Psoriatic Arthritis Concerns: “Arthritis Hands”

Psoriatic Arthritis Concerns: “Arthritis Hands”

This year I was privileged with the opportunity to attend the American College of Rheumatology Annual Meeting in DC with The International Foundation of Autoimmune Arthritis. For 3 days, we Facebook Live’d interviews with researchers and non-profits. It was pretty awesome (check out all 20+ videos here!)

We’re here in DC for the next few days interviewing researchers, foundations and non-profits with The International Foundation Of Autoimmune Arthritis. Make sure to follow @ifaarthritis’s Facebook page to see all the Live interviews AND comment with your questions!!

See this Instagram photo by @itsjustabaddaynotlife * 102 likes

Over those 3 days, I heard about great research occurring in the rheumatological space. But the biggest thing I walked away with was personal.

As I was there, I saw pharma booths with graphics of what autoimmune arthritis looks like.

I saw patients as living proof of what the disease looks like.

And I kept thinking about myself and how my disease manifests.

Yes, I realize this was selfish, as I was there to help disseminate knowledge to other patients. But, honestly, I couldn’t stop thinking about myself.

My Hands

Up until this year, my hands haven’t been a huge problem for me. I had occasional wrist problems throughout the years, but I never considered having a problem with my hands. In fact, most people only believe I have a knee problem. And, to a certain extent, I guess I started believing the majority of my problems only resided with my knee as well.

But let me tell you. The last 8 months have drastically changed that.

Numb fingers and forearms, pain starting in my thumbs and shooting up to my shoulders, swollen finger joints. . . these have started to become the norm for me.

I don’t quite understand why either. Sure, I started back to work this year, BUT I’ve been blogging for the past 3 years. I was usually on my phone, ipad or computer the majority of the day before. What has the difference been?

As this year has progressed, I’ve had to pay more and more attention to my hands. Most recently, buying compression gloves to start to wear to help the pain.

In my mind, I keep telling myself this is temporary. This isn’t going to be for forever. I’m just learning how to manage and once I figure out the triggers, this pain, numbness and tingling will be gone.

But that ACR weekend made me ask the question I’ve been dreading . . .

Will it really ever go away?

Will I ever be able to manage it completely?

Will I be able to get back to writing in a journal without having my hands cramp up?

My Concerns

Sure, I can’t lie and say I have NEVER had that thought before. BUT, this weekend did bring up a topic regarding my hands that I HAD NOT thought of before.

Deformities.

During the ACR, I saw picture after pictures of what “arthritis hands” look like.

I heard what doctors were to look out for as symptoms of arthritis.

I spent time with patients who compared what arthritis had done to their hands.

Looking down at my own hands, I realized I was lucky.

I have no signs of problems with my hands. Sure, my middle finger is crooked, but it’s always been like that. That’s just the way my finger is.

They occasionally swell, and most recently my right middle finger will look a little funny. . .  but other than that, most days they look like normal 31-year-old hands.

But . . . am I eventually going to end up with “arthritis hands”?

The “sausage digits” so commonly seen in psoriatic arthritis patients, the breakdown of finger joints, the ankylosing of finger bones. Is this going to happen to me?

Up til this point, I’ve only ever thought of my knee in terms of normalcy.

This isn't the greatest photo of my Grandma, my cousins or my Uncle Ben, but it's the only one I could find that showed part of his hands. You can kind of see it here (if you zoom in) - notice his knuckles. Autoimmune Arthriits, Rheumatoid Arthritis, Psoriatic Arthritis
This isn’t the greatest photo of my Grandma, my cousin or my Uncle Ben, but it’s the only one I could find that showed part of his hands. You can kind of see it here (if you zoom in) – notice his knuckles.

When I was in my teens, my doctors used to joke about how I’d probably need a knee replacement by the time I was 30. In the back of my mind, I’ve always been worried about my knee. I never really took time to think about what would happen with my hands.

 

Uncle Ben Hands

I had a great uncle who had arthritis. I’ve never been told his official diagnosis (I can only suspect it was RA or PsA). His knuckles were enormous and he always wore gloves. When I was little, my parents would tell my sister and I not to crack our knuckles or else we’d end up with Uncle Ben hands. The thought would terrify us both.

These few days at the ACR brought back images of Uncle Ben’s hands.

No offense to my late Uncle Ben, but I don’t want the hands he had when he was here on earth.

Baby Showers

When you’re 31, you find yourself at many baby showers.

A few months ago, I went to my friend’s baby shower and wasn’t having the best day. (She’s since had a beautiful, healthy baby boy. He’s adorable. Seriously.)

As I sat there, watching her open up presents, I leaned over to my mom and teared up. Thinking about opening all those presents made me want to cry. Not because they were so cute, but because with the way my hands had been feeling that day, there was no way I could have physically opened up all the gifts.

In November, one of my best friends had a baby shower. That day, her Mom asked my friend and I to help with presents. I was more than happy to do so, but when she asked if we could write down the gifts, that’s where I froze. Yes, I wanted to help in any way I could, but I knew I couldn’t write down all the gifts that she would open. My poor journal has seen no love from me this year because I can’t write! After a few sentences, my hands cramp up and I just can’t do it.

I’m 31. I want to be able to write in my journal or type on my laptop or write down gifts for my friend at her baby shower – and not have to worry about over doing it.

Psoriatic Arthritis Concerns: Arthritis Hands and Hand Deformiities with Autoimmune Arthritis | itsjustabadday.com Chronic Conditions = No Control

I’m feeling very emotional about this right now because I usually feel like I have things in control. I’m a very cause and effect person. Something always causes something.

