I’m new here but looking some advice please.
I was diagnosed a year ago when my daughter was 1.5yrs old but had been suffering symptoms from a few months after she was born. Was initially given a steroid injection (took allergic reaction to it so advised I probably wouldn’t be given it again) and sulfasalazine as we were trying for a second baby and sulfasalazine is safer. Took a few months trying to convince and actually got pregnant the month I was off the medication due to an infection. Decided to not take medication through pregnancy to be on safe side and thankfully symptoms weren’t too bad thanks to the rush of hormones etc. Was warned I would flare after the birth but had planned to go back on the sulfasalazine.
I had my baby boy in Feb and the first 2 weeks were grand then it started to get sore. Though thanks to COVID-19 I’m reluctant to go back on sulfasalazine as it lowers the immune system and naturally I don’t want to catch it. Baby is now 11 weeks old and I’m practically crippled. I have severe pain in my feet, hips and elbows and Dactylitis in my toes and several fingers.
Doctors don’t want me back on the DMARDs so had prescribed naproxen and 30/500 co codamol. Still in stupid amounts of pain so they switched me to celecoxib and the co codamol but I’m still having a really bad flare which is causing massive issues when trying to look after my toddler and newborn. My husband is a key worker so out the majority of the day and obviously can’t have other family members help as they are all isolating too!
Sorry for the rant but I’m just incredibly sore and down in the dumps at the minute as things are so shit. I know there’s nothing u guys can do but I just needed to vent and I’m hoping u folks will understand. Thanks for listening
So sorry to hear this. Not exactly the same experience but I have been flaring for 15mths since my son was born.
I wrote about it here: https://joelvsarthritis.co.uk/pain-and-parenting/ I hope it gives you some small comfort that you're not alone.
Coincidentally, I too was on sulfasalazine for two years when we were trying to conceive. It took a break from that for other reasons that led to my wife falling pregnant.
My flare was predominately caused by a treatment change but without doubt the stress of becoming a new parent, lack of sleep etc. has played a big part.
Really sorry to hear of your difficulties. Its especially hard at the moment with so many routine services being suspended.
Take care,
Joel.
Thanks for taking the time to reply and sorry u have been flaring for so long. I read ur blog and it helped me realise I need to stop focusing on the pain and to just do what I can to manage it and move on to appreciate my time with my kids. I’m sure the lack of sleep thanks to a newborn is probably making things worse for me too plus I get quite stiff sitting about but with two kids in isolation there’s not much else to do but sit on the floor and play with my toddler lol oh and your little boy is adorable by the way!
That’s strange about the sulfasalazine, it’s supposed to be ok for conceiving and pregnancy but I definitely blame it for taking so long for us to conceive my son lol
I’ve had all my rheumatology appointments cancelled so it’s hard to get good advice as my doctors think differently to my consultant so it’s hard to know what to do. I just know that both don’t want me back on DMARDs with a weakened immune system but can’t agree on how else to treat me. Hopefully this COVID stuff calms down soon and things can start to go back to normal!
Yeah, it doesn't mean that it's ok and shouldn't be something you settle for but having something to focus on helps. I was so miserable about the return of my disease and the pain that I missed out of precious moments in those first 6mths.
I've always been able to overcome my challenges so guess I figured that accepting it was defeat or giving up. Of course it wasn't. I've just reached a point with my disease where its progressing and the sooner I accept it, the easier life gets. Doesn't mean I'm happy about it though. 😉
Isolation is a unique challenge. I've certainly got worse being confined to the house. With shielding, I'm particularly struggling with not even being able to go for a walk. I find it helps to focus on my family and remember the risk I'm at if I stray.
It's sad but I've made a little chart of all the things I've taught him whilst he's been stuck here with me, no nursery etc. So words, walking, feeding himself etc. When things are miserable, it's a nice reminder of how lucky I was to get this time with him.
Yeah I suppose if we get annoyed and dwell on it we will just become miserable and that doesn’t help anyone!
Not being able to go out for a simple walk is definitely hard, especially with a toddler who loves to be outdoors lol
Aww that actually sounds like a lovely thing to do, might nab that idea and do it with my two :)
Posted Tue 28 Apr 2020 12.31 by JoelVsArthritis
You're welcome. Stay strong and be safe and shout if you ever need to talk/vent.
Joel.
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