Help and advice please

Hi I’m new here I have after 6 years of being told I have fibromyalgia that it is actually osteoarthritis, I also have it in both hands, shoulders, knees and spine with cervical spondylosis with bone Spurs I have recently had to take sick leave as my right arm is heavy and week , my mum had this but they called it in her time a crumbling spine , this is taking every bit of confidence away from me I find my neck and legs are very painful and don’t sleep very well to where I am unable to concentrate on my work I’m 61 now and have always worked but I am finding it very difficult my car is my only independence if I use my sticks at work I find one of my managers looks at me with disgust and several other colleagues get immense joy of telling me what I am doing wrong all the time I am afraid for the future but it seems the doctors don’t seem to offer anything but tramadol and the pain clinic I think coping with the pain is the hardest as it makes me so tired can anyone offer any advice.

thank you

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Comments

  • Ellen
    Ellen Moderator Posts: 589

    Hi @Jona

    I am very pleased to meet you and welcome you to this lovely Community. I see you now have a diagnosis of Osteoarthritis. It sounds as though you are struggling particularly at work from reading your post?

    I have just posted a link to some information about this subject to another new member:

    You do have rights Jona so have a good read of the article before taking the next step at work.

    Regarding using your sticks. People do get used to us using our walking aids in time. When I first used mine I was sure everyone was looking at me, but persevere if you need them they will get used to it.

    Do you have a manager who is more supportive you can speak to? You sound to be having a rough time with one or two colleagues and some support from work would really help.

    You say the Dr has referred you to a pain clinic. Many of our members have had a positive experience at pain clinics.

    Coping with pain is tough this might give you some ideas:

    Best wishes and keep posting. Talking to people who understand really does help.

    Ellen

  • Mike1
    Mike1 Member Posts: 1,714

    You need to see the Pain Clinic, they are the experts and can offer different meds and treatments which may help. In addition with regard to your working environment if a manager looks at you with disdain and other staff members seem to pick on you I would suggest putting in a grievance, also take advice from the CAB as you could have a case for Constructive Dismissal if they are making your working life untenable.

  • frogmorton
    frogmorton Member Posts: 26,666

    Definitely agree with Mike it's not on the way you are being treated at work @Jona

    It sounds awful I am so sorry 😕 and cross with your manager and those people at work. I hope you ahve some nice people there too who you get on with.

    Take care

    Love

    Toni xxx
  • Jona
    Jona Member Posts: 291

    hello again what a group of lovely people on here your advice is greatly appreciated , there are some nice people there but very much run by a group of women who try to make themselves indispensable to the bosses I took a month off unpaid recently and since returning it has got worse and the nice ones won’t say anything as constantly being reminded that they’re lucky due to the current climate they have jobs tbh I’m still coming to terms with that this still goes on with adults

    I don’t think I have any choice but to hand in my notice as I get comments like “it’s only arthritis I’ve had cancer or look at so and so she’s only got one kidney very dismissive comments I’m good at my job but when your left out of a chain of information it’s only natural

    As for the pain clinic been waiting for some time now and hopefully they can help but as I’m sure they’re like most the nhs overwhelmed

    thank you all for the great advice and hope you all keep safe

  • Lilymary
    Lilymary Member Posts: 1,300

    I'm so sorry people are so dismissive of your condition. It's hard to know what to say in the face of attitidues like that, but perhaps you could go into the office one day with a couple of stones in each pocket and suggest they put them in both shoes for the day, to get some idea of the effect constant pain has, particularly in respect of mobility and mood. Maybe tie some weights to their hands as well, so they get some idea of the effect of weak and painful arms. And then remind them that you can't take the metaphorical stones out of your shoes like they can.

    "just a bit of arthritis" is a phrase that needs to be jettisoned with great force into the bin, and replaced with "constant disabling pain". My limp is now so bad people can see I'm in pain, and I get a bit of sympathy, but it's harder when it doesn't directly affect how you move.

    Sending a gentle hug. (())

  • Jona
    Jona Member Posts: 291

    Thank you Lilymary for your very kind and welcoming comment you have summed it up better than I could it’s made me feel so much better that you understand so glad that there are people out there like you , love always to you x

  • Airwave!
    Airwave! Member Posts: 2,427

    Your treatment sounds good, I waited a lifetime to get what you’re doing. Acceptance may be what you need to think about, there is a big subject in the posts, do a search and have a read. There are many of us in the same position, do not be defined by arther, we are more than just a victim of an illness, we have lives, families and many friends who care about us, who love and support us.

    Ignore your thoughts of what others think of us, I doubt if they’re correct. If you’re employed you need to have a representative that has knowledge of the employment system and can look after your best interests, a union rep or similar. Your employers have a duty of care to you once they’ve been informed. I was in the same position and was medically retired 21 years ago, not what I wanted but I admit it was in my best interests.

    life after diagnosis, there is one and with help you have to decide what yours will be, don’t just be a victim. This may sound harsh but I speak from experience, your future is up to you.

    its a grin, honest!

