I am new to the site. I was diagnosed with suspected Rheumatoid arthritis in may this year and on my latest check up last week my rheumatologist confirmed that its actually PsA. I had never even heard of it until he said it! I just thought I had arthritis and bad skin- 2 separate issues. My family and friends have always regarded me as a bit of a drama queen because I always seem to have some ailment or pain. In some ways its a relief to know that I'm not imagining it all.
I spent most of last year in and out of hospital with a sick baby. He is thankfully well now and thriving, but as a result I haven't had a nights sleep in almost 3 years (between pregnancy and baby). He's almost 2 now and he still doesn't sleep through. I can't blame him with all he's been through, but it does make the pain so much worse when I haven't slept.
I feel like I suddenly need to be an expert on all this PsA stuff and the meds are making me drowsy so I'm in no position to be learning anything new. I'm hoping it will all start to feel normal and I will gets used to the meds etc. I'm on methotrexate, prednisone, celebrex, tramaset and trepoline. Thats on top of the antidepressants I take as I have suffered with depression for years now.
Sorry to sound so negative, I promise I'm not a miserable person. Just having a bit of sekf pity today.
Hi KGB and welcome. You are totally allowed to have a bit of self pity. Sorry to hear about your troubles with your little one on top of your new diagnosis. You will find lots of us had similar stories before diagnosis so we fully understand.
It sounds like you have a good Rheumy who hasn't mucked about getting you onto meds.
I have found the folk here to be wonderful and supportive and definitely a great place to get it all off your chest.
I know exactly where you are coming from. I have a sick little boy who is 6 now. He was born very early and has a lot on medical problems aswell as learning disabilities. I was diagnosed with fibro M.E and PsA the same year he was born. Its very easy to become overwhelmed with all the questions you have aswell as all the questions everyone expects you to have answers to. My best advice to you, as hard as it will be, is to take each day as it comes. Take in what you can and try not to wear yourself out worrying about the what ifs.
it will become normal ( which i found very sad) but it will and you will need support and everyone here has been amazing when i have had a bit of a dip and I’m sure you will find the answers you are looking for.
it can feel very lonely at the start but you have come to the right place. Your not alone, if you ever want to chat pm me anytime
i really hope your feeling better soon, and remember you will learn to live with this the same as you learned to live with a sick little one. It might not be perfect but you always find a way through. Xxx
I am so happy that I found this group and signed up! Your kind words have done so much to lift my spirits already. Thank-you for taking the time to send them xxx
Hi KBG! It's okay to have a bit of a pity party. But as a mom, you know that you can't stay there too long. Welcome to the group! It sounds like you've had a rough go with your little one, so it's good to hear that things have stabilized a bit.
You listed off your meds. Prednisone is not a long term med. It sounds to me like your disease is not under good control. You're seeing a rheumatologist, but this is something that I would talk with him about, and possibly seek a second opinion. If you are needing prednisone, and tramacet, it sounds like your treatment plan is lacking. Neither one of those will slow down the disease progression, and neither will the celebrex.
You're in a tough spot right now, but as your treatment and control improves, things will settle down. In the meantime, you may want to take a look at the newbies section.
Thanks for the advice. My rheumatologist has said that the prednisone is short term, until its under control, and the celebrex and tramaset I only take when I need them. But no, its definitely not under control yet. I had a good period a coupl od months ago but then I got a bad bout of bronchitis and my GP put me on a higher dose of cortisone which caused a flare up when I came off it. The main trouble at the moment is my rib joints. Rheumy says they were aggravated by all the coughing and now they are inflamed, hence the tramaset.
Stoney said:
Hi KBG! It's okay to have a bit of a pity party. But as a mom, you know that you can't stay there too long. Welcome to the group! It sounds like you've had a rough go with your little one, so it's good to hear that things have stabilized a bit.
You listed off your meds. Prednisone is not a long term med. It sounds to me like your disease is not under good control. You're seeing a rheumatologist, but this is something that I would talk with him about, and possibly seek a second opinion. If you are needing prednisone, and tramacet, it sounds like your treatment plan is lacking. Neither one of those will slow down the disease progression, and neither will the celebrex.
You're in a tough spot right now, but as your treatment and control improves, things will settle down. In the meantime, you may want to take a look at the newbies section.
I sent you a private message, but just want you to know that it WILL get easier. You'll find a "new normal" and learn how to manage symptoms. Hang in there.