Earlier this week, I was texting with my brother-in-law Blake about mental health and how exhausting it is to change doctors and therapists. Blake made the joke about making a trauma powerpoint. Hilarious. But accurate. It would certainly be a way more accurate and easier summary of my chronic pain/anxiety than me just trying to sum up what has been going on for the past 3-4 years.
But wait.
I finally went back to my blog to actually figure out when my leg started hurting. The pandemic has really warped my sense of time because it was not three years. It was not even four years. It's been at least six years.
I should not be shocked by this, but I totally am.
2015 was the first time I mentioned having some weird leg pain on this blog. Looking back at this post is interesting for many reason. Firstly, because it's underlining theme is "disordered eating" but I was completely unaware of this concept at the time. And, secondly, my beautiful naive self mentioned this pain very much in passing as if it would just go away. Well, why shouldn't it. I was 28 years old and in the fittest shape of my entire life. Why wouldn't my body just spring back in a few weeks time?
Reader, it would not.
Because this chronic pain journey has been a long one and because it might just be like this forever, I want to use this space to do a better job of creating a chronological pain journey record, what I tried to do to sort it out and all the dumb things doctors and other specialists have said to me.
Spoiler alert: This is about to be a very long blog entry. (But hopefully it will be something I can use as a reference later as I don't really except anyone to read past this point).
Part 1
Prologue: It's just my IT band
Fall 2012?
Prior to the start of my mystery was actually something very simple. Sometime in the early years of living in Kansas, I hurt the IT band in my left leg. At least, I think so. I am pretty sure it was the fall of 2012, because I remember living at 424 S Main St in Hesston, laying on my bed and trying a weird IT band stretch where your leg is like hanging off the bed. It would be the start of very strange stretches yet to come. Eventually, I went to a sport massage therapist. She worked on it a few times and it helped enough that I went back to my self harm I used to refer to as "running."
Chapter 1: A hard metal chair
October 2015
The clearest pain memory marker I have is attending an anti-racism training one weekend in the fall of 2015 where we sat in the Newton rec center on very uncomfortable metal chairs. I remember going home in the evenings and putting my rice bag on my hip aching. This is the first weekend I remember the pain being constant. After that weekend passed, my leg did this weird thing where the pain persisted.
I am pretty sure I went to see my primary care physician shortly thereafter. Knowing me, I was probably experiencing pain way before this, thinking it was my IT band and that I needed to take a break from running so much. Actually at this point I am pretty sure I had stopped running altogether, but was still exercising A LOT. Because the pain was not going away, I would've gone to see my doctor, thinking maybe I had pulled something or had a hairline fracture. Who knows. Not me. And apparently not my pcp because she told me that these types of things just "went away" in like 6 months.
OKAY.
This was my first red flag that I needed to change providers. I had been seeing this PCP for awhile and really liked her. I had no reason (or thought) to second guess her or assume I should or could ask someone else. My young self did not realize that I would need to advocate for myself at the doctor. After all, didn't they have my best interest in mind? Unfortunately, this would be the first of many condescending things she would say to me (about this topic and several others) that made me finally switch.
Chapter 2: "Waiting it out"
November 2015
"Moreover, I've been discouraged a lot my the weird leg problems I've been having for weeks now. My leg muscles are so tight that I am so uncomfortable all the time. And at work this discomfort keeps me from getting very much accomplished. I also haven't been able to work out very much (besides yoga). For someone who is very OCD about my exercise routine, this has been really hard for me to let go and give myself time to recover. Thankfully, 1 message and 3 chiropractor appointments later, my legs are finally starting to loosen up. But it's still a very slow process and I am unbelievably impatient."
At sometime in this timeline I had started going to the chiropractor. The first one I went to was just randomly googling chiropractors in Newton. With Chiro A, I did regular adjustments and even tried some kind of acupuncture. It was fine, not great. Then he told me I was "really pretty, but wouldn't be if I didn't sit up straighter." Ew bye. Unfortunately, Chiro B would not be that great either.
Around this time I started getting regular massages. Living in a small town, I don't have a lot of options with massage therapists and the ones that are around fill up so quickly. However, eventually I would find my girl Nikki who gives the best deep tissue massages ever. (Minus a long pandemic break, I still see her about once a month).
