Just diagnosed with Fibro

How do you all manage work, I have been off work since May I have some other arthritis issues and curvature in my lower spine which was found after my hip was replaced last year and now been diagnosed with fibro my pain is off the scale and I can clean my living room and it puts me in bed for a few days!

I have a busy and stressful job where I travel all over the country and right now I just can't see how I will ever get back to managing that full time!

How have you all coped and managed?

Many thanks


50 Replies

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  • Hi jen, it's a nightmare I'm still trying to come to terms with the illness and being unemployed after 16yrs as a social worker. I completely understand what you are going through. I had to finish work 5 mths ago. It's hard I found it in possible to do both. Now like u I cnt clean up I end up in a pool of sweat, then in bed for days. If u do find a fix will u let me know. Take care xx

  • Hi Tra

    Thank you so much for replying makes you feel a little less on your own! I have been with my company 21 years and even through years of agony with my hip never missed a day, but this is another level and if one more person tells me a state of mind and if I'm positive i will get better and that's only a few days in from diagnosis I know people mean well but they have no idea how debilitating this is! I'm so worried as I am on my own so I pay for my mortgage and bills and how will I manage

    Oh you get the sweats too, I thought that might just be me!

    If I work out how to manage this I will of course share and all I can do is wish you all the luck in the world

    Take care


  • Hi Jen....really sorry to hear about your pain level. But you've come to the right place here...you'll get lots of support.

    I had to give up my nursing career three years ago after 35 years in the business and the first year was just pure hell. Also got rheumatoid arthritis as well as Fibromyalgia. I have had some seriously dark thoughts during the first year but they've gone now and that has really helped.

    One of the best pieces of advice I was given was ' listen to your body and give yourself permission to rest'. So if you feel crap, go to bed or whatever it is you want to do and don't feel guilty about it. Listen to your body.

    Also check out the dietary thing with FM....I had to give up wheat and lactose and that did help quite a lot. Feel now that I'm just contending with the RA issue..which is a swine!

    Also make good friends with your GP and try and find the pain relief that will suit you.

    This is NOT in your head and anyone else who says that to you deserves a slap....I dare then to walk one day in your shoes and then say it's in your head.

    My OT was an amazing help and she made me write out a diary of how I felt everyday....that helped too. The main thing is to try and stay positive....which is really hard...but honestly Jen...it does help. Even tho I'm in pain every day, im in a much better place 'mentally' than I was in the first year, which really does help me cope with all the rest.......and when I feel really bad....which is often....I give myself permission.

    Good luck hon...this is one hell of a ride you're on but try and stay positive....xxxx

  • I read your post and it really was inspiring and hit close to home!

    I have been having injections done sense last year, I've had trigger points and the facet injections where you are put to sleep. When you are in constant severe pain your willing to do anything to get relief. But the injections have not worked for me either. I am happy to hear it works for some people, but it's difficult on those who do not get relief or have not had the procedure done before. So they need to know what to expect..When you live with chronic pain with little relief in sight it's hard not to become frustrated and negative, were only humans and can only take so much. I was in a severe car accident over a year ago and have had physical therapy, chiropractic care, and pain mgmt. I'm on more medication then anything for pain ,sleep and depression. I'm 32 and can no longer work, it's devastating when you are use to doing things you can no longer do, existing hurts even, and it's extremely wearing when treatments don't provide relief because you begin to loose hope. We have to be honest with each other at least we're not alone, I would not wish this on anyone. I hope the best for you all! I never understood this until I now going through it myself. I find that in these darkest of times your thoughts go to places you've never thought of its a lonely place, when friends and family don't understand.

  • I really feel for you Dragonfly...I really do. At least I'm a bit of an old crock at 57, but for you to have all this at 32 is just so not right. My niece is 27 and has similar problems as you and it kills me...I'd gladly take hers off her if she could have the life she should be having....like you should.

    Not being able to do the things that you used to do is incredibly frustrating and upsetting. I still try and do those things but the payback isn't worth it, is it? 'Existing hurts even'....omg...how true is that...:(

    I still go into the dark places occasionally but I tell my loved ones that I'm going there and to hang on for me and I'll be back...and touch wood, I do come back......but wouldn't it be bliss, just to have ONE day without any pain....

    You care good take of yourself and stay strong xxxxx

  • Thank you so much for your support, no one should have to go through this! But at least we're not alone, I'm here for you when ever you may need to vent or just support, sometimes that's what we need to get through these days that we just feel like finally giving up!

    Let me know how you are:)

  • Thanks darling...and the same to you....if you need to vent, cry, whatever...I'm here too...I have broad shoulders :) xxx

  • Thank you! How are you today?

  • Stiff !!! But I had a pretty good day yesterday and managed to get out to see my friend through the day and then went to rehearse with my band last night. So..busy day! Singing keeps me sane but my god....do I pay for it! I even 'paced' myself and sat down throughout but still stiff as a board now.

