How many hours approximately per day ... - Fibromyalgia Acti...
How many hours approximately per day do you need to rest due Fibromyalgia's main symptoms pain & fatigue ?
Mdaisy528 VotersPlease select one:
I have to work 36hrs over 3 days. Finish work collapse. Days off - basically do nothing but rest. No work life balance. Actually NO LIFE !!
I can really appreciate that. I am self employed but only managing 6 hrs a week at the moment. It's a struggle to cope with that but what am I supposed to live on. It's hard enough coping with the illness let alone having to worry about money too.
Oh dear yes the stress of living with Fibromyalgia and trying to work can be so distressing and actually make the symptoms worsen but as you say we need money to live. I think the poll will highlight how many people living with Fibromyalgia are working to live and living to work unfortunately 
I have fibromyalgia and chronic fatigue. I have been taking 1tspn of D-ribose twice a day for weeks now. I dissolve it in a little water. It has made the chronic fatigue almost non existent. I still have my off days but usually if I have a fibro flare up. That I have no treatment for except Palexia SR which doesn't do much. Will be trying Tramadol for the unbearable pain that comes with a flare up. Hope this helps.
Oh that's not great for you, be careful you don't burn out as keeping this up long term is not achievable. Have you found out about your work rights for reasonable adjustments to make work life easier hopefully then not impacting on your spare time so much. Here's a post with websites who might be of interest and also it might be worth ringing the FMAUK Benefits Advisor who can also help with work related issues.
healthunlocked.com/fibromya...
Hope this helps
Emma 
I'd love to contact your benefits office but been disconnected by mobile company. I am the lady whose partner was killed in Turkey & stuck there trying to sort things out. I'm in sheltered housing in UK 1 month now, waiting for universal credit payment, due 9th Nov. I cannot work, mental health affected, broken breastbone & pelvic injuries not healed properly, M.E, Fibromyalgia, PTSD, Osteoarthritis, mobility restricted. My friend paid deposit for me to live or I would be homeless. Olive somewhere I do not know, no friends, no family, no connections, no car. I feel isolated, compounding emotional & mental health. Can you help please?
I'm so sorry for the situation you are in it will most likely be making your symptoms a lot worse you really need to apply for p.i.p asap and ask about hardship payments whilst you are waiting for the universal credit payments to start i too live isolated from the world no friends or family so i understand the impact it has on your mental health i know it doesn't seem like it but i promise u will get through this tough time and things will eventually sort themselves out x
Thank you so much, Milton. I know what you say is right, but, at the moment I'm sinking. This is hard to admit as I'm always so strong. Take care
Unfortunately not, as FMAUK Benefits Advisor has the knowledge access to up-to-date info and insured to give this advice. You can email her as per the link, or complete this contact form (link below) if you cannot phone at this time.
fmauk.org/rc-contact-list-s...
I'm genuinely sorry to hear of your plight and the system is letting so many down. Do contact your local MP and council for help too.
Janet would be happy to help advise via email
Emma
Currently in burnt out mode with absolutely no sign of improvement, plus sorry for this,but I'm totally pissed off with people thinking they have empathy for us,the fibromyalgia army, when they don't know the meaning of the word!! I've become so tired of trying to explain how I'm feeling, and they just say "oh dear, that must be terrible?" And they start taking about the trauma of a broken nail!!! LOL!! And expect us to say "oh no! I'm here for you!" Heck!? What can we do!? John.
Why do you have to work 36hrs in 3 days You say yourself there’s no work life balance but you must find one to help yourself before you make yourself worse
Might be in the NHS as now staff are being told to do 12 hour shifts this is because I think that smaller shifts were meaning more sickness and expensive for hospitals to cover. This way hospital staff at work longer but get more days off to recover however, this works well for the healthy staff but not for those who have long term conditions unfortunately
I have not been able to get any help. I do those hours so that I only have to get up early 3 times. Doing care work !!! Feel like swapping places with residents
I have constant pain but try my hardest not to give into it cause if I did would never leave my bed but even in bed I’m in pain I have a job which I have had to cut down to 16 hours but even that is very hard with pain totally exhausted even though it is a desk job I have to walk with a frame now and loads of pain meds I need to rest but can’t sleepnia a thing of the past these days
I have just started work, only doing 10hrs but already wondering how I’m going to cope.
