Are your symptoms manageable at the m... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Are your symptoms manageable at the moment and are you able to work ?

Mdaisy profile imageMdaisy441 Voters

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53 Replies
mel-maelo profile image
mel-maelo

As the very nature of fibro is unpredictable and we all deal with the pain in our own different ways it is difficult to give a definitive answer. It also depends very much on how one's employer reacts/responds to one's illness as I have had months where I cannot work at all and then again times when things were relatively tolerable enough to push through and work full time. Personally I have reached a place with my fibro where I am in constant agony and flare-ups are the norm but my employer wanted to try and understand the illness and asked me to write a comprehensive report/ explanation that could be passed through the company and hr so that other managers would also understand how to work with fibro employees. This lead to my manager trialling different hours for me and breaking up my week for rest. We all respond differently to the fibro monster and all have different pain thresholds.

Hugs

Melxx

mel-maelo profile image
mel-maelo in reply tomel-maelo

Currently I am not working. This is due to about 50% Fibro and 50% major surgery which the Fibro has now "hijacked" if that makes sense. I am well aware that if I even attempted to go back to work now I would be unable to function properly much less function at all as a mum by the time I got home. Even my doc has advised that full time work would be prohibitive as I'd be signed off within 2-3 months as the fibro has become so aggressive.

To this end I am currently taking my time in setting up a business that I can run viabthe net at home so that if I am having a bad day, I can deal with it ir take an hour or two out of my day to rest. This would still be on a part time basis though.

Even more hugs and wishing all my gorgeous fellow fibromites a great day.

Mel xx

Sarah-Jane profile image
Sarah-Jane in reply tomel-maelo

Good luck Mel, you are an inspiration

Sarah-Jane profile image
Sarah-Jane in reply tomel-maelo

You are so lucky to have such an understanding boss, though not so lucky with the pain. Good luck with both.

suwie profile image
suwie in reply tomel-maelo

Wow your boss is good..I work part time in a pub but I have reduced my hours my boss & my family..don't really understand how I feel & how much pain I get I recently had hair loss & my gp said it was alopecia..for which I'm having tests my boss wasn't happy when I cut my hours but rather than give up altogether it was a better option..even though I I've cut down on work I don't feel I'm resting enough I try to I was looking forward to retireing but the government have now risen the age so I'm in a visious circle..but glad your boss understands you :)

unio06 profile image
unio06

I agree 100% with mel. I lost my job as a care worker for the elderly in residential care when I started to get ill. due to the lifting and carrying it eas a year after I was diagnosed with fm. I have suffered with depression most of my life. then 3 years later I found out I'm type 2 diabetic. so it is hard to no what condition is causing what symptoms

Mdaisy profile image
Mdaisy

Hello,

I understand it is hard to pin point exactly what symptoms are Fibro related and it is so variable that you could be working part time then not able and then you may be working again.

However one of the reasons for the poll is to talk about the new Work & Fibro page that is on the FibroAction website. The poll is a rough guide to find out who is working at the present time and who we may be able to point in the right direction to find the information from the website. If anyone should need advice about their rights and organisations that will help we will probably find out during the course of the poll as people will comment about their work and if they are experiencing problems with lack of understanding of Fibro for instance.

The website link for Work & Fibro is:

fibroaction.org/pages/work-...

I look forward to reading further comments :)

Emma

gailmarie57 profile image
gailmarie57 in reply toMdaisy

I am very deaf and wear 2 aids as well as the fibro, but I am also main carer for my hubby who has bad mobility and health problems. His problems are mainly below waist level but upper body OK He can't get down for shoes socks etc, I can get down but can't get up, funny to see really but it is no laughing matter, as my fibro is getting worse with longer spasms. We have to help each other various things I can't do and vice versa. The fact he gets benefits stops me applying even for my car so swings and roundabouts....I used to work and quite hard work I now get frustrated so I am doing an OU course (half way through) brilliant best thing I ever did they are great with disabled students for special equipment and extra time for things like assignment and exams, If you want something to do and in your own time give it a go. If you are in receipt of benefits you may get some if not all your fees paid plus a small allowance for books etc, from disabled students get equipment computers desks ergonomic chairs special programmes for your studies, some one will come and assess you. All equipment is yours to keep I wasn't fully diagnosed with fibro when I started just arthritis and the stuff I got was amazing and because it is apart time Uni you don't lose any benefits. Beats feeling sorry for oneself. Who Knows may be able to get a little job at the end even if it is just as an invigilator for exams in students homes, gives a reason to hope.