    I also miss bouncing out of bed after a good night's sleep and feeling refreshed, don't you? I hate feeling more tired when I wake up than I did when I went to bed.....grrrrrr...

    How've you been? Do you get affected by the weather? xxx

  • Hi jen , I also have a mortgage and I am managing. It may be a bit different for me as I have a 5 and 9 yr old but strange enough I am better off than when I was working. Dnt get me wrong if I could get back to work I would. Check out all Ur options first maybe reducing Ur hours I did that , they do Av a duty of care and should accommodate u depending on Ur needs. Xxx

  • I will do and I'm lucky I have some cover through work with half pay and my immediate boss has been brilliant, plus I want to work just got to get to a point where I can try and manage it enough that I will be there more than off xxx

  • Hi Ellilu

    Thank you so much for your advice and sharing I'm so glad I have joined. I'm having scans of my hands and feet to check for RA as the consultant thought they were overly swollen even though my blood tests were fine.

    He also said about micro managing my day and rest whenever I need so I can work out where my tipping points are that leave me in bed for days.

    Im already on crazy amount of meds but the consultant said he will try changing some to see if it helps, I'm also lucky have a great relationship with my GP so I know that will be a help.

    I guess it's just that thought of having to change your life, I'm so used to being on the go as I'm sure you were as a nurse, but have taken on board the listen to your body and I will soon know when I don't lol

    Thanks again for sharing

    Take care

    Jen xxxx

  • Glad you're getting checked out for RA...Sometimes you can have an RA negative result but still have RA so the scans will help diagnose it.

    Micromanaging is defo the key and like I say, keep a daily diary of everything that you do...even when you make a cup of tea and see how you feel, where the pain is, the degree of the pain. I used to draw faces ...either smiley cos I was ok or sad ones cos I felt pain and mega sad ones when I felt awful! For some reason, that seemed to help me get a pattern of thing! Also do a scale of 1 - 10 on pain score.

    And Jen, defo have a look at the dietary stuff. There are some really good books on Amazon about FM and diet...but look for the UK versions.

    Also, keep a watch on the weather and get to know when it's going to be high or low pressure cos low pressure will make you feel crushed....and that can happen if it's warm and humid. You can't do anything about the weather, but forewarned and all that!

    Very glad that you've got a good GP...that really is a necessity. What medication are you on? If the consultant recommends a steroid injection, take it...cos if it works, then you could be dealing with RA or another form of arthritis, cos steroids do not take FM pain away so mention it to him.

    But keep that positive attitude even if it means going on anti depressants for awhile cos you'll really spiral downwards if you don't get a handle on it mentally and chronic pain is VERY depressing.

    Let us know how you get on and all love and gentle healing hugs xxx

  • Thank you again great insight and I will use, already on an anti depressant as I have struggled as I thought the hip being done would be my silver bullet.

    Like the faces concept had already started a pain diary so will extend it, ordered some books on managing Fibro and diet too, I will try anything 😊


    Methocarbonal 1500mg x 4 a day

    Co codamol 30/500 x 4 a day

    Gabapentin 200mg x 3 a day

    Tramadol 100mg x 4 a day

    100mg of amitriptyline at night

    Oral morph as and when I need it

    i know they work a bit as the pain increases when I need a dose but they by no means stop the pain that's for sure

    Hugs right back at you and I will update xXx

  • Blimey hon...you're on a right cocktail there aren't you? What about trying Nefopam and Brufen if you can tolerate it? I'm hoping to start morphine patches cos can no longer tolerate Tramadol...which worked well for me.

    Another natural one I use is Forever Living Aloe Vera Juice...it's about Β£20 a month but it's helped quite a bit with the FM.

    But defo ask about the steroid injection cos if that works for you, you'll get some major relief. They just don't like to give it too often.


  • I can't take anti imflamtories as they mess with my blood pressure pills, I was on Naproxen.

    Will ask about others that I might be able to have.

    Will deco ask about injections I used to have them for me hip but they stopped working for that area about 4 years ago but hopefully might mean they will work in other areas

    I actually use the forever MSN cooling gel as it helps a little to ease imflamed areas not tried the juice yet

    I'm hoping he will change the gabapentin it makes me feel so ill I hate it but my back surgeon wanted me to keep having it


  • Hi Jen

    I was diagnosed in Feb this year after having been off work for 5 weeks and practically bed ridden. I only managed to get back as I about to go on my final year placement for a social work degree. I had worked so hard before I was ill and I was determined I was not going to be beaten. It was and still is really tough but I was only doing 4 days a week and 1 day leave. I almost walked 2 or 3 times and cried so much. It was so hard but I stuck with it and just slept when I got home. Gosh I slept so much but my medication seems to be helping a bit now. I still sleep an awful lot and have lots of days when I can't concentrate. It drives me mad but it is the only thing that keeps me going. I know how tough it is but just hang fire and try not to let it completely overtake. You need something positive to focus on πŸ˜ƒ

  • i so admire all of your determination and I want to get to that stage again!

