Hello forum 😊

[Nicole2017]

Hello,
I’m new to the forum. I was diagnosed with PsA about 3 months ago, but my symptoms started in 2015 when It was suspected that I lupus. I was muddling along fine with my medication but about 6 months ago my symptoms started to get worse, so my medication was changed. I currently live life by the ‘spoons’ analogy. Today I’ve nearly used up all my spoons doing the ironing and getting my kids uniforms etc ready for school next week. I’m sitting on the floor of my daughter’s bedroom too exhausted to get up, so I decided to say hello to the forum.

It would be great to know how you all manage day to day life. Mine is hit and miss at the moment. I am back to work from next Monday and I’m worried how I am going to get through my work days, especially as my condition has worsened over the summer.

Any pointers would be really appreciated.

Thanks for reading.

Nicole2017

[Poo_therapy]

Welcome Nicole,

You should find a wealth of information on here and a huge wealth of support too. I’m in Kent as well. Any chance you can work from home when needed? Sometimes that can make so much difference. But often many jobs can’t manage that as in it’s not very possible. What do your employers say? I hope they’re being supportive.

But basically managing day to day as I’m sure you already know is just about pacing yourself. Some days we can achieve lots and others we just can’t or we just don’t have enough spoons that day. Often just finding the right medication or combination really does help - I’m yet to find mine (other than steroids) but there’s many on here who do exceptionally well. I continue to plod my way through UK NICE protocol which as you probably also know takes some time. Where are you at on all that?

Do let us know but the very best of luck for Monday in the meantime.

[Nicole2017]

Thanks for replying.

I thought I was doing well and hydroxychloroquine was working fine for the past 18 months. Then out of the blue my joint pain ramped up. Luckily I had a rheumatology appointment and was placed on Arcoxia and asked by my rheumatologist to stop the hydroxychloroquine. Big mistake my pain went from 10 to 100 in 5 days. So I placed myself back on the hydroxychloroquine and made another appointment to see my rheumatologist. He then agreed it was time for methotrexate and so I had my first dose last Thursday and I’ve just started having side effects, painful, bleeding gums, and generally a sore mouth with an ulcer forming on my gum around a back molar. If I’m honest I’m feeling exhausted and really not prepared both physically or mentally for returning to work. So far I have had a very understanding line manager and have been able to work from home at times. But it’s the getting up 2 hours before leaving home (5am) that I find difficult. It takes me a long time to get ready and out the door for 7am. Then there’s the commute (drive via motorway). By the time I get into the office I’m knackered. I think or I should say I know that rethinking work hours is necessary. But my finances will play a big part in making a job decision, as unfortunately I am not in a position to down tools and begin early retirement.

It would be great to know how other PsA sufferers manage with working.

Many thanks

Nicole2017

[Seenie]

Hey Nicole, and welcome.

There are lots of really great people here and plenty of information too. Have you had a chance to look at our Newbies’ Guide yet? There’s a link to it on the left hand side of the home page.

You’re in what we call “The Gap” around here: that exceptionally difficult time when you’re reeling from the diagnosis, and looking for a treatment that works. Most of us have been there, and some of us have spent quite a long time on the quest for something that works. But take heart: almost everyone gets through dreaded gap, and comes out the other end feeling a lot better that they were. I know it’s hard to believe right now, but it’s true.

So you’re on MTX now. Does your rheumatologist have you on folic acid as well? I think you should probably ring the nurse and tell her about your mouth sores: if you are on folic acid, they may want to up the dose. If not, they may want you to start taking it. Folic acid (and drinking plenty of water) does help control the side effects of MTX.

I think you know that pacing is essential for people like us, but it’s much easier said than done. And it takes a lot of trial and error to get it right. Even then, it’s a moving target. The trick is to pace very consciously and deliberately. Alternate physical tasks with mental work. Alternate busy days with less busy. Say no. No to others as well as yourself. You need to get through the gap, and when you do, things will get easier.