December 2015
"However, the real source of my current angst comes from my bum leg. I somehow managed to hurt my leg awhile back and am now going to physical therapy twice a week. (It's great. It's really helping and I am suddenly a huge advocate for it). However, because I am needing to strengthen specific muscles, I am extremely limited on what type of exercises I can do. I am even limited in yoga right now because I cannot do exercises that require standing on one leg."
Thanks to an ad at the movie theatre, I realized there was a physical therapist in town who did not require a doctor's referral. Levent encouraged me to check it out. I went for a few sessions and at one of these appointments they tried "dry needling" on me. Apparently this is suppose to help loosen the muscles right away. But my before and after leg movements measured the same. And it hurt like hell. I would eventually come to regret doing to PT A, not because I didn't have a positive experience, but because insurance didn't cover it. I no longer had roommates at this time and this insane bill really knocked the wind out of me. I quit going shortly thereafter.
2015 was also the year when I started doing yoga. I was not aware of any yoga near me so just found some stuff on YouTube. I had no idea what I was doing and while some of it was helpful, not being aware of my wonky hips made things worse. My form was off and it would be a minute before I found an actual class and learned out how move my body properly in yoga.
February 2016
"This continues to be my constant battle, as my leg constantly hurts whether or not I am excising or not. On bad days, it turns when I stand, it it hurts when I lie down, it hurts when I sit. I really cannot win. (Today is a bad day. I am currently heating my glut muscles and icing my leg). I do know, however, that a lot of my leg issues are really nerve issues. I guess that's helpful to know, even if it feels as if there is nothing to do about it."
This particular blog entry is interesting. At this point I had already started trying to guess at other random things that could be wrong with my leg. How I knew this was a nerve issue, I have no idea. I wouldn't go to the neurologist for several more years yet.
Chapter 3: Six months later
March 2016
"Yeah so my leg hasn't gotten any better. Actually, it's gotten a lot worse. I am uncomfortable all the time. It aches and tingles and sometimes feels like has a burning sensation without really burning, if that makes any sense at all. It hurts to stand, to sit and to lie down. The only times I feel some relief is if I am doing yoga or walking. I might have one sweet day a week where I feel semi-normal. I've been to physical therapy, the chiropractor, tried acupuncture and the medical doctor who have me on some steroids, (which I thought were helping until yesterday afternoon). What feels like the only logical next step is to get a steroid epidural and get an MRI."
By this point I was starting to get desperate for some pain relief. I started going to Chiro B, who I found again just via Google. He would also not be the best and not very reliable. They were the first place to take an X of my hip. His take away was that my left hip was so insanely out of line that I must have had a series fall when I was younger. I did not. I went to Chiro B a lot, but he never had any notes on my pain treatment. He would just crack my back a lot and inquire yet again if I had been a cheerleader in high school who fell from a lift. Nope and nope. He asked me this so many times it was like he did not believe me. Um, I am pretty sure that if I had a major fall in my life, I would've remembered. I could also tell that I was not seeing the relief that he kept promising his patients and I am pretty sure he found this unbelievable. He eventually recommended that I go to my doctor and get some blood work done to see if there was anything else going on.
And so I went back to my PCP, you know who told me to wait it out. Of course she had no memory of saying that when I brought up my pain and had to remind her. (I completely forgot until I read my blog that she had given me steroids to see if that helped with my leg. It did not). I did have blood work done, but it would not be until afterwards that I realized that if you want to test for things like autoimmune diseases, there are different tests you have to ask for. My "run of the mill" blood tests just did the basics. But surprise! I am not a doctor. I had no idea.
My PCP would eventually schedule an MRI for me to see if there was anything else going on.
Chapter 4: Arthritis?
April 2016
"I found out this week that I have arthritis in my back...I am actually really deflated by this news.
"The following day, my doctor's office called me with the results. This sounds ridiculous, but I was really hoping it was going to be a stress fracture, or something that resulted from over exercising back last fall. You know, something that one can completely heal from. No such luck."
"...next Friday when I get back I am getting a steroid epidural. Then, the following Tuesday, I am going back to my nurse practitioner to ask her more questions about arthritis and hopefully figure out how to still be a healthy, active, young person."
I had MRI 1 in April 2016 and was told that I had arthritis. What? So confusing. I remember getting this phone call and then crying for awhile in my office afterwards. I wasn't just deflated, I was devastated by this result.