    Sleep I don't sleep if I'm lucky I get a couple of hrs even when I'm exhausted I think if I can sleep more, things might be easier to handle and cope with.

    The brain fog is hideous I used to have a fantastic memory and now I have to write things down, my friends laugh as I mix sayings up all the time now :-)

    Well done and keep going 😊


  • I can understand! I don't sleep either, I think that can be part of any issue because sleep is so healing. It becomes unbearable and frustrating. I use to be a great sleeper after the car accident and every challenge with it following it has devastated my sleep even functioning. My heart goes out to you!

  • Me too until after all the issues post op, I have tried all sorts too, on 100mg amitripyline and all it does now is reduce the restless legs and arms but it used to knock me not anymore it's been months since I had a full nights sleep. Tried story Cd's, meditation etc nothing seems to do the trick, guess I will work it out in the end.....if I find a good way I will share πŸ˜‰


  • I find watching boring and mindless TV like JK helps lol 😁 xx

  • Lol I do that too! xXx

  • Jen....try Swansons Triple Melatonin 10mg....they are great for helping for helping you sleep and might work well with the Amitriptyline. Also get some Magnesium tablets to take at night...another good one for restless legs and other stuff. You'll get there hon....just hang on in there till you do...xxx

  • Already using magnesium it definitely helps 😊 will try out the melotonin thank you xXx

  • Don't get me wrong Jen. When I say, I could sleep the whole day when you am off and still feel like I haven't slept and then there are days when I have only had an hour from 6am ti 7 then had to scrape myself up and just hoped nobody even looked me the wrong way or I would sob. I would take myself into the toilet and cry, stare at myself in the mirror and wonder what it was doing there, wash my face and go back. Lots of mornings I don't even shower - baby wipes are the best thing ever hahaha.

    I can't even tie my hair up because of the pain in my arm but I just somehow switch off and go into some sort of auto pilot. I believe if I didn't also have the fear of losing my home I would give up and give in. It would bring me great relief but I have given up so much already 😞

    I have nothing left outside of work and if my attendance doesn't improve I could lose that as well but not without a damn good fight 😊 xx

  • You are amazing!!! Keep fighting and make sure they are making reasonable adjustments for your attendance!

    Bless you, you are an inspiration 😊 xx

  • Yes, keep fighting...don't let this wicked disease pull you down xxx

  • Hi,

    I had to reduce my hours a few year's ago so I do 9-230 every day which is plenty,I only just manage this and I sit at a desk so nothing physical... The typing does really hurt but I have a lot of trouble with my arm's. But I pace myself and have a good team. X x

  • Hi Keeleybee,

    Mine is also office based but I look after 12 sites across the country so lots of travel, although my worst days are when I'm on calls all day and barely able to move from my desk and at the moment my hands and arms are so bad I would struggle to type the amount I would need too!

    I think I will either need to change jobs take a downgrade and part time as my job is very stressful which I know won't help!

    But it's early days and I'm going to take in all your lovely advice especially the pacing bit and try and get myself on a more even keel xx

  • Gosh your job sounds like a big big ask. Is there any way you could work remotely so you don't have to physically visit so many sites. Driving is a killer - I can barely change gear sometimes. I am quite fortunate that my gearstick is on the front of the car and not low down so I can often use my right arm or both if reversing. I would have my license taken off me if an instructor saw what I do haha πŸ˜† xx

  • Some of it I could do remotely but I head up a Colleague engagement team so it kind of is part of the role.

    I'm lucky I changed to an auto 7 years ago as I couldn't control my clutch with the arthritis in my hip so it makes it a lot easier however gripping the steering wheel is a challenge sometimes! Hehehe I know what you mean re driving examiner! Xxx

  • My job is currently slow pace too Keeleybee and may consider a 4 day week if start to really slide again. Hoping if I get a bit of PIP I may be able to afford it 😊 xx

  • Keeping all crossed you can get a PIP xx

  • I take my hat off to anyone who could handle a physical/full time job. Working is hard with fibro......

    Just off to work I do hope it's not busy :-) x

  • I am so sorry to read that you are struggling and suffering so much and I can see that many members have given you their stories. It is not easy, and you have my complete sympathy as do all the members. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • I'm so sorry to hear this, I have not returned to work in over a year, I completely understand what you mean by cleaning then your in bed ridden for a few days after its like a trade off. Are you working only part time right now? I'm on pain killers and muscle relaxers that are only band aids for the pain, I use a lot of ice therapy when it becomes unbearable. I really hope you heal and can return back to your job full time! I understand it can be like a loss you mourn over, I managed a company for 10 years and I had to leave, I miss it so much. I hope I can help you in any way!