If you need to speak to someone about your rights you can contact the FMAUK Benefits Advisor, all contact information in link below;
healthunlocked.com/fibromya...
Emma
Just try your best everyday is a new day you will learn what you can and can’t do always join a union if one is there if not join on line so you will have someone to rep you if needed I hate the way my company act towards me but I also know that I have bills and to to honest it is the only time I get out of the house my partner does the shopping as I tried to do it online but I have bad dyslexia and what I think I’ve ordered is totally different to what I did order 😂 so gave that up as a bad job good luck with your work I hope you have an understanding boss
I feel exactly the same as you, but luckily I'm retired. Don't know how on earth you manage to work. I think we somehow manage to get the strength to do the things we feel we really have to, but it doesn't always work! Lots of love to you and all other sufferers. 🥀
That is me I feel totally exhausted but I make myself get out of bed and everyday go for a walk. I don't want it to beat me.i was so active before working over 40 hours a week. I work from home now. But it doesn't help with bills etc.
That’s a very hard thing for me I used to be a roofer which was unusual apparently cause I am a women I also used to lead a team of door staff at several night clubs have always been so active and now struggle to walk have things in the house like bath boards raise toilet seats and have to use a walking frame all this seems to have happened over night even though it has been happening for years no social life and very rare anyone comes to the house any more cause they don’t know what to say don’t like seeing me this way or simply don’t need to be around someone who is now disabled I have been told that one person don’t recognise me as there old friend any more which really hurt but you know what they where never my friend to start with
And thats what folks dont see when they say we should to try to do more. They dont see how were were once very able and fit and likely way fitter than those having a go! We could do lots and we could recover after. Now we cant. We do less now because we simply cant do more these days. I am so fed up with being judged. Its as though folks think having fibro and missing out is oh such fun and they are envious.
True do you know I had a union rep who was in a meeting with some section managers at my company and they where discussing people that where off sick and of course my name came up apparently one section manager who has only meet me once in passing stated that fibromyalgia is all in my head I need to get a grip and stop using excuse and come into work (I was in hospital at the time with septic arthritis in my spine ) he then said that she concluded with read it up on the internet people with fibromyalgia have nothing wrong with them that’s why the doctors just give them a painkiller and send them on there way. Well I was fuming to say the least told the rep I wanted him to raise a grievance against her he would not as he said that he is not meant to tell anyone what is said in a meeting told him he is raising the grievance not me cause if they are so high up what example are the given to other employees but as you can yuess nothing was done she was just told to apologise to the rep for her comments I hate being like this but they do not seem to understand it is not just my physical health that is effected my mental health is shot most of the time
Hi i had that with a Bell end medic at Neurology on repeat visit saying it's just a pain thing!
Well if that's the case how come it's effected my ears/eyes and teeth? not to mention many other things.
But that's just a cop out for them as they don't have a clue but just like to spout there mouth off.
Medic didn't even fill paper work out afterwards so no proper record i'd been!
Next visit lady was good&saw head honcho sent me to his hospital in queens square as thought i had MS as had a big boiling water burn on hand he asked if painful i said no just itches!
Trouble with most is if you don't fit in with there agenda your stuffed!
But Fibro effects the muscles and we are mostly muscle as organs are muscles ie kidneys,heart.liver.bowels so anything that effects muscles effects them inc bladder!
My sister has kidney issues over it.
I used to work clubs back then did hours in the gym cycled miles and raced 100 miles was something to do in the morning before work when was on afternoon shift.
Was always on the go 250kg calf raises or everything could find on machine and 3 sets of 30 then hold on end of big toe just off floor.
But if you had MS would look pretty similar till very late stages so what would flubber chops say to that then?
Newly diagnosed but I find it varies from day to day.
On average around 5-8 hours daily. Have periods when it runs into days. At least once a month
You should not work so hard so you need an abnormal recovery time ,only do what your able to cope with so you stay in a normal recovery time as a healthy person.If you have fibromyalgia you need to work with it to suit your personal needs also what suits one individual will not suit another.You need to understand your own limitations and what you should or shouldn't do. If i over do it im going to suffer and i could not put a time limit on it as it could cause the fibromyalgia to spiral out of control taking weeks to get back to normal... Pain management, know your body. know your limits,stop and dont be to proud to say ive had enough for today.....
