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[Birman4]

How can it be that one day I am fine and the next day I wake up and I can’t walk or use my hands another time. Today I was woken at 4am with terrible pain and throbbing in both wrists, fed up with not knowing what is going to happen next especially when it comes to work. I know u have to wait for the Methotrexate to work (Hydrochloroquine?) did not work). It’s now 9 months after my diagnosis and if I was my employer, I would of sacked me.

[Hessie5]

Hi Birman4 - totally relate. It can be frustrating as some people don't get it, I feel guilty sometimes. I had terrible flares that lasted 2 days, could not walk. Prayed it would heal to get to work. I am on daily prednisone to help me through. Such is the awfulness of RA. Just rest assured you shall feel better soon, look after yourself. Hope you feel better soon. Hessie

[LillithMay]

Heya, I don’t know if my words will help but Im in the same boat. I’m recently (6months) diagnosed and I’m struggling the same. Waited three months on methotrexate in increasing pain to be told that they will up the dose and wait another three months. My employer is obviously unimpressed, and I’m going stir crazy indoors. I hope the treatment starts working soon xx

[Mmrr]

I too am in the same position, yesterday I was okay, today so stiff and crippling brain fog all day, which is now lifting. It's the uncertainty that really gets to me too. Nothing to do but rest and hope the meds either start working or are changed.

[Jules13]

How long have you been on MTX? It takes 8-12 weeks usually. I was the same... felt utterly helpless not knowing what each day would bring. Hold on xx

[Birman4 in reply to Jules13]

I have only been taking it for a month but the nausea is getting to me now. They might consider injections for the Metho if I am like this again next week. I had a steroid injection just before Christmas, which did work but I have slowly noticed the stiffness returning in the mornings.

[sjhewitt42 in reply to Birman4]

Hi the injections are a lot better for the nausea. I would really push for them as I couldn’t even get out of bed some days with the side effects but the injections were better. Sarah xx

[Hidden in reply to Birman4]

Are you taking folic acid too Birman4? That can help with the nausea. I’m glad your rheumy is keeping an eye on you and being responsive

[Birman4 in reply to Hidden]

Hi yes, I was on one a day apart from the day I take Methotrexate but the consultant has suggested that I take 2 the day before and 2 the day after, and then one every day after that. So it is a wait and see situation at the moment.

[Hidden in reply to Birman4]

Oh that’s good then. Hope it improves soon.

[Birman4]

My employer has been very good about the situation but they don’t like it if you ring in sick on the day you should be in work because it is very hard to find cover. I should really of had a disciplinary by now but they have waved it. I now have two days to get my wrists working again and I would love some sleep!

[Cheylann]

I wonder about it too. In the morning I can be fine and by the afternoon wracked in pain. It's like "where did this suddenly come from". So frustrating and annoying.

[Kazwilks]

Hi Birman I totally understand the situation your in. Unfortunately methotrexate did not work for me so I'm now waiting for biological injections. I got finished from work on capability, my job entailed a lot of moving and handling which in the end became impossible for me to fulfil. The positive for me I got pensioned off after fighting for 2 years so there is light at the end of the tunnel. Wishing you good luck with the methotrexate hope it eventually works for you

[amberly87]

Birman4-

I live the same life. Thank God I have an understanding & compassionate boss that, while he doesn’t understand & can’t relate, recognizes & believes my issues & struggles and prioritizes my health. Despite this, I still feel terribly guilty about the number of absences for appointments, flares & standard illnesses. I’m not sure if everyone else responds to colds (& other similar illnesses like strep throat, etc), but when I catch something I have it twice as bad for twice as long as everyone else, not to mention how easily I catch stuff!

Methotrexate didn’t really do anything for me. Remicade was a life changer, but even at infusions every 6 weeks the medication doesn’t last the whole time and I still flare.

I think in regards to your employer the best thing you can do is openly communicate with him or her. Tell him how guilty you feel about your absences and the effect your condition has on your work performance. I believe letting them know this further personalizes you and your struggles and helps your boss to see you as a victim when you have to call in, instead of someone who is always calling in. My use of the term victim isn’t implying the goal is to gain sympathy, I simply mean that it’s important for our bosses to understand that we are impacted by calling in just as much as our job is affected.

[scotslass333]

I totally feel for you, indeed ALL of you who are trying to work as well as having this awful disease. I was retired before it hit me so didn't have to try and hold down a job as well - I just don't know how you cope, and it must genuinely be hard also for employers, because it's the unpredictability of RA, like you say one day fine, the next can't get out of bed. Hang on in there, wishing you all the best. By the way, I had methotrexate injections but unfortunately it wasn't a lot of help but that's just me. xx