What can I expect?
So I’ve been treating my PSA since mid Sept. of last year... I’ve had it since around age 9 undiagnosed. Throughout my childhood I had pretty chronic lower back pain and my neck would flare up sometimes, sometimes an ankle, bit of stiffness in my hands. To me this was normal and I only used pain killers when the pain got so bad I felt like I was going to throw up.
Fast forward to early 2019 where it attacked my knee so bad I couldn’t straighten it, I suffered from planter f. for 3 years prior to that (initially crawling to the bathroom because I couldn’t put any pressure on my feet) and I still carried on with minimal pain killers and going to work most days. Then it hit the rest of my body to the point I could no longer dress myself and any further distance required me to use a wheelchair (hence the diagnosis finally) I felt stiff as petrified wood most days.
Fast forward to today after using methotrexate and a milder sulpha based drug, and I can dress myself and walk a longer distance without a wheel chair. I use a cane sometimes. I work 4 days a week (except now due to the virus) and my schedule has been lightened (all this was done because I was burning out and had brain fog something fierce on a full time schedule and my movement was very poor) My brain fog has pretty well lifted, my fingers still get stiff several times a week, planter f. plus infl. in Achilles’ tendons bugs me pretty well daily, neck/shoulder pain flares up a few times a week (although has been bad the last 5 days in a row - possibly due to weather), knee occasionally gets stiff or even sore, lower back pain mostly fine except for odd flare up, ribs and chest still feel pretty tender/swollen regularly...... so is this my new normal?? Or should I be pushing to feel better than this?
This is why I outlined all the pain I had in early life because I think I have a pretty high tolerance for pain (it’s the stiffness and swelling that bother me more than the pain I think) so when my Dr asks how I’m doing, I usually want to just say “fine” ... but maybe this isn’t fine, and maybe I’m supposed to be/feel better than this?
My specialist has noted that I’m supposed to try a stronger sulpha drug before my next appointment if I’m not “doing better” ... well technically I am better than the last time she’s seen me, because my brain fog lifted. Can I put up with the pain and stiffness I currently have? Sure (it’s been worse, this is much improved) But I don’t know how I’m supposed to feel and what I can expect to achieve with a disease that attacks your joints and is going to cause chronic pain and stiffness.
I hope this post made some kind of sense and that someone can give me some advice on this. Thanks for listening!
Hello
you raise an important question and one I've struggled with myself in recent years. What has helped me was having a conversation with my doctor, assuming yours is well educated and knowledgeable about the extent of your disease progression and damage. I asked my doctor for an open and honest conversation about expectations and what a realistic expectation would be. Because without knowing this, it is difficult to make educated decisions about medication choices and pain management options. After all, no one wants to change their plan, only to get worse instead of better, then look back with regret. It is very difficult to know if this is just your new normal, or if there was something out there that could make it better. However, I will say, that in your case, there is a whole world of medications out there that you didn't mention trying yet, particularly biologics. Biologic medications (such as Humira and Enbrel) have helped many, many people feel very close to "normal" in terms of expectations. Our site is filled with information on a list of biologic medications that grows almost daily. (You can use the search function in the upper left hand corner to check out more info about biologics.)
I know that personally, I'm of the mind that I'm going to push and push and try pretty much everything that I can to get even small pieces of my life back. As a mom to three young kids, I kind of feel like I owe them at least that. But where you find yourself in your journey is certainly tough because as patients with a chronic disease, there comes with it a certain level of acceptance for the "good" and "bad" days.
But what I can suggest to you, based on what you've shared is that I truly believe that in my opinion, there is probably room for improvement and given a discussion with your doctor, you shouldn't give up hope that you can continue to improve more.
I would also add that you might benefit from outlining specific parameters for improvement with your doctor. For example, my doctor looks at the amount of time it takes for me to relieve some of the stiffness in the morning as a parameter for how well my meds are working and if it is time to try something else. If it takes over 2 hours, then that's a sign that they aren't working. But if you come in with "goals" of what you would like your medicine to do for you, perhaps your doctor have give you a realistic picture for those goals. Does that make any sense at all? I sure hope so.
There are also a few articles on our site that might be helpful as well...
https://psoriatic-arthritis.com/living/as-good-as-it-gets/
https://psoriatic-arthritis.com/living/expectations/I'm sure others will chime in with their experiences soon as well too. We have a great community here and we are so happy that you are a part of it. Take each day, one at a time, and we will make it. Also, I guess I'd like to add that looking at the "big" picture is also helpful. Meaning are you moving at an upward trend or downward trend. I'm kind of a nerd about tracking my symptoms, but I find it helpful. Sending you gentle hugs today and everyday especially during this time of crisis in the world. -Leanne, Community Moderator
