It started with back pain.
This was near the end of September, maybe a week or two before I was set to spend a week in London. It was my thoracic vertebrae and this intense feeling that I needed to crack my back. The pain then spread to my entire upper back, so I went to urgent care, got muscle relaxers, and hoped that would be the end of it.
When my back pain still wasn’t better after coming home from London, I saw an orthopedist. X-rays were taken, spine looked fine. He ordered a prescription anti-inflammatory (celebrex), more muscle relaxers, and physical therapy.
Then, my hips started hurting. It was little things: standing up took longer, walking up and down stairs was difficult, and getting down on the floor to clean the litter boxes every night was painful. My IT band had been tight for a while now, and I was finding no relief from PT, heat therapy, and stretching.
I went to a different orthopedist (same practice, different specialty). More X-rays, no hip issues. He gave me a steroid shot in both hips because perhaps this was a simple case of hip bursitis. The steroid shot helped for a day or two, and then I was back to being in pain. He also prescribed a high dose of meloxicam as well as more physical therapy.
Still, there was no relief. My hips still hurt. My IT band was still incredibly tight. And I started noticing that I was having a lot of shoulder pain and achiness. I chalked it up to the hip pain. Maybe it was the way I was bracing myself when I sat down or stood up, and that was causing stress to my shoulders.
And then I saw the commercial.
This was mid-December. I was watching the Survivor finale with my mom, and we watched a commercial that said something to the effect of, “Do you have psoriasis? Are you experiencing joint pain? You could have psoriatic arthritis!”
I do have psoriasis (scalp psoriasis), and yes, I’ve been having joint pain for months.
Immediately, I started googling. What is psoriatic arthritis? What are the symptoms? Is this why all of these typical treatment methods that should help something like hip bursitis or tendinopathy aren’t working?
The problem was that my company had just been bought. We were in the beginning stages of this transition, and I was still waiting to find out the details of our health insurance plan. I didn’t want to schedule a rheumatology appointment using one health insurance plan, only to find out that the new health insurance wasn’t accepted at this office. And then, for some dumb reason, I thought I had to wait until I had my insurance card (or at least a digital copy) to set up the appointment, so I waited until January 2nd.
The earliest appointment was the end of January, which was a huge disappointment. I know specialists are harder to get quick appointments with, so I should be grateful it was only a few weeks of waiting. But I was just in so much pain, and I couldn’t fathom living like this for another few weeks.
Alas, I did. It was a rough start to the year. Let’s take a break from storytime to discuss all of the aches and pains I’ve been dealing with over the past few months:
- Shoulder pain – Using my arms to brace myself when getting out of bed or from a seated position on the floor was excruciating. I also haven’t been able to lift my arms higher than parallel to the floor.
- AC/SC joint pain – I am an expert on this joint now! The AC joint connects your collarbone to your shoulder joint, while the SC joint connects the other side of your collarbone to your sternum. This is a very common area for psoriasis arthritis pain. And surprise! These joints are crucial to almost everything we do. Sitting, standing, moving our arms, typing, turning over in bed… this pain sucks.
- Sausage finger – My left ring finger started hurting a few weeks ago. It became swollen and difficult to bend. Even touching the finger hurt, so I started keeping a brace on that finger to protect it. Thanks to this sausage finger, I couldn’t even brush my hair with my left hand because I couldn’t grip the hairbrush! That’s lovely.
- Elbow pain – For people without psoriatic arthritis, this is typically called golfer’s elbow or tennis elbow (because I had both!). Gripping anything with this arm caused shooting pain, and sometimes it would just ache and ache for no reason at all.
- Hip pain – We’ve been over this. My hips have been on the struggle bus since October. I can’t sleep on my side because it puts too much pressure on my hip. I have to oh-so-slowly straighten to a standing position when I’ve been sitting because my hips get so stiff.
- Tight IT bands – I love sitting criss-cross applesauce. I love tucking one foot under my other leg when I’m sitting. I love being able to put on socks and shoes without excruciating pain. This tight IT band has been awful.
- Knee pain – A few weeks ago, my left knee decided to join in the fun! The interior side of my knee is tender and aching, making it hard to walk and even straighten that leg. WHY.
- Achilles’ tenderness – This one has been going on for a while, and it’s another classic sign of PA. It’s only on my right side, but it makes walking hard and for a while, I had to go up and down stairs one at a time because putting too much pressure on that heel was no bueno.
Needless to say, it’s been a very painful and difficult few months.
Yesterday, the day I had been waiting for and counting down to arrived. It was rheumatology appointment day! Cue all the celebration emojis!