Because the MRI imaging doctor whoever TOLD ME I had arthritis, I assumed this was it. (It was not it). In the meanwhile, the next thing they recommended for me were steroid injections. So I decided to give that a try.
April and May 2016
"Overall, it's been a tough week. I went back to the doctor on Tuesday to ask questions about my back. This was post the steroid epidural I had the Friday before, which, for most people, makes the pain go away within 48 hours. No such luck for me. It was a weird experience and now I have a picture of my bones in my desk.
"I know I posted about having arthritis, but turns out, I don't really have arthritis. I have a degenerative condition in my back. Technically arthritis is a degenerative condition, but it's not quite what I have going on in my back. Confused? Yeah me too.
"My understanding is that I have some kind of osteophyte, which is a bony outgrowth associated with the degeneration of cartilage at joints. So this is going on in my spine, which is pressing into the cartilage and putting pressure on my nerves. As a result, the pain alternates from being in my gluts, hip, calf and/or foot (and rarely felt in my back itself). So weird. Am I 95? Yeah, probably."
For my first series of steroid epidurals, I went to see Dr Black in Wichita. Because I had been referred there by my pcp, I assumed they took my insurance. (Dang I was such a naive little baby back then). They did not. So I was about to be hit with yet another massive medical bill. To make things more annoying, the epidural did nothing for me. But usually these things are done in a series of 3. If the first one doesn't take, try another. So I did. (Before I realized about the insurance thing). While the second one ended up being one of my favorite memories with my co-worker friend Tina, it also did not help. (The first one was completely fine. However, after the second one, I could not put weight on my left leg for awhile. Because this can happen, you're not allowed to drive yourself home. Tina graciously offered to drive me there and back, but we'd planned to stop at Costco on the way back to the office. I did not expect to not be able to walk when we made this plan. So I got to go around Costco in one of those shopping cart wheel chairs. It was so fun and hilarious (since it beeps like a semi when you back it up).
I never would get that last epidural due to finally getting my medical bill and learning what "max out of pocket" meant.
"I have a hard time being an optimist in general It's especially hard for me to look on the bright side whenever my back/leg is hurting. Life plus pain feels pretty meaningless. Thankfully, today has been a good day; thus it's easier to have happier thoughts. But was not the case this week.
I spent all week in a significant amount of discomfort. My chiropractor tells me that my back is taking longer than normal to "fix" because I had 2 spinal epidurals done and my body is still healing from those. I don't know. I guess it makes sense. (I spent a lot of time being annoyed when doctors and chiropractors seemingly hate each other, but put me in the middle of their lectures. Sorry people, I am going to try lots of options in order to not be in pain, especially when you're all telling me different things)."
Ugh. I will never forgot how Chiro B lectured me about epidurals, like he had any real idea. I think by this point I had switched to Chiro C, who is the wife of Chiro B. So better, but not by much.
Chapter 5: Is it just anxiety, but in my leg?
"Recently, I've started to notice that when I am completely relaxed, I have significantly less or even zero nerve pain. I've also noticed that these past 2 weeks I have been in a lot of discomfort. It's constant. And guess what is coming up on Monday? Oh right. My least favorite thing of the year: Traveling to Colorado to make donor visits.
I think my anxiety causes my stress levels to be abnormally high on such a consistent basis that I don't even realize I am stressed out. (And really, I am not exactly sure what I have to be stressed about. My life is not that hard). High stress is so much my daily norm that I don't even notice how tense I am or how long I stay in "Fight or Flight" mode."
Thus began the chapter of my life where I started learning about how anxiety can cause physical symptoms. No one was finding anything wrong with me, so maybe there "wasn't" at least in a traditional physical medicine way. I really started thinking about this after chatting with my brother-in-law about a very strange case of arthritis he had. It was so bad that he was hospitalized for a few days because he couldn't move his neck. Eventually, he made some changes (including getting a life coach) and it went away. Our bodies do such strange things. Most likely, I started thinking about going back to therapy.
"Going back" is maybe a stretch. At one point I had tired out a therapist via the EAP (Employee Assistant Program) at work. We get 4 free therapy sessions a year, but the catch is that the EAP contracts are terrible. I went to someone in town and it was not great. I think I only went to 2 sessions. It would take me awhile before I tired again.