mel-maelo profile image
mel-maelo in reply togailmarie57

Hi Gail,

I comeyed 6 Yeats with honors with the OU and I support your notion that it certainly keeps the mind active and not just full of fibro monster rubbish either. It was one of my greatest achievements as it really was no walk in the park but as you said, the OUare fantastic with disabled students. The even paid for and installed voice recognition software "Dragon" so that I would not have to type out my assignments and essays. I also didn't have to do my exams in the examination hall with the other students (you ate not allowed to stand up during the 3 hour exam) but an invigilator came to my home and I was allowed to take 10 or 15 minute breaks every half hour. They were fantastic.

Mel

xxx

gailmarie57 profile image
gailmarie57 in reply tomel-maelo

Great to hear from another OU (completer) student, Mel. It wasn't till I actually started the OU that the doubts of simple stress headaches and arthritis, along with restless and face tingling's came to be considered as something more. I was only told 3 weeks ago that it was looking more like fibro. After reading all the various posts on this forum have decided to ask for a referal to the relevant departments pain management physio etc to try and learn more. As the pain is at times unmanageable, I would love to have a nights unbroken sleep, something I have not had for many years....In saying that it is during the sleepless nights I do most of my OU study, you can't everything.

mel-maelo profile image
mel-maelo in reply togailmarie57

First port of call should be a rheumatologist so ask your GP to refer you. He will confirm whether or not you have the fibro monster, lupus or other. He will also get you going on meds and refer you to pain clinic but will continue seeing you several times a year.

Mel

tabithaboots profile image
tabithaboots in reply tomel-maelo

I have had fibro for over 20 years,didn't know I had it tipl I went to live in Spain for 18 months and was diagnposed in Spain.

I have good and bad days,and work voluntary forthe PDSA,which I love but find hard at times.

I've just applied for a part time job in a vets and have an interview next week,i reslly don't know whether to mention to them I have fibro,don't know how they will react,and yet sometimes I can't even do my voluntary job.

As for what started my fibro,i have had alot of stress in my life and had a very bad fall some years ago dislocating my shoulder,and cracking my scull,fibro gone worse since fall.

tabithaboots profile image
tabithaboots in reply totabithaboots

Sorry about typos,i'm on my phone.x

KeepingGoing profile image
KeepingGoing in reply toMdaisy

I work part time 2.5 days and always have, but at an extremely stressful job where I need to be on the ball at all times. I am reasonable at the moment with the fibro, but have been very bad about a month ago.

I have a very good line manager who will stick their neck out as far as they can on my behalf. I gave them the Fibroaction information and some from the NHS as well. I think eventually fibro will have it's way and I will end up finishing my job because of it because I can see I've hit a downwards health slide where I get worse for longer and more often.

Having support at work means everything I think and will enable me to go on longer than I would be able to if the support wans't there. I laso have a lot of support at home so I am very fortunate. The type of job I do means that I can't relax, I get interrupted during breaks and have to be alert at all times - no way could I try to believe there is no life and death situation because in my job, I make decisions which could have huge implications all the time. These are no good for fibro as you know, but as my GP says, the alternative monetary worries would also be fairly major and pretty stressful so he has said to stay for as long as I can manage and get job adjusted as much as possible.

