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Need some advice RE:FMS/CFS/ME

Posted , 4 users are following.

stacey14592
stacey14592

Hey everyone. I'm 19 and have been suffering ME and Fibromyalgia since I was roughly 15/16 (can't remember as brain fog has hit bad this past few months).

I work as a support worker for disabled people (how ironic?) and I work roughly 20 hours a week. I have been in this job 6 months and everything has been fantastic except the occasional fatigue from the walking around I do a lot or going to the gym with clients.

Although I am convinced that for 6 months my body has been fighting a losing battle and has now given up and I've had the mother of all relapses, six months worth of fatigue, pain, every symptom under the sun.

I've never had a relapse like this before, I'm on day 3 and it's just getting worse, I collapsed out cold on a clients kitchen floor on Sunday night 15th of March, Monday I took the day off to recover and Tuesday back to work for 3.5 hours, except I was a complete waste of space, did everything wrong, in agony and just felt like crying the whole time I retreated home at 12, took so dihydrocodeine and went to bed where I had a lovely (non refreshing) sleep.

Sorry for the long story, I now get to my question(s) and any advice would mean the world to me.

1) I'm seriously considering leaving my job, am I being hasty?

2)would it be worth getting a sick line from my doctor and taking at least a week off? (Bearing in mind my boss hates me for taking a day off)

3)is there anyway I can live unemployed?

4)How can I make people understand the severity of this?

1 like, 20 replies

20 Replies

  • patricia78625
    patricia78625 stacey14592

    Posted

    Hi stacey

    1. I would go back to see your GP they will give you the best advice I hope

    2. I wouldn't give up your job just yet as you are so young maybe get more rest

    3. I doubt you would be able to live unemployed unless you live with your parents

    4. People do understand the suffers on this site

    i have been diagnosed with FMS for 8 years but suffered pain and fatigue for years

    but I couldn't give up work and I did not want to as I believe even with the pain you have to have a goal in life what would you do if you gave up work try some relaxation methods and keep your pecker up sorry you are suffering at such a young age Patricia x

    • stacey14592
      stacey14592 patricia78625

      Posted

      My job is just so physical I'm not sure I can keep up anymore, its not good for my health and to be honest it's not fair on the clients either.  Maybe I could ask for less hours?  I would HATE to be unemployed and I live with my parents but they demand money from me 24/7 which is why I have such a hard job - the money! I'm applying for alot of freelance work to see if I get anywhere with that, also applied for a college course too so maybe with less pressure I can rest more.

      Another problem, I don't ever have time to rest.

      Thank you for your reply Patricia x

  • patricia78625
    patricia78625 stacey14592

    Posted

    Hi Stacey 

    yes your job is very stressful I know that from my own experience I do hope you can find a better job are you any good at working in an office or even a supermarket would be less stress until you go to college try not to let it get you down their is a lot of help out there if you can find it what does your GP think he must get you some help if you are this bad go back to the surgery and speak to them if you can

    hope you feel a little better soon

    patricia x

    • stacey14592
      stacey14592 patricia78625

      Posted

      Thanks Patricia.

      To be honest I boycott the surgery alot because doctors seem to believe it's all in my head rather than listen to me. For example I went back in October complaining about the pain and the first thing the doctor said was "Oh, well how is your mood?" because I've had serious mood swings since I was about 13, I told him straight that's not why I was there and he ended up prescribing me Citalopram telling me it would help pain when really he was prescribing it to me because he thought I was becoming 'nippy' and 'agitated' again, Oh and he told me to buy a self help book off amazon!  

      Needless to say I reported him and would not go back.  I live in a very small town so there aren't many doctors, my first doctor sent me through lots of tests but after that he hit a dead end and lost interest in me.

    • patricia78625
      patricia78625 stacey14592

      Posted

      Hi Stacey yes I have been through all this with some GPs but I found a wonderful lady GP but sadly she retired and the new ones at my surgery are not so symperthetic the trouble is they are so overworked and not many of them like their jobs and I have been told by the practice manager that in the future their will be no  GPs wanting to work there and was made to feel I was a nusence and they were overworked and stressed out so I have no faith in the NHS at the moment but that doesn't mean you can't find a good GP go to your citizens advice bureau if you have the time and ask their advice I hope you are having a better day today Patricia x
  • Macvee
    Macvee stacey14592

    Posted

    Hi,

    Sorry that you have relapsed, it's heck on earth isn't it?

    Firstly I wouldn't advise you to just leave your job as you would more

    than likely suffer financially. I would go the sick note way as you will get

    paid and it will give you the chance to recover properly.

    Your boss is unable to sack you without a good reason and you are the

    important one.while you are on the sick look into any benefits that you may be entitled to and disability living allowance. It doesn't hurt to try for these things. They can only say no or yes. Good luck with it all.

