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Living with Psoriatic Arthritis (PsA)

Help Me, I Think I'm Falling


#1

As I sit here, I am just so glad to have found a community of people (not glad you are going through the things I am going through) who just might really understand what I am going through, and KNOW the pain that I am talking about. The pain that exists even though you are not moving a muscle. My journey has been a very long one, and I really think I just stayed busy enough to not pay attention to it for quite some time, but once I was unable to stay busy, that's when things took a real turn for the worse.

So, I think my first flare happened in 2009 - and it happened in an ankle that I had previously broken. But I had not had any problems whatsoever with this ankle since 1987 and in fact I had been walking about 2 1/2 miles every day without fail in great shape, on a great diet - and then BAM - I broke out in this awful psoriatic patch on that ankle that went really deep, and my ankle just went to 'crap', meaning, it felt out of whack, I couldn't walk on it, it felt inflamed, pain constant, it was bad. And I tried to walk it out, etc. but after a couple of months I kind of panicked, went to an orthopedic surgeon, and of course right away he wanted to fuse my ankle because he said it was 'bone on bone'. Well, it may have been somewhat arthritic because of the previous fracture, but my ankle had been just fine a couple of months previously. I should have listened to my gut, but I didn't. I went ahead and had that ankle fused, which changed my whole life. After it was fused, I couldn't bear weight for 12 weeks, then another 6 weeks of light weight bearing, and when all was said and done, this fusion just changed and modified all kinds of things that I was able to do, meaning I could not squat, get up out of a chair, just lots of things I could not do any more without modifications. We don't realize how much we depend upon a joint until that mobile joint is lost. I think I probably could have done without having that ankle fused, I'm pretty sure it was just a serious flare up, looking back on the whole thing now, and that really sucks.

So after that fusion, things just went from there to my right knee, huge flare, connective tissue - joint space effusion, the whole nine yards, the flare lasted around 6 months - then to my left knee some time after - this has gone back and forth between both knees over the last 4 or 5 years and as I sit here right now I am in an intense flare with my right knee and in unbearable pain. Even being checked for a blood clot. What really got me worried though, was about 2-3 years ago I started experiencing the full-body type of flares, where it felt like my whole spine all the way down to my toes was affected. Literally like the back of my spine was in a vice - and I found it very difficult to walk or do any kind of activity. These would come and go though over the course of 2-3 days, not months. These were more spondylitis flares.

I've had blood work done and I am HLA-B27 positive, a year and a half ago, I was ANA positive, RNP positive CRP was high, among a few other issues, and had the same tests done just a couple weeks ago, and these same tests were all negative, so this autoimmune crap is just so cunning. I did however finally get a diagnosis of psoriatic arthritis and have been started on Humira. I just came to my end, I asked the provider to start me on a biologic to see if it is in fact inflammatory in nature, and I just took my second injection of Humira today. I'm hoping for a good outcome, but I am not guaranteed anything.

So grateful for the patients and people who put up their stories, because if they were not up on the internet, I would definitely have thought I was losing my mind with all the pain I was going through for no real known reason. My family has wondered what the heck is going on with me. I can't get out of bed, can't really function too well. I am reaching out and asking for the help I need though, and I am hoping that I get it. Thanks for listening everyone.


#2

hey there,

dump it all out,go for it.Im sitting here reading this remembering 2009 as thats when it got bad for me and funnily enough( not really funny!) my feet were the start,and still remaining !! source of my pain from day one.just hang in there,I usually feel my worst emotionally when my wife has to help me out of the bath and dry me......tomorrow will be better


#3

Congratulations on starting humira and taking your disease by the reins! I am also about 4 months into humira and have had slow but steady results. I had the best day of my PSA life the day after my first dose but since then the results have not been as obvious but I do see subtle changes which is good. I am sorry things have been so hard for you but hang in there, keep posting and remember you are not alone in this battle!