Actual therapy! And ups and downs.

So, today was a bit of a whirlwind.

After hitting a depressive slump for the past few months, I finally got some appointments scheduled when my parents came to visit last weekend. Which was awesome; it was about time for me to start moving again.

So, after getting a list of nearby physical therapists and occupational therapists from my insurance, we more or less picked one out of a hat and made an appointment (at a place on both lists, so they do PT and OT, so I just made an appointment for OT to feel them out a bit before making any further commitments). All well and good – and I was able to get a pretty quick appointment, just a few days later.

Yesterday, the day before my appointment, my arm started hurting weirdly. I’m familiar with standard types of pain (cuts, bruises, sore muscles, etc.) as well as my rather particular types of pain (which I loosely categorize into joint pain, bone pain, and fibro pain), but this was different. It’s something I’ve felt before, but it doesn’t happen especially often – maybe once every month or two – and so I hadn’t talked about it with any of my docs yet. It’s located somewhere between the bone and the surface of the skin, on the bottom side of my forearm, radiating up into my elbow and down into my hand; to me, it always felt sort of like my veins were being stretched out weirdly, but that never really made sense.

Today I realized that there’s a decent chance it’s actually my nerves that are hurting when that happens. That explains why it’s a different type of pain – the “texture” is different; it feels more like a spiderweb across my arm, with focal points that hurt worse than other, and it peaks and crests much more slowly than any of my throbbing pains normally do… and my pain meds (mostly Aleve and Tylenol) really don’t do anything to help with it. Which is weird, because Tylenol usually helps with any pain, regardless of the cause, though it’s certainly better for some than others…

Anyway. The pain was quite bad, and my meds weren’t even making a dent in it, but often this type of pain will go away overnight if I get some good rest, so I tried to do that. Which got a bit foiled because my dad butt-dialed me a few hours before I meant to wake up, and the abruptness of that plus the lost hours of sleep was… actually pretty significant. Once I was conscious, I knew I wasn’t going back to sleep, especially since my arm had apparently gotten worse overnight. It was now hovering around an 7.5 out of 10 – which is really, really bad. Once it gets above a 7 or so for me, it goes from “moderately distracting” to “serious impediment”. I spent the next few hours trying not to cry, as the pain grew steadily worse.

Then I started thinking about what this meant for my OT appointment later that day, and that’s when things went from bad to worse. I was FINALLY making real progress and getting into see people who could really help me, and suddenly this things happens that I seem to have no control over and can’t even mitigate that may make it impossible for me to keep the appointment – I can’t very well make meaningful conversation about my medical issues when I can’t stop crying because my arm hurts so incredibly bad that I can’t breathe. And that was the beginning of a panic attack. (It’s been a few months since I had one of those. I didn’t miss them.)

For those who don’t know, panic attacks really mess with your head. You stop thinking clearly, everything seems enormously worse than it actually is, and it’s really, really difficult not to just curl up and cry and gasp for air until it goes away on its own. It’s not just a matter of willpower; your mind betrays you, so even if you’re a very rational person, it doesn’t matter in the slightest.

Fortunately, I had the gut reaction to call my dad (that says a fair bit about how much we’ve worked on our relationship over the past year or so, honestly, as well as how good it was to begin with even if it was awful on medical and mental stuff). I managed to tell him some amount of what was going on, and he helped calm me down a bit and talked me into calling the OT’s office and explaining to them what was happening and asking for their advice. The woman on the phone was quite good at handling herself, and helped lay things out for me more clearly, as well as telling me a bit more about how OT works – we were going to spend most of the time talking anyway, and not actually do a whole lot, so even if I couldn’t use my arm at all it would still be beneficial to come in for the appointment, if I thought I could concentrate enough to talk. I basically decided “fuck it, I’m going anyway” and did just that. (I also let them know that I’d need help filling out paperwork, since not being able to write was the primary reason I was going for occupational therapy to begin with.)

I had calmed down a decent bit by the time I actually got there maybe twenty minutes later, but sitting in the waiting room, I was still struggling to control the pain and the panic; I tried to focus on the news they had playing on the TV, and listening to the conversations the staff was having nearby. After a while, they called me back to fill out paperwork, which went fine – for once, the office staff at a medical institution was actually understanding of their clients’ medical issues, and they were actually very willing to help me fill out their paperwork! (You would think that would be standard, but LOLNOPE. In my experience, most receptionists are incredibly judgmental and probably somewhat overworked, and they look at me and see a perfectly healthy twenty-year-old with no reason to have trouble filling out standard paperwork despite the fact that they are looking at paperwork that says I definitely have some really frustrating and severe issues and basically tell me that they have to have it filled out and it’s my problem to figure out how. Ugh.)

