Hello @Bass5481 , and welcome to the psoriatic arthritis patient support board. I’m glad you were able to find us. Many of our other members have also been diagnosed, and we’re all here to listen to you share your story and give you some insight from the patient’s point of view about your diagnosis.
Our latest posts are listed on the right of the home page, but there are also several categories you can browse on the left of the page. Although answering questions you might have about PsA is one of the reasons why we’re here, it’s also about your experiences and what you’d like to share with other patients.
Aside from being patients with PsA we’re also all humans with different interests, hobbies, and lives that don’t revolve around a diagnosis. One category I like to visit is the photos category, where members have shared their snapshots of their day and can post general updates on what they’ve been up to.
I saw from your profile that you’re a musician, and I’m guessing from your username that you play bass? I’d love to know what kind of music you like. I’m a musician myself, but when things get so busy that I haven’t been able to pick it up in months it’s still nice to listen to the songs I used to play when I’m feeling a little under the weather.
Hope that you’ve been doing (relatively) fine lately. Let me (or any member with a shield next to their name) know if you need any help getting started with our community! We’re happy to have you, and looking forward to hearing from you if you’re up to it.
Thanks for the kind message.
Yes- I’m predominantly a bass player but I also play guitar, keys, some drums, and produce and mix. I love all music and have played it all.
I found this site while researching psa. I was diagnosed a couple of years ago but decided to try to make lifestyle changes to address it instead of meds. Well that helped a tiny bit but I’m still hurting. I am confused by the whole thing and wanting to make sure it’s really what I have prior to taking meds for life. So I’ve been reading a lot and educating myself without getting obsessive. It’s a confusing diagnosis for sure.
Anyways- thanks for the nice note and I look forward to learning as I go here.
Slade
Wow, what an impressive arsenal! Definitely great to have a creative outlet, especially nowadays.
You’ll definitely find lots of other people here who have tried complementary therapy or lifestyle changes, but of course (as you probably know) it’s different for everyone. I think it’s good that you’re looking through all your options and educating yourself. Just like how it takes some time to find the right med treatment it might also be some trial and error for the lifestyle changes that help. Nevertheless, we’re all rooting for you to find the shoe that fits!
Welcome @Bass5481, you will find a wealth of real life knowledge as you poke around the topics. Please note that all questions are legitimate and the answers that you receive are from the heart, medically sound and filled with empathy from folks who really get it! (Or got it?) Are you seeing a rheumatologist yet? What sort of symptoms are most concerning? Currently I’m waiting for something to kick in and relieve crazy knee and foot pain…
Foot pain is at the top of list. Mid arch. Been dealing with it for years. Plantar was diagnosed forever but it’s a strange place for it. They then found that I have bilateral cysts in my cuneiform bone. Had one addressed and ankle rebuilt at the same time. But now it appears maybe not that at all. But yes- constant foot arch pain. And feeling like I’m walking with a rock in my shoe. Hips. Si. Low back. Shoulders. Knees.
For me I get “attacks”. Terrible knee pain out of nowhere. Then a week later it’s gone. Then it’s my si. Then gone. Then my shoulder. On and on. Hence my years of confusion.
Was a beast of an athlete and have been in the trades for ever. Pushed my body hard so I put it down to wear and tear. But now it’s constantly getting worse and more consistent.
Achilles hurt every time I stand up.
I could go on and on. Muscle spasms, frozen shoulder, blah blah blah. Does any of this ring a bell?
The hardest part for me is that it’s “always something”. Always injured. But I’m not injured. I’ll think the pain is so bad that I have to have torn something. Legitimate bad pain that my brain says means something is torn. A week later mostly gone. It’s like a massive inflammatory response. And everyone just thinks I’m nuts. Wife is irritated after all these years. “Always something”. And she’s right. But it’s not in my head. No chance. The pain is real. And bad. Then gone.
So I’m willing to try meds. Was prescribed enbrel two years ago but wanted to fox it on my own. I’ve given up on that now. Waiting to hear back from rheum and will hopefully give the biological a chance. But still confused and relatively skeptical about it all. Good times!
Am so glad you are considering medication as well as lifestyle techniques, have found relief from combo. Sympathize with frustration on others’ incomprehension of the disease. Hope you will soon find improvement , and lowering of inflammation. All the best,
As you know PsA is an autoimmune condition. Basically your immune system is now insane. So whenever it feels like it, it has a rampage around your body inflaming anything it pleases when it pleases. And that inflammation causes damage. Both the damage and the inflammation causes pain. And the mad rampaging of your immune system causes significant fatigue. It’s like the sort of temper tantrum a toddler can have, very irrational and very long.
Sadly if only life style changes could make it all better, then that’s all we would be doing. All the meds prescribed for this disease are ‘disease modifying’ which simply means they are attempting to get your immune system behaving more rationally. When you find one that works for you (that can be a journey for many of us) then all this nonsense inflammation calms down considerably. That stops potential damage occuring and life then gets a whole lot better. Another benefit is that you tend to be overall more well with a more normally functioning immune system too.
There’s a saying on here ‘fear the disease far, far more than you fear the meds’.
So ask any questions that occur. When I first joined this forum I was horrified by the meds we were supposed to take. However I can tell you five years on and five meds on, I’m doing significantly better now. Life has become so much better all round. So please have hope that things can get an awful lot better. Most of people’s ongoing issues come from the damage caused prior to finding a med that works for them.
Thanks for all the kind words. What a great spot you all have here!
I was ready about a year ago to try enbrel, then covid hit. Scared me to take a med that affects your immune system so I put it out of my mind. I understand slightly better now that it doesn’t shut down your entire immune system, just a targeted protein. That sets my mind at ease quite a bit.
I tested positive for Ana, as well as Hashimoto’s. But my thyroid numbers look really good. I’ve never had psoriasis (rash) but both my dad and grandpa did. They were both diagnosed with PMR but the dr thinks they were both misdiagnosed. They both have been on prednisone for years.
So- I’m still confused by the diagnosis but the symptoms fit, however a lot of symptoms cross over so it gets cloudy. More to follow and thanks again!
I am so glad that you are moving ahead with real treatment: as one who had undiagnosed PsA for oh, a couple of decades before getting a diagnosis, I’ve had my fair share of damage. Trust us. Get that disease of ours treated, with the most powerful treatment that your rheum is prepared to give you.
So glad you found us! And yes, we have a pretty good little hangout here. For many of us, being here has changed our lives. I consider myself to be one of the luckiest of those.
