the council is all you need to get things back on track I did it thinking I would not end up going back to work but after 7 month I went back and stayed in work reduced hours and a new roll for a further 3 years which was enough for me to sort out nearly all my debts get rehoused and take back some control on my life. Although I am in a lot of pain everyday still and due to other condition can hardly walk I fell my relaxed as I don't have to worry about getting to work dealing with my team members and awkward customers mo ey is very tight but it was tthe Best thing for me maybe it will be for you and if you do give up work cause of your age you may still be able to go back to some kind of work in the future good luck with everything I known it must be hard for you right now but there is help out there you just need to know where to look and once you see the council they can get otherothers to help with money extra
Hi Boam,You don't say what sort of work you do. I have a predominantly office based role, but I do a lot of travelling between offices. I have moved to part time working, where I have Wednesday as a non-working day. I have slightly increased my working days, so it means I'm working 86%, which obviously means I get paid less, but only having to hold it together for 2 days at a time really helps.
I agree an OH assessment is super helpful. You do have to keep reminding people what you need. I am very insistent on proper breaks. Everyone benefits from them, but I don't function well without them.
If I am having a flare, I tell my team that I need a bit more support, and I can sometimes delegate some meetings. I try and schedule things that need more thinking about at the beginning of the day. If a deadline is close of business, I usually negotiate this to be before 0900 the following morning. That means I can do it early, it makes no difference to them but it really helps me.
The reality is I don't get what I need all the time, but it's worth trying. In general other people have their own stuff to worry about, they aren't deliberately making things harder for me. And they will try and help when they are reminded.
Of course none of this might be applicable or possible for you. But just trying to work out how you can get a bit of flexibility might help.
Hi BoamI gave up work as I could not cope with it. I agree with what the others say about OH assessment. Make them work for you. They have to be seen to do this.
Also have you put in for PIP. They have advice on here regarding benefits. You can get PIP and still work.
Benefits and Work are a brilliant site too for advice on how to get benefits. You might not want to do this however you have to think that if you were well you would not need them. It is not your fault you are ill.
First to help address fibo-fog, keep hydrated and form a regular sleep pattern. Water in reach all day and take a few sips every half hour. Sleep hygiene, slow down and prepare for sleep at a regular time, in a ventilated room and get up at the same time each day. If you can take time to relax in a bath, PJ's on quiet calming music or mindfulness app and a none caffeine drink. No TV in the bedroom lol.Working full time can be used to your advantage as it keeps you motivated and moving.
At work, speak to occupational health. You don't say what you do, but OH can organise equipment to make your life easier and arrange for regular breaks etc. At break or lunch, go outside and sit in the spring air or a short walk will help focus for the afternoon.
For example, I have a desk rise and sit desk, ergonomic chair, wrist support and dictation software so I can work from home. Not driving 30minutes a day has truly helped, and as the phone is trough the computer I don't have to worry about my fingers seizing up during the day. As long as I can speak it is possible for me to work.
Mindfulness app can be downloaded from the internet, choose one (without in app purchases, the free ones are the same) or visit the MIND website and use the ones they suggest.
Good luck, positive thoughts are our best friend. Hugs xx
Hi Boam, when I got the email that said you were diagnosed at age 31 my heart went out to you. I was 31 when I was pregnant with my first child and I thought it was high hormones good for my baby but bad for me. I was a RN working full time and a licensed minister which my husband and I pastored a small church together. I started missing 1 day a week then 2days a week then 3 and 4 days before they put me on light duty. I was then able to work most days but still missed a day here and there. My OBGYN told me to give up the ghost on working after being admitted to the hospital for preterm labor. After I was discharged Tuesday I went to work the next day but after that I had to call out the next day. After I had my baby I felt better but felt something was off. We moved out to Wyoming where the natives said it takes a year to adjust to the altitude and climate. I got 3 part time jobs which equaled full time work. Over time my health deteriorated and had to give them up one by one. I ended up going on disability. All this said was what I experienced. With the fatigue, fibro fog and pain it effected my ability to work. You need to listen to your body on this. But as I’m able to help you as my younger me save up what money you can and put into an IRA. (Retirement account). I did not have anyone to guide me. I also have a identical twin sister who didn’t get sick with with fibromyalgia nor chronic fatigue syndrome and was able to save and invest now they go on cruises twice a year 2-3 weeks at a time. My first husband divorced me and second husband caught COVID and didn’t make it. I’m having to work very part time to make the money last till the end of the month. I don’t want you to struggle when you get older. I wish I had found a cure for this thing. You name it I guinea pigged myself into trying things that sounded like it would work. Still trying but I don’t see the light at the end of the tunnel yet. I know you take pride of living independently since age 18. I hope someone is able to give you better advice. It really depends on the severity of the symptoms you are experiencing and other health conditions that go along with the fibromyalgia as to what you are able to do. I didn’t have growing pains as a teenager. I was relatively healthy.
Please see below the reply I just responded to another post here …. My advice to you would be the same … check b12 levels and vit d levels and look at the pernicious anaemia site here
Good luck and gentle hugs … I am also trying to help my daughter here to with an array of symptoms and currently inject with b12 myself …
It’s an avenue to explore maybe
have you had your b12 levels checked …. Even if in range your levels could be low and symptoms are similar …. Watch Sally Pacholock to see if you share any similarities …..Look on the pernicious anaemia group on health unlocked ….. or put up a post …Good luck with this needle in a haystack but I’d continue looking …. I have chronic fatigue aches pains and b12 injections are helpful to me
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