Welcome! and a Background (I)

(Before anything, I'm sharing a Drive where I upload my weekly progress in fighting my disease: link)

Welp, it's my first post and I'm a very bad story teller, not a very good combination as you can already see ;) To whoever stumbles on this, welcome to my blog. My name is Oscar and as the description says, I'm a sufferer of Neuropathy and Hypermobility, Chronic fatigue and pain, suggested Fibromyalgia, and all that nasty package that is well known by others who also won the genetic anti-lottery like me. I'm not an american, but I came to the US in January 2021 to study a physics PhD specialized in string theory. By now I'm a second year PhD student, so as a "string theorist" I'm very novice, and a very bad one! 

A brief introduction to those who don’t know about this syndrome. The typical story in us sufferers is that we live our first years pretty much like any normal person, except for some minor pains and odd symptoms that over years appear in different parts (like foot pain, back pain, stomach and bladder issues, nerve tingling and needles, hands that look purple and freeze from blood pooling, etc.). Usually as we enter adulthood, the symptoms start compromising everything and go from an annoyance, to be chronically debilitating, to sometimes be disabling (even severely so). This can happen in a matter of few years and sometimes, people that used to be very active find themselves bedridden very fast. The issues are very disparate and the most immediate thing is to go to a specialist for each problem that shows up, like to go to a shoulder specialist for the shoulder pain or a urologist for the bladder. Because of this, rarely any doctor will connect the dots, and unless the doctor is a specialist in the condition (which 99% of doctors are not), they’re usually at a loss. Many people don’t ever get a proper diagnosis or even suspect the whole thing is part of a syndrome, and if they do it can take years or decades to get it.

Because doctors won’t do it, mostly it is at the hands of the patient to persist and seek appointment after appointment, trying to see what’s wrong, all of this while feeling chronically sick. However, it turns out the cause is hard to diagnose in a proper test. A patient may have crippling neck pain, but on getting an MRI to the neck, many times nothing abnormal shows up. Blood tests, imaging, all that can turn out normal or with minor abnormalities that don’t reflect the severity of what one feels. Because of this and the fact we look outwardly normal, sadly a common experience is of being dismissed by doctors and given treatments that barely do anything to help, things like exercising, doing yoga or drinking more water. Doctors and people can tell us it’s depression or anxiety, that we look healthy and it’s all in our heads, which is absurd from our experience. Keeping up with work and other life activities becomes overwhelming, and as we start failing on our responsibilities, some people blame it on us being lazy. This of course doesn’t happen with people with other more known illnesses.  As such, the stigma by society and the medical community adds to the nastiness of the syndrome itself. Like any person, we go to the doctor thinking they’ll spot the cause, and give a treatment to treat or cure it. It only becomes obvious that there is no cure after many failed appointments and therapies, not even proper treatments, and that the condition won’t really ever improve. Accepting this new life full of nonstop pain and disability is a tough pill to swallow and takes some time to process and mourn.

Now that I’ve explained about the syndrome (if you have it you already know it anyway :) ), I can explain a bit of what I do. For those who don't know, string theory belongs to theoretical physics (it is very mathematical and doesn't involve experiments) and very broadly tries to describe and unify all the forces of the universe, like gravity and the subatomic forces. Theoretical physics is the same area Stephen Hawking studied (in his case it was applied to black holes) and in fact his work is used extensively in my area. I think most of you know about him. Black holes, wormholes, quantum theory, multiverses and many dimensions, all that fancy stuff some of you may have heard about belongs to theoretical physics. This whole string theory stuff is of course irrelevant to this syndrome and blog except for one thing: that this syndrome has a lot to do with failing muscles, and the muscular system is kind of a physics problem too!

The purpose of this blog is to tell a story about fighting my syndrome while I struggle keeping up with the PhD, and with a lot of absurd adventures in the way. Actually, this story goes back to almost two years ago, and I can do a small resume here. Although my condition has been with me all my life, many years back it was just annoying nerve tingling and some muscle pains, and only in the last years became severe and disabling, and left me bedridden most of the time. By bad luck the thing became excruciating just after I was accepted in the PhD (in March 2020) and was about to fly to the US (in January 2021). I flied borderline disabled and made desperate attempts in my room, trying to find some strengthening (a-la physical therapy) that could decompress the nerves and hence stop my decay. I could luckily get precisely that (over many months of testing with myself), and started recovering around June 2021.