  • Jona
    Jona Member Posts: 291

    Hi Airwave

    Thank you for the push I needed I have fought this for so long I’m allowing other people to undermine me all the time it’s me whose allowing arthritis to define who I am and other people seeing me as weak time I took control and made my life happier and leave the negativity behind and start to grin with my family


    best wishes to you always

  • Mike1
    Mike1 Member Posts: 1,714

    "Just a bit of arthritis"! I could really scream and swear and would certainly do so if someone said that to my face. I only have a "bit of arthritis" but it affects my whole body, not to mention my whole life, and has crippled me to such an extent that I use a damn wheelchair and have questioned the point of carrying on. If you hand your notice in you must claim Constructive Dismissal, to support that claim make notes of what was said and what you experienced.

  • Jona
    Jona Member Posts: 291

    Airwave.. big bunny hug please


    Mike... I agree with Airwave don’t you dare give in got a bridge to cross and I need you

  • Jona
    Jona Member Posts: 291

    Mike... where is your arthritis? And cute cat mum used to have lots of cats we called her the cat queen one adopted her one Christmas Eve kept coming to be fed rather, moved in pregnant by the way so she then had 5 she managed to find good homes for them but kept Aimee your cat looks just like her too 😊

  • Mike1
    Mike1 Member Posts: 1,714

    Mike... where is your arthritis? 

    My OA is everywhere! Plus Degenerative Facet Joint Disease, compressed discs in lower back, detached disc in neck and several other issues.

  • Jona
    Jona Member Posts: 291

    Mike, I’m so sorry gosh how you must suffer makes me feel quite a whiner compared to you how brave you are

    I really hate the way I creak about but at least they hear me coming eh this cold weather doesn’t help either but my son bought me a deep tissue massager and it helps a bit

    Sending you a massive hug but gentle one keep strong and positive you’ve helped me more than you can imagine 😊

  • MoWW
    MoWW Member Posts: 65
    edited 8. Jan 2021, 14:16

    Hello @Jona

    I am sorry to hear about the issues you have faced within your workplace. I manage the Versus Arthritis Working Well service in Scotland providing employability advice. Working Well with Arthritis (versusarthritis.org)

    Living with a long term condition such as arthritis or Fibromyalgia can be challenging. Your employer has a duty of care to ensure you are treated fairly and have the support you require to remain in work. You have rights under the Equality Act 2010, Disability rights - GOV.UK (www.gov.uk).

    If you are finding your job difficult due to your condition speak with your manager or HR, there may be some reasonable adjustments that would help such as car parking space, flexible working hours, reducing the hours you work or changing some of your tasks.

    ACAS gives some information on reasonable adjustments, What reasonable adjustments are: Reasonable adjustments - Acas Equipment such as an ergonomic chair, desk, keyboard, mouse, monitor arm or footrest can help make your workspace more comfortable. Access to Work (AtW) is a government fund that can cover some of the costs of these, Get support in work if you have a disability or health condition (Access to Work) - GOV.UK (www.gov.uk)

    You can ask for an assessment of your needs funded by AtW, an independent assessor will discuss with you how your condition affects you and the work you do, based on this they can make a series of recommendations to AtW who will then confirm what they will fund. Your employer would receive a copy of the list of items recommended and advice on reclaiming any costs - this depends on size of employer.

    You mention you drive, however if you are finding driving or using public transport to travel to work difficult. AtW can consider funding taxis to work - it may be that your condition fluctuates and you can drive some days but pain or fatigue makes this difficult on others. Having access to travel support may help you work on those days.

    Before you make any decisions on work, discuss your concerns with your employer and consider if any of these solutions would help you remain in work. In addition, for some people living with a long term condition or disability, you may be able to apply for disability benefits such as PIP, Personal Independence payment, this can be paid while you work. Personal Independence Payment (PIP) - GOV.UK (www.gov.uk) I would always recommend you get help completing the form from a local welfare or disability advice service.

    Your colleagues sound as if they lack understanding and compassion, your manager or HR should ensure that you are treated with respect, using some of the information on our website to help your employer and colleagues gain a better understanding of your condition may help dispel some of the myths around arthritis. Osteoarthritis (OA) | Causes, symptoms, treatments (versusarthritis.org)

    I hope you find this information of help, please get in touch if I can assist further.