So, score point number two for this place – their office staff is willing to work with me! (First point was helping me calm down over the phone.)

Once I went back and started talking to the occupational therapist, he naturally had a lot of questions about my medical history. And for me, my medical history is an incredibly painful subject – I have to recount my life story, more or less, and I can’t do that without crying. He saw that, and moved us into a more private area, so I wouldn’t be quite so uncomfortable about being uncomfortable, without me having to say a thing about it. Score point number three!

He seemed to have some knowledge about JHS, and he was quite attentive as I was explaining things (which takes a while and a lot of back and forth, and some docs just don’t have the patience, so point number four). He was impressed by my own self-awareness and knowledge of my conditions, as well as my initiative and persistence, and while that’s becoming fairly par for the course, it’s still neat to hear it from someone new. And then we actually did start doing some basic therapy!

He showed me a different way to hold a pen – between my index and middle finger, instead of between my index finger and thumb – that puts far less pressure on the bones in the tips of my fingers and uses less finger motion and more wrist motion for writing. (Guiding principle of physical therapy – use the bigger joints instead of the smaller ones whenever possible, because they have bigger and stronger muscles and more stability and can generally take more abuse if need be.) We also played around with different grips and foams to put on/around the pen to make it easier to use with less pressure. I’m pretty sure I’m going to come out of this at least able to write enough to make it through a college math course, though I probably will still want to do essays and such via laptop (in no small part because my handwriting has never been great, and writing in this different way means it’s even worse – that’ll improve with time and practice, but it’s still going to be way easier for my profs to read my typed work than my written work).

He also had me try out some electrical therapy, and I’m probably going to be taking home a TENS unit in the near future to do that on my own as needed. Now, there are several different types of electrical therapy – it can be used to exercise muscles, to retrain things, and so on – but we weren’t doing any of that. As he described it, it can be used purely as a pain management treatment. Your brain can only focus on so much, and so you can distract it from the pain by giving it this new and different and overriding sensation of minor electrical stimulation. It doesn’t do anything to treat the underlying condition, but it is an effective way to manage pain. So while we were trying out grips and such, I had this machine hooked up to my arm. And yeah, it definitely did help – it was set pretty low, and it didn’t override the peaks of the pain, but it did override the rest of it, and I definitely noticed when it turned off (it only works for a certain period of time, for safety purposes). So, he’s going to let my referring doctor (my rheumatologist at Vandy) know that we tried that and it helped and that I probably should have my own unit to use at home, so that my rheumo can tell my insurance that I need it and officially prescribe it for me, so that I can actually get that! He’ll teach me more about using it, of course, so I don’t zap myself badly. (I’ll admit, I was already wanting to get something like this for kink purposes, so this is kinda killing two birds with one stone – and getting insurance to pay for it. I’m being careful to not let that side of things influence my thought-process on the medical side of things, though, and it really did help and would be quite useful purely for medical reasons.)

And we went ahead and scheduled several more appointments, including one with a physical therapist to get started on that end, which is EXCELLENT AND SO RELEIVING AND WONDERFUL AND YAY.

So, when I got back home, I was feeling waaaay more hopeful and encouraged about the future than I have in quite a while. I still am, in fact, though the happy-good-feels wore off a fair bit as my arm started aching again (seriously, why is it doing this and how can I make it stop?!), and as those good feels wore off I realized that today was really quite exhausting and overwhelming, with the pain and the panic attack and the new doctor song-and-dance and the good-feels high and the post-good-feels-high crash. So now I’m sitting and typing and trying not to think about my arm and being tired.

Eh. I’ll take it.

New Year's Update

So, a great deal has happened since I wrote you last; I'll try and organize everything in a semi-coherent fashion.

