For those of you new to a PSA diagnosis, my sincere wishes that it goes easy on you, and you manage it with much success.
I am closing in on a year after a tough start. Couldn’t walk, use my hands, etc. I’m happy to say that after diet changes, treatment with NSAIDs and Enbrel, I am feeling really good. Built an indoor sauna today with no help, walking many miles per day, coaching little league again, all good stuff.
So don’t get caught up too much with the frequent negativity on this board. It can sometimes get you very down if you visit here too often. There’s some good pockets of info on medications, etc, but don’t come here looking for frequent success stories. You won’t find too many.
Remember, most folks with PSA get on with their condition and live decent, productive lives. Hang in there…it gets better.
If you’re interested, there are other blogs you can join (The Mighty) that are much more uplifting. Note - I am not affiliated but find that site much more encouraging.
@Robfbme, it’s true that there aren’t a ton of success stories on this board. It’s the nature of a support group that when people are doing well, they will often leave. And people who aren’t struggling with their condition won’t even find a support group like this, because again, there’s no need.
I initially sought out a support group when I was needing to start a DMARD that had a bigger side effect profile than plaquenil, and have stayed on for a number of reasons. My husband is an example of somebody who has mild PsA and doesn’t need a support group or additional information. But lots of people do need support and additional information. They come and go as needed.
I do get on The Mighty, but as you point out, it’s a blog, not a support group. So if one is looking for inspirational stories, or stories of how people are living successfully with a variety of diseases, then it’s a great website. But it’s goal is not a support group, but a blog.
Our goal here is patients helping each other. If it’s not helping you, I’m sorry.
But I can tell you as a newbie, I came here looking for help and inspiration when I needed it most, and it was quite the opposite. Just a lot of doom and gloom. All and all, the vibe of this site depresses me, and I will be unsubscribing as of this post.
To those new here, take this for what it’s worth - don’t linger too much on this site. It might bring you down. Get on with your life the best you can, surround yourself with positivity, and by all means, don’t take medical advice from the blogosphere. Be your own advocate. Get your condition under control, take your meds as prescribed, and enjoy your life as much as you can!
Gosh. My experience of this forum was and is the complete opposite. It was a mine of education and information and just sense. And loads of members made me laugh out loud on my worst days which was quite a feat, I can tell you. It stopped me being stupid and helped me move forward in such a positive way. I got all the hope and inspiration you said you were looking for. But I also got a whacking great load of reality too which was so essential, that so helped me get up off the floor emotionally and get on positively. It helped me find a decent doctor and get on decent meds and just get on. Most of all it helped me understand this disease medically and that understanding and knowledge was and is its very best gift.
It taught me to be my own best advocate, to get my condition under control, to take my meds as prescribed and to enjoy my life as best as I can. It still does that.
That is exactly the message you’ll see here again and again if you take a good look.
Many people here are still searching for a treatment regime that is right for them and which will allow them to get their lives back on track. Others have severe disease and come here when things are particularly tough. We often remind people that they will see a bias towards the most difficult aspects of PsA on account of the fact that folk who are doing particularly well don’t usually post on forums.
We take each others’ troubles seriously here and rejoice in each others’ successes. Humour, friendship and support abound on this forum. Where you see negativity I see constructive advice and encouragement. You will find what are in effect, inspirational stories but all too often sites dedicated to that particular genre fail to often any solid information or fellow-feeling.
Incidentally, my story is that I started off with severe disease, unable to stay awake and also unable to walk or use my left arm. The change over the years has been dramatic and I’m very happy with how things have turned out. Biologics made a huge difference and attitude may well have helped too. I often mention this here.
When exactly did you post asking for help and inspiration Rob? Sorry if I missed it.
Though both are pretty quiet. Seems like folks dealing with the disease either get things in check and move on with life or actually seek out support and experience of others at the same point they are. We are always thankful for those who have things under control that stay around. One thing I would have told Robfbme before he moved on is that the only way to get support is to give support. Since may he only created 5 topics (about himself,) and posted 9 times. Not much giving there
Hey y’all. I’m fairly New here still. I don’t agree with @Robfbme at all. Idk what he\she expected. But all I’ve encountered has been encouraging, informative, and inspiring! My lowest days I get on the forum and read, read, read. Not everyone has a success story. My story isn’t but it’s early yet. But the encouragement abounds! I don’t know if I’d be doing so well mentally now without this God send forum!
That is so great to hear AngieB! I know in my earliest time (after onset but pre-diagnosis), I was a lurker and didn’t post - and I found everything pretty scary. Not primarily because of this forum, but because my Dad had arthritis and I associated how he lived his life and who he was (grumpy and sometimes downright abusive), with the arthritis. I didn’t want that life.
