Meds, Work, benefits

Hi all I work two days(Mondays and Tuesdays) mostly on computer. I have asked if I can work with a day off in between but no one is willing to change at the moment! By Tuesday dinnertime (sometimes or mostly earlier!) I am struggling and driving home is a nightnare, often with one hand alternating.I sometimes wish I could swap to one day but need the money! I take Amitriptyline to help with pain and sleep, Flooxetine in the mornong for pain and to give me a boost, Maproxen for the pain again, Laprazole for my stomach with the naproxen, paracetamols for headaches (co codamol makes my headaches worse) and peppermint oil capsules for my IBS. Just sent my DLA form in yesterday, hope to get some help! wondering about other benefits I could try for but not sure as I look ok and healthy but feel awfull inside and hate complaining all the time to my familly and friends.Also does anyone know does this gets worse? My doc said it's not a progressive disease, can't be cured but is treatable!.

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  • Hi i do hope that someone will see you are struggling and swap a day with youwhich wouldprob make all the difference i am glad you have applied for DLA i too am applying 21 may going to DIAL to have them help me with the forms i can do them but my GP said to go their and have themhelp so i made appyt last wek that wa s1st one avaiable so fingers crossed. i do hopeyou are successful as that may meanyou only have to do 1day but still get money so that would be nice for you , i know what you mean a bout driving i have got a car and drive not every day but sometimes it can be a night mare when you are stuvck in traffic and you have to hold the clutch i tend to only drive into my town and i go se my eldest daughter shelive s30 mins away which is far enough now . oh well hope you get on okwith the site and get lots of advice on other things to apply for i did get a blue badge for the car 3 weeeks ago perhaps you should try andd get one it has been a real bonus to me anyway love to you diddle x

  • Hi MariG just read your blog and you remind me of myself i was working up until Jan last year and yep struggling over years cutting and juggling my hours fortunately working for a GP surgery in admin you could try asking around your colleagues to see if anyone would swap maybe someone would prefer to work one of the days you do for one later in the week, if not maybe see your manager and ask for a change due to health probs they should want to help but i know not all firms are helpful when to look at us we look quote unquote normal thats a laugh !!! I am sorry to say I remember being told it was not progressive as well but hey 20yrs later i am in a much worse place that i was granted other aliments have joined in mainly OA. one trick is try to remain as stress free as possible and listen to your body if at all possible. I too get DLA but get someone to help you fill them in take care sue xx

  • Hi MariG

    Your GP is right. Fibro isn't a medically progressive illness so with effective treatment you can improve. The goal with treatment is to get reasonable symptom control so that you have the best quality of life possible. Having said that, without effective treatment, many people do get worse over time.

    I would maybe consider whether your treatment could improve. Talk to your GP and consider what you could be doing or sourcing yourself.

    The use of Amitriptyline as a treatment for Fibro long-term is not supported by research as it tends to work less well long-term, but with increasingly problematic side effects, especially if the dose is increased.

    Naproxen is an anti-inflammatory. Do you have an inflammatory condition alongside Fibro? If not, I would question whether this is a good medication for you as Fibro isn't inflammatory and long-term use of NSAIDs is associated with common side effects.

    Different medications may help you get better symptom control.

    Plus, the optimum treatment of Fibro requires a multidisciplinary approach, so more than just medications.

    Are you getting (or doing yourself) physiotherapy? Stretches and exercises designed to support your body without straining joints or your neck can be an important part of managing Fibro.

    If you have the option of some private treatments, then something like myofascial release may benefit you. Unfortunately this isn't usually available on the NHS - the training is expensive and time-consuming so not many NHS physios have done more than the very basic techniques.

    HTH

  • Hi marieg,

    Good luck with dla.

    kel xxx

  • Hi Mari, sorry to hear you are struggling at work, its such a long time to be in that position all day and cope with the pain too. When you say no-one will swap with you, have you actually asked your Line Manager or Human Resources Department to assist you with this request? If not perhaps this is the route you should go down, and even put the request in writing so that they have to acknowledge it. If they want you to be able to carry on working without taking sick leave then they have a responsibility to help you to be able to do this.

    Hope you sort something out with them soon. If you can get DLA at least this will give you a bit more financial stability. Take care, Angela x

  • Thanks to you all for the kind replies, so kind. Regarding work I do a sort of job share at high school as a T A for visually impaired children, and the other person will not change days! It is a bit of a bad point because I wanted extra hours at one time! (when I was much better and in need of extra money!) I was told there wasn't any and when I returned from a short few days off work she had extra hours!!!! Moan over. I really enjoy my work as the rest of the staff are a great bunch even though they don't have a clue how much pain I'm in daily so don't want to give up work but its hard to stay in work some days! Can't win can we x

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