How do you cope at work with Sjogerns...

[Dani83]

Hi,

I do office work & the past couple of months im finding the arm pain unbearable, achy, no upper arm strength, weak,numb etc the pain feels like it travels, to under my armpit & also hurts when i lay down. Rheumy - says nothing is swollen so nothing wrong. Ive tried various physio, ostepath plus other treatments. Does anyone else have this?... The thing is i keep having to go of sick cause of the pain & my work arnt happy & keep threatening me with losing my job! Its geting to the point where im wondering what other job i could do. Anyone have this?? X

[Jeanabelle60]

Hello, I've had underarm pain for some time now, worse in the mornings until the meds kick in. Upper arm strength was one of my first symptoms of RD. I have never linked it with Sjogerns though. J

[Dani83 in reply to Jeanabelle60]

Thanks jeanabelle. X

[Hidden]

Hi Dani83

Have you had an occupational therapist come and look at your workplace to see if there is anything that can be put in place, alterations to your work space to help you?

Beverley (NRAS Helpline)

[Dani83 in reply to Hidden]

Hi beverly

Access to work have been out & got me a smaller keyboard, vertical mouse & chair. Rheumy wont give me any more meds. I was alergic to hydroxychloroquine so take codene. But makes me so drowsy at work. Thanks x

[weathervane]

Hi dani

I have sjogrens and was only diagnosed when developed swelling and pain under right arm ( i had all other symptoms dry mouth muscle aches exhaustion was living with that). I had ct scans mammograms and biopsys before sjogrens diagnosed. Only thing helped reduce swelling in lymph nodes was rituximab. I still have pain / discomfort under arm with pains and some pins an needles in arm but much better. Did you have lymph nodes checked?

[Hidden in reply to weathervane]

From what I've been told the few rheumies who specialise in Sjogrens are the only ones who understand the disease process - so your rheum sounds more like an RD specialist to me. My first rheum was like this and called my presumed RD non erosive and took me off all RD drugs as I was so intolerant anyway.

I already knew from a second cousin with SJogrens, that it can present very similarly to RD. Hers started decades ago as pain in her shoulders. She's never taken any specialist medication for it and sees a functional doctor -but last time we met she told me that the arthritis has got much worse and her GP was sending her back to rheumatology. She's self employed like me but a lot older than I am so my guess is that she will soldier on.

Codeine doesn't sound enough to me and it's not great to be living off this as it's quite addictive and the effects stop working after a while I think. As Weathervane says there are other treatment options if SS becomes more than dry eyes and mouth as it so often does. It is a systemic connective tissue disease after all. Time for a second opinion from a rheum specialising in Sjogrens if you can find one in your area?

[Dani83 in reply to Hidden]

Thanks twitchytoes, yeah i dont like relying on codene makes me to drowsy. Im waiting for pain management programe. Then my doctor said once ive been to that then they will refer me for my 3rd opinion. Xx

[Dani83 in reply to weathervane]

Hi weathervane

My rhumy specialises in SS. He checked my lymph node & said cause its not that hard & it moves- nothing to worry bout. I just cant understand why he wont try me on other drugs considering the pain in im. Xx

[weathervane in reply to Dani83]

Difficult one Dani, you need to be able to cope with work and its not easy when you are in pain. I take lyrica I increased the dose very slowly without sideeffects luckily. It has helped with my pain as well. You can ask for a second opinion although if your rheumy is ss specialist who else do you go to? It is worth asking your doc again there must be something else they can suggest. Its awful that you have to push and fight for help. My best thoughts are with you I hope things improve 🌸🌸