While I wasn't very happy about the diagnosis of Fibromuscular Dysplasia, it matched my symptoms across the board and made sense. It felt relieving to have an answer and to finally be able to.... ya know, STOP LOOKING!.... And start trying to come up with a plan. As mentioned in my last post, my brain MRA was completely normal, so although my CTA showed beading in many other organs, there was nothing significant.... in the places that pose a danger (and my heart was included on the scan) there was nothing at all. The stenosis was really mild and being able to see the scans myself and have the Vascular doctor walk me through each one was helpful. But what he determined is that this is a case of Fibromuscular Dysplasia he usually finds by accident when looking for something else (this is why he thinks it's actually common, but not commonly diagnosed... at least that was my understanding..? Don’t quote me!). So ultimately, we barely talked about FMD or got to any of my questions about training with FMD because he does not think it is significant enough to be causing the claudication so, instead we talked about his differential... which felt a little like an episode of House minus the grumpy doctor. I don’t know if it was the remote format or the doctors personality, but I felt very much like a copilot here instead of just a passenger and that was nice.
This was my first remote doctors appointment, and I've gotta say I liked it more than I thought I would. I got a lot of time with the actual doctor which was nice, and he was only 5 minutes or so behind schedule. I like when a doctor can actually touch and listen to and see ME.... but with a CTA of my chest down and an MRA of my neck up.... He's seen more of me than anyone else! ;) I also made sure to sit at my computer with my running medal display behind me... not to be arrogant or show off... but to remind him how *my* blood flows and what *my* heart rate is, and what *my* expectation of optimal is....n=1!!! He did notice. He said "you are trying to intimidate me with your medals." and I said "is it working?" Then he told me a quick story about his run on the River today, which made me feel good. Runners know what’s up.
Ultimately he determined that the doppler tests and ABI tests I previously had done for the Popliteal Artery Entrapment were done based on the norm. He is not surprised that the reading they got from me was normal because it might not be *my* normal... so his feeling is that it could be a false negative because my fitness level is not the norm (Even though right now I can't run to save my soul and relate more to people just trying to maintain a healthy image than ever before!). That has been my thought all along. How can they just determine that I’m fine based on a scale they’ve developed with people who don’t love their lives like I do abs don’t have a vO2max of 65 (and don’t even know what vO2max is)... so they are essentially scheduling all of that again. He does not feel like Popliteal Artery Entrapment Syndrome (PAES) is off the table and also doesn't feel like Chronic Exertional Compartment Syndrome (CECS) is off the table, but he doesn't think it is either of those things, just that we haven’t been thorough enough with testing. He suspects that maybe there is an injury or a dissection in one of the arteries due to the turbulence heard. I don’t totally understand, but it sounds like there are 3 layers of the arteries, and if an inner layer were injured, the CTA won’t show it... so I'm redoing the doppler test with longer harder running to see if I can get a positive that way first, (He literally told me to start running again to prep for this so that I become symptomatic quicker... so much for never running again!). Then I will be getting an ultrasound/camera in my arteries, to hopefully find out what’s going on. If all else fails I'm going to be getting the Compartment Stryker Test done again since I did get a positive with that. ....
I'll be really happy to just shove a camera up my arteries, because that is the only test remaining to my knowledge to rule out PAES, because I've been so convinced it is this all along, I’d really like to complete that path. There’s a type called Functional PAES.... and from my understanding it’s harder to find because even 60 seconds rest between exercise and the test can make the test negative. In terms of the dissection... that seems to explain some of the very slight beading of my arteries...? Maybe...? I don’t know-I’m new to this vascular thing... We'll see! But... ugh... here we go again!
So I guess all this and last post to say I barely have a rare disease that maybe isn't actually rare and that most likely wont effect my life the way we initially thought, but we still don't know that for sure... And we still don't know why my calf is bothering me the way it has been, which sucks... but on the plus side, at least breaking 3 hours is back on the table as a goal, and if I figure this out there is still hope for me to run fast.... because as of right now there is no evidence that I need to be concerned as much about my blood pressure ... but the doctor said "just put a pin in hard running and lifting for now until we are sure"
Yeah, I'm confused.... but the folks at Mass General seem committed to running every test to get to the bottom of this. Good thing I gif my life insurance already, because tests of this nature don’t look so good!
