Scared for the future

Was laying in bed last night with ice packs on my hands because they were so swollen from work :frowning: it scares me it’s this bad already and I worry how long I will be able to work for :frowning: I have studied 10 years to become qualified and I am so worried it may have all been for nothing if my hands fail me - my hands are my life!! I need to perform ultrasounds on babies and that requires such fine hand movements and a lot of control. My joints in my fingers have become increasingly swollen over the last month and so sore it hurts to wash my hands (which I have to do after each patient). So scared :(. Have any of you managed to continue the job you love despite the PsA ??

Noticed on your page that you were not on an biologic. Are on one now?

Hi Kelly,

You should contact your doctor or rheumy and let them know what's happening. You may need to change your medication, if your still having swelling like that then it should be addressed. The journey of finding the right medication can take a while. Hope you're feeling better soon <3

Held out for a couple of years after being told I needed to quit, but the job finally just got to be too much for me. Mostly (for me) it was the stress. I was the CEO of a nonprofit organization, and every day was nothing but putting out fires, keeping the board from making really stupid decisions because they really were clueless about what we did, and dealing with people who were usually in a really bad place (that was why they were coming to us). Of course, I'm the kind of person who will do whatever needs to be done regardless of how bad I know I'm going to pay for it I was doing construction projects, moving furniture, unloading trucks etc. etc. I'm one of those people that believe in leading by example, so I just didn't have time to let my PsA get in the way. I ended up making things SO much worse. When I finally quit I spent the first month pretty much in bed recovering.

Start thinking about things you can do to keep from irritating your hands. Maybe change the position you hold them in while doing your job, or arranging with your boss to let you have time between patients (is there someone else you work with that can work alongside you so you alternate?) Be creative. I agree with Tara about contacting your doctor. Meds can be the difference between continuing to work for a long, long time, and having to give it up. Good luck.

My acupuncturist has PsA. She hoops. Yes. Hula hoops. But she’s a two hoop spinner so she’s always using her hands to move the hoops. I posted a video about it on my blog. Like you she relies on fine motor movements for her livelihood. She swears by it. I offer no comment!

Thanks for your comments everyone. Yes I will contact my doctor and rheumy on Monday. No I’m not on biologics - I am on my 3rd attempt on Mtx, if that fails I will be trying something else. I’m only newly diagnosed this year and still trying to find the right meds for me. I accept that it will take a while to get it right, as long as I show improvement at some stage I will be happy and feel like there is hope.

Hi Again Kelly,

I was not having success with the MTX so my Rheumy added Sulfasalazine. I have been off work for a while now and hope to be going back one day soon. My Rheumy and Doctor both feel there is something that will work to get me functioning again. My occupation is a very physical on a light day I have at least 30 flights of stairs, along with handling tie up lines 10 times daily and if the weather is bad then also Bow Lines. We are on an open vessel, that means bundling up for the elements and sometimes spending the day trying to dry out. Working on a ship is hard on the body, however I too love my job and hope to be able to do it for a few more years and then find an accommodation on the shore side. In order to be accommodated I will have to relocate.

Keep the faith, there is hope. Everyone is different and it take's time for these meds to work. I have had a hard time adjusting to the slow down and learning to be more patient. I have noticed some slight improvements in pain level and so far this week I haven't had any swelling in any joints yet, so that's a win :-) Good Luck <3

Thanks for sharing your experiences Tara and Laura, it’s so good to hear from others going through the same thing and still being opimistic… Most days I am very positive about it all and people are amazed at my optimism. But there are days when I get really down. Thanks girls :slight_smile:

May I suggest posting on the main board? You will get more response that way; not everyone read the blogs or does so intermittently.

Don’t lose hope yet. You haven’t gotten to biologics yet and that is only a matter of time. It’s hard to see the light at the end of the tunnel from where you are standing right now, but I promise there is one and I promise it isn’t a train. Once your disease is better managed things will look up.

I’m a nurse. Last October- November, I was right where you are now. I am still working, and I am still doing what I love.

Compression gloves can help. You might want to reach out to Stoney. She is the resident hand expert and has all sorts of aids that she uses for her hands. I don’t think she’ll mind that I volunteered her.

Thanks grumpy, appreciate the advice :slight_smile:

Hi, Yes don’t five up hope. I was diagnosed in April 2011 but had tendon issues for years and P since I was 12.
I work in a dialysis unit and cannulate patients fistulas all day everyday. As I’m counted as a senior needler I often have to needle difficult and extremely new fistulas for frightened patients new to dialysis. I need my hands to be as good as possible. In August 2011 my MCP joints on my thumbs and index fingers were so bad I had to go sick. I had started MTX the month before but as it takes some time to work was in constant pain. The Rheumatology nurses told me the first year could be the toughest until a drug regime to suit me was established. I spent 4 months off work and despaired that I would ever be able to dress myself again let alone work.

I got back to work just before Christmas that year and although I had another flare the following year and was off 3 months that time, I’m still working at the job I love…sure some days I do struggle but my hands can cope. To be honest I am relieved when other places besides my hands flare up :slight_smile:

My advice is to find a good hand therapist, my local OT department were, and still are fantastic and I followed the exercises and instructions to the letter, took my meds, eat good wholesome food and persevered.

Good luck x

Great to hear Louise :slight_smile: