Going to work with fibromyalgia

[fibrogirl41]

Hi im just looking for some advice, im sorry to rant on but i know you will understand, i am desparate for getting a job but am worriex about fibro affecting me i was so down i was considering begging for my housekeeping job back but dont know how it would affect me, i am not sure what to do for the best, any advice welcome x

[Bacaloca]

If you want to work and feel able, then take a part-time job where you can pace yourself, work hours that will not be too much for you and where you will be able to rest if need be. I used to work in the hotel business, but I had to stop because it got too much for me to clean the rooms. I also worked behind the bar, but I had to stop that because I began to drop too many glasses. Now, I don't work at all; I often miss it, but I find other ways to fill my time that are safer and easier for me. I hope you find what you are looking for.

💜 gentle hugs

[fibrogirl41 in reply to Bacaloca]

Thankyou so do i and i am going to the jobcentre to ask them whether i would be better of on jsa and universal credit or reinstate esa allowance next week, hope you are okay. Gentle hugs back ❤️😁

[DoubleMalibu in reply to fibrogirl41]

Hi finrogirl41

Are you the lady who asked for advice on benefits last week? Think I and other members replied to you and you said you were going the job centre weds or Thurs Last week, how did you get on?

Were they able to help sort everything out for you?

[fibrogirl41 in reply to DoubleMalibu]

They helped i am seeing someone tuesday to further sort out things and discuss jobs etc x

[Dinkie]

For me working is essential for my mental health, fibro pain seems to intensify if I am not working, mainly I think because I concentrate on the pain instead of my work. However finding employment that is suitable is another matter. I wouldn't be working if I had not got "reasonable adjustments" in place as recommended by occupational health.

I realise I am one of the lucky ones but it proves that it is possible to have fibro and work. I also have other health conditions too so do thank my lucky stars that I can still work and have a relatively supportive employer.

[fibrogirl41 in reply to Dinkie]

Thankyou, i do worry about leg pains and things i have cried tears about my old job, missing the people i hope one day i can go back and they would have me as i worked there along time, you are very lucky and what do you do for a living if you dont mind me askibg x

[Dinkie in reply to fibrogirl41]

I advise and prescribe and fill prescriptions for parasitic control in farm, equine and small animals. I am part time now as I am getting on in years and I still have to do quite a bit of training every year to keep my licence.

[fibrogirl41 in reply to Dinkie]

Wow what a job you must have gone to college to do alot, well done you x

[Gigiruth]

Hi Fibrogirl41If you are on ESA check out permitted work. Take benefit advice if needed.

I changed my job during covid to work from home by telephone and webcam.

No travel cut down the time. Missed the busy office but carried on working.

Some employers do hybrid too.

I work in mental health support so had a number of years training.

When your benefit is sorted you can ask a work coach about training if you want some to change the job you can do. You will have lots of skills to transfer to less physical work.

I am now self employed so totally control what hours I work.

I hope you find a way forward that works for you

Take care

Gigi

[fibrogirl41 in reply to Gigiruth]

So do i, hopefully going ti do some cyber security courses in september if i can afford it x😁

[Gigiruth in reply to fibrogirl41]

Depending on the level you may find some are free. Check open university and ask your work coach. Enjoy!

[Gigiruth in reply to Gigiruth]

nationalcareers.service.gov...

[Elle247]

Work is a great distraction for me. Dont get me wrong it can be really hard as my job can be stressful which we know is the enemy of fibro but if I don't work I would feel I'm defind by my fibro and my mental health would be greatly effected and I dont want that. I work part-time 27 hours per week, I don't think my job helps my fibro as I find it hard to pace myself as I want to go 100 miles per hour so I have to work on managing my stress and slowing down. The day may come when I need to cut my hours back a bit but for the time being I shall keep working as I feel it gives me more than not working. Good luck in your job search, hope you find something suitable 😊.

[Coffeefan]

Hi, I work as a fitter and QC for Specsavers group, I fit lenses into frames. I'll be honest I can only do it because I sit down and it's not too physical but it still takes most of what I have. It does help mentally to get out and work but on bad days where I walk funny or have a face permanently strained in pain I worry that people think I'm faking and get really self conscious, I say to myself that they are thinking " she was walking ok yesterday and now look at her" they aren't as they are a great bunch of people but they don't understand. Some days I can hide the pain better than others. I'm also lucky to have the job I've got as I know I wouldn't be able to do much else

[Southport-beach]

I used to clean holiday cottages for the National Trust and other privately owned cottages. I found the 5 hour shifts combined with the stress of ensuring that any urgent repairs etc were carried out before the new guests arrived was too much for me and I was in constant pain. The upside was working at beautiful cottages in the stunning North Devon countryside. I gave up the holiday cottages a couple of years ago and now have a handful of carefully selected lovely domestic clients that I clean and garden for. I started with a couple of 2 hour cleans a week and slowly increased my hours from there. As I get on well with my clients my visits are usually a mix of working and chatting. This gives me a social outing and my, mostly elderly clients, companionship for a few hours each week. My clients all accept and understand that I have fibro so I can work at my own pace. The pay is also better and I earn a lot more per hour self-employed than I was wearing myself out in any of my previous jobs. It's not glamorous but I no longer dread going to work......