My supportive manager and close work team will help tremendously. They can see when the fibro is not good. My family support me enormously by being there to pick up the pieces after I have been to work when I crash on the sofa, can't think straight, can't speak or string two words together, cry with the pain or whatever. I couldn't be at work if I didn't have a super-strong support network.

cowsrock profile image
cowsrock in reply toMdaisy

Hi

I work PT 25 hours for Shopmobility and have done for 6 years, but now I am finding my memory has got so bad some days that it is affecting my job, driving and remembering what happened last week lol, plus lack of sleep stronger meds, and of course mobility, I am finding I have to push myself more and more now which has a knock on affect I have been out of action well full action for last few days :( but me being me will keep pushing on, I know one of these days I will crash big time and not get back, but I love my job and hate to let the others that I work with down we are a team, I see people with Fibro and Me in wheelchairs, scooters there lovely people but I am not ready to give up yet, I know it took a lot for them as well before there body,s said stop now! I respect them all and understand there pain, sorry I,m going on anyway if you can work that is good, if can,t I for one would know you must of had a big battle with yourself,s and others not to.

Big gentle hugs.

MikefromsouthNZ profile image
MikefromsouthNZ

I've had fibro for so long now is the norm to have pain 24/7.. I also have other chronic illnesses, one being raynaud's, so I find it difficult to keep good circulation to my hands and feet, and they are always frozen to the bone.. The survey is interesting to see how other fibro patients cope as I try to work voluntary from home when I can as I think it helps to keep my mind off the constant pain, and helping someone else that is in pain and also in chronic pain can help me to cope just that little bit better.. I think we can get tunnel vision on our own pain, we often forget there are thousands of other people in the same pain as us and too experience it 24/7..

I try very hard, 'to make my hay while the sun shines.' So when pain will let me I like to try and keep my mind occupied on other things/people in similar situations..

ToniPR profile image
ToniPR

I am working full time but it can be really difficult to push through the pain some days. Up until December last year, I worked for a company that had zero tolerance for illness and the stress of going to work even when, frankly, I was too ill to do so caused my symptoms to flare even more and I got into a vicious cycle. I left in December as I felt that the company was making my work life so unbearable that I had no option but to leave. Even though it was a very scary thing to do in the present economic environment, it was the best thing I could have done. I took six weeks off to rest and recover whilst looking for a new job. I decided not to return to bookkeeping but to look for work in a completely different field, one where my heart was, where I could actually enjoy going to work every day. I've always loved helping others so I've gone into care work with a learning disabled lady and, even though this job is physically more demanding, I've coped so much better than in my previous job. I'm still in a lot of pain but somehow doing work that I am passionate about has made a difference. Also, the strange thing is that being in a job where I have to move around more has also helped. Being desk bound caused my body to stiffen up and aggravated my fibro. I HAVE to work or we would not eat... so I am really grateful for this new beginning. I hope my story encourages someone else out there who is struggling with working full time. xxx

Frankiebeee profile image
Frankiebeee

fully understand above - my gp signed me off for 3 months after I had a major op and once morphine had been tailed off fibro symptoms have taken over. I'm self-employed but find it takes 2-3 times longer to do my work now so only get paid for a part-time job. I have to work to eat and feed my pets and keep a roof over my head - its hard and I struggle some weeks with threat of gas/lecky being turned off or home repossessed but then I knwo some are struggling even more than me.

Plumcake profile image
Plumcake

I used to work part time and run a B & B alone, but as time progressed and stress levels got worse, I became unable to. Now I don't think i could hold down the easiest job on the planet. Every day is unpredictable as anyone with this illness or has any knowledge of knows. If things hadn't changed with the age limit on retirement age for women I would be drawing my pension and part of my exes, but I have to wait, and it will probably end up with never getting it if the government have their way.

suwie profile image
suwie in reply toPlumcake

Hi ya I'm the same I thought I was goin to retire in two years I only work part time 15 rs. But even that's a struggle but as I can't retire I'm stuck in a job I hate I did used to Luke it as its in a pub & I'm a ppl person I've had time off this week but am not looking forward to goin back I work with my daughter which is ok but feel they don't understand so I just got to grin and bear it x

Sarah-Jane profile image
Sarah-Jane in reply tosuwie

Hi Suwie, I found Fibromyalgia for Idiots a very helpful book. It also helps with a section you can get people to read so they understand better. Good luck, soft hugs.