Thank You for your comment & you're so right !
If anyone reading the comments on this poll is existing like this ie working to live and living to work then the FMAUK Benefits Advisor can help explain your rights for reasonable adjustments etc . Here's a link that may be of interest;
healthunlocked.com/fibromya...
Emma
That is so true my problem is the company I work for time your visits to the bathroom and even when I have had to tell them that I need to break or go home they start telling me about sickness and final warnings forcing me to carry on when they can see I am clearly in pain but bills to pay and need to keep a roof over my head they don’t help at all I have special chair at work that needs to be changed but they have not done it yet I contacted access to work who sent me a tx yesterday stating they where gonna call me at 3 pm they never did even they don’t seem to be bothered and they are meant to help
It's awful to hear these stories of how badlu people with invisable illnesses are treated on occasion by their employers, please seek advise and find out about your rights by contacting FMAUK Benefits Advisor. Link below has all the contact info you need;
healthunlocked.com/fibromya...
Wishing you all the best
Emma
Rest when you need to rest is my advice.
I was on my bed last January to March about 20 hrs a day,they then decided I still have PMR as well as Fibromyalgia and put me back on steroids,I am 50% better now,but still very fatigued,I am 74 and was working still as a nurse but could no longer continue,it’s a shocking condition,just changes your life
I was a staff nurse too, 1 year light duties before having to give it up back in 2007. Also as the diagnosis process is so lengthy and I needed a 2nd opinion had no diagnosis so was sacked as couldn't work. No redundancy and for a period of time cannot claim benefits as I was dismissed - the system isn't fair !
Only diagnosed 3 weeks ago. I have been logging my time - so far no pattern/ variable except always 2 hours just after lunch time
Hi Flowerarranger interesting you mention needing to rest after lunch. I've stopped eating lunch at work due to this, couldn't keep my eyes open in the afternoon. I now fast with the exception of a cuppa soup or a banana until I get home at 4pm. It's seems to ease the tiredness enough to get me through work. It's good your keeping a log it will really help you to work out what triggers your symptoms and hopefully help you to pace your activities. Gentle hugs x
My answer was only based on sleeping hours. My total rest period including sleep is 19-23hours
It really varies, but works out I can't move for approx 12 hrs daily... I have tried different drugs for my fibro...eg Gabapentin, Duloxetine etc, but they all make it worse. I also need help with horrendous acute muscle spasms all over body, I can't function with them. My own GP prescribes Diazepam 2mg when needed which only help minimal. Other GPs in Surgery refuse to prescribe them at all. I can't even hold cutlery to eat or use a pen sometimes....can anyone suggest something. Please!!!
Muscles spasms sound like Myofascial Pain Syndrome (MPS) Trigger Points as Fibromyalgia is usually widespread pain rather than spasms. MPS can commonly be seen in people with Fibro and often people find Myofascial Release Massage therapy helpful but obviously this is private and can be expensive as you need someone qualified in this complementary therapy. Have you ever had Buscopan ?
I take baclofen , a muscle relaxant. Any anti spasmatic meds may help. Your doctor needs to go through them with you. They may take up to 12 weeks to be effective so very time greedy. Best of luck
Don't think I've tried Buscopan.....what type of med is it? I know I have had lots of different types of antidepressants and strong painkillers...but the side effects have been terrible sometimes. Pain Specialist says I seem to have a low threshold to conventional meds. I will ask GP about Buscopan. Thank you x
Its a antimuscarinic, more information below;
beta.nhs.uk/medicines/busco...
I had both for my cramps and so could be helpful for you but I believe more people seem to find relief from the massage, as expensive could you ask family & friends to help as part of Christmas present maybe?
For muscle pain you could also ask the GP about trying Capsaicin cream but if you are sensitive to medications this may not suit you and always apply with gloves plus have a 24hr patch test. It's made from a natural substance in capsicum peppers therefore very hot but can help some people with Fibro. It's said to naturally reduce the amount of substance P (excitable to pain) and as it's reported we have 3 times as much as healthy people then it is thought that is why it could be helpful to those with Fibro.