"Speaking of being nervous, I am going to the neurosurgeon on Tuesday to talk about my back problems. (I am not convinced I want to get surgery, but I just want to hear what they think. Ironically, my pain has felt more manageable now that I stopped going to the chiropractor every week)"
For some reason, I ended up going to see a neurosurgeon in Wichita. Most likely, it was the only my PCP 1 could think of. So I went. All that happened was that the surgeon basically told me that they couldn't tell just by looking at my MRI what was really going on, My options were exploratory surgery or nothing. I obviously opted for nothing.
Chapter 6: A mind shift to chronic pain
"My hip/leg: Oh geesh. I spent to so much money on trying to achieve some sort of pain relief. I think I've come to terms that this wish won't really ever be my reality. However, I do feel as if I am learning to manage my leg pain more. I stopped going to the chiropractor, which ironically helped a lot. I went to the neurosurgeon and he told me to just build up my core muscles. (Cool. He also said it was too hard to tell what exactly was wrong with me). I am back into an exercise routine, although it is not the one I had wished for when I wrote that post back in the early part of 2016. I left the Hesston Wellness Center, a place I had been for 5 years, (which was actually more sad than I thought it was going to be) and joined the brand new YMCA in Newton. I now swim, go to yoga, the occasional barre class and, my new favorite, Pilates. I love being able to go back to classes, especially classes like Pilates that will help me build up my back and core muscles and then, hopefully, will help me manage my pain. I am still trying to get into this new routine, but it feels hopeful."
As I read back through these blog entries, I can see myself getting more and more depressed about this pain. And the slow realization that this is maybe here to stay. That was such a hard realization to make. It still is. But I think when I finally started having a mind shift from trying to treat the pain to trying to manage the pain, things started to get better. For one thing, I stopped going to Chiro C. I was so tired of the chiropractor bullshit and the weird supplements she gave me for my bone spurs. I finally advocated for myself and just stopped going to a place where I didn't really think was helping.
Oh and as for the "core muscles" comment, so many people have told me just to work on my core muscles these past six years. I know this does help. (This phase when I had access to Pilates classes was the best thing for my back/leg). But remember, this pain started when I was in the best shape of my life. Now, I will be a little bit "eye-rolly" about "oh just work on your core strength." COOL.
"For the past couple weeks, I've really been struggling with some leg pain again. On bad days, it can really depress me since I feel as if this is now my fate in life, to be uncomfortable all the time. But there are other days too when I have a healthier perspective and don't feel pathetically sorry for myself. I have been really grateful for the YMCA and for my Pilates and yoga classes I can go to a couple times a week. I was initially not interested in Pilates at all, but as it turned out, it is currently my favorite form of exercise and really helps my leg a lot. I just wish I could go to more often. (There is only 1 evening Pilates class so far. The rest at at 9:30am. So just add that to the list of things retirees and I have in common)."
Chapter 7: I try to diagnose myself
"Well y'all, I finally (FINALLY) figured out what the heck is wrong with me. After a year and a half of throwing money to the wind for my leg, I have realized that even though I do have a degenerative condition in my spine (that, fun fact, might be genetic) the main source of my discordant comes from having Piriformis Syndrome.
"According to the Mayo Clinic, Piriformis Syndrome is a disorder in which the piriformis muscle in the buttock irritates the sciatic nerve. Symptoms include pain, tingling, or numbness in the buttock and down the leg and may worsen after sitting for a long time, climbing stairs, walking or running.
"So you know, basically everything except sleeping."
Ah, if only this had been that simple. But thinking back, no doctor has ever told me I have this. I told me this. I don't blame past-Anna, doctors were telling me nothing. Despite starting to come to terms with chronic pain, I still want to find a name for the thing I have. (I still want this). I go through this cycle where I maybe think I've got it and the after hundreds of dollars later, realize, well, this is probably not it.
With a new term in my back pocket, I decided to give the chiropractor one more shot. This time, I went to someone who my friend Tina's friend recommended. She had pirifomis syndrome and really recommended Chiro D, who is actually Dr Trost.
Trost is such a great chiropractor! (Which is why he gets named here) The only reason I stopped going was because of the pandemic. But before that, we tried all kinds of things including cupping, dry needling, decompression, compression. You name it. While none of it was the secret cure, it did help me manage my pain for awhile.