Since it's the first post, this will be quite long in explaining my background and a summary of what these years have been, what I have learned and where I am now. If you don't care about my background you can skip to sections 3 or 4. This story of being saved from perdition is quite epic (but that’s my bias of course :) ) so I suggest to pick some song you like to play along for extra spice.

 

First years

In the first years after I was born, my mom was told by a pediatrician that I was "hyperelastic". My elbows tended to dislocate and I had to use metal rods from my hip to the feet to fix a problem of dislocating knees. However, that’s so far back I didn’t remember it, and my mom forgot to tell me this extremely important fact (lol), so I was unaware I was hypermobile until recently. As a teen, I was known by some friends as the "Red", because of my red cheeks and hands. They could draw funny faces there, as when pressed, the skin would turn yellow and the blood would take some time to refill it. Not everything was fun tricks, sadly. I started having episodes where my left neck would become extremely stiff and painful. I had many episodes in which my left chest didn't let me breathe without stabbing pain. Since it was felt at the same zone as the heart, we worried it could be a heart issue, but later exams showed my heart was healthy, which was odd. Other problems were ankles sprains, POTS and extreme fatigue when exercising, hands with blood pooling (they'd turn purple and hurt with cold), TMJ (jaw pain) and extreme sweating when doing any activity compared to my peers (but I assumed it was normal).

A few years later in my late teens, I joined a gym and noticed my left arm (at elbow specially) fatigued a lot when lifting, and also that arm would not grow no matter how much I lifted. Some years later I developed a left arm tingling and the elbow started to snap and hurt more, so I went to doctors to see what could be done about it. I tried the standard PT exercises and swimming first. None of that worked quite well and after months of getting scans and doing therapy in vain, I got tired and abandoned the therapy and just lived with the issue. After the first therapies failed, I started thinking it could be a nerve problem because of the left arm tingling and atrophy. In a new round of appointments, now for the potential nerve issue, I was directed to neurologists, and had my first EMG tests which showed that I indeed had a damaged ulnar nerve on the left arm. However, further than diagnosing the problem, the treatments were pretty much the same as the ones that I had had before (bands, swimming) and failed. I was redirected from one neurologist to the next and it would all be the same thing. After many appointments over a year, again the therapies failed, I got tired and stopped going.

A few years later, more or less by the time I got into college for a physics degree, the left arm problem had become more chronic, with more nerve irritability there and now also at the neck. Over the college years I started having more problems with stiffness at the middle and upper back (specially the left side), in which I couldn't sit and bend my head down to read on my smartphone without feeling a bad midback burn after a few minutes. New nerves on the left upper back or blade seemed to be compromised due to that back stiffness, I started feeling nerve rays and needles there. I resumed the gym and got a left ankle subluxation when doing calf raises, which never got fixed and made the walking more uncomfortable. My right-hand knuckle also subluxated and made the grip more burning and painful. The problem became a major hassle, not disabling but limiting and annoying. Since the problem now involved not just the left arm but also the left neck and upper back, I now thought it could be a pinched nerve at the neck or shoulder, instead of just an elbow issue. With this idea I tried a new round of PT but for the left shoulder, but again it was unsuccessful.

The worse my condition became, the more evident it was that the problems were all tied together. My ankles, shoulders, blades, elbows were all failing simultaneously and that was not a coincidence. Something was wrong with my body. I also started to overwhelmed with the appointments and PT, given that I would need to check specialists for each issue, and only having therapy for one (the shoulder) was expensive and time consuming already, and not very effective.

 

The Downhill

Sometime later at the gym, doing deadlifts I got a bad lumbar strain which took 2 weeks to recover from. The injury didn't ever recover well and over a few years I developed lower back pain at the left lumbar, sometimes with nerve radiation going down the glute and leg. My left lower ribs started to sublux, and a new nerve seemed to have pinched there, giving left trunk irritability. I developed plantar fasciitis, and the hip didn't cushion the steps well. Without noticing, I stopped sitting much and started being more time laying at bed, which I blamed myself on being lazy. My personality became number and my thinking strangely became more fogged over time. I lost focus and intensity in my physics studies, as if my brain couldn't process things as well as before, which was made worse by not being able to sit and write for long. I started getting anxious and got ticks like pulling my hair. I had to stop the gym and any other things I liked like sports or concerts since they damaged me further.