How I Found a Rare Disease
It's been quite some time since I blogged any content related to running.... but exactly a week ago I made a major discovery that will most likely change my approach to my running goals forever. I learned that those calf "injuries" weren't from poor training choices, not enough strength, imbalances, weak pelvic floor or nutrition... They weren't really running injuries at all! I discovered I have a rare disease called Fibromuscular Dysplasia. I don't really know much about it, except for that it is beading and twisting in the arteries that impacts the blood flow and that it is most commonly found in the renal arteries (Kidney), and Carotid Artery (brain), and it can also be found in the Mesenteric arteries (intestines) and the Iliac arteries (LEGS!)... I'm sure you can guess at least one place where I have it!
I have it in BOTH illiac artieries (and the mesenteric and the renals)
So that explains the issues I'm having with my groin and calves.... and also why everything seems to take an eternity to heal!
So when I say rare, I'm talking "less than 1000 active cases in the US" rare (quoted from My Doctor at Mass General Hospital one of the few Hospitals in the world to have a center for this disease. Thank God I live in Massachusetts!). They suspect it's one of these things that is "rarely diagnosed" but maybe more common than we know. Think about people you've heard about having a stroke in their 50's or 60's... It's possible it's from Fibromuscluar Dysplasia... It's just not something people are doing a lot of research on or looking for. So how did someone like me discover this diagnosis in myself? If you've been following me on Instagram, you know it's been a three year hustle, but if you're stumbling on this blog because you just got the sucker punch I did (living with a rare disease) then I want to tell the back story and as I go forward I'll blog anything relevant. Doctors appointments, Training (maybe?), exercise, diet... Things I've tried to do to live with this.... who knows. I just want to put it all down somewhere because right now there is NOTHING for FMD and Exercise and, well, I'm bout to blaze a trail.....
I'll start from the very beginning (since it's a very good place to start.) When did symptoms first show up? Well I didn't know it at the time, but they showed up about 3 weeks postpartum. I was having weird symptoms (loss of vision and shortness of breath) and I found myself in an ambulance with suspected blood clot postpartum. They did an MRI of my brain without contrast because I was breastfeeding. We had only introduced the bottle once and it didn't go well... and I hadn't pumped enough yet to feed her full time for the 48 hours. We agreed that if anything came up on the MRI without dye we'd take a closer look with dye. Nothing came up. I was relieved because the MRI to the brain was the most traumatic scan I've had in my life. I did not know I was claustrophobic until that moment. I told my husband "I never want to do THAT again!)
Anyway... after that I had vision tested it was perfect and then I got mastitis and it seemed like maybe that had something to do with it... so I just forgot about it. I read online various accounts of hormones effecting ones vision for no reason, so... I ain't got time to keep looking! I got 7 months until the Boston Marathon (I qualified right between my two pregnancies) and two years to qualify for the Olympic Trials LETS GO!!!!
At 12 weeks postpartum I started running again, but noticed pain in my abdomin. I also noticed I couldn't really go to the bathroom without bearing down. I consulted Doctor Google who said I needed a Pelvic Floor Therapist. After about 2 weeks of therapy, I passed with flying colors... But for some reason still struggled to take a shit? Whatever. I was cleared to run, so all the weird things I feel must be normal and I will just heal as I progress postpartum! Moving on!
Then came the groin pain and the calf pulls. I don't know which was first or what order anymore... but I was either in pain from my right groin or my left calf. I could run with the groin pain but it was constant. The calf pain didn't bother me most of the time, but when it was triggered, it was debilitating and took 6-8 weeks to heal. As you can imagine, this made it impossible to run Boston, but... I could still OTQ if I could just get my SHIT together.
SO I thought I just needed even more strength training and it would get better... So I did that for 16 weeks but got injured when I ran after Strength ONE time. It's like I couldn't take a SINGLE risk or it was Game Over. So then I did it for another 16 weeks.... But nothing was really working. Don't get me wrong- I still put in some decent training between the calf pulls and got pretty fit at times. Workouts pointed to 2:55-2:53 marathon with only 5 days per week of running. I did 20 milers a few times, lots of workouts, but nothing EVER felt GOOD. The amount of "extra" stuff required to keep me training was just.... ABNORMAL. Again, I could not move a single piece in the wrong direction or it was lights out!