Just wondering about something you said: why does it take you two hours to get ready to leave the house? Is it because you’re feeling the way I used to: tired, aching, stiff and very slow and sluggish for the first two hours of every day? If so, please be sure to tell your rheumatologist about that: s/he may decide to give you a short term rescue remedy.

Working with PsA was very difficult, I’ll make no bones about that. Everything I did required an awful lot of self-talk and steely determination. The thing was, though, that I was undiagnosed at the time: my doc didn’t think there was much wrong with me that a healthy diet and exercise couldn’t cure. Finally, I was too tired and too sore (and I thought too old) and I retired from a career I loved. Several miserable years later, I was diagnosed. These days, out of the gap and on really effective treatment, I feel better and have more energy than I did fifteen years ago. And still, I need to be very careful about pacing myself. But life is good again. And it will be for you too.

[Nicole2017]

Thank you for your very kind words of reassurance and wisdom Seenie.

It does feel like a never ending journey at the moment. 2 years of hit and miss treatment seems like a very long time. I am on folic acid and like most of my treatment so far, I am often started on a half dose and a few months down the line it’s usually increased.

With regards to waking up in the morning, it’s the soreness and stiffness. Some days I have to peel my fingers open, like a banana and massage my knees before I can stand up. This has been going on for quite some time. I have mentioned it to my rheumatologist many times.

I am hanging in there when it comes to working, but at the same time looking out for a job less stressful and demanding.

Once again, thank you for your kind words. I am truly looking forward to finishing the gap and coming out the other side.

With best wishes,

Nicole2017

[Grandma_J]

@Nicole2017

some days I have to peel my fingers open, like a banana and massage my knees before I can stand up

Hi Nicole, and welcome to the group!
Oh how I remember those days and the stiffness!!!
It used to feel like my fingers were glued together and the glue was nearly dried–I’d stretch and stretch them constantly throughout the day…and the back stiffness and other tendonitis! Yuck!
This sounds crazy–what I used to do in the morning to wake up my body–step into the shower when the water was still running cold–for me, it helped!!! It was about 20 seconds of relief! Ice packs throughout the day helped my back and tendonitis temporarily. Have you tried using them?
Getting on a biologic, Enbrel, finally took all that stiffness away. Oh, nothing’s perfect, when there’s damage, there’s lingering pain. But, I’m glad I don’t have the stiffness and fatigue like I did when my PsA was active.
Good luck…hang in there!

[Nicole2017]

Thank you Grandma_J.

This may sound really odd, but it’s great to hear that someone else has had the same issues. I usually have an extremely hot shower first thing in the morning to thaw out (like a frozen chicken), but I am happy to try the cold water treatment. Anything that works is worth a try.

Best wishes,

Nicole 2017

[Seenie]

@Nicole2017

Some days I have to peel my fingers open, like a banana and massage my knees before I can stand up. This has been going on for quite some time.

I remember my early mornings too: I had a small coffee maker on the bedside table, and I would sip my first cuppa in bed and slowly get my limbs moving and stretched. Then the shower. Warm/hot water, just let it rain on me. I couldn’t raise my arms to shampoo, so I’d bow my head, and with my elbows at my side, I could just manage to reach my scalp. Then sit on the bed, wrapped in my towel and more gentle movement. Yes, it took me a couple of hours too. And at least an hour of that time should have been sleep time. It’s nasty, isn’t it?

OK, so your rheum knows. But we understand.

[Grandma_J]

Not odd at all…it IS comforting to know people understand what you’re going through. And even more comforting to know there’s hope of relief for those stiff joints!
The reason I did the cold blast in the shower was it woke up my tired, achy body better than the heat did–heat is very soothing and actually would make me continue to feel tired. Of course, the rest of my shower would be hot, but now that I’m thinking about it, sometimes I ran some cool water on me just before I finished.
Oh. Seenie, I remember, too, how hard it was to do my hair–blow drying and using the curling iron! I still don’t like doing that “chore” but at least I can do it without my arms getting so tired and achy.
Things can and will get better.