Wednesday, December 26, 2018

My Psychosomatic Pain: How I fully recovered from RSI/Tendonitis/Carpal Tunnel in 2009

Hi.  I'm DDRKirby(ISQ) and I am a survivor of "Repetitive Strain Injury/Tendonitis/