And I’ve been having an extremely hard time figuring out what’s causing my hands to bother me this past 8 months. Yes, carrots and apples seem to flare them up tremendously – hence, I avoid them. But other than that, the only thing I can boil it down to is stress and using my phone more than 10 minutes at a time.

So, long story short. I’m scared.

I’m doing everything that I can do right now to prevent it. . . but what if I end up with arthritis hands?

What if I end up having hands like Uncle Ben? (Something that I was afraid of when I was younger.)

What if everything I’m doing isn’t enough to prevent it?

At the end of the day, I’m scared because I don’t know what will happen.

But that could be said for everything in life. No one knows what will happen.

We could (and I’m sure a lot of us DO) drive ourselves NUTS worrying about what might happen.

All we can do is to try our best and have faith and hope.

I’ll continue my hand exercises, I’ll continue making modifications to help support a health body, and I’ll continue to make the most of every moment.

Only God knows what will end up happening to me and my hands.

And, truthfully, I need to work on accepting that.

Wishing You A Pain Free Day,

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

  • Cindy Walker

    Julie, thank you so much for your transparency. Your mantra “justabaddaynotabadlife” has given me a new perspective on life. I will be 50 this Friday and have lived most of my life with psoriasis…and for the past 5 years with the diagnosis of psoriatic arthritis. I have a wonderful husband, awesome family & support system, but living with chronic pain can be overwhelming some days. However being grateful for the little things and choosing to hope for a better day tomorrow IS key. Your positivity and authentic posts are incredibly encouraging. May you always be well enough to keep sharing and doing what you do so well!

    • Thank YOU for reading and posting your comment. Hope you had a wonderful beautiful celebration yesterday and I hope you continue celebrating all weekend! It really can be overwhelming. I SO agree with you! <3 <3 Sending you lots of light and love!

  • Danielle

    Julie-
    I love checking into your blog every few weeks- It’s very relatable as I have PSA and am 29. Would you ever go back on medication as well as continuing your lifestyle? I saw you were on humira and were able to come off, which is amazing! However, have you thought about going onto something low dose?

    • Awe thank you!! So, it’s not that I am against medication, but I have strong opinions on the options out there currently. My biggest problem with them is that they wipe out your immune system – the things that’s supposed to help keep you safe and heal. When I went off of my humira, it was because I was having my stem cell procedure done for my AVN. It became a great test to see if I still needed it and honestly, for over a year I THRIVED. I felt great and really knew I didn’t need it. Then, last February, I got a virus and the next month I started back to work. Ever since I got that virus, I feel like it stirred back up my arthritic problems.

      The drugs that are used for autoimmune aren’t just like going on a simple course of antibiotics or something like that. It’s like all or nothing with these drugs. I’ve thought about going back on something as this year has gone by, but
      there are a few things that have held me back (this would actually make
      a good blog post).

      1) I want to promote healing in my body. By taking the meds I feel like I’m hindering the healing process. My symptoms aren’t bad enough for me to want to take something. IF my inflammatory markers were to start creepin’ up- I promised my doctor and my family I would get back on something to help prevent joint damage.

      2) I’ve been following The Medical Medium’s plan for healing since last November. I started incorporating the celery juice and his suggestions for supplements. Then in April, I had a consultation with him. I really want to give his suggestions a fair shot. It can take upwards of a few years to knock out deep seeded viral infections. I feel if I start on medication, it’ll stop the progress I’ve been making.

      3) The symptoms that I keep having I KNOW are because of certain triggers. Stress and pushing myself are the biggest ones. I can’t in sound mind tell myself that’s enough justification to get back on medication. Like, oh sure Julie- keep pushing yourself to flare up, but then take this medication to help. It goes against what I believe. But, I have been making some adjustments and actually have just quit/backed out of a few commitments I’ve had because I’ve just been overextending myself (and you could probably tell since I’ve barely been posting on my blog)!

      Having said all of that, don’t think I’m again medication. I know it can sometimes come off that way, but honestly it can be SO extremely helpful. Humira helped me really get things under control to a certain point. Then I credit all of the other things I’ve been doing to TRULY helping. I’d never discourage someone from seeking out medication and to be honest, after seeing what CAN happen to my hands I’ve been really thinking about it more and more. IF I was to get back on something, I’d look for something more targeted – like otzela or xeljanz (if it gains PsA approval) because they’re more specifically targeted inflammation pathways.

      Are you on anything right now?? How is if going for you!

      Thank you for your comment!

      • Danielle

        Thanks for replying!! I’m totally with you regarding your concerns with medication. My PSA was triggered after giving birth to my son almost 2 years ago and I fought my rheumy for the longest time about going on meds. I finally caved and started Sulfasalazine and an anti-inflammatory, which worked well. Unfortunately, when they started working I essentially went in denial that I really needed them so I backed off the anti-inflammatory and went into a major flare. I struggled from there to really control it all the while trying to adapt to being a mom. Fast forward another few months and I went on Enbrel while still taking SSZ and things finally calmed down. I’m too scared at this point to really alter my medication as my son is now a toddler and active as ever! Once we’re done with kids, I’d really like to try and back off my meds while trying to heal my body through diet and supplements.

        This whole diagnosis is really still such a learning curve for me. I’ve tried to stay out of forums as I’ve found there’s a lot of negativity there, which is pretty scary. So, I only like to research/read more positive and uplifting blogs or stories. I’d love to connect or stay in contact 🙂 I appreciate your blogs and food creations!

        PS the topic of meds WOULD totally be a good blog post!

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