HOW PSA AFFECTS MY WALKING AND MOBILITY

By CommunityMember432

1 min read

For over 20 years, I have been diagnosed with fibromyalgia. Before that, they called it chronic fatigue. After years of doctors, pills, exercises, much research, and prayers, I finally found a rheumatologist that actually listens to me! IT WAS A MIRACLE!!! I drew a human body figure (3 pieces of blank paper taped together) and I labeled every part of my body that had symptoms. SO MANY!!! I cried uncontrollably when I finished.

Anyway, my very concerning issue right now is my walking and mobility. You see, supposedly, I also have diabetic neuropathy. My feet and ankles and my legs and knees swell, ache, itch, burn and I feel like I'm walking on soft rocks in my shoes by the end of the day. I have recently used a four-prong cane, but it caused shoulder problems. Now I'm using an old rollator/walker. I'm a cashier by trade and I can sit at work. That doesn't help with my issues, but I manage. Gotta work. I often feel just a little "off," but thankfully I haven't had any falls. Each day, sometimes each minute, is a challenge. Finding new ways to do things and realizing that there are many things I just can't do anymore. I'm a prisoner in my own body with a life sentence!!!

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Jill.Brodie Community Admin
Hi <inline-mention username="CommunityMember432" user-id="4170936"/>, thank you for having the courage to share with us. I can hear how difficult this has been for you. I am so glad you found a rheumatologist who listened to you, although I understand how hard that was for you to have to label out all of your pain. It sounds like your feet are in excruciating pain. I am happy to hear you can sit at work and have a walker. Dealing with a chronic condition takes such a toll on the body and the mind. We understand and we are here for you!! You are not alone and I hope our community can help you. Jill, Team Member
Diane T Moderator & Contributor
Hello <inline-mention username="CommunityMember432" user-id="4170936"/> , I sure understand how you feel. It took me 25 years to get a proper diagnosis with PsA. It was so frustrating when doctors would say the pain was in my head. I'm with you I felt like I could run a marathon when I got a diagnosis. I actually felt relieved. Thanks so much for sharing your journey with us; it makes all of us feel we are not alone. I hope you get some relief soon. I waited tables for years and I can feel your pain. Remember you are not alone. Take care, Diane (Team Member)
rosah Member
 Hello Community Member 432. Parts of your story sound like we are living the same life. I have had Fibromyalgia for 48 years, diagnosed for 20. This thing I have going on now is NOT fibro. I have lived with that long enough to thoroughly understand how it feels in my body. I was also told I had Chronic fatigue syndrome before they decided it was fibromyalgia. Yet now if I dare mention PsA, the medical community turns and looks the other way. You said "I also have diabetic neuropathy. My feet and ankles and my legs and knees swell, ache, itch, burn and I feel like I'm walking on soft rocks in my shoes by the end of the day. " I say Ditto, except the rocks have turned to hard, sharp rocks and they are there at the beginning of the day as well. I can't get shoes on because my feet are so swollen. Now they say I have cellulitis. I have finished my second course of antibiotics and heavy duty water pills with no relief. I see the doctor again Monday so maybe..... She has finally found a rheumatologist to give me an appointment. It is in December, six months away. 
1. CommunityMember432 Member
 <inline-mention username="rosah" user-id="4247255"/> DEAR Rosah, Ask if the doctor has a cancellation list. They almost always do. That's how I finally got in. Doctors need to understand that we know OUR bodies ! How it feels, hurts, respond to pain. Even a hug can hurt !!! 😢 It seems like none of my other doctors want to diagnose anything except diabetes. They share a lot of the same symptoms. It's very hard even for me some days. I keep reading. Researching. Praying. Don't give up ! Best of luck to us all !!!
2. rosah Member
 <inline-mention username="CommunityMember432" user-id="4170936"/> , Thank you. That is a good suggestion.
rosah Member
Thank you Leanne. It gives me hope when I come here and find people who are actually living their lives again instead of just getting by. The kinship I feel with those who are feeling the same things I am gives me a chance to vent. Either way, it's a win win.
Lori.Foster Community Admin
We're so glad Leanne's article resonated with you and that this community helps you feel more optimistic, <inline-mention username="rosah" user-id="4247255"/>. So many people with PsA really are living their lives again. You might not see them on these forums as often because they usually come here only when they need support. Wishing you the very best. - Lori (Team Member)
Lori.Foster Community Admin
Hi <inline-mention username="CommunityMember432" user-id="4170936"/> . I am just checking in to see whether things have gotten any better for you. Are you taking any medications to slow the progression of your PsA? Is the rollator still helping? Thinking of you. - Lori (Team Member)