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A Tangled Web of Psoriatic Symptoms

I just received my diagnosis last week and I’m still reeling. I don’t know what to do or how to move forward. For me, it took a while to get a diagnosis because of two things: I’ve always had problems. When I was young they called it osteochondritis desiccants and I had a really bad case of Lyme disease wherein the bacteria had made its way into my nervous system.

It has always been hard to tell what symptoms were caused by what. I am actually amazed at how quickly I’ve gone downhill. Two months ago, I was going for long walks, five miles a day. Now, I can barely shuffle along.

Feeling like a burden

My rheumatologist has submitted to my insurance company a request to start me on Simponi Aria. I am so lost. I am sad, confused, and angry. My friends and family have been amazing. While they are trying their best to offer comfort and support, I feel like such a burden.

I met someone today who has been living with psoriatic arthritis for 10 years. It helped to talk to her because she completely understood everything I said. So much of what she had to say resonated with me.

Looking for support

I am coming here for support, guidance, and advice. All the kind of stuff that only someone who’s been through it can understand. What do I do now? Where do I go from here? How do I get back to living? How can I be proactive about my treatment? What kinda questions do I need to ask?

  1. Hang in there. Just joined this page. I have been taking Methatrexate for several years and am now down to half a tablet once a week. It is keeping my spots and most of my pain away. 🙂

    1. thank you so much.

  2. Yes... Hang in there! I am on my 4th treatment and I think this one is working. It will take some patience and yes, you will have some tough times but you will find something that helps.

    I have never been much of a "health nut" but I can tell you that losing weight has helped me as much as anything. Eating right and being as active as the condition allows. As part of that I am also learning that when the condition dictates, I take it easy and chill.

    So... bottom line, it'll be OK.

    1. i’ve been trying so hard to lose some weight. i’m actually down 35 pounds from what i weighed in july. but it’s getting harder. i can’t go for long walks like i did when i started.

      and on the days when i’m feeling really bad, i turn to comfort food.

      but i have decided that the only way i have time to sit around feeling sorry for myself is if i MAKE the time to do it. so, forward we march. yes, it has slowed me down... but it doesn’t get to stop me.

      at least, that’s how i’m feeling today.

    2. Down 35 pounds!!! That is fantastic! You should celebrate with a cupcake and then set your shoulders and keep moving forward. My key to moving forward is to eat more often as long as it is anything with protein and fiber. While exercise is important, it can also be of detriment to people like us if applied too harshly or at the wrong time.

      I like what Lou Holtz (former Notre Dame coach) said... "Why run when you can walk, walk when you can stand or stand when you can sit?"

  3. Day at a time. I know how you feel. I was just diagnosed in Sept. It’s getting better for me but you have to be patient and be kind to yourself. Do more on days you feel better (just don’t overdo it or you’ll pay for it the next day) I know right now you’re thinking “How am I going to live my life when I can barely get to the bathroom from my bed” ... it gets better. I’m working part time with a lightened workload, but I had a noticeable improvement last week when my Dr. changed my NSAID, so I think I’m slowly going to be ready to increase my workload, but I’ll give it another week to make sure this is a new normal for me. Don’t hesitate to check in with your Dr, I should have done so sooner and maybe given this change of med sooner too. Don’t hesitate to use assistive devices. I used a chair in the shower because standing hurt so bad. I had a flight to take and asked for assistance because gates can be far away from one another, so they took me in a wheelchair (I would have cried if I had tried to walk it in my condition) I also decided to be straight with my work/manager about my condition and it was one of the best things I did because they worked with me to find a solution that would still let me be at work with a manageable schedule and workload. Don’t feel bad about resting... your body needs it, I found aromatherapy very relaxing... along with frequent epsom salt baths (and I like adding Eucalyptus oil to the bath...I think it helps my psoriasis on my scalp too when I’d soak in it) Hang in there!

    1. Just wanted to say I hear you. I was diagnosed last month after 15 months of trying to find out what was going on. I use to run everyday, now struggle to walk. But I do have good days, almost 'normal'. Like you, I'm trying to find what works. I have had some glimpses of hope, days with no pain, no issues. If anything, PsA makes me really appreciate the simple things in life. And reading about others experiences on this forum help too 😀. Congrats on the weight loss, no easy task. Wish you all the best. Take care.

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