So I have already had two fusion surgeries to correct a deformed toe and finger. Today I noticed that another toe is trying to move in on top of the next one :(. Am I the only one that feels like this happens all of a sudden? The other joints ended up at a 90 degree angle and I honestly don’t know when they got there. So today I’m struggling with control, I know in my heart that I can’t stop this joint from going wayward nor can I fix it now. It leaves me so frustrated and angry especially since I had recently changed my eating and started exercising to look after my body…I feel betrayed to say the least. Just another reminder that I’m different, a struggle that my family and friends just won’t understand. That’s why I came here to share it (and vent) with you all. Thank you for reading
I know it is hard but, you have to keep pushing forward. Also talk to your rheumy on how fast the joint damage is coming, You may need a med change or adjustment. I will pray for you and know that God is never more than a prayer away, he will hear you.
I know that feeling. I stood by as I lost the arches of my feet. One day, there they were … gone. What a feeling of betrayal: after all those years of feeding my body well and dressing it pretty (and buying good-quality, supportive shoes), it was doing this to me.
Tell your rheumatologist. And vent here. We get it.
You are definitely not alone....I have a toe that started out a little swollen a few months ago, and in a matter of weeks it is completely deformed and when standing it no longer touches the ground. I also have a finger that is always in a curved positon. I know it's frustrating, especially since I have been taking Methotrexate every week and am on Remicade once per month. I am sure a lot of it has to do with the fact that I used to have a crappy Rheum Dr., and when I found my current one the damage was already done.
It definitely sounds like the meds aren't fully doing their job, if things are happening that quickly. It's definitely something to talk to your rheumy about.
I had damage to my ankles and SI joints that happened QUICKLY while I was in the process of getting diagnosed. X-rays three months apart showed significant damage. It's crazy how fast this disease can get out of hand!
I lost two finger joints to the 90 degree business...however mine happened gradually. I kept splinting, and splinting, and that helped some, as did PT exercises and playing the piano. I've had another, more major, finger joint starting to go for the past couple years, and I splint and exercise it as well (no piano playing anymore though). I know it will go eventually, it's like watching a slow, deadly avalanche. Wait, not the best analogy for a tiny finger LOL
my hands "doing the twist" were my first clue that something was WRONG....since the first two fingers on my right hand began the show...one more finger...One joint at a time....all got nodules and have twisted like corkscrews. It started on my right hand and it has moved to the left.....My left pinkie wants nothing to do with that messed up hand so it has moved sideways to get as far away as possible from the other. I never before knew how many joints are in the hand/fingers until they started blowing up like balloons. One think is dependable in thisdisease: my hands ALWAYS always hurt...regardless of how "good" the rest of me feels.
Just found out that my bad hip is a bad back, at least two fusions. No wonder she told me my right leg was turning!. Two toes, two fingers, both thumbs, a back( upper and lower) an eye, a leg.... wonder what we will find when the rest of me is x-rayed? Can I raise anyone an elbow?LOL I think between all of us we could raise a pretty hefty pot and play some Texas holdum' for joints.
I am decidedly funny looking on my right side, my toes go west and my fingers go east and the leg just looks silly pointing the wrong direction to the side instead of to the front. Those toes used to look so cute all painted up :) Now they look like opposing flags HA!
Sooo ..today the nurse said, Now we order the MTX and wait the approved several months and then we order the Anti TNF.
This is what happens when it take a long time to get your doctor to listen to you and not just read the last screen on the chart. All you good Drs. on the site, please take no offense, this was simply a bad case of lost records.
. Funny how insurance works -you would think the meds would be cheaper than the repair surgeries.
Vent away, honey! Sometimes you need to get it all out. Who here hasn't felt a little like their body betrayed them at times?
I know what you all mean about how quickly it happens. My right foot was getting deformed initially and I could compare it to the left as a gauge of how bad it was, then the other one started. It is very frustrating to wait for approval to use medications, mine happened while "proving" that max MTX dose wasn't going to help me and neither were direct injections into my foot. I had to get several steroid injections into the ball of my foot, meanwhile the bursa kept swelling and breaking and I ended up with a bunionette off to the side, a pinky toe pointing all the way in and a badly scarred bursa that hurt to walk on. I finally got on Humira and then had that foot corrected. Now the other foot needs the same surgery but I can't get it because I'm in a flare. Don't get me started on my toenails....