suwie profile image
suwie in reply toSarah-Jane

Thankyou I will have to look for that book its a nightmare when.ppl don't understand you hugs bk to you too :)

alexandra_cmpbll profile image
alexandra_cmpbll

Hi, I worked as a support worker, until 2010, when, I basically could not function for fatigue and pains in feet and hands which were also swelling, also anxiety and depression. My gp signed me off and the company I worked for were sympathetic up to a point but eventually paid me off. I was diagnosed as being hypothyroid and put on thyroxine, my medication is still being upped for it. On top of that I started to get pain all over and at times could hardly walk, one day even getting stuck as my left hip locked and was in agony. Got to gp who referred me to rheumatologist, after xrays, blood tests I was diagnosed as having fibromyalgia, and was really not told much about it apart from being given a booklet to read. This illness is crippling me, I was also unaware it could flare up and I could not move last weekend for pain in my back neck and for the first time it caused pain up my face and head. I feel at 46 I am relatively young and people do not understand what fibromyalgia is and how it varys in severity from person to person. My gp has upped my meds to 900mg gabapentin daily, also tramadol and paracetamol, along with other meds I feel Im falling apart! to cap it all The brain fog is getting worse, I hunted high and low to find my tin foil which i usually keep in the cupboard only to find it in the freezer! I have to attend atos for a medical on Wednesday this week and I am basically getting ready for an appeal, theyre denying people worse than me benefit, so I feel I have no chance. I would love to get back to work but its just not possible.

Sarah-Jane profile image
Sarah-Jane in reply toalexandra_cmpbll

Hi Alexandra, you might not be on the right meds. I cannot take Tramadol, makes me ill. I am on Lyrica, Amitriptyline, Tegretol, Co-Dydramol - Paracetamol doesn't touch it for me. Have you seen a Rheumatologist that knows about FM? Have you been referred to a Pain Management Clinic? Get help for any meetings - always have someone with you who can back you up and help you remember. Get a letter from your Doctor about your dianosis, have evidence on you for any hospital appointments. Keep a note book on you and write everything down. Attach it to yourself with a pencil if you need to. Also either go on line or go to the Chemist and get yourself a pill dispenser. Takes time, but fill capsules with your meds so you make sure you take what you should, when you should. If you get this wrong you could be in more pain than you need to be. FM has made me slip up more than once and Ive been up the wall with pain and sensitivity! Also consider getting a TENs machine. I have found it has helped ease my back when the muscles have cramped up, or my hip when its decided to cause me trouble. Recently I had the machine on for 3 x 30 minute sessions to ease it enough, but it does help me. Hang on in there. Message me if you like, but good luck for Wednesday. If you don't get the right outcome, Appeal, Appeal, Appeal!

littlemisshurty profile image
littlemisshurty

A l lot of ppl with fibro have other illnesses I have underactive thyroid 25years I have had cancer I've had 5or6 ops one on spine in Sep got screws and rods my spine was starting to bend.I'm also havepernicious anemia having regular vitamin b12 injections' I have slipped discs in neck and lower back....so I'm always in pain and I fall asleep out of no where like I'm in and out unconsciousness.. I have very low blood pressure and have been hospitalised several times last time des told parents I was so I'll not to hold out to much hope...then some office worker who reads a csa rule book says if I'm ill enough to work or not...my last job I fell down stairs as I passed out..my legs swelled up so much they toes were going blue..I said I need to sit down was told I couldn't...I had to take my shoes off the pain was so bad..then I couldn't get my shoes back on I had to walk to train station in socks I looked ridiculous...ppl looking at me funny..I couldn't walk for 4days or get shoes on for a week ...I trained hard for my job I loved it...but I can't work I'm to tired and on to much pain..I can't think I forget can't concentrate falling asleep passing out..double vision dropping stuff tripping falling..I'm so employable it's hard enough for able bodied ppl to get work where are these modern work places they say will employ some one like us...lol it's. NUTS