See link below for more info
versusarthritis.org/about-a...
Hope you feel better soon
Emma
Pain is constant in that it affects all of me. . Sleep is either impossible, brief, or interrupted by others stressors (than physical pain) such as need for ADL all which are a constant struggle with no help given to date. So are either undone or incomplete, etc. I struggle to understand the concept of “rest” as I’ve not be able to achieve it for so long.
Majority of time it would be from 0-5 but I do regularly have days where I need to spend the whole day in bed resting as I'm so exhausted, or pain is so severe xxx
For me it seems to vary from day to day. Often there is a trigger eg change of air pressure when a weather front is on its way but before it actually arrives, also stress, but there isn't always an obvious trigger. Sometimes I can just wake up feeling like I've been run over by a truck even though I think I've had a decent night's sleep. Maybe it's the quality of the sleep which has been poor, I often wake during the night because of back pain, leg cramps and/or restless leg syndrome so maybe these symptoms are constant even when they're not waking me up, they could be impairing the quality of my sleep. The same can probably be said for most people though. Getting up early is a problem for me, I usually feel better after a lie in.
Luckily my boss allows me some flexibility (but not complete flexibility) so I can still work but if they weren't so understanding I would probably have to stop working. I do generally struggle to keep on top of everything at home and often have to let things slide. Not too bad as my kids aren't really little any more. I just have to listen to my body and stop when it tells me to, there's no pushing through it, if I try I suffer more and for longer.
I do not need to rest more than normal with fibromyalgia; I’m in constant pain but not enough to debilitate me. My activities are curtailed solely due to muscle tightness and weakness but I can still do some gardening/digging, chop wood and cook (among many other things). It might take me longer than it did but this could just be the ageing process rather than the fibromyalgia. Who knows? I’m mostly retired.
You're lucky you don't suffer with the fatigue so much as others as the both can be a double whammy and really hard to cope with even if it isn't hard enough!! They say Fibromyalgia is not progressive but many say their Fibro has worsened with age but as you say is it the progression of the condition or due to other factors? It's hard to know
work 30hr week constant pain but need to work.All they seem to do is add more to work load with no thought for my condition until i say something i am always willing to do stuff but need to take my time all the hard work i used to do is all quickly forgotten.Not bad for a church school
So sorry to hear this - do contact the FMAUK Benefits Advisor for advice, all contact info in link below;
healthunlocked.com/fibromya...
All the local services are receiving pressure from above and this is definitely having an effect on those who are trying their best to deliver a service to people. Things need to change or we are heading towards a broken Britain with possibly with people protesting about the squeeze put onto public services.
Hope you get the help you need
Emma
I do agree and you have my admiration and my sympathy for it.
Bless you abundantly and sending my love ♥️ Hugs 🤗 kisses 😘 and support.
EJ 😊🌸🌿🦋🙏
Struggle everyday but my Mum who is 91 and lives on her own relies on me everyday. She is amazing but can't get out on her own. I ache and feel so tired all the time. Yesterday was a resonable day today i am knocked for six. I am lucky to be retired but it must be so hard for those who have to work.
ive been 24hrs for over 3yrs now do to hypothyroidism, someone crashing into my car, 2 stomach ulcers, liver disease, celiac disease and depression, insomnia. oh and fibro! (had for 10yrs) also going thru a long divorce. all affect each other.
i have about 1-2 afternoons a weekthat i can go downstairs for a few hrs in pjs. 1-3 afternoons a month dressed and out of the house. 12-20 days a year dressed and out, never consecitively (usually doctors and/or hospital visits)
the rest of the time, im in bed with struggling visits to the loo (5metres away) trying to get comfortable, trying to stay awake in the daytime and not asleep. or just to sleep- i usually dont sleep for 3-4 days then sleep nonstop for 2-days, having to concentrate on the simpest of tasks, which undoubtedly cause more pain. my bedroom has become my prison. im an inmate with occasional good behaviour time out.
im sure many feel this way.