Thank you all so much for replying! Feels great to know I’m not alone and to hear from people that actually understand! I have a doc appt in a few months so will discuss it with her then. I have been quite flu-ey this year and have had to miss several humira injects…maybe that’s contributing. Wishing you all the best!
Over the years my fingers have become terribly deformed, especially since I have been on Remicade the last four years.. Go figure. The orthopedic surgeon left it up to me though. He said with this disease, correcting the contractures is all well and good, but they will reappear...in addition, he cautioned me how painful the rehab is. Same with my elbow joints... So I chose no. I thank God my toes have never been affected. What really is upsetting is I drop things all day long and the psoriasis has eaten my nail beds which is quite painful. ... so I just have to deal with it but it is very difficult at times.
Glad to hear you are choosing what is right for you at this time. Sorry that you drop things all the time, that just seems to be the way with things. I think of it this way. At least I have hands to drop things from....some people don't and that would be even harder I think. Sounds like you are viewing the world in much the same manner. Here is to pretty toe nail polish! :)
It is very difficult, especially in these long cold months so..... Here's to you!!! You made a good decision for yourself today and that is always something special. I salute your courage and your faith in yourself. Hope the sun finds it's way to your house today:)
I certainly know how you feel. Even with a lot of improvement I can't seem to shake the problems with deforming fingers. It's frustrating and there seems to be different stages, some very quietly move in and do the damage.
I'm just getting rid of the small flare up in one finger but now that the pain is subsiding...I notice the finger looks even worse than before.
We are in an elite club. I hope one day I can have some of it corrected.
Are you taking meds? If yes are you on biologics? I'm asking because the reason I believed we treated this disease is to stop the damage? It makes me sad to hear that you are having damage :-( Maybe more aggressive treatment is needed? Sending healing thoughts your way and wishing you brighter days <3
I so feel your frustration. I have a toe on my left foot that went from normal to abnormal in a matter of weeks. Initially I kept feeling achiness where the toe and the base of the foot meet…within days I could barely any weight on the foot. Saw the rheum dr and as usual I didn’t present with any dactylitis…that"sausage" look. This has been a struggle throughout my battle with this disease…I just don’t always have the swelling associated with the pain. Well my rheum dr decided on an ultrasound …in which that test would show inflammation deeper within if it actually was present. It was…very present…very high concentration of red color on the images. Remicade dose increased…prednisone prescribed; however toe did not respond. I now.have what appears to bea severe hammer toe…doesn’t touch the ground anymore and very painful to the touch. This happened within a matter of a few weeks. Damage done…hoping increase in MTX and Remicade slow any further destruction
If you look at the pics of my hands and feet on my page you wll see a bit of the deformity that led my rheumy to take one look at me 6 or 7 years ago and to say, "You have psoriatic arthritis." every joint in my hands has been affected. My pinkie on my left hand is in the process of divorcing itself from my other fingers...It goes straight out at a 45 degree angle..Originally the problem was on only my right hand, but because I have bilateral PsA it is now working its nefarious ways on my left hand as well. My middle finger on my right hand looks like a corkscrew. The base of my thumb joint on the same hand is all caved in and now my thumb comes out from underneath my hand. I used to have beautiful hands. My wedding ring was a size 4--and it was loose! Now my fingers look like stubby ugly things. My fingers on each hand, are all the same height...Pinkie, ring, middle and forefingers...all are the same length. This disease certainly takes care of any pride we may have in our appearance. Oh well --living with this disease not only creates humility...it allows our courage, sense of humor, and our reliance on God's Grace and strength all to shine the more brightly.
I am actually the poster child for deformed hands. Mine have been getting progressively worse for several years now. But it took a long time for some doctor to refer me to a rheumy. Once they did she started treatment immediately. I started with MTX and then she added Humira, sadly to say that combo did not work for me so she has switched out Humira for Remicade. I'm hoping this works. I know this sounds silly but keep a diary - login every day how you felt, what drugs you took, what you ate, because when you get to someone who will listen and help you they need to know these things.
the diary is a good idea ....I used to use a website called Relief Insite.com which had a very complete manner of tracking your pain and other symptoms and the great thing about it is that you can set it up so that your rheumy has permission to look at what you've tracked thus far...if you get a rheumy who is interested in more than a 3 minute visit, they will find this very useful.