[Cotswolds25121 in reply to Southport-beach]

hi👋reading your post I thought how wonderful. It sounds great that it benefits not only you and what you are able to achieve but also your clients sound lovely to work for and they benefit from your services too😁what a lovely outcome x

[Southport-beach in reply to Cotswolds25121]

Thank you for your kind words. Being self employed doesn't give the guarantee of work but it gives me the flexibility I need, money in my pocket and some warm, friendly company. It also gives me a free workout and when gardening I get to earn money from my favourite hobby and use my RHS qualifications. So it works well for me. Knowing you are appreciated is lovely as I have had some really stressful jobs in the past......

[Cotswolds25121 in reply to Southport-beach]

Yes that’s very true! Self employment isn’t always an easy thing. As you said, it can be unreliable in terms of employment and no sick pay to be relied upon. Mind you, even in the care sector sick pay where I work has been stopped altogether for new staff since approximately 3-4 years ago. I’m one of the ‘luck🙄ones as my contract is older but even I am not entitled to sick pay since last April as they use the Bradford factor! Sorry, I’ve gone on a tangent now, so even having 1 day off sick times by their used solution? Added up to me losing sick pay until this April😡I had emergency appendectomy and was off for three weeks and didn’t get paid a penny apart from ssp😡and because I had 2 days off since appendectomy I was told last week that I now have to wait until July for sick pay to be reinstated 😡it is disgusting! I have worked at this place for 16 years this June and have gone in when I’m sick, taken a/l when I’m I’ll so as not to go over the Bradford factor points and yet that’s how I get treated. So much for a care sector employer! Also we are of course always picking up viruses, bugs etc as our service users are so vulnerable but there is no recognition of this fact at all. No wonder people don’t feel loyal to employers anymore because they show no loyalty to hard working employees who go above and beyond😡I’m so sorry I just got really angry then about sick pay when I mentioned it to you🤦‍♀️back to you 😁I hope you are able to continue doing your much loved work(I have always loved my ‘job’ too) and what I was trying to say in such a long winded way was if you were an employee and not self employed then you still probably wouldn’t be afforded the benefit of not worrying about what happens if you have times that you cannot work so enjoy every day of going home at the end of the day knowing that you feel happy, content and are doing something worthwhile and making others feel good too🤗x

[Southport-beach in reply to Cotswolds25121]

You have my sympathies. Many years ago I worked for a small business. Unfortunately I had to have an emergency hysterectomy and was off for some time. I suggested to my employer that he should give me SSP but he wouldn't even consider it and he said that if I needed to go part time or couldn't do heavy lifting when I returned he didn't want me back and that I "knew what I needed to do" as his business couldn't afford to have an employee that wasn't pulling her weight.....I hurled my toys out of the pram and left in digest! Fortunately I quickly found another job with a lovely understanding boss!

I had the same problem when I had my Fibro diagnosis. I asked to reduce my hours or vary my role. My manager said no & basically told me to leave. I could have taken them to a tribunal but I couldn't face the hassle so I found another job instead......

I am fortunate that we can manage financially if I miss a few days work here and there. My clients also understand as they sometimes cancel me when they are ill, so it works both ways.

I admire you for sticking at it in the Care Sector. The level of responsibility far exceeds the pay and treatment staff like yourself receive. I considered it and was offered a job which I decided to turn down. I would have enjoyed helping the clients but I think I would have very quickly become dissolutioned with the businesses involved. In my experience Carers are vastly undervalued and the vast majority are dedicated kind people doing their very best for their Clients. I really hope things improve for you. Take care of yourself.