I read everything I could on postpartum injuries. There was a lot suggesting that the Relaxin from breastfeeding could slow healing time.... I wasn't going to stop breastfeeding on account of running, but at this point I was at like 10 months PP... I wanted to do a year... I can deal with it a bit longer. When I started weaning at 13 months Maebel made it clear she was totally down with stopping.
I stopped breastfeeding and the placebo kicked in... Everything was good again! or was I just getting better at faking it? I still couldn't shit, still couldn't see, still had groin pain, still had headaches... BUT WHAT THE HELL! OTQ 2020 baby! When you have the talent to qualify for the Olympic Trials, but your window of opportunity is closing, you throw everything into it even if it doesn't make perfect sense! (hindsight is 2020... this was never going to happen). My calves were actually not that bad for this stretch. At this point it was my feet that were bad. My plantar faciitis was horrific. I was supposed to run the Shamrock Marathon. I thought I could run about 2:55 based on training. Working on concrete was KILLING ME (I thought)! I stopped wearing flats and ONLY wore sneakers EVERYWHERE I went. I did drills just to wake up in the morning. Put my feet in warm water to start the day, tried night splints, tried KT tape, tried arch supports over the counter. If I went a day without sneakers I couldn't walk the next day. How did I ever normalize this in my head!? I had been so far removed from normalcy that I didnt' know what it was to feel comfortable running anymore, this was my new normal and at some point I accepted it and forgot that it's not what everyone or anyone experiences. I kept training. There were days I couldn't walk but somehow I could run "just get through the first mile, I'll warm up" ... and I did warm up, but then I'd have to recover and do it again which required time and money and help. I couldn't let up for a single minute or I'd be injured again (even though as I write this... I'm like "girlfriend, You were already injured"). Finally the foot thing got so bad I really couldn't walk. A week before Shamrock, I pulled the plug. I was convinced I was going to tear the fascia right off if I raced for the duration of the marathon. I saw a podiatrist. I got custom orthotics and shockwave therapy. This felt like a game changer. I trained again.
This training cycle we took a new approach. NO WORKOUTS. We set the goal to qualify for Boston since I missed out, and only focus on easy running and keeping long runs short. I didn't do any medium long runs, I supplemented by doing 45 minute runs and jumping into spin class with no break. I never ran faster than 7:20 pace at any point in training or in the race. It worked. I was also seeing a Massage therapist once a week. She specialized in vascular massage, and kept telling me that I have no issues with my calf muscles "it's your blood! you're body is not going to supply blood to your feet and calves if it can't supply blood to your organs. Your organs are hot, for some reason you aren't getting blood" ... I inquired about this with a few other sources... they were kinda not taken seriously.... and to be honest, she was in a weird earthy crunchy office. Just massage me lady and quit telling me these quack theories! I didn't book her again once the marathon was over. She was EXPENSIVE and a 50 minute drive. But I did end up qualifying for Boston. Those orthotics must work! I was a little concerned though because I lost feeling in my feet for 5 weeks after! FIVE WEEKS! I saw the podiatrist again thinking I had a Mortons Neuroma. Nope. sigh. Weird... Probably nerves from tying shoes too tight. OH WELL! That means I can train hard again! I wont OTQ but BOSTON 2020! Let's GO!!!
Started training again and pretty much immediately pulled my calf after I did one day with 6 x 20 second strides . TWENTY seconds of hard running! WTAF!? It was literally the FIRST week I took off from Chiropractic care (for those keeping track at home... I've spent life savings at this point, but at this point ) New PT, new Plan, more strength training, a 12 week pelvic floor program (because I still can't shit like normal) more MRI's, checked for blood clots in my legs, squatty potties. I gave up gluten, I gave up cheese, I gave up sugar. I gave up everything inflammatory to see if it would make things better. Now I'm pissed. Now I'm really confused. I feel like I can't even live anymore! I pulled my calf hiking at my 5 year olds pace! I have been thinking about compartment syndrome for about a year, but no one would test me for it because it's invasive... so I'm trying like hell to get someone to test me. No one will. Then COVID... now I can't get someone to test me even if I wanted to. I did virtual Strength training 2x a week and came up with a plan! I started training again after I was cleared by PT with NO IMBALANCES in May of 2020. This is great. Boston is in September, now I can recover, get this treated, and run Boston (hahahahahahahahahahahahahaaaaaaaaaa Hindsight of 2020) . I did a gradual increase of walking and running. Then I got to a 6 minute running interval and BOOM. Calf Pull. Fuck you 2020.