  • Hi Dragonfly

    Thank you for your reply, I have been fully off work since May and it's scary to even understand how you can get back to work and be reliable, but I'm taking on everyone's advice and will see how I go but I won't try and go back till I feel I could manage otherwise you end up at risk of being taken down capability and I have worked so hard to achieve what I have working through pain and I would be mortified of that happened! Totally agree I feel like I'm mourning unfortunately due to the chronic pain I was in before my hip replacement I just worked on average 10 to 12 hrs a day and then went home and collapsed and weekends were my respite to rest so I got all my recognition from work and now that's gone so I miss it and miss how it made me feel good about myself.....goodness how sad do I sound! I guess I always thought I would get my life back once my hip as done after 20years and just before my 40th next year and now that's just gone as in more pain and random pain all over than ever before plus slipped vertebra and discs.......now I look back and think why did I put so much effort in to work as I haven't got my life back!

    Sorry having such a bad day today my face and jaw have been agony

    Take care

    Jen xxx

  • Jen,

    I understand completely! And am here for you! I've learned to try and allow yourself to have a bad day to mourn to cry whatever you need. It's like grieving a loss. I put everything I had into my job I lived for it. Try and do the best for what your body is telling you. I look back everyday and become sometimes in a panic because I feel stuck like I don't have any control over my body. Work was my escape, my way of defining who I am took a lot of pride and hard work into what I created. I know how this must make you feel. Your not alone in this battle. I am here for you always!


  • Thanks Andrea, wow you are describing me re work!

    But we are more than just work we need to remember that!

    Here for you too on whatever way I can, so glad I joined this as it's so good to be able to talk to people who are going through what you are and understand!!

    Keep strong and thank you so much for reaching out it means so much!

    Take care

    Jen xxx

  • I am so happy I joined to. It really helps to talk and to be around others who are also struggling and can relate. It's not easy in any way, but let's try and not loose hope. I hope you can have a better day tomorrow. Thank you for your support. You are strong and have worked so hard your going to get through this! We all will, and will look back and see how worth it, it was☺️

  • I agree we must not lose hope and we have great support from lots of people on here sharing their stories and what they are facing as well as inspirational tips which will help us all through 😊xxx

  • I am struck by people's stories in this thread of how work was everything in their life meaning that for them the devastation of finding themselves with ill health which reduces their capacity to carry on working is huge. I just feel there is a reminder in there for everyone of the need to create 'balanced' lives, so that the loss of one area does not destroy the whole of Life. Our individual value comes from many things, not just paid employment.Β Our health is priceless and worth more than any job.

  • Hi Stumpedok,

    I totally agree balance is key and I for one have learnt a hard lesson! Pinning hopes and dreams on one operation to change my life really backfired! However I am where I am and now I'm picking myself up and working hard to keep positive.

    The one thing I can say is I have a lot of Colleagues who I can class as friends that have been brilliant through this.

    This is going to be a long journey but my health and ME comes first now


    Jen x

  • With a great attitude like that I am sure you will make only positive strides!

    I find Life has a habit of teaching me "hard lessons".....just wish it would give it a rest sometimes!

  • Me too, a rest from it would be so good!

  • Hi guys this is a very interesting thread but I would like to bring some guidelines to everyone's attention in regards to medications.

    1. Members posting on the site should not be assumed to be health professionals

    2. In posting about health or medical information outside of your immediate personal experience, show a clear distinction between personal experience or opinion and evidence-based information and be careful to not present information outside of your immediate personal experience as fact unless you can back it up with reputable evidence based information sources.

    10. Promotion of commercial products & services is not allowed. You may refer to a product or commercial service by name as a useful resource but you must NOT post a link. You can invite people to use the message system to obtain the information from you if needed. Repeated posts about the same product may be considered promotion and could lead to posts being deleted or your account being restricted. Posting about helpful, supportive or informative resources that are freely available IS allowed and links can be given.

    10a) This extends to posting pictures of your commercial products and/or services including company logos or any recognisable company image.

    Kindest Regards

    Ken (TheAuthor)

    Volunteer Admin For Fibromyalgia Action UK.

  • Hi Ken...just wondering that as this is a long Post your reminder of the 'rules' may be missed by many ...perhaps a good idea to repost it as a separate Post from you as Administrator?. ....lots of new faces on the Forum these days.

  • Thanks, will place a post shortly wit everything on it.

  • Thank you, as a newbie it will be useful and apologies if I have put anything I shouldn't have x

  • Please do not worry you have not done anything wrong. It is just useful to post the guidelines every so often as many members are unaware of them.

    All my hopes and dreams for you


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