[Cotswolds25121 in reply to Southport-beach]

Ahh, thank you for your lovely reply. Yes, to all you said. It’s so disheartening when you really are just trying to support people to live fulfilling lives and you get kicked in the teeth (sometimes literally when clients display challenging behaviour) but I never thought when my colleagues said many years ago give it time and you will become disheartened, disappointed,disillusioned and any other kind of negativity feeling’s but sadly that’s how I now feel and understand what they meant. Anyway, I’m so sorry you had such awful, disappointing experiences with bosses too😔😡and I’m so pleased you are your own boss now 😁😁dinner is calling so bye for now 🤗🤗x

[kittylove]

I work full time and it’s so tough. About 1 1/2 years ago I had to switch jobs to one working from home, which is much better for me. My new boss is so understanding too. If you can find a great boss and something lower in physical work I’d say go for it as the social side helps me with my mind set. Just don’t get one that overwhelms you . Good luck

[FibronewbieJab]

Hi fibrogirl41, I work in an office doing administrative and accounts. I am nearing retirement but I too find that working is beneficial for my mental health. I only work part-time and in the afternoon as getting myself up and ready takes time.If you feel you can work then do so. Look for a part-time job where you are not doing lots of physical work. I hope you get something suitable that works for you.

[fibrogirl41 in reply to FibronewbieJab]

So do i, thankyou for your reply x

[Deeb1764]

I actually had a really good chat with my DWP advisor about all of this as I have fibro plus a lot of autoimmune conditions BUT my head on a lot of days is ok for a 4 hr window if the body is not. However I also feel if i go back to work and fail it will make me feel worse for me and for the company too if I let them down. He suggested trialling as a volunteer somewhere so I can see what I can cope with and work out how many hours if at all possible and days.

So I am starting slow ie WFH 6hrs a week for a charity and see how this goes. I know money is important but it might be a good way to start figuring it all out with not as much pressure.

[PAULINE15]

I’ve been retired for two years and I wonder how I managed, I was retail manager for twenty years but felt I didn’t do my job to the right standard for the last ten years, lock down helped me stumble to the finish line and now I can sit down to rest when doing a task, if you feel up to it try something part time where you can sit, going to work can give you a sense worth, do what’s best for you and you wouldn’t know till you try x

[SassiLouie]

My doctor says i'm his highest functioning fibro patient. He said keep doing what you are doing.

Here is the basics of what I have found as part of the root issue.

Its a lack of digestion issue----With lack of quality of sleep.

If you cannot breakdown your food into usable nutrients..you cannot repair the muscles at night when you sleep.

When you sleep....is when you repair your muscles.

When you can't sleep because you are in pain..it becomes a never ending cycle.

It's a very long story of how I figured this out..so I will spare it.

Here is what I did.

NUTRIENTS and BREAKDOWN (predigested AND OR enzymes)

Breakdown food.

After a meal eat 2-3 chuncks of RAW PINEAPPLE..not CANNED..the enzymes in pineapple do two things. Breakdown and digest your food rapidly in your stomach.

Bromelain helps with muscle pain. This might take 48 hours for you to start feeling the effects..but try to get some pineapple in you..but don't eat a whole pineapple..its very acidic and can give you stomach problems. 2-3 chunks is enough to breakdown a meal in one sitting. Do not eat before meal.

PREDIGESTED NUTRIENTS

BLENDING into a smoothie breaks down the food so your body doesn't have to spend the energy to break it down. This will save you a lot of energy later in the day.

Use smoothies with high nutrient foods.

Cup of ice, Cup of almond milk or a milk of your choice to start as a base. I would avoid a lot of sugar and dairy while you try to work this method.

MORNING SMOOTHIE

1 Banana for 9 essential amino acids

A fruit of your choice..just a handful...strawberry, raspberry or blueberries etc. Blueberries are great for eyesight issues.

1 scoop of peanut butter or an alternative nut (almond Butter) fat for flavor and to make you feel full.

2 table spoons of Carnation Instant Breakfast for both nutrient and flavor. Its the one that doesnt have GMO in it. Unfortunatley Ovaltine now does.

handful of RAW PUMPKIN SEEEDS.

handful of RAW PECANS

Can also use some chia seeds

SIDE NOTE: avoid sugars..even though a banana and fruit has it..drink this slowly over 30 min or so...this is why you need to add ice. Take your time sipping it. But don't let it get warm..keep adding some ice cubes to keep it cold. Because its broken down fruit ..it will start to go bad quickly.

FOR SLEEP

Fenugreek Seed capsules (take one or two) before sleep. This helps you counteract any sugar you've eating throughout the day. Your liver detoxes around 3am which is why you might find yourself waking up around 3 or 3:30 am and up for about 2 hours. The detox releases the waste into your bloodstream acting almost like caffeine...waking you up. Fenugreek seed counteracts this caffeine like effect. (See "Sugar, The Bitter Truth" on youtube - a lecture that describes the liver detoxing effect)

ASHWAGANDA

I like Goli Ashwaganda gummies. I also don't like to fly and it helps me before getting on a flight. It relaxes you before bed...helping to get you to fall asleep. If you need to take a warm to hot bath before bed..that also helps.

OK the NEXT one is a hard one for most people to swallow because we were sold a partial lie for 50 years.....and the internet has been scrubbing the data.....but PubMed supports the findings...