  • Jona
    Jona Member Posts: 291

    Thank you MoWW for the advice but I’m afraid my workplace have been aware of my situation for some time and although it should have been outlawed decades ago being disabled in a workplace does single you out especially if you take time off and no matter what the govt puts in place indifference to illness does enable others to make you uncomfortable and feel less competent

    I am a qualified phlebotomist but had to give that job that I absolutely loved, up due to the cramping in my hands and have had to fight tooth and nail to get a diagnosis as I have been dismissed as being depressed and to be honest it has made the process very stressful it was only seeing a doctor that ordered the correct X-rays and scans that they found the osteoarthritis in many parts of my body

    i don’t want to fight any further I’m afraid some people are just not as understanding or as nice as the people here I do hope someone can change the attitude of others

  • MoWW
    MoWW Member Posts: 65

    Hello @Jona

    I am sorry that you have had such a discriminatory experience with your employer. As you will know if you are unable to work due to your condition you may be able to claim Statutory sick pay or Employment Support Allowance, your employer may consider ill health retirement - you would usually have an Occupational Health assessment to go though this. Your union rep or HR could advise, however if you have already left and feel you may have been entitled to ill health retirement check with your local Citizens advice or legal advice service.

    If you would like to discuss this further my contact details are here Working Well with Arthritis (versusarthritis.org)

    kind regards

    Mo

  • Jona
    Jona Member Posts: 291

    Hi MoWW

    Thank you for your advice, I’ve taken sick leave and it’s been amazing how I can rest when needed to made such a big difference my hands are not as painful or swollen with pain, also my neck isn’t doubled up with pain there have been a few instances where I couldn’t get out of my chair at work not one person offered any help either , work have been in touch but only to ask when I’ll be going back not even asked how I am so I have my answer life is too short to carry on to be loyal to a place that can’t even be bothered to ask how one is feeling.

    take care 😊

  • frogmorton
    frogmorton Member Posts: 26,666

    Hi @MoWW

    I am so glad things are improving for you with some actual rest!

    I hope this keeps up! ((()))

    Love

    Toni xxx
  • Jona
    Jona Member Posts: 291

    Hi Toni

    Thank you, so many amazing people here very happy I reached out 😊👍🏻😁 xx


    Take care big hug a very gentle one though 😉

  • Gentry
    Gentry Member Posts: 5

    Hi jona , I know exactly how you feel , I'm really struggling with work , I work frontline nhs, and really need to be on the ball , I have arthritis everywhere and need both hips replaced , surgery has been held up due to covid and the pain is getting worse , I've had a total flare up and have pain from the neck down my spine and hips are killing me so I called in sick , I told my manager I didn't think I'd be in all week as walking sent a shock through my hip straight up my spine , she told me to take some paracetamol it's only arthritis, I was fuming and spent the week stressing about work which made me feel worse , my gp has signed me off for 2 weeks and when I sent her the sick cert she complained it only said back pain on it and I'm now stressing again , I work for doctors and they are treating my condition like it's a minor thing , I'm totally exhausted all the time and getting to the stage of wanting to leave as feel much better physically and mentally when I don't . Been feeling really low at work , all the new staff are kids , I'm 57 now and just don't fit in with them , so my body feels really old and so does my brain . Feel foggy and have to ask silly questions cause I can't remember or keep up with the constant changes , due to covid things change every day , and the surgery door is locked so I'm up and down all day long , my body just can't cope with it anymore , other people's attitude of just take pain killers and get on with it are making me feel like a whimp . And making me worry that I'm in more pain than I should be .

  • Mike1
    Mike1 Member Posts: 1,714

    @Gentry you are not being treated fairly by your employer, have a look at https://www.versusarthritis.org/about-arthritis/living-with-arthritis/work/

  • Jona
    Jona Member Posts: 291

    Hi gentry

    Please try not to stress as at the end of the day we are just a number to them tbh they have a problem it’s pay us experienced staff a wage or take on younger ones to pay them less

    my employer has started the official route now she and 2 other members of staff want a meeting I declined as unable to use my arm, so can’t drive there, she then wants to discuss over the phone on the 10th I decline due to the medications the doctors have put me on makes me incoherent and unable to think (not very good doing a job when decisions need to be made)

    you know how it works with surgeries 😉but at the end of the day arthritis doesn’t have a 9 to 5 time when it hurts but when your being made to feel like your not competent or made to feel anxious it’s not that we don’t already feel less confident anyway but it’s all the little things that make it big

    working on the frontline is really hard without support and people are mean but there comes a time when you have to say enough and think about you put yourself in the position of a patient and what you would say to them I’m really good at my job as I’m sure you are experience goes a long way so do not let it get to you it’s business not personal

    here on this forum there is a wealth of experience and the people are lovely I’m gaining so much confidence now just by reading and talking to them put yourself first now and get well enough it’s not just arthritis for them if they had it stay strong 💪 love and health always

    Jona 😊

  • Jona
    Jona Member Posts: 291

    Hi, just a quick update I’m being put on disciplinary for taking sick leave although I’m still signed off for the foreseeable I’ve to expect a phone call the will involve 3 people on the 12th can anyone tell me if this is legal please feel like I’m living in the Victorian era

    thanks any advice please