Hi, first time question and all advice appreciated - NRAS

NRAS

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Hi, first time question and all advice appreciated

Cara287 profile image
11 Replies

I was duagnosed in March after months of being fobbed off. Iv struggled with multiple flares mostly in my hands, knees, shoulders and left foot. I trying hard to cope with all this but the negative attitude of my wirk colleague is really upsetting. Comments like "its your age, if your sore your as well being sore at work, everyone has joint pain, try not to talk yourself into flares and they wont happen". Oh i wish it was that simple!!! Iv returned to work ( we are nurses in a large health centre) and it seems ahe is telling folk im swinging the lead, plenty folk have RA and get on with it If i was moaning about this i could maybe see that she was irritated by me but i havent !! I know this sounds pathetic but im really upset and a bit paranoid, its that old story - if you dont see pain it doesnt exist !!!

Im embarressed to think its generally thought iv been making this up. Im on naproxin 500 twice a day, hydroxy 400, co codamol 30/500. My nurse specialists advice is painkillers and lie on the couch !

I guess i feel abandoned, a pest and a malingerer. Right now both knees are swollen and sore along with half my right hand. Im so tired and feeling well sorry for myself. I honestly dont complain or discuss my aches or flares. Sorry if this comes across as woe is me.

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Cara287
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11 Replies
Beth58 profile image
Beth58

I worked for public bodies and felt like that for a long long time... 20 yrs infact.

It's only since I took early retirement I realised how much the negative comments affected my health. I'm sorry to say there's nothing I can say or do to make life easier for you, other than rise above it and leave leaflets, fact sheets laying around for them to pick up.

I do hope things get easier for you.

Beth xxx

Cara287 profile image
Cara287

Thank you Beth. I find myself crying a lot.. Far from the happy cheery girl i was, i will do as you suggested tho xx

Judi profile image
Judi

Hi Cara,

Your workmate should know better being a nurse!!!! Definitely dont like her bed-side manner........

You were only diagnosed in March so crying a lot is to be expected, it's a lot to come to terms with. Promise you all of us on here have been there at some time or another so don't think you are alone. Being depresed and fatigued is a symptom of RA. Hopefully once your meds are sorted out you will get some relief from the pains although sometimes they take a while to get into your system. (What a doughnut I am - you're a nurse so you will know all about the meds. etc.)

When she starts her moaning (and etc.) tell her that you thought she would understand being a nurse (throwing it back in her face may shut her up).

Giving you a big hug

Judi

cathie profile image
cathie

So sorry to hear about this experience. Aren't nurses and doctors well known for being very controlled about other peoples pain? I was trying not to say insensitive! If I were you I'd keep a log of things said and done. This sounds like discrimination. And could you see a counsellor? It sounds as though you need more support. Xx

Hi Cara,

I was diagnosed about the same time as you. It's hard to take it all in isn't it.

I'm really surprised by the unfeeling way your colleague is treating you, shame on her, she should know better being a nurse, let's hope she never has to deal with the kind of pain that a lot of us have to.

Try not to let her stress you out as I don't think it will help your RA.

All the best

Mary

I was also a nurse Cara, and my work bosses and colleagues were the most unsympathetic people possible, you are there to care, not be cared for, this is the sort of attitude I also came up with. I have left nursing now.

I dont think they know really what RA is. I never understood RA and the pain and fear that goes with it until I was diagnosed. I have been diagnosed just over a year, but at first I was in so much pain, took lots of sick time and felt like nothing would get better, as a result I became very depressed.

I am now pain free, can do pretty much what I could before, am on the right medication and luckily havent had any side effects from them. I take lots of tablets each day, but that is a small price to feel normal again. I do have a flare now and again, and it is either illness or stress that brings it on.

Bosses and colleagues like this are so difficult to deal with, but I would make an appointment with HR, RA is classed as a disability and hassling you like this wont be tolerated by HR.

Good luck getting some help. I would also get a week or two sick note to get you over this flare and gather some strength.

Take care honey - petra xxxxx

glasgowgirl profile image
glasgowgirl

Hi

I'm so sorry to hear how bad you are feeling - particularly about work. I worked for a Doctors practice for 2 years and was diagnosed with Enthesitis whilst I was there. I experience pain in my wrists, fingers and elbows and occasionally in my lower spine, ankles and buttocks.

Initially my colleagues were quite supportive but, as I needed more time off work, I felt that some of them thought I was taking too much time off and that it was not fair they had to cover for me. I eventually decided to leave my job because the stress of worrying about not being able to do the job and also what my colleagues thought of me became too much. I decided I was better off unemployed and trying to focus on getting better.

I am still in pain but now looking for another job - part-time so that my joints have time to rest between shifts. It is not easy looking for work at the current time but I feel better not having the stress from my last job! I'm even considering self-employment so that I have greater control over my working hours - especially when in a lot of pain.

I get angry and frustrated when I have a flare-up - I can go from being fine to being in agony. I have tried loads of medication but nothing has worked so-far. I have an appointment at hospital next week for Zoledronic Acid infusion - I am hoping that this will work because it is my last option (apart from continuing with pain killers, etc)

I hope you feel better soon. Feel free to contact me through the site.

Take care

lynn-bel profile image
lynn-bel

Hi Cara:

Your work colleagues are well out of order. RA is on the disability list so speak with HR and see if they can reduce your workload - its up to you if you complain about the attitude of the other nurses. Before I retired a yr ago, my co. was very good, gave me a 4 day week which helped a lot. Even better now that I don't have work stress (which makes RA worse). You're right that if the pain cant be seen, people tend not to believe it - if you had a cast on your leg or your arm in a sling, they would prob be different.

Its very tough when you first get diagnosed but you WILL improve as your meds take hold. Use cold compresses for swelling (a bag of frozen peas wrapped in a towel works well) and heat for pain once the inflammation is down.

I dont know if some people have RA and manage well - that may be an out and out fib on their part! My neighbour has RA as well as other conditions and suffers far more than I do. On the other hand, I know someone with RA who can still do heavy gardening work, which I definitely can't do, so there are different degrees of suffering but RA doesnt just give you painful joints, it's also ligaments, tendons, and then there's the flu like symptoms, depression and weeping with flare ups!! So it isnt that straightforward.

On the upside, this website will help you loads, we are here for you. Knowledge is power so as someone has already said, get as much info. as you can. Try to ignore the uncharitable comments from the others; they obviously are in perfect health and have no problems at all!!!

Arthritis UK (I think it was them) did a great study once where they dressed someone with RA up in a suit, looked like a space suit. Everywhere there was pain or inflammation it was marked on the suit, so the pain and discomfort was visible - it was to show how invisible the disease can be (as you say).

Stay positive, smile as much as possible. DON't just lie on the couch, even during a flare, try to stretch, move around if only a little, try meditation (I'm still trying that!)

Big hugs.

Lynn xx

Gina_K profile image
Gina_K

Well said Lynn couldn't have said it better, the whole lack of understanding of RA is v ard, and I doubt many with RA are coping that well, or maybe they are jst at a different stage.

Xx gina

Cara287 profile image
Cara287

THANK YOU all so much for all your comments and advice. Its so helpful to know there are others who know what this is like. So much more than joints !!

Its hard work trying to deal with the complexities of RA without feeling you have to justify it too. Your all so kind. Xx

Im so sorry to hear this I have had work place issues too, but you can get support and sympathy from us on this site xx

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