PIPE TOBACO (NO..not cigarettes)

Now before you think I'm crazy..I have a friend, who is also a doctor, and I had her try it with me. She was having soreness and stiffness in her hands and within 20 minutes it was gone. I didn't know she was having this problem. Now, she is a fan of pipe tobacco. She went and did her own research..that yes.... NICOTINE fills in the receptor sites of your cells giving it about a 5 hour virus immunity and stops free radicals bombarding your cells. It takes about 2-4 days for the nicotine to leave your body.. BUT This is why smokers were not ending up in the emergency room with flu or colds during covid.. they just weren't ending up in the hospital with the virus.

HOWEVER, NOTE- the bad part about cigarettes is they have been laced with pesticides and the paper full of chemicals since the 1950s to keep the product shelf sustained.

This is why were are talking about PIPE TOBACCO..... not cigarettes.

ALSO NO VAPES - do NOT GO NEAR VAPES

OTHER BENEFITS --- GREAT FUCKIN SLEEP.

Nicotine helps with inflammation! I now get good that ol fashioned drowsy at night around 11pm..the kind you remembered having as a kid..where you can't keep your eyes opened..YES that kind of drowsiness.....and now also vivid dreams. Got the dreaming back!

SO - Pipe tobacco is treated differently. It's not supposed to have shelf life. I prefer the aromatic tobaccos. You can get organic papers or use a pipe. I like the pipe. I smoke about 3-5 puffs about 2-3 times a week. Im falling asleep around 10:30 to 11pm every night.

You can purchase it online or find a good tobacco shop.

ARTICLES BELOW on PIPE TOBACCO

newhealthadvisor.org/positi...

Here was the list that somehow was all over the place and then suddenly in 2023..started to get taken down..even though PubMed studies prove it.

web.archive.org/web/2023013...

---------------

Everyone is different..but I think this will get you started to finding what works for you.

If you are hypothyroid like me..then slow metabolism does play a part in the digestion cause. I also take sometimes some digestive enzymes with food....but the pineapple kind of does a similar thing.

This all has helped me be able to do the housework, clean my own pool, Run my errands...and now I'm now down to maybe 3-4 days a month which are not my best days...but I can still manage to do dishes, laundry etc.. if I had to on my bad days. I will take more rests those days or a nap. The nicotine helped me also be able to nap during the day if I had to.

The only medication I use now is my Thryoid medication. That's it. The stuff they prescribe is so harmful..but if you need to take it...you need to take it..I just never got any benefits from the pharmaceuticals.

[fibrogirl41 in reply to SassiLouie]

Thankyou that is very imformative ill try some of these things x

[SassiLouie]

Yes..please try at least the smoothie and pineapple to get started..reply back after 48 hours..let me know if there is an improvement.

[Lemony990]

Hi fibrogirl41, I was diagnosed with Fibromyalgia and ME in January of 2017. I was recovering from an extreme hysterectomy towards the end of 2016 when I developed those conditions. I tried returning to work full time but struggled with the fatigue. Over a period of 2 or 3 months I went from working a 40 hour week to 24 hours. When the pandemic hit I was furloughed and then made redundant in the September that same year. I couldn't afford to be out of work and so applied for agency work. I found that even though the fatigue was still challenging, I was able to work from home full-time. I didn't have to worry about the extra time needed for travelling to and from work and I could close my eyes, having set an alarm, during my lunch hour. I was working from home until June last year, when my contract ran out (there were no permanent positions available with the company I'd been temping at for 2 years), and was forced to find new employment. At this point everything had pretty much returned to normal and most employers were no longer providing hybrid working or full-time remote working. I knew I couldn't go back to part time hours and so applied for a number of full-time positions that offered any sort of hybrid working. I got plenty of first and second interviews, but the minute I asked about the hybrid hours, I'd be told the information was either incorrect or only available after 6 months. Eventually I applied for a position with the company I have now been with for 6 months. They hadn't been offering hybrid work, the appeal for me was that it was literally a 5 minute drive from home. Being full-time office based is still challenging and difficult a lot of the time, but I persevere. I think any position involving a lot of manual tasks isn't suitable for someone with the conditions we have. Administration positions are definitely the best way to go. I'm happy in my job, I've got really nice people around me I hope your predicament is soon resolved. Xx

[releasethemagic]

DWP run a scheme called Access to Work. You'll find details here: gov.uk/access-to-work

Before I retired, I had help from the scheme on three occasions to enable me to carry on working in an office. They paid for a suitable chair, for an upgraded computer and for voice-input software, several times over 20 years. They undertook a premises survey too to identify hazards and impediments, like really heavy doors I struggled to pull open. Electric motors were fitted to make it easier. They can suggest help that you have not even thought of.