The PT suggested an Ankle Brachial Index test just to see if there's any change in blood pressure, and if there was then there might be compartment syndrome. The ABI was positive. WOW! The first time in almost three years that anyone has found anything definitively and tangibly wrong when there SO CLEARLY IS SOMETHING WRONG! Still, no one seemed to be taking my case serious enough to get me in for a compartment syndrome test, so I drove 2 hours to my Orthopedic friend and she did it. It was positive in all 4 compartments but the results were weird. Now her colleague suggested surgery, but she really didn't like the result and neither did I. The name of the diagnosis is Chronic EXERTIONAL compartment syndrome. But I had a positive test before exertion and exertion didn't make it worse. It didn't make sense!
I researched like crazy and kept coming across Popliteal Artery Entrapment Syndrome being co-morbid with Compartment Syndrome. I found a support group of people with both. I started getting information about what I needed to be tested for this. It took 2 months for insurance to approve vascular medicine for me. I went to vascular and their Doppler test was negative. WTF, that's weird... it HAS To be this! I've read EVERYTHING! I told him about my massage therapists theory... He didn't respond much but asked me to do some squats. Then they listened to my arteries and "heard turbulence"... and ordered a CTA from my abdominals down to my feet. He warned me that I may never run the way I want to or... ever... again. I thought for sure I had Popliteal entrapment. While I waited for my results I read everything I could about the surgery and recovery because I had found people online running after it, so I was confused! It wasn't making sense! And why did he order a CTA? The support group said the Angiogram should be next? So many questions!
On my drive to get my results, I called my sister. I was like "I'm a little pissed because when they did the CTA they didn't ask me to exercise first and based on the support group that's the key to getting diagnosed! I told her the CTA was a horrible experience and I didn't want to do it again! The contrast made me feel so sick. I told her "The only thing worse was the time I had my brain scanned... As long as I don't have to do that again!" ... and I SHIT YOU NOT... The VERY first words out of the Doctors mouth were "Three years ago you had an MRI of your brain... You didn't get contrast... You need to do it again" ... and that's when I found out I did not have Popliteal Artery Entrapment syndrome. That's when I found out that my pressure in my legs was high because my blood pressure is higher from the arteries twisting... Thats when I found out that I couldn't go to the bathroom normally because my intestines and kidneys weren't getting full blood supply, That's when I found out this could be in my brain impacting my vision. Thats when I found out to whacky massage therapist was right about everything... and that's when I found out that I *may* never run the Boston Marathon and that the photo below is the closest I'll get to the finish line. But because of COVID, my qualifying time might still count. We don't know yet! So if I'm qualified, there's a chance I could walk/run it... Who knows!?
It was quite the sucker punch at first, but since then I found out I do not have any signs of this disease impacting my brain which greatly reduces my risks (but WTF with my vision?!). I'm being switched over to the Fibromuscular Dysplasia center with a Vascular Medicine specialist... and I will learn more soon!
I didn't arrive at this easily. If I didn't live near one of the best Hospitals in the world, who knows if I would have found out? Running may be the only reason I ever found it... and perhaps it will allow me to take medication to prevent stroke or heart attack. I don't know if I'll run again... I hope so... but for now, I'm absorbing as much as I can and reading for the next round. I'm very proud of how I advocated... and even in the face of people telling me I just should stop running, or that it wasn't worth it... I kept on going... Because I know my body, and I am not going to settle for anything less than my absolute best. So I'm going to be learning my new "Best" and documenting it here... and I hope it will help me process it all, and maybe help someone else down the road.
Anyway, I didn't reread because my brain literally hurts. SORRY, BYE!
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.