Trost never gave up on me. Even after we started discussing whether this pain was all anxiety caused, he said to me "I believe the pain you are feeling is real." No other health care worker had ever said something like this to me before. I felt so incredible seen.
"My latest attempt for pain management is going to to a sports chiropractor. The good news is that 1. this doctor is not a creep. (Sadly I went to too many patronizing chiropractors who were so creepy) and 2. he uses physical therapy concepts without the physical therapy price tag. So not only does he do spine adjustments, he also does dry needling, tapes my back and gives me exercises to do at home (all 3 of those things at PT things). He also activity keeps a chart for me and actually looks at it. (I know, what a concept. He is my 5th chiropractor* and he is the only one who has done this. Seriously, it's the wild west out here). The bad news is that his office is located in McPherson, which is about a 25 minute drive from my house and over 30 from work. Again, the wild west; for medical care you have to choose between nearby sexism or far away quality care."
*I had tried a Chiro before I went to Chiro A, but was before my leg pain really started thriving
Chapter 8: The Yoga era
"My leg saga continues of course, but I found out that my favorite yoga instructor at the YMCA also has her own studio. So I've been going to yoga on Saturday mornings as well. It's so helpful. I wish I could go every day."
Yoga with instructor Chelsea basically changed my life in terms of pain management. I finally learned how to do moves properly for my body, knowing when it was okay to push myself and what things my body just could not do. Besides missing my family, it is one of the things I miss the most during quarantine.
"Okay so really my leg stuff is the same. But, I just decided this weekend that I need to try harder to do more yoga in the morning before work. Yoga (and Pilates) seem to be the only things that help me manage this weird pain. I've gone to a personal trainer at the YMCA twice now and she has helped me know how to better foam roll parts of my legs and what strengthen exercises to do; so that has been really positive. But since I can't go to her everyday, I really need to become a yogi master."
I completely forgot that I went to a personal trainer for a bit to help me know what exercise were going to help me, not hurt me. The thing I remember the most though is that my trainer taught me how to foam roll my legs better. It's still a very helpful tool in my pain management.
Chapter 9: Giving therapy another go
"It was time to get my butt into therapy. And I did. Thankfully my job allows me to have 4 free therapy sessions per year. At the end of 2018, I finally did the work it takes to get that set up and found someone who I actually liked talking to. (I had tried using this service before but did not like the therapist at all)."
While leg pain caused by anxiety was still in the back of my mind, that was not the main reason I went back to therapy, ironically enough. But at least I started getting into the practice of going to therapy. Honestly, I should've started going when I first started taking anxiety meds. But I am pretty sure I was still on my parents insurance at that time and had no idea what I was doing.
Chapter 10: I stop blogging about chronic pain
Don't get me wrong. My pain was very much a real part of my life still. I just stopped writing about it. I don't think this was a conscious choice. Just nothing was changing and I had nothing new to say about it. I also wonder if this is when my depression was secretly starting and I had no idea. My blogging starts to really drop off. (Although just wait for a global pandemic and this blog will just be like crickets)
Despite not writing about it, at the end of 2018, I found a new therapist via my work's EAP program and used my free sessions at the end of 2018 and then again at the beginning of 2019. Therapist 2 was fine, but our time came to a natural end after my EAP ended.
Part 2
Chapter 11: I decide to give the "hunt for the mystery pain" another go
"The thing I've learned about mysterious chronic pain is that it humanizes doctors and health care professionals real fast. In my experience they either do not believe you (especially if you are a young woman) or admit to you that they don't really have a solution for you. It's not great. Even though I have ditched those people who didn't believe me (and openly sobbed in front of the ones who finally did), I still have no real idea what's been going on with my body.
"Last fall/winter I spent a lot of time and money once again trying to figure out what was wrong with (this time the right medical professionals). A new primary care provider, a sports orthopedic specialist, a weird side trip to my gynecologist, a new physical therapist, a few trips to my mental health therapist, two MRIs and two steroid epidurals later, there still seemed to be nothing really the matter with my leg/hip. Although, I did learn that I have tendency to get a herniated disc and my PT thinks that my muscles are just naturally tight. (So fun). At the end of all that, I came out where I have again in the past - I just give up. I get so sick of spending money and going to the constant appointments that it no longer seems worth it."