Totally empathise with you first 3 years it was the same for me then 3 and a half coping ish years (but in comparison much better quality of life) now back 24hrs again for last 6 yrs and counting. Trying to get better but keep getting knocked back..........so frustrating! 
aarghhhhh Keep as strong as you can....Have you tried CBD oil , TENS, Capasicin at all? Sending a virtual hug x
thanks mdaisy.
i havnt tried strong cbd nor capsican but willdo.
currently on morphine oramorph gabapentin duloxitine baclafen buscopan lansoprazole renatidine levothyroxine antihistmine and oxytetracycline for 3 mnths for severe rosacea and sebhorreic dermatitis
anything to get off that lot!
Gosh on so much but still suffering. You've obviously gained a tolerance and need more and more opioid to help the pain so in a vicious circle I would imagine plus there's Opioid-Induced Hyperalgesia. I think you need a medication review and a referral to a pain clinic.
For your skin condition have you tried PDT Acne light therapy, Ive just bought a home machine for £123 and my skin is clearing up very quickly and I swear this is helping with the pain too *unless it's a placebo. Obviously with all you conditions you need to discuss things with you doctor before trying other things and also before weaning of Opioids and other medications.
It might be worth looking for supplements & vitamins for your Gut to as you may have leaky gut or Small Intestinal Bacteria Growth - maybe read Dr Michael Moseley book - I'm definitely better than I was by improving my Gut health. All things to think about and discuss with your healthcare professionals maybe. Hope something helps you as awe get so desperate and hope fades sometimes but don't give up
evry time i see my gp we do a meds review lol! having mri's on my neck n lumbar due to extra pain n more loss of mobility since car crash. duloxitine has made a huge difference painwise. im gonna ask about medicinal cannabis too. i love michael mosely n ive seen programmes on the gut being ur 2nd brain etc. more investigations to come....!
GPs are not going to be allowed to prescribed medicinal Cannabis and only specialist but the Gov guidelines are thought to be only for exceptional cases with certain conditions and this doesn't extend to Fibro I'm afraid. I have started a petition about this and f you'd like to sign I can PM it to you if you like?
It changes day to day, depending on my energy levels. Being retired, there are less commitments for me than for others. I do a bit, then rest awhile then do another bit and so on. Yesterday being Halloween, I set up the grotto for the kids, not as elaborate as usual as I ran out of energy, but enough. A good evening and it was also good to see more parents about with their kids.
I had to medically retire from my nursing post. Could not keep up in the end & ground to a halt.
In such a better place now but still need to balance rest & activity which can be hard to do.
Hugs to all fibro warriors x
I was diagnosed with Fibro in 2011 & managed to work up until last Christmas when my body finally collapsed. Months of tests followed & was re-diagnosed with Fibro but now along with CFS/ME. I also have Hashimoto's amongst other stuff.
In May, this cost me my job of 34 years as I couldn't give my employer an expected date of return! I ticked the 24 hours box as all I can do is rest either in bed or on the settee & only venture out for appointments. I am very lucky to have a wonderful Hubby.
I really feel for people still struggling to work with this, but please be careful & be good to yourselves. I didn't want to finish work as we still have a mortgage, but I couldn't physically or mentally carry on.
It may not be your decision to finish work in the end, it may be your body that makes that decision for you. Take care all. xx
You're so right if you push yourself too much it can make your Fibro flares more severe and for longer - often leading to having to give up working. People who are working with Fibro should find out their rights and entitlements for reasonable adjustments to make work life easier
I can’t work anymore sleep is none existent on high pain days it’s impossible.
I am just about ,by the skin of my teeth, still managing to work full time. I have had to alter my work hours from 8 a.m. - 4 p.m. as my fatigue sets in totally by 4 so 9 -5 was hell. Weekends and all the time after 4 till the next morning, I pretty much can't do life. I breathe in and out with hardly any social or family life. I am so exhausted in the late afternoon/ evening that even speaking is painful. Like many, I have bills to pay and a semblance of life to maintain. What is realistically the alternative ? My family have to eat and have a roof over their heads. I am now using annual leave as sick days. It is relentless and someone turned the light off at the end of the tunnel.
I am so sorry to hear this and so many seem to be working to live and livng to work with no work/life balance. I would say it might be an idea to speak with the FMAUK Benefits Advisor about work related issue, your rights & reasonable adjustments to make work easier. Then hopefully you can start to enjoy time off rather than just flaring/fatigued and needing to rest to go back to work as this is no quality of life for you as you point out plus it's not sustainable long term. Here's the link to contact the advisor about this
healthunlocked.com/fibromya...
