Once in a while, I noticed that my hands would be sore and feel swollen or stiff. No big deal, right? I probably did too much with them or maybe it’s just part of my flare-up. Automatically, I’d write it off as odd, but ultimately unconcerning. The thing is… it kept happening and I had not choice but to take notice. More and more often and for longer periods of time, my poor fingers would be stuck and painful and I was wondering what the hell was going on.
It usually happened once in a blue moon, probably twice a month at most. I’d wake up in the morning and my hand would be stuck in a fist. I’d have to force my fingers upward and they’d sort of ‘pop’ like they were snapping back into place. Close them again and they’d pop when I opened them once more. My knuckles felt stiff and achy, not super painful, but definitely uncomfortable. However, there was no visible swelling or bruising or anything that I could find. I thought, “Oh, no. I have arthritis.” My Mom was also convinced that it was arthritis because she has it and it’s probably hereditary. Plus, given that we don’t know of anything else, we assume that’s the case and I’m over here sulking in the fact that, at 32, my fingers are done for.
It’s months before I can get in to see a rheumatologist to find out for sure and, until then, my primary physician has no idea what to tell me. She’s totally confused as well and simply says to try and use them less. Don’t type so much, stay off your phone, don’t grab anything too tightly. But, the thing was, the pop and lock typically only lasted for about an hour every morning and then it would be gone. So, I just went about business as usual until I could finally see the specialist.
In the meantime, it gets even worse. Now, they are hurting and stiff all day. The popping and stuck digits are happening every single morning when I wake up. It’s gets relatively better throughout the day, but unlike before, they never feel 90% better. They stay painful and difficult to use CONSTANTLY. I’m panicking and my pcp is still just shrugging her shoulders. She’s never seen anything like this before in her 30 years and doesn’t want to even touch it for fear that it might be something serious. Now I have no choice but to not use them because I can’t and it sucks. Cue Jeopardy music.
I go online and ask some others in a forum for their take on what could be going on and they decide that is sounds like trigger finger, but that typically in only in one select finger. Trigger finger or stenosing tenosynovitis is basically when a finger (usually the ring finger or thumb, sometimes both) becomes stiff and gets a locking sensation from the bent to straight position. It’s very common. Reading about it, I’m convinced this is what’s wrong. It sounds spot on like what I’m experiencing! Although… it’s only supposed to be one or two fingers, not all of them and with me, it appears that all of my fingers are stuck. *sigh* Still no answer, but I’m hoping it’s this instead of arthritis.
Finally, I get in to see the specialist and holy moly, am I glad to have found her. She is AMAZING! She looks at my array of problems and vows to help me and I feel so relieved. When I explain the situation with my fingers and show her a video of what occurs, she is more than a little intrigued. She appears confused, but something in her eyes tells me she’s determined to figure this out. She inspects my digits and palms, not really saying much, but extremely focused on what she’s doing. Then she explains to me what she’s looking for and why. I had told her about the trigger finger discovery and she agrees, but looking at my hands, she is shocked. Out of all 10 fingers, 7 of them are ‘stuck’. The rheum shows me what she’s found and why it’s a problem. She says it’s something called contractures and the underlying reason they are there is because of my connective tissue disorder. Yay.
Dupuytren’s contracture usually only happens in one or two fingers as well and, basically, it’s when the tissues that line your digit become tangled and form knots near the base of your finger, in your palm. The knots get stuck on that row at the top and sort of ‘pop’ over it as the fingers are fully extended.
With my condition, Ehlers Danlos Syndrome, all or most of my tissues are effected in some way, which causes an array of problems. Think of your tissues as rubber bands. They hold things in place and keep everything together and in working order. With my disorder, my tissues are weak, thin, and expand too much. So, my rubber bands get stretched out beyond what it should do and then it gets weak and over-stretched and simply doesn’t do the job anymore. I just have floppy rubber bands all over my body, causing loose joints and easy dislocations. They make my organs weak and don’t protect my insides. And, apparently, they got so loose and floppy in my fingers that they tangled up and knotted and made the digits difficult to open or close and caused pain and stiffness. Fun, right?
Anyway, my rheum is flabberghasted that I have it in nearly every finger. she’s pointing to bumps on my thumbs that I always assumed were normal and tells me those aren’t supposed to be there. That’s my ligament and it’s supposed to be down in its own little corridor. “See these lumps under your skin?” The ones I thought were bone? Yeah. “Those are the knots.” Oh… well, shit. She still can’t believe it’s effected seven digits, she’s never seen this before, but she’s 100% sure this is the case. So, she prescribes me some ointment and NSAIDs, along with a hand splint that I need to wear every night to help prevent the fingers from getting stuck in a bent position over night, as they have been.
Since then, I’ve been careful not to do too much grabbing or pulling or over-use of my poor fingers so that they can heal. The ointment is supposed to help loosen the knots over time so that there’s no more locking, while the NSAIDs and just for the pain. I haven’t tried the pills yet because I’m too scared, but I’m doing fine without them.
Trust me, when you’re in pain every single day, you get used to it. Some things that might cause others to be crying or whining or go to the ER, are nothing to me. My tolerance is much higher than most. Anyway, I’ve been surviving on just the ointment and crossing my fingers (excuse the bad pun) that it works. If not, we’ll have to try cortizone injections or *cringe* surgery, which she really, really doesn’t want to have to do because your hands are never the same after that and I’m much to young to be destroying my poor little fingers. So, let’s all collectively hope I don’t have to do that.
Since starting the regimen, I’m noticing subtle changes. Since my hand is forced to stay flat all night, it’s no longer stuck in the morning. However, the discomfort and stiffness is still there. The pain has decreased a smidge and I’m looking forward to this getting better. It’s not an over-night fix, it will take time, but right now I think it’s working at least a little! I meet with my rheum again at the end of this month and we’ll chat about the progress and discuss the future. I’ll keep you updated on what happens, just check back in here. Until then, I’m signing off, because really I’m not supposed to be typing right now 🙂 Okay, byeeeee!!
Far From Perfect 