  • christine26761
    christine26761 stacey14592

    Posted

    Stacey, I just want to say that Fibro is real..and not  in your head...so feel validated and genuine...from personal experience and reading others blogs..they all thought it was too once..then the diagnosis comes...and we feel sooo validated..that all these years it's actually been so etching..your sooo young, I've had it for over 22 years but know that I had it for years before my diagnosis...like everyone else..I certainly wouldn't give my job up...please, hang on to it as long as you can...try to have some time off and rest...stress is sooo very bad for Fibro..it just magnifies everything we suffer..especially fatigue....try not to bother too much with people that don't understand what your going through...it's their problem NOT yours..you need very supportive people around you..that really care..I had to just drop people who were around me that made me worse...they might feel sad..but I wasn't bad...many have come to understand..years later..like Patricia said: go talk to you doctor again...just remember, they are there for you not visa versa...your health is their wage..sounds harsh doesn't it, but I have found I have take control of me and my health...I really feel for you Stacey..your sooo young..be strong and try and think as positive as you can..it's very empowering...be blessed..:-) xxx. Keep on blogging...
    • patricia78625
      patricia78625 christine26761

      Posted

      Hi Christine great advice for Stacey I am new to this forum and didn't realise how many sufferers were out there it's great to know there is a life line because I look so well it's hard for people to see my pain and I don't complain but at times I feel so alone as I haves all the times when doctors have told me it's my brain telling me I'm in pain so now I don't bother with them and treat myself  I also have a councillor I go to for which I pay privately because I have never been offered it on the NHS and this helps me talk through my fears because my FMS has got so much worse over the years I have worked fo 40 years without a break sometimes two jobs I wasn't diagnosed until I was 55 years old my a rhumatologist that was a great relief to me because I thought I was going mad

      patricia x 

    • christine26761
      christine26761 patricia78625

      Posted

      OOOO' I can relate to that...thinking your going mad....most of us on here have gone through that..there are just soooo many symptoms to this Fibro....a  GP will just treat one Symtoms at a time...then years later your still suffering. so you get referred to a Rhumologist...then finally a diagnosis... do wish that more doctors new about this autoimmune disease...maybe we would get a bit of empathy when we first go to a doc...and stop being looked at like it's all in our heads... Welcome to this forum Patricia , it's full of very interesting knowledge from people who had suffered different symptoms for years...it's great to be able to just ask a question because something strange has just happened to us..and find out it's only the old Fibro again..keep on blogging..it's a very encouraging and supportive site..be blessed, have a great day..:-) xx
    • stacey14592
      stacey14592 christine26761

      Posted

      I'd I was to drop people that didn't understand/care Id be left with no one! Haha my plan is to take some sick time off work and visit a friend for some peace as I will not get better at home. I'm not lazy, but I have to do everything myself so if I can't walk then that means nissing out on food, and eating.

      I've hated my job for months so I guess I'm trying to find an excuse to leave now

    • christine26761
      christine26761 stacey14592

      Posted

      I'm sure you would never be left with..no- one, Stacey....it's sounds like a great idea to chill with a friend..ENJOY your time and de-stress...I'll be thinking of you and praying for you......you deserve it..be blessed..:-) xxx
  • Bee70
    Bee70 stacey14592

    Posted

    Hi Stacey14592

    Wow, I feel for you and commend you on the job you do! 

    It's not easy but you need to carry on. Take advice of your GP regarding your health. I do recommend CBT (Cognitive Behaviour Therapy) get your GP to refer you to the CBT team. These sessions help you with you and nothing else. It will not make your pain go away but will help you cope with day to day tasks and see you put yourself as number one. Don't give up your job but do speak to your boss and let them know your situation too.

    Wishing you a good day today !biggrin

    • stacey14592
      stacey14592 Bee70

      Posted

      I don't really like to talk about it out loud as i end up crying a lot. It's very frustrating.
    • Bee70
      Bee70 stacey14592

      Posted

      Hi Stacey14592

      It's good to talk !

      Definitely, try the CBT sessions it will help with your mind and thought process too.

      We are all here for you. You are not alone as I have just found out by using these forums. biggrin

      Stay calm and positive, I understand it is hard when you are facing it alone.

    • christine26761
      christine26761 Bee70

      Posted

      Yes yes yes, to all that Bee...be encouraged..it's soo good to be able to support someone positively on here, well done you...:-) xxrazz
    • Bee70
      Bee70 christine26761

      Posted

      Thank you Christine

      We are all supporting each other which is so encouraging. biggrin

       

    • stacey14592
      stacey14592 christine26761

      Posted

      Had a bad day today. Sick at work, got to the doctor and been told I have a sickness bug, very disappointed but I managed toget 7 days off work
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