• I GOT DIAGNOSED!!!! I have hypermobility-type/type 3 Ehlers-Danlos Syndrome, a rare genetic disorder that means my body doesn't make/arrange collagen correctly. That explains literally all of my physical symptoms. (I'll go into more detail about this below.)
• Edit: After talking with the specialist, mentioned below, we're pretty sure that I have joint hypermobility syndrome, which is basically EDS-H but without some of the side stuff.
• I'm getting treated! I have an appointment with a research university's rheumatology group - probably the best specialists in this part of the country - and I suspect that someone there will have experience treating EDS. I'm hoping that we can go from there to physical therapy and pain management and sleep therapy and really start getting my life back on track!
• I talked with my parents and my psychologist about my PTSD, confirmed that's what it is, and came up with some things we can do to address that. Mostly it's just having to disassociate certain stimuli with the panicked response over time, but there are some things we can simply avoid which will make (and have made!) my visits home far less stressful.
• I talked with my cousin Jess, who has gone through some roughly similar stuff, and got her contact info to continue talking with her. It's interesting to see what we've both gone through and how it's similar, as well as how it's different, but most of all it's such a relief to speak with someone who actually understands what this sort of thing is like, instead of trying to explain it to others who only sort of "get it".
• The fellow who had been living with me moved out, so I actually have my whole apartment to myself! This is a good thing - I needed him here for a while, but I've definitely reached the point that I'm ready for my own place for realsies, and now I get to have that!

So, I GOT DIAGNOSED!!!! In a rather unorthodox fashion, too.

I spend a lot of time on a website called reddit, including the AskReddit section. For those unfamiliar with that, it's basically a place where you can ask a question, as specific or as broad as you like, and people from around the Internet will come and answer it. Questions have ranged from "If you had a million dollars, what would you not buy?" to "What's the worst thing you remember about elementary school?" and beyond.

One day, someone asked "What misconception would you like to clear up?" and I decided to post about invisible disabilities and how you can't (fairly) judge folks who use handicap parking spaces by their appearance (that post is here, if you'd like to read it). Eventually, someone asked me to talk about my disability, so I posted about a page describing my symptoms. This got a lot of attention, and several thousand people wound up reading it.

Pretty quickly, I started getting replies and direct messages about that - from people who have Ehlers-Danlos Syndrome, from med students studying it, and one from a rheumatologist who treats a great deal of it, saying that my symptoms sound very much like hypermobility EDS. After the first one or two suggestions, I thanked the folks who mentioned it, and went to look into it, not expecting much - people often have suggestions of what I might have, and rarely are they that similar to what I experience, but it's still worth checking.

And my jaw dropped. The symptoms of EDS matched my symptoms almost exactly - joints that bend and stretch farther than normal, chronic musculoskeletal pain, frequent sprains and dislocations, and some things that I'd never associated with my "joint problem" (migranes, nearsightedness, lightheadedness/fainting upon suddenly standing). I managed to find the diagnostic criteria - what doctors use to determine whether or not you have a given condition or disease - and I definitely fulfill that, so I definitely have EDS. I did some more reading and found that doctors rarely diagnose it because it simply isn't covered much in med school; it's too rare and too little can be done for it to be worth covering.

I wound up printing some information on EDS (this and this) along with some things about my family history and my sleep schedule and going in to see my doctor. He looked through what I brought him and was just as floored as I had been. "Most people who come in and say they found what they have on the internet are completely wrong, but you're absolutely right on this." He also mentioned that the only thing he'd previously known about EDS was that it was "a genetic connective tissue disorder," which is why he hadn't even thought of it in the twelve+ years of treating me.

So, we wound up deciding to try and get into Vanderbilt again, now that we have a diagnosis, and he sent off some paperwork describing my condition and asking for their help, and a few weeks later... voila! I have an appointment with them later this month, and hopefully someone there has some experience treating this disease and will have a decent idea of what to do next. (It should involve sleep therapy, physical therapy, and some pain management, probably along with more testing to ensure it's not something else, and maybe seeing a geneticist.)

And thus, after seeing nigh on twenty different doctors and specialists for different aspects of this, I finally get an accurate diagnosis by talking about my symptoms on the internet. I basically accidentally crowdsourced my diagnosis. It's hilariously awesome, and very, very typical of my entire medical experience thus far (me fighting tooth and nail against what feels like the entire world to get what I know I need until finally some folks get on my side for a change).

Partially as a result of that, and partially just because of the natural progression of things, I'm finally doing better with my depression, anxiety, and (recently-diagnosed) PTSD. I've been able to go home several times over the last few months without having nearly as much stress, and I've been able to be up and doing things much more than what had come to be usual for me. (I was also able to fire a sleep doctor who just wasn't willing to take me seriously, though I got some excellent advice from him and started doing some bright-light therapy to help with normalizing my sleep schedule.)

So overall, doing much better than several months or years ago, and I'm hoping things will keep moving up and forward!