Why did I decide to do another round of MRIs and whatnot? I honestly cannot remember. I assume I had another flare up. But it might've been because I FINALLY ditched that terrible PCP and got a different one. (I actually think it was that second one). PCP 2 sent me to a sports orthopedic doctor, who I wish I had seen the first time around. Dr. Koontz is incredible.
Dr. Koontz is the only medical doctor who made me feel seen. She believed that I was having real pain. After discussing my leg pain with her, she thought it was a labral tear in my hip. So another round of MRI came my way. But first, she encouraged me to try physical therapy again. This time it was with someone in my network. (Phew). Dr Koontz sent me to an AMAZING PT who specialized in scraping, a technique used to help heal scar tissue. PT Monica Downs was such a great person to work with and it seemed like she genuinely cared about my pain. However, my scar tissued seemed normal and after several appointments our journey came to an end. She did tell that she thought that perhaps my muscles are just naturally tight. Is that a thing?
After this, my MRI happened and my results came saying, "Anna, your MRI shows left central disk protrusion and is near the L5 nerve root. It is worsened from your prior exam. I sent this report to Dr. Koontz."
This was not encouraging. Moreover, this MRI sent me down a very weird trip with my gynecologist which turned out to be nothing... then. But it's definitely something now. (But that's not part of this pain PowerPoint)
Essentially they told I had a herniated disc, which is not as a bad as a bulging disc, but it's still not great. Herniated discs just last forever and they usually heal on their own. I, of course, was not told this. (Thanks Google) and made several phone calls to my Doctor's office asking what the heck I was suppose to do. I was extremely frustrated at the lack of direction.
When I finally got an appointment again with Dr Koontz, she said we could either try PT again or do a steroid injection. Because we had a very long car ride coming up for Christmastime, I opted to try the steroid injection. In the end, I got two of them in my back but this time they did not make my leg go completely numb. I think it was helpful as our car trip did not hurt me as much as I thought it would.
At some point during this fall of renewed searching, Dr Koontz sent me to a neurologist in Wichita, (not a surgeon mind you). They did a test to see if my nervous system was behaving normally. Good news, it is. And that was the end of that.
Part 3
Chapter 12: The pandemic phase
2020
After the end of 2019, I think I kind of stopped trying to figure out my leg again. I was exhausted by it. Instead of the constant hunt for the name of the thing I had, I was focusing more on how to manage living with it. And then the pandemic came.
"Even though I have really just decided to give up, it had been on my mind to maybe find a new therapist. (The one I had been seeing was fine but it felt like we had gone as far as we were going to go. I also knew I needed someone who specializes in anxiety and depression disorders). But, as per usual, I kept putting it off.
Then COVID-19 came to live among us. (That bastard).
The thing about the global pandemic is that, oddly enough, my leg has consistently not been an issue for me these 6 months of quarantine. Weird, huh? So weird. Sure I have some bad days. After all, I still have some back issues and naturally tight muscles that I often forget to stretch. But overall, it hasn't been crazy. My mental health on the other hand has been all over the place. "
Therapist 3 was a good fit initially. I had originally wanted to go and talk about anxiety as it is connected to chronic pain. But with the pandemic and that existential dread, we ended spending more time talking about that version of anxiety, which was fine and needed. And as I noted in a blog entry, my leg wasn't really giving me that much trouble at the start of the quarantine. Weird, huh? Yeah very weird.
But by the beginning of winter 2020, this was no longer the case. (Maybe because we had settled into some kind of pandemic "normal?") I, once again, found myself back at PCP 2, adjusting my anxiety meds but also talking about how tired I am all the time. Eventually, she decided to run some tests and see if I have an autoimmune disease. My results came back as, "Anna, your ANA (anti-nuclear antibody) test was positive. We will set you up with a rheumatologist." But I was also given the note when I got my results that it could very well be a false positive. Great.
Chapter 13: Where we are now...
2021
Because of my somewhat abnormal blood work, PCP 2 referred me to the Arthritis and Rheumatology Clinic of Kansas. There, they did some more blood work, took some X-rays and order yet another MRI. Third time's a charm right?
Nope.
The first thing my Arthritis doctor said to me when I went back for my results was, "You have an abnormal fibroid on your uterus." Whoa. What? (Again that's another story for another time, but it was a bit alarming since this was an arthritis specialist, not my gyno).
