Work and RA

[Billy2019]

Work and RA

I’m 36 and was diagnosed with seropositive RA nearly 18 years ago. The last 6 or so years I have really started to struggle with work. I have tried lots of different treatment options, the latest being Benepali injections and then Rituximab infusions, both of which haven’t worked for me. I was referred to the pain clinic at my request as I had to take a year off work last year as I was in too much pain but was really keen to try and be able to do some sort of work within my team so I started back there in January this year on a part time basis. The pain clinic increased my dose of nortriptaline at night and started me on pregabalin which seemed to work initially but now two months later I am really struggling again. The pregabalin is just about taking the edge of the pain but it is now also causing heart palpitations...I am having further investigations for this this week. I am off work again and really hate letting my team down all the time. So I’m starting to think if I should admit defeat and give up work /look into medical retirement and would be interested if anyone else on here has been through something similar? I just feel so young to give up work but me stressing about whether I am well enough to make it into work each day probably isn’t helping either. Any advice would be much appreciated

[Hidden]

You are right. You have to look after yourself your employers will only take. mine know I’m not well and can visibly see when I’m struggling but they don’t make any compensation for it. I use to push myself till I made myself really bad. Not anymore I won’t feel guilty they don’t .

I too am S- negative and don’t always have swelling . My feet were the first to be effected along side the extreme fatigue constantly dismissed by GP.

My hands,feet and ankles are weak with ligament pain but the fatigue............ now that’s right off the scale awaiting a long over due consultants appointment.

[Azzure in reply to Hidden]

Thank you!

They have said now it’s probably more Fibromyalgia which I’m not so sure. All I’ve done the last few months is work full time and go home on sofa because I’m so exhausted. I don’t have a social life because I just don’t have the energy or willingness to go out. It’s really not nice. I sleep on weekends and when you live alone there’s no support either. I’m not sat on my pity pot but really don’t want this it’s horrible. Yes medicals don’t want to hear about the fatigue and that is like a slap in the face because I’m not making it up!! I’m such an active person before my diagnosis a couple years ago I did the 3 Welsh peaks and they thought the inflammation in my feet was because of that. I did try to say I had it before then.

This last week I can’t even peel an orange it’s so painful and it’s tiring. I have resorted to Amitriptyline to help me sleep and then waking up hobbling to bathroom because of my foot pain is just shit!

Work colleagues have no idea, neither do managers all they care about is a body back in work, which I understand. I suppose my nature is to not be so assertive with my superiors, but you have to keep banging the door and that is draining in itself!

I understand how you feel look

After yourself x

[Hidden in reply to Azzure]

I’ve been like you for a month work sleep that’s my life no energy to even speak to my family.

You would think the medics would just show some understanding and not make you feel so isolated.

I’m lucky my family really support me ( I feel guilty that effects their lives) you must feel very lonely.

Hopefully it will pass 🤞

[Azzure in reply to Hidden]

Thank you ! My son is v good and he understands but I’m sure they get fed up with the same old record 😂 it can be a grey area because when I’m well I’m on top of the world and he must think she can’t be that bad. But what gets me down is when the RA hits me.

I’m being a lot kinder to myself I have been against meds but my friend said if you can take something to make you feel better why wouldn’t you. And she is right!

I think it’s passing already 👍xx

[Hidden]

I was medically retired at 27, my job was very physical and there was no way I would ever have been able to go back to doing it due to the severity of my RA and the damage caused. You don’t say what your rheumy is suggesting you try next but I would definitely keep them updated with how you are doing, if they don’t know you are struggling then they can’t help. Being medically retired gave me the freedom to do voluntary work when I was having better times but I was lucky in that I got a good pension and have a husband working which enabled me to do that. I did eventually work again part time (very part time 😊) but again it took a long time to find something that didn’t cause me problems.

As you say, stressing about it doesn’t help your RA and I would look at your options and work out what would work for you. Obviously money may come into it and you could also look at benefits you may be entitled to which could help too. It’s a very difficult decision to make, mine was made for me really, I was working in residential childcare and felt so bad that someone was having to cover me and it was a small team too. Only you can decide if medical retirement works for you but I would look into it or talk to your employers about it. You never know, a break from the pressure of having to go to work may make a difference to your RA and give you the space to think about work you could do. Don’t look at it as admitting defeat, look at it as looking after yourself and making your life better. Good luck and do let us know how you are getting on.

[Hessie5]

Hi Billy2019. Are there measures your workplace can put in place for you to help cope? I work from home a lot. They have my details to Skype, chat, message me anytime.

I put my health first now, and trying hard to let go of guilt when I am not in the office. Health first always....

If you don't want to give up work, see if you can find a way. Wishing you all the best. -Hessie

[Billy2019 in reply to Hessie5]

Thanks Hessie. My work place has been good and have made reasonable adjustments and are allowing me to work from home if I need to.

I just find when I work from home I need to prove /justify what work I’ve done (this is a pressure I put myself, work doesn’t put it on really) and tend to end up doing more hours than I would if I was at work!

But you’re right, health should come first and I just need to be stricter with myself with the work I do when at home and if I’m not well, I’m not well, I just need to try and stop feeling guilty.

Wishing you all the best too

Sarah

[Hessie5 in reply to Billy2019]

I totally understand Sarah. We are in the same boat. I start every morning with writing a To do list in my Outlook. As I go through the day I log all the actions I have carried out. It helps me and my boss has a snapshot of my day. Do throw guilt out the Window and learn to be gentle with you. 😌

[rheumatoidsewer]

Hello I have been on Rituximab for some time and experience has shown me that it does take some time to start working sometimes up to 3 months but when it does it really works well so don't write it off just yet give it time and it may well start to work for you. HTH