The rheumatologist spent a lot of time with me during this appointment, listening to me discuss my symptoms, doing a full examination of all my joints, and taking me through some mobility exercises to determine my range of motion. At the end of the appointment, she confirmed that I likely had psoriatic arthritis. She ordered blood tests to check for inflammatory markers, rule out rheumatoid arthritis, and establish baseline lab numbers (for things like kidney function, white/red blood cell counts, etc). She also wants me to get X-rays to determine if there are any bone or joint changes—she doesn’t think there will be, but wants to have updated X-rays to compare once I begin treatment.
And, the best news of all, she started me on prednisone! Maybe some people wouldn’t consider this happy news, but as someone who has been in chronic pain for five months and hasn’t had a good night of sleep since then… I am over the moon. The doctor wanted me to wait to start prednisone until I got my blood tests done, so what did I do? I hopped over to the Quest Diagnostics app immediately after the appointment and scheduled a blood test! I got it done within 15 minutes of finishing my rheumatology appointment because I was not going to wait to start prednisone.
I took my first dose yesterday (starting at 24mg, although my baseline will be 10mg until I’m in a treatment protocol), and as I’m typing up this post eight hours later, I’ve noticed such a difference in my body. I can stand up without pain. I reached for a plate in a cabinet with my right hand (the one with the elbow flare), and I didn’t feel shooting pain up my arm. My sausage finger is not as swollen. I was able to get down on the floor to clean out a litter box, and while it was still a little difficult (especially standing up since my AC/SC joint is still achy), it was easier than it has been in many, many months.
There’s a lot to be determined, of course. I have a follow-up with my rheumatologist in two weeks to discuss my bloodwork and X-rays, and then determine the right course of treatment. It may take some time to find the right medication/dosage, and I may have flares during that period. But right now, I feel like I have a new lease on life. I did not want to get diagnosed with a chronic autoimmune condition, but if I have to have one, then so be it. I’m glad I finally have a reason behind all of my pain and a caring doctor who is ready to help me get on the right track to feeling better.
(I’d like to give a special hat tip to Lisa, who has always been like a big sister to me and even more so now, as someone who is further along in this autoimmune arthritis journey and has been such a helpful resource. Knowing I’m not in this alone has helped more than she’ll ever know!)
HOORAY. The worst thing in the world is knowing something is wrong with you and not being able to get a diagnosis. The journey you have been on sounds TERRIBLE, and I’m so glad you’ll be able to have a treatment protocol moving forward! I hope you continue to feel better and better. And I hope you get some sleep!
Thank you, friend! It is so relieving to finally have a REASON behind my pain and a way to treat it. Being in chronic pain for so long is really demoralizing.
Such good news that you have a diagnosis! I’ll never complain about pharmaceutical commercials again!
But it is sort of a bummer that it’s a chronic autoimmune disorder, isn’t it? Hm. Well, let’s be positive! You have a diagnosis and hopefully will be able to come up with a long-term solution that will allow you to live your life fully and the way you want to!
TRULY! I always laughed at those pharmaceutical commercials that were like, “Talk to your doctor about XYZ drug.” And then the commercials worked on me! I think I would have spent a lot more time unsure of what’s going on.
I haven’t really thought about the long-term ramifications of having a chronic autoimmune disorder. Right now, I’m just grateful to not be in pain 24/7!
Ok, it is very good news that you have a diagnosis instead of “yeah let’s just give you a cortisol shot and see if it helps”. But….gah it’s a lot to take in. I’m so sorry that you are facing this.
Here is to the pain free days ahead!
I have had SO many steroid shots, my friend. And I’m sure I will have so many more as time goes on. But at least I finally have a doctor who knows what she’s doing and can help me feel better. <3
Oh gosh, Stephany, I’m so sorry that you’ve ended up with PA, but also happy that you have a diagnosis, and now you don’t have to guess anymore. I guess there is a good use for those pharmaceutical commercials after all. I hope you can figure out just the right dosage of medication to keep you pain-free and feeling good. What a journey you’ve been through.
Thank you! I didn’t ever think I’d have a chronic autoimmune condition such as PA, but at least I have answers for all the pain I’ve been having. That’s a relief!
I am so sorry for yet another diagnosis, Stephany… but also, hooray for a diagnosis. I find very little more frustrating than being dismissed by doctors who cannot or don’t want to figure out what is going on. I can’t believe you had to come up with your own potential diagnosis in order to get the right treatment. But at least, you know what’s going on now and can do something about it!
I cannot blame any doctors for my non-diagnosis! I never went to my PCP for this (I probably would have finally gone to talk through my symptoms if I hadn’t seen that commercial) and the orthos were looking at bone structures, not necessarily joints. Again, if I hadn’t seen that commercial, I may have gone back to my ortho and asked for an MRI or ultrasound, which may have shown inflammation and prompted a referral to a rheumatologist. I’m not sure!