The rest of my results weren't as confusing because they were practically nothing. My ANA's tested positive again but my doctor said that it doesn't necessarily mean I have an autoimmune disease. They also saw no inflammation on my spine via my MRI. The only thing that was maybe helpful is that I have something called trochanteric bursitis in my hips. What I think this means is that I have inflammation of the bursa, which is a fluid-filled sac near a joint. Shrug emoji.
This past week, I went to my PCP again to ask for her advice (as well as to adjust my meds again as I am super depressed). It was not helpful. Once again, I feel like I am not being taken seriously. In hindsight, I should've just gone back to Dr Koontz, because that's the end result anyway. I go see Dr K in a few weeks. But this time, I am going to try really hard to have a series of questions ready to go, as well as what I hope to get out of the appointment.
It's really exhausting being my own health coordinator because, guess what, I am not a doctor. I have no idea what any of this means and while I realize health care workers probably don't either, I just wish I had someone in the medical world who was here with me throughout this entire journey.
And on top of that Therapist 3 broke up with me on Thursday. She wants me to see a somatic therapist, which is someone who can help with mental health and chronic pain. Really, that seems promising, but I am not impressed without Therapist 3 ended our time together. I was chatting with my cousin this afternoon, who just so happens to be a therapist herself, and said that there is a standard of how you end your time with a patient, and it's not just by immediately ending things near the end of a current session. This is SO FRUSTRATING. I don't even have a somatic therapist lined up yet. It once again just reinforces the insecure notion that I often have that no one knows what to do with me. So they just bounce me to someone else.
And now we're all caught up. How depressing.
What comes next is that I will go see Dr Koontz in two weeks, and most likely, get another steroid shot, this time in my hip. And then that will probably end my pain mystery hunt again for awhile. I am done.
I also emailed a new therapist who hopefully will be able to take me on as a client. (My friend goes to her and loves her so hopefully it'll work out). The only thing is that she doesn't take my insurance. Once again I will feel like I am just throwing piles of money out the window. But really, the only thing is making sense to me with my leg pain is that it's just anxiety. Which is BONKERS.
And I know I am just gaslighting myself when I say this, but it makes me feel absolutely insane. No wonder I am super depressed all the time now.
Since this is not the end of the journey, unfortunately, there is no end to this post. I will update it again when I go to Dr Koontz.*
After that, who knows.
****
* July 2017
As promised a few sentences ago here is a quick update from my visit with Dr. Koontz. Turns out, in order to get another steroid shot, Dr K wanted to do yet another MRI. (Turns out MRI 3 was just of my pelvis. MRI 4 was to show my spine so Dr. Koontz could compare it to my previous ones. The good news is that there has not been any chance. (So hooray for things not being worse I guess). After that, I was able to get my steroid shot. Normally, these help, but sometimes I have to get more than one in order to really feel any difference. I decide to just do the one for now and we'll see how the rest of my spine feels as summer progresses (Plus, this is time they got some of the steroids into my blood stream and I thought I was going to pass out. It was definitely not a fun experience).
So, in some unending conclusion, I am back thinking my pain is just because of bone spurs/osteophytes. In this moment, this makes the most sense to me, especially after Dr. Koontz told me that this could be causing my muscle to be tight. Shrug emoji. But I am done doing things for now.
ugh.
Table of Contents
In summary, since 2015 I have done or visited the following
- Dozens of deep tissue massages
- just "waited it out"
- 4 different chiropractors
- acupuncture
- cupping
- dry needling
- decompression
- compression
- tape
- 2 different PT
- 2 different series (4 total) steroid epidurals/injections
- oral steroids
- 3 different therapists (soon to be 4)
- 1 neurosurgeon consult
- 1 neurology test
- 1 sports orthopedic doctor
- 2 different PCPs
- 4 MRIs
- 1st: Arthritis
- 2nd: Herniated disc
- 3rd: trochanteric bursitis, no arthritis (on pelvis)
- No change
- X-rays
- Hours and hours of yoga (and pilates)
- 1 personal trainer
- 1 arthritis doctor
- 2 blood tests where my ANA was positive, but was it?
And over the past 6 yeas, I've thought my pain might be caused by
- arthritis
- bone spurs/pinched nerve
- piriformis syndrome
- autoimmune disease
- fibroids
- anxiety
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