NordicNavajo profile image
NordicNavajo

Very good idea for a poll. Results so far not surprising. I can not truly vote as I fall between several categories. Having lost my local govt job last year after a flare up that lasted a year I was left with a dilema. How do I support my family (autistic son) without a job or obtainable benefit? As I failed to get fair disability support and the fight of court made me weaker and was lengthy (18 months from start to finish after dead end at court) I had had my fill of the endless ATOS trap and read every horror story on the planet (is there anything fair they do?) I KNOW no employer will cope with my inability to do regular hours as my job that I lost was flexi time and from home. I knew I could not face the ping ball fight for everything any longer. SO I decided to continue with a small business venture that meant I can make and work when my body lets me and be self employed. As such I run books and have an accountant. The venture cost me most of my savings and it may be some 5 years before I break even, BUT I am not beholdent to ATOS at present. I collect the correct amount of tax credit and am working towards the day when my outlay is outweighed by my income. I am of course duly horrified to see ATOS are anything to do with the new benefit system and am hoping that they will not be able to bully folk from self employed to unemployed to remove them from being able to be active and working towards a goal, but who knows. I have 2 years to balance my books before the family support element becomes void for me as my son is 16. I am working hard when I can to get there. It was the only thing I could do as I am sure I would not be judged fairly in ESA as I have not in disability living allowance. I strive for the day when 2 health reports written for one govt dept that can lose you your job (too sick to be employed) will be read by another govt dept servant (ATOS) and taken as truth. They can sack you on one report and take away a career but then refuse to look at their own specialists who have written you off when it suits. Despicable.

I do hope that more options are given to the large amount of us that can not be accepted by regular employers. If they want us to work then they need to listen to what we can offer instead of make us fight for existance. Im sure most of us trapped in this state have very good brains! Good luck to all.

NN :) with a smile

italraf profile image
italraf

I have suffered from fibromyalgia for many years, but always fought against it and refused to be defeated. I worked full time (and more), until last year, when my body totally collapsed and 'told' me it would not continue to function. Within a few months I had to stop work altogether. I have now been off work for nine months, my pay has been reduced and I live in fear of losing my job and my income any day. Although my employer is very understanding, I doubt that it can continue to keep me on its books forever. It has started to put pressure to try to go back to work for a couple of hours per day, but it just seems like a mountain too high to climb at the moment. I tried going into the office a couple of months ago, just to test how it felt; I left after 30 minutes and by the time I got home I was completely exhausted, by evening the pain in my legs was so bad that I could not sleep until 3 in the morning.

I am fortunate to have an understanding GP, but for 3 months he was off for an operation and the stand-in GP told me that there is no reason why people with fibromyalgia cannot work. At one point, he threatened to write on my sick note that he thought I could work but I refused. I need to work, but I do not know how to make it happen. I certainly cannot in my current condition.

littlemisshurty profile image
littlemisshurty

Esa not cats lol..I also have hips lock or my neck or arm and I just yelp in a queue in post off ice once it was packed I was saying my back my back I couldn't breath or move and ppl gave me dirty looks there was a good 14ppl in Queue after a few mins a young Asian man got out of queue put his arm round my waist and slowly helped me to a seat...they were so worried about . L o sing space just looked at me like a freak..the man said out loud what's wrong with ppl these days won't help ppl in pain to a seat they all just turned heads or looked down pretended not to hear..iv had so much discrimination from ppl its not right...if gone home from supermarket in tears.

timj53 profile image
timj53

I was lucky enough to be able to to take early retirement at the age of 52 on ill-health grounds with a local government pension. I am now 60. I think how lucky I was every day as it would have been dismissed on "capabilities" with no pension until 65 if had been under the current rules as Local Authorities seek to cut costs!

dixieboo profile image
dixieboo

I used to work full-time but gave it up as I thought I was ill because of stress (I'd been going back to the Drs over a 20 year period saying I didn't feel right). After 6 months I started working for myself as a researcher/project manager and again did too much and became ill. I thought, after some rest I'd be ok, but eventually I was diagnosed with FM 2 years ago. Since being diagnosed and after coming to terms with it I'm doing some freelance research associate work and I can manage 2 days, but going up to 3 days I find it very difficult to concentrate and my thinking becomes muddled (especially if I'm starting to feel stressed because I can't understand what I'm doing). I haven't told the people I work with that I have an illness and of course this work is not guaranteed - so I don't know what I will be able to do once this type of work dries up. I think if you are lucky enough to find something that can be fitted around your FM at least you have a chance of earning some money and interacting within a professional circle of other people. I've struggled to come to terms with the fact that I can't do the type of academic and project management work at the level I used to do and the fact that people don't really appreciate the illness and how painful it is. Hope this helps and I really hope that better research comes out on what actually causes this rather than all the trials/research on how to combat it. x