It was the people here who gave me the encouragement that it didn’t have to be that way for me, and with some other issues and pretty severe depression going on, this forum literally saved my life. Nowadays like Sybil, I am one of the success stories, and I hang out here a bit to try to give back. I’m so glad to hear it’s helping you
I have reflected on this post throughout the day. What stands out from the comments by @Robfbme is that different things help different people and different people need different things. We all need to navigate our own journey through life and through this condition. What one person might find unhelpful or a downer another might find educational, reassuring, validating, inspiring. There is no one ‘right’ path. @Robfbme I hope you have found what you need from the other sites you have mentioned and all the best for the future.
I personally have found this site far from depressing. My PsA is much better since being on Humira, my overall ‘self’ is much better having experienced the support of this group, my work colleagues, and my friends and family. This group has been a valuable part of my journey, but that’s my journey. The standout aspect of this group is the respect! By and large the moderators post in a way that reflects and respects the diversity of our journeys, without preaching. I have very much valued this, the willingness of others to share their ups and downs, and the credible knowledge shared.
To all new users, I encourage you to trust yourself in navigating your journey and finding the support groups, blogs, meds and friendships that help you. If this group helps, then that’s great, if it doesn’t then I hope you find something that does.
I fully agree with you, @Poo_therapy. I honestly don’t know where I’d be had I not been accepted into this group in 2014. I was at my wits end not knowing what meds to trust and needing the “push” from some understanding people on this forum to accept treatment.
I’ve never checked out The Mighty. Sounds like it has great success stories, but for me the interaction between members here and the encouragement and advice I get and give has helped me tremendously.
Yup, that’s how I feel too … and I mean Stoney, Kris, MacMac, GrandmaJ, Jen, tnt, Sybil, and AngieB.
I know when I came here back in 2011, I was sick, depressed, scared out of my skin, in pain and if I had encountered a series of rosy success stories, I’d have … HURLED and walked. Well OK, in my case I would have limped. Instead I met real people who were going through similar things to what I was, or had been where I found myself. There were those who’d advocated for themselves and were making progress. Then there were the new friends who encouraged me to learn as much as possible about this wretched disease and be my own advocate. I took up that challenge and today my life is one whole lot better for it, not even mentioning the wonderful friends I’ve made along the way.
I’m sorry that Rob decided to do a hit 'n run. Then again, we can’t expect to be all things to all folks. I hope @Robfbme finds the support he needs.
Meanwhile, it’s been nice to hear everyone’s reflections on what this community has meant to them. What an awesome band of friends we are.
This board gave me the push to ask my rheumy about going off MTX and moving to injecting Humira every ten days.
When my rheumy NP prescribed Sulfasalazine in combination with Humira, I came here to read first. I’ve been on Sulfasalazine six weeks and so far, so good. I’ve noticed a distinct change in my feet at least.
Yes, the disease has advanced but the meds I’m on have slowed it down. I’m working and living my life, albeit with a hitch in my get-along and two bum shoulders.
I didn’t notice doom and gloom from you folks. I saw a whole bunch of honesty and support from folks walking a similar path to mine.
I’m better for having found this board. Speaking of which, I’m late in taking the day’s first dose of Sulfasalazine.
All I can say is that I have found this site a fountain of information and received a very warm welcome.
Whenever there is a change in meds or my condition I turn to this site first to see how other people are responding to it.
So, to al newbies, a very big welcome and I hope that you all get as much inspiration out of it as I did.
I have nothing but respect and admiration for the work done by those who contribute to this site! I am one of the many who found this site during a very dark time, facing a disease I had never even heard of! I got the knowledge I needed, from those who had asked the same questions. I got support, sympathy and humour, and, above all, the sense that the worst would pass, and my life - albeit with a “new normal” - could be a good one.
My experience of pain fear and confusion found an unexpected outlet in reading about fellow sufferers’ problems and solutions. Thanks to this site I found support in tough spots and solutions which have dramatically improved my overall heath and psychological status.I honestly do not know how well I would have coped without it. Sharing what is shared on this subject is priceless. Have a nice day,
Even though discussion of problems and trials are not always sunny I found great comfort in knowing others have similar problems. I figure it has something to do with fellowship in suffering. Not that I hope others suffer. However, it is not all bad and it is not all rainbows and unicorns. I may side a bit with realism and may focus on that some to. It is real information that I find incredibly helpful.
I agree with you, @Seenie! I mean about hurling and limping away if all we read here were cheesy happy stories. I’m sorry, but I like the realistic stuff—life isn’t all a bowl of cherries and it’s annoying when people can’t be open and discuss the shi**y things, too.
Yes, it’s great to be positive, and there is a lot of positive feedback here! Chronic disease is depressing, and, unfortunately for people who can’t find the right meds and treatment, theirs is the most depressing! I’m one of the lucky ones who has good results from Enbrel, and I’ve touted that for almost 5 years now.
I’ll stick with LWPsA—thanks everyone for putting up with me!