By now it was too obvious it was a full body problem which mainly affected my whole left side, much more serious than what I thought was just a shoulder problem. I could associate these behavioral problems with the body decay too, although it was not clear how beyond "the pain makes me do those things". It was not clear what the cause was, it could be a purely muscular/joints issue, or be an autoimmune disease, a virus, or brain or spinal cord issue, etc. My default position was that it was a purely muscles and joints problem (with pinched nerves which caused other issues), but I needed to discard the rest. I got a new appointment with a neurologist, who suggested it could be central sensitization or fibromyalgia, a misfiring of my brain signals to the nerves. I was given pills to address the possible brain issue but it didn't work. That sucked but actually I was relieved, since that meant it wasn't a problem with my brain. I was also suggested by her that my red cheeks and other circulation issues I had were tied to the fibromyalgia. The neurologist consultations were expensive so again I stopped going and just lived with the problems, which were now debilitating, but still allowed for doing everyday activities.

Some years later, I graduated college and after working sometime on the family business, I decided to apply to a String Theory PhD to the US. I spent 2019 doing the application, and just after I sent it by the end of the year, the Covid pandemic hit. I got admitted on March 2020, but couldn't fly for the Fall due to the pandemic. Meanwhile, my health situation had deteriorated more in the last years. I found myself spending most of the time on the bed and evading walking or effort as much as possible. I developed bleeding blisters on the feet, my socks would break due to the bad feet impact and my running got very compromised because of the harsh impact at my hips. The sleeping became more and more strained in these years, it'd become difficult to sleep, and I would wake up with completely sweated pajamas and some white spots on my clothes. I developed a slight stuttering and also a slight degradation of vision on my left eye (so I got new glasses), which really scared me since now my senses were affected. It made me paranoid and revived the idea that it could be a brain thing or a tumor.

I started to read a lot more about my symptoms and anatomy to try to see what could possibly be wrong. In searching for answers, I arrived to the r/ehlersdanlos subforum in Reddit, a forum of people diagnosed with Ehlers-Danlos Syndrome. The site would show a lot whenever I googled my issues (subluxations, chronic pain, nerve radiation, brainfog, etc.), the symptoms matched exactly although I didn't have a formal diagnosis. I was surprised and warmed to find a community of people that suffered just like me (I mean that’s obviously terrible but you know what I mean), and knew just as well all the struggles of the syndrome and of going through the medical system. I could read stories of people who lived with the syndrome for decades, even rich people with access to the best treatment and multiple surgeries. I realized that it was not about the doctors I specifically saw, but that no doctor knew how to fix it. It was baffling since it seemed to be "just" bad joints and pinched nerves, but no doctor knew how to cure a bad hip or knee, or neck pain and headaches, or a stupid pinched nerve, much less all of the joints together, in a definite way that goes beyond "try this and see if it helps". Doctors just "treat" but people keep living with the issues, they're not really fixed. Maybe this was good enough for normal people, but in my case, I was condemned to keep getting injured, and getting more bedridden in response, and then atrophy due to lack of exercise, and then injure again, the condition only getting more and more severe over time with no way to stop the decay. My condition was already terrible so that meant I would end more fully bedridden and needing a cane or a wheelchair soon enough if it didn't get better.

Rationally I felt doomed and hopeless, but I also thought (like most with my illness, I think) that the treatments given by doctors were not very effective nor clever... it was obvious that swimming or yoga, or light band work, or drinking more water or healthy foods (I already ate healthy) or a pill wouldn't repair a totally crap body and fix my pain and neuropathy. I tried all of it and it didn't help whatsoever, the neuropathy only became more severe over years despite this. The therapies were targeted for each body part and were light, which was absurd for a case like mine in which everything was so compromised. Everything was bad and it was not a coincidence, there must be correlations between the separate joint problems I had. It must be a disorder in the full body's muscular structure. There had to be a way to fix it or I'd be screwed forever. I thought the only way to fix it was by fixing all the body’s muscles in simultaneous, not part by part, in some way. Hopefully other things like the neurological and fatigue symptoms would also go away with the increased stability and the decreased muscular strain over the nerves and other things.