Glenys profile image
Glenys

I was working full time for many years with no diagnosis, and my absentee-ism was through the roof. I had been in and out of disiplinaries like there were no tomorrows and could not pursuade my manager that I would be better doing part time.

I finally got a diagnosis, then a couple of girls in our department became pregnant, and were allowed to come back part time afterwards - I was told their need was greater than mine (I had never disputed that fact) and that it took the staffing levels too far down for me to go part time.. Well that was it!! I got the unions involved and low and behold 18 months (yes it took that long....) later I was allowed part time. Just in time as well because literally the next week the same girls reported they were pregnant again! Phew!

I saw an article the other day saying that people with fibro who are on an EVEN KEEL whilst working a little, experienced the same levels of pain as those who were on an EVEN KEEL who didn't.. But the same poll said that although working people have MORE fatigue than those who don't, they seem to cope with it better? I'm not sure, but this has encouraged me to try and keep myself in a space where I can do my job part time, and not do too much otherwise.

My job has a nice mix of sitting down and walking about (medical photographer), but at one point a more sedentry job was offered (ward reception), but I knew if I did that I would seize up, as it is sitting down at a computor which hurts the most. The job satisfaction would not be there either, which helps. And imagine moving to a different workplace and having to start re-explaining the condition to a new employer???? It doesn't bear thinking about!

We have just inherited my Niece - in - Law for the indefinate future, and adding a 13 year old to the equation has made me more determined to enjoy my job, as it gets me away from the stress!!!! Thankfully hubby helps out there, but he can see how it has affected me over the last year.

Good luck to all those out there working - here's hoping we can all manage to keep doing so as it would be great to have a section of the forum dedicated to how we can stay that way.

Thanks for the poll.

HugsxxGlenys

Sammicat15 profile image
Sammicat15

I was diagnosed with RA in 1997 and it took another 10 years before FM was hoisted as being the culprit for much of my pain. I worked full-time for 30 years.

I do have inflammatory arthritis for which I take medication. I continued to have increasing discomfort through all that period but never once took a day off work because of it - buying co-codamol here and there or doubling up meds to cope.

Once the FM was also confirmed in 2007, my drugs cocktail increased substantially and I continued to work until the end of 2010, when I literally came to a standstill one morning, unable to deal with the pain and the added stress of my job.

Sadly, I have not worked since then, even though my drugs cocktail has been tweaked and increased even more.

On Friday, my GP suggested reducing my RA meds to see how things go. I went to half doses on Friday night and have literally ground to a halt in 3 days with the added pain which is making it hard to concentrate - so my RA is still there lurking in the background. Am probably a wimp, but I can do without burning of the joints to go alongside the burning everywhere else!! Am back on full dose as of this morning and can't wait for some relief!

It's funny how you can distinguish certain pains from others with a simple experiment. We're not hypochondriacs, but very much "body-aware" as my beloved partner believes :-)

karma_13 profile image
karma_13 in reply toSammicat15

ah... your partner sounds very supportive <3

.

lalumsden profile image
lalumsden

I worked full-time up until 2 years ago, but I eventually had to leave work (with my GP's insistance) as I was getting much worse. I have had FMS for approx. 15 years and worked up until it got impossible. The pain of moving in my job was unbearable and I was taking it out on staff and customers. I also kept forgetting things due to fibro fog. Not pleasant.

