Expectations and Acceptance

By andra

1 min read

I was diagnosed with guttate psoriasis at the age of five. Around 40, I was diagnosed with psoriatic arthritis. I managed it naturally until a year or two ago. I am now 55. They started me on methotrexate and I felt great! Unfortunately, my liver was not happy. I tried Humira, no help, and now Enbrel. The Enbrel has helped, but still not feeling wonderful. So many aches and pains come out of nowhere. Here one day and gone the next.

How good can I really expect to feel? Should I be completely pain-free? How can I accept that I can’t do the things I want to do? This is a very frustrating disease.

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Jill.Brodie Community Admin
Hi <inline-mention user-id="3274147" username="andra"/> , thank you so much for reaching out. I am so glad you felt comfortable to share with our community. This must be very challenging for you. I wish you could find a treatment that was helping you. While I hope our community members will chime in with their personal experiences, I wanted to share this article with you from one of our advocates. I hope this can help you. I can totally understand how frustrated you are. Please know that you are always welcome here to share or just to vent. Jill, Team Member <a href='https://psoriatic-arthritis.com/living/accepting-new-normal-tips-from-someone-still-struggling' target='_blank'>https://psoriatic-arthritis.com/living/accepting-new-normal-tips-from-someone-still-struggling/</a>
bmk1 Member
Hello andra, I have asked myself the same questions hundreds of times in the last 6 years. Will I get back to being me? Personally, I think not. PsA changed my life I went from a career driven mum of 2 to a woman who could barely get out of bed some days. But I didn’t and haven’t given in to this disease. It’s been tough, no two ways about it. You name it and I’ve had it, from rashes to crippling back ache and knees, ankles and feet that won’t work or too painful to stand on. I’ve been on and off methotrexate for years and I’m now back on it again with my 3rd biologic and I still take pain medication on a regular basis to get through the days. But medication is only halfway to managing PsA. I had to reconsider my lifestyle. I have changed my diet and became vegetarian, I consume minimal dairy, I walk at least 2 hours every day with the dog and I am back to work 3 days a week. I try to stress less, sleep as much as I can and take life as it comes. I’m slow and my life has become slow. I also had to get my family to adapt and they have which has made things that much easier. My advice to you - You can only do what you can and the days you’re not yourself, rest when you can, take it easier, if you can and most importantly ‘be kind to yourself’.
debra-lynne Member
My PsA was very sudden onset, about seven years ago. I thought I must have sprained my foot somehow. Couldn’t put weight on my right foot. Two weeks later it was both feet. We were in South America for a few months so I suffered through till we got back to Canada but expected the doctor to fix me up right as rain as soon as I got home, since I was healthy otherwise. Didn’t happen. Which was very distressing and depressing. It took a few months but I was finally diagnosed properly and I’ve been on Methotrexate ever since, happily with no side effects so far. I’m still grappling with pain that is always there and some days more debilitating than others. When I’m overtired or stressed I’m in more pain. But sometimes I’m worse for seemingly no reason at all. So I’ve learned to take one day at a time and be grateful for good days. I definitely can’t do what I used to but I can still do some of the activities I love. I enjoy nature walks on good days or beach combing. I also love to paint and find it so absorbing I can forget about pain for awhile. A few months ago my husband of fifty years died very suddenly so I haven’t been the same since. That really affected my PsA of course. But I have a wonderful family and large network of supportive friends who help me through each day. So much to be thankful for. And it’s Spring!! 💐
andra Member
Thank so much for your heartfelt words. Your story helps me to remember to be grateful for what I CAN do. I see you still have pain even on medication. I guess the meds are not a cure. Thank you again for your sweet words. I pray you have more good days than bad days. And YES, Spring is just around the corner...can’t wait!!! Melt snow melt!!!! 🌻
reham Member
Hello <inline-mention username="andra" user-id="3274147"/>. I have PsA too for 8 years now, 15 years as Psoriasis. I feel the same as you. I used Enbrel then Humira which I still using it. “Weekly” I tried methotrexate and as you said I felt great but unfortunately I developed a dry cough that continued for 3 months and stopped after stopping the methotrexate. Now I’m using Humira, Celebrex and ice packs. A lot of flare ups and pain.
Diane T Moderator & Contributor
<inline-mention username="andra" user-id="3274147"/> I hope you are doing well. Have you found anything that is helping you? I have had this disease for 59 years, so I understand your struggles. One day I can be pain-free, having a great day the next day I can't get out of bed. As a community, we are here if you need us anytime. Diane (Team Member)