Hope you find a way to make it better for you
Emma
Alk depends what i do when ican how long it takes to recover xxx
Hermes123.
I was only recently informed that I suffered from Fibromyalgia, although I have had Arthritis : Osteoarthritis for almost 50. years. Tiredness is something I suffered with for years, my wife complains your always tired and it really annoys me, as if it's a pretence thing. Since buying one of those expensive authropedic beds to which I at last get a good nights sleep, that has no effect on my day time routine, I can still drop off at any time, even after not being up long eating my breakfast with my eyes shut. Nothing worse being tired all the time? Except be in constant pain most afternoons I need a nap and in the evenings quiet often drop off watching TV. Hermes.
I have had Fibro for 20 something years. Twenty years ago I worked at a full time job (5 days a week) plus a part time job three evenings a week and a Sunday. About 10 years ago I told someone that if you divided the day into 3 (i.e. morning, afternoon and evening) then I could do 2 out of 3 (dependant on having 2 days off a week). I am now on Gabapentin, which is wonderful and has helped take away the nerve pain and a lot of the muscle pain, but I find that I can only achieve one active third of a day and need at least 2 days a week just to relax completely and/or sleep. I know that it is not a degenerative illness but your body can't fight Fibro as effectively as you get older. I volunteer for 4 to 5 hours a day for three days a week, look after my sister who is ill one day a week plus I am a secretary for 2 charities. I had hoped that I would have at least another 10-12 active years ahead and I would have if only there were wonderful summers like this year and no cold and damp winters !!
It's difficult to say in hours as it fluctuates from day to day. I have had bad times when I've been virtually bed and housebound for 6 months at a time. I think i am better at pacing these days and since dropping my work to 26 hours and not working more than 2 consecutive days together, I rest on my days off. There is no social life, I just don't have the energy. I simply rest to be able to work, sadly can't afford not to work😩
Sorry to hear that your social life is suffering maybe due to working causing Fibro to flare. would suggest that it might be worth talking to our FMAUK Benefits Advisor regarding work related issues and about ways to help you
healthunlocked.com/fibromya...
All the best
Emma
Thanks Emma I tried to make a claim for pip back in April / May but I lost my step son very suddenly, and missed my face to face appointment as a result, I haven't felt emotionally strong enough to fight the benefits system since. I may try again after Christmas. I will keep the link for future reference, thanks
So sorry to hear about your sad loss of your step son I cannot even imagine how distressing this would be. Yes as the systems such a fight it does mean you have to be mentally strong to cope with it. Just a small amount of scroungers in comparison to the tax avaders and yet the disabled are punished it so wrong.
Emma
I have had fibro, Hashimoto’s thyroiditis, a brain injury due to a sub arachnoid haemorrage, intercranial hypertension due to mild hydrocephalus,asthma, diabetes, ibs, gastric reflux,chronic sinusitis and I’m also partially sighted.....and because of all that now I suffer from depression.at the moment I’m off sick with depression, but my life in general is a nightmare.
I have to work part time to pay my mortgage. It feels like it’s killing me. I’m so tired when I finish work that I either fall asleep on the train or I sit on the sofa and fall asleep for 9 hours with my bag still in my hand. I spend my days off sleeping. I have no social life or love life. My family can’t understand what’s wrong as I used to run around all the time and be such a happy go lucky kind of person. I’m just so miserable. Some weeks I spend all week in bed. When I’m working I’m sleeping or sitting around 4 days a week. My life sucks
Sorry to hear that your social life is suffering and generally impacting on every aspect. I cannot even imagne how hard it must be for you and everyone who seems to have highlighted the same situation on this thread. I would suggest that it might be worth talking to our FMAUK Benefits Advisor regarding work related issues and about ways to help you
healthunlocked.com/fibromya...
All the best
Emma
Thanks Emma
This year has been my worst year ever with my fibromyalgia arthritis pain so I am in bed every day all day can’t cook at all because it’s to painful to stand and hold pots memory is getting worse foggy head every single day all day xoxo
I have multiple conditions so Fibro just is part of needs to rest. So depends on other factors.