I am sorry that you have this diagnosis as it is hard to have a chronic illness. But I am glad there is a path forward to being pain free. And I am glad I can be your companion along that path. With almost 13 years of having RA, I have been through so many protocols so chances are that I have tried anything you’ve tried. And we are lucky that there are amazing drug treatments available. I am sure you won’t have any joint damage but it’s good to have those baseline X-rays to use in the future. Even with all of the issues I’ve had, I don’t have any permanent joint damage, except the joint I had surgery on. Usually the radiation tech will say my joints are ‘unremarkable.’ Which is a good thing!
I am glad you are getting relief from the pred. It is a wonder drug that provides immediate relief for a lot of issues. I’m on 15 mg now to tone down a flare in my finger and it’s done the trick. Hopefully I can taper off in the next couple of days. I was going to drop down to 1 mg this week so am annoyed to be on a higher dose again – but so it goes! It’s far better than being in debilitating pain!
Oh wow, I hadn’t realized it had been so long since your RA diagnosis! Time flies when you’re NOT having fun with inflammatory flares!
It is SO nice to not be in so much pain all the time, thanks to prednisone. My little sausage finger is still on the struggle bus, so I may ask the rheum for a steroid shot in the joint at our follow-up in early February if it’s still stiff and painful. Blergh.
Here’s to unremarkable joints!
I’m so sorry to hear you have been in so much excruciating pain and have a chronic disease, but I’m glad that you finally have a diagnosis to explain all the pain and terrible symptoms you have been experiencing. Hopefully the next few weeks continue to be clarifying and you will continue to see improvement!
Thank you! I haven’t quite come to terms with the emotional side of having a chronic condition. Mostly, I’m just relieved to not be in pain all the time!
Ditto everything above. I’m so sorry this is happening to you AND I’m so glad you have a diagnosis. Knowing what you’re dealing with is half of the battle and I’m so glad you’re getting some relief. And Lisa will be THE BEST RESOURCE as you journey through this…
*Hugs*
Yes, knowing what I’m dealing with has helped so much! Now I know what’s been going on and we can work towards a stable treatment plan to keep my pain in check.
I’m so glad that you finally have a diagnosis, even if it is not a good one. At least now you can get some treatment. I’m surprised your GP didn’t at least consider the possibility.
I can’t blame my GP on this – I never even told her! Since I thought it was related to either my spine (at the beginning) or my hips (later), I went to the ortho for X-rays and steroid shots. I would have likely scheduled an appointment with her to talk through my symptoms and get a referral to a different specialist, if I hadn’t seen that commercial. I’m just glad I *did* see that commercial because I would have never connected my psoriasis with my joint pain! I had even gone to my dermatologist in early December for a skin check and never brought up the joint pain because I didn’t think it was necessary. Sigh!
I was sure I commented this morning, perhaps I only thought I did?
I’m so glad that you are getting some relief from the prednisone! It is such a wonderful drug, I wish it were safe to stay on it long term. I was on it for quite a while with no problems though, while we figured out what drug would work for me. And I know Lisa has been on and off of it as needed. I wish the other drugs for these diseases worked as quickly. Most of them take a few months to begin to show any improvement, but thankfully you can stay on prednisone while you wait. There are a lot of options these days. I’m so sorry that you’re going through this, but know you will be on the path to good heath. It’s a relief to have an answer at least, right?
It is SUCH a relief to have an answer and a team who will be helping me figure out the right meds so I don’t have to live with so much pain anymore. Prednisone is a wonder drug, indeed. I feel so much better!
Having a diagnosis is great! Knowing which way you’re going and having a plan is so much better than not knowing.
Indeed! After many months of having no idea what’s wrong with me, it feels good to have some answers finally!
Aww, I’m sorry you’re going through this! My mom has had psoriatic arthritis for years now and manages it well with (monthly? I think?) infusions. She used to struggle so much but once she got on the right medication dose and cadence it’s generally been mostly okay. Her rheumatologist is a life saver, so it’s great that you seem happy with yours, too!
I’m glad your mom has found the right medication dose/cadence to keep her PA stable. That gives me a lot of hope! <3
Oh Stephany, what an emotionally complicated result! I am sure it feels upsetting to have this diagnosis while it must also be a huge relief to have some answers and a path forward. How fortuitous that you were able to recognize the potential connection between your symptoms and help guide your healthcare providers to finding the cause! I hope the prednisone helps and that you are able to find some relief moving forward. xxoo
Sometimes, we really do have to be our own advocates and I’m glad I was able to figure out this issue myself! (I never discussed it with my PCP, but I probably would have if I didn’t see that commercial. Hopefully, she would have referred me to a rheumatologist for further testing!)
I am so relieved to have an answer and to have some relief from all my pain finally!
I don’t comment frequently, but I have watched your chronic pain journey and I am so glad you got a diagnosis <3 I hope that this helps you feel better. What a relief to know exactly what's been causing this!
So happy you got a diagnose or at least are on your way to figure it out completely. It such a limiting factor being constantly in pain. I am sorry.