Lima6MCT profile image
Lima6MCT

I tried going back to work a couple of times, last time I was self employed but ended up working some really silly hours just to try and keep going. In the end my GP told me that I had to stop as I was going to make myself very ill. I was told if I didn't choose to stop the choice may be made for me as my blood pressure was sky high, the constant pain was becoming increasingly worse & my stress levels going through the roof. That was nearly 5 years ago & I've not worked since.

dovetail profile image
dovetail

I became Ill whilst working as a careers adviser. I trained hard for years to be fully qualified & absolutely loved my job, although it was very stressful. It all came to a head for me when a new manager started. I had known this woman for years & I never liked how she operated, because she was a nasty bully! When she started to manage me, my stress levels increased tenfold. I started to get a few physical pains along with the mental stress but I ignored the pain & carried on, until one morning in August 2010, when I could not get out of bed, the pain was so intense. It was all very scary & so started the long road of tests for everything. I got a diagnosis of FM about 12 months later, which led to specific drugs to try & combat the intense pain I was suffering. I still suffer pain & stiffness every day, I have brain fog & I stumble & fall most days. I only go out a couple of times a month & I always have somebody with me.things are so bad, I feel like my life is over & I'm only 49 years old. The only shining light for me out of all this was ATOS, who were very kind and considerate. Owing to their report, I was quickly put into the support group for ESA. I know they have had a lot of bad publicity, so I thought I'd mention them in a good light. In answer to the original question, I cannot work, nor can I see a future where I will be able to work. This forum really helps me, as I know I'm not alone in my daily struggles. Thank you & very gentle hugs to all my fellow sufferers xx

karma_13 profile image
karma_13 in reply todovetail

I hope ATOS have the same kindness and consideration for me when I go for my medical. x

Mel68 profile image
Mel68

Had to go self employed as found it too difficult to continue working in an office sue to the muscle.spasms n pain at my desk n now am an animal carer

nekcarb profile image
nekcarb

I have taken early retirement at 57 due to ill health. I took to many days off sick feeling like I couldn't cope with the brain fog and the all over pains.

The doctor said in a nasty manner at a sickness review , do I consider myself disabled. I said, of course I do not consider myself disabled, I just have spells of disability. He said I just have a low threshold of pain. He made me feel like a skiver and because work colleagues would see me out and about looking fine they resented me as well. For the last month or so I wouldn't have been able to work. Hopefully things might improve with a change in weather. So does this make me disabled.

psychorrax profile image
psychorrax

I only returned back to work a year ago and on a part time basis. I am VERY fortunate that my old boss knows that I live with what we now know is fybro and if I have an off day she asks if there is anything I need etc. She knows that I am in my heart a worker and if I ring in, she understands that I'm not putting it on. I am a microbiologist in a veterinary diagnostics laboratory, or a Lab Ass as I prefer lol. We talk openly about Meds and their effects as she has Coeliac and Crohns.....the only full able bodied one amongst 6 of us in the company is actually the laziest *rolls eyes* I love my job and it is down as '12 hours Theraputic work' it is my therapy and keeps me sane . Gentle hugs all

roserogers profile image
roserogers

I find that I am unable to work at the moment... this is due to the pain of fibro... I had hoped to work part time if my symptoms improved but at the minute it doesn't look like I'd be able to hold a job down... I was Nursing before fibro hit... I worked 17 years in the health sector working my way up to student nurse but failed due to dyslexia... so I didn't qualify in the end & I was working as a school first aider/nurse when my condition really took hold... that was in 2004 & I haven't been able to work since...

mannie profile image
mannie

I have just gone back to work full time 8.30 to 5.30 Monday to Friday. My doctor signed me off for two weeks as my medication was changing, a few days before this I was given a verbal warning so did not feel able to be off. Mentally if would have made things worse and I do not feel I could feel any worse physically I am in constant extreme pain am on morphine amongst other meds and nothing works.....anyway I digress. I went to see a different doctor and got signed back onto work for reduced hours which worked okish. I went back to see my doctor again last week (it's just like a 2nd home for me) and she has given me a note for a full month of reduced hours. I haven't given this to work as I feel they are trying to get me out, I will have been there a year tomorrow, Almost 20yrs ago I was a weekly day patient at the mental health unit at my local hospital and was ok work through stress, depression and anxiety etc, this has reared it's head several times in the following years and I have always managed to just about stop myself from falling over the edge again. At the moment I am hanging on by my nails and each one is breaking off one by one.