I still need to work and it's not easy. I work 6 hrs a day over 5 days. I take my Amitriptyline at 6pm eat at 7pm and I am in bed for 8pm until 7.45 next day. I have to live to work at the moment as I am not in control of the future
I am genuinely so sorry to hear that you are suffering and maybe due to working causing Fibro to flare even more. I would suggest that it might be worth talking to our FMAUK Benefits Advisor regarding work related issues and about ways to help you
healthunlocked.com/fibromya...
All the best
Emma
Like so many here I worked and rested every other minute I was away from work, just trying to keep my job.
No use. In the end I was sacked in 2007 for not being able to do the job was employed for, and that's the civil service.
Now I just try to look after myself, not always very good at that.
I can’t work I’m in a lot of pain and I suffer from constant fatique everything is an effort
I have Polymyalgia as well as ME/CFS and Fibromyalgia so very difficult to know which is causing pain. Varies from day to day. Have other people got Poly and Fibro? and how do they know which is effecting them from day to day without constant blood test which you will not get on NHS. Thank you for this forum. Best wishes
I used to be both local and national union rep, sadly this was with pcs and made no difference. I got no fighters to support me with anything other than words.
When I became too sick to fight, having small strokes too. I had to take the choice that keeping my health meant stopping the fight.
Unions and knowing your rights make no difference unless you're up to the fight needed to enforce them or have a team that will.
Yes you do have to fight and as you say you need people behind you. The Equality Law and rights of the employee should be used and if that is not working it should be taken further as you say with the support of someone. I prefer to signpost members to sources of help and hope that this helps them
mine varies often of late a short night wake up for a while or hours/get up then be falling over and go back to bed for a good few hours.
Sometimes just don't sleep at all while other times just sleep wake up sleep all day
What have found is get to a point then it's time to stop or get lots of issues which then takes a long time to get over.
But these days i tend to listen to what the bodies saying to me which seems to have helped more to deal with things as one thing if on feet too long there like being tortured as lost fat pads
Retired but have a full day, do not need to rest untill the evening when I would normally sit and watch tv.
I selected 0-5 hours because I haven't had symptoms for a little over 2 years. The pain before that spent about 5 months getting less and less. Prior to that period the pain was constant and tremendous. I often needed spinal adjustments due to muscle tension pulling bones slightly out of place. Deep neuromuscular massage for 2 hours got at least the worst of the pain resolved while on the table. It could spring right back if I didn't try to be restful for hours after the massage. I learned every move the therapist made and substituted things like doorways and furniture arms and frames to perform the same moves to relieve pain between massage app'ts. It would take between 1 and 2 hrs. to do this. I often had limited use of my arms due to locked up muscles. I couldn't look at a speaker or a show with my head at an angle because the imbalance would give me tremendous pain and my muscles in my neck would tighten for days. I had to sit directly in front of a speaker if I didn't want to pay that price. I used hot and cold packs as instructed by my rheumy for muscle pain. I did stretches which took about an hour to relieve pain.
I was often tired and rested but I couldn't rest too much due to obligations: a dying husband, multiple other health problems for me, 2 children still at home...one with intractable depression. (Prior to that I had all 3 children to care for...they had ADD/ADHD with learning disabilities and medication schedules.) Also a house to maintain and cars, the whole shebang. Parents who needed me. Tremendous stress. The change in stress with my husband's death took about 5 months for me to dramatically improve. Unbelievably so. I wouldn't have believed it if I didn't experience it. My rheumy says I must go 5 years before I'm considered fibro-free. She also is the one who discovered I no longer reacted at enough touch points to be considered to have fibromyalgia...but still had to go the 5 yrs. to make it official.
I also have ME/CFS and significant issues with my spine and pelvis, but I am bedbound around 5 days a week for 20-24 hours on those days. About 2 days a week i'll manage a 4-8 hour day outside the house, but I guess the other 5 days of pain and exhaustion are partly the result of this.
I work driver dominos.so its in out.up down all time 5 days a week.can get tired sore quick.
I don't work and my son does a majority of the things that I used to do. I'm always tired, in pain and anxious. I tried going for a short walk, but when I got home I told my son I felt worse, I get frustrated because I used to be able to walk 8 miles a day.