So in answer to the pole yes I am working full time but that is because I have no choice I have been turned down for DLA or whatever it's called now and have had an appeal turned down too. I have to work to live, my bosses are idiots and my new medication is making me feeling terribly sick, dizzy and like I'm having an out of body experience, but I'm still here and I'm still fighting..........just.

Love and best wishes to all xxx

karma_13 profile image
karma_13 in reply tomannie

You are entitled to send in another claim form for dla and try again. I think it would also be beneficial for you to get an advocate, to help you fill in the forms ect, they usually offer there services free of charge or for a small donation. From what you have said, you should be receiving it.

Malwimmy27 profile image
Malwimmy27

I work full time, but I am luvky that I work three long days a week or I work nights. The pain has been much worse recently but am still able to work. Long may it last.

lynnecw profile image
lynnecw

There should have been a bit in the poll that said

Working full time, but struggling.

marmitelion profile image
marmitelion

Working full time but its really hurting me :(

wallflower_fairy profile image
wallflower_fairy

Full time education and finding it difficult I'm afraid. Get assistance though.

Point of info : it might be useful to have another point say part time education because I've seen lots of people doing flexible courses with the Open University and things to try and build themselves and their lives back up again. xx

ClareB1909 profile image
ClareB1909

I became unable to work around 10 years ago, following a nightmare 6 months where my ex husband attacked me with a weapon, my son had 4 lots of brain surgery, we lost the house, and then I had an op on my knee and never recovered. After the fibro diagnosis, I was too ill to work but after being an IT manager I was going brain dead at home! I ended up doing voluntary work and then started up an animal rescue charity. We now have a team of around 30 volunteers, who are animal foster carers, home visitors, fundraisers etc. I go out to strays, do vet visits, home visits etc. when I can, but I can work it round my illness and my son's ongoing operations. On other days there's always plenty of paperwork and accounts to do! I have a great team who will always support me if I'm not up to doing much. It definitely helps to keep your mind active, instead of concentrating on the pain it gets pushed to the back of my mind by thinking about where to put a stray cat, how to pay the vet bills or find a home for the older animals. Yes I have days where I can hardly move, but it never seems as bad when there's ill or neglected animals needing me to work out the best way to help them. The less active my mind is, the more the pain brings me down.

karma_13 profile image
karma_13

Is your boss recruiting!? lol.

I've done some voluntary work recently, but found myself really unreliable and lacked concentration in what I was doing. Because of the type of work I was doing. I thought it best to just give it up. :(

hjones profile image
hjones

i work 16 hours a week (am currently on 2 weeks sick leave)

even this short amount of hours and short shifts, i do no more than 4 hours as i cant manage any longer, i struggle but i have a 6 year old daughter and a home to run so i have no choice at present but to work. a good few months time out would give my body the break its crying out fro but its just not possible at the moment

hjones profile image
hjones in reply tohjones

i was also doing volunteer work and a part time evening college course but had to take a break from both as my paid job had to come first since thats what pays the bills~!

awatson profile image
awatson

I have been trying to work and fined December till March a problem. Hence had to give up for a while, now going back to work. Which had me thinking if it could be related to your mood, as my mood definately is worse in winter months a touch of SAD perhaps???? Have mental health and Fibro all year round, but pain levels intolerable at this specific time of year.

Riles-17 profile image
Riles-17

I answered yes to manageable and working, however I am not in a good financial position and I have to work as I cannot afford to work part time or stop. I have no life all my energy is taken up forcing myself to work each day, especially if I have had a run of bad nights. I only sleep twenty mins at a time sometimes I can get back to sleep for the next twenty eg. I was sitting in my garden at 3.45 am the other morning then had to get up and go to work with small children. Most week end are spent on the sofa and going to bed at ridiculous times 7.30 - 8.00 pm what a great life my partner has NOT! I'm not sure work

Understand what I am going through we'll I know they don't they don't really care. I am finding tasks harder and longer to do. I have to write everything down as I have a short memory and concentration span as I am always exhausted and in pain. I thought that with rest and a six week break I would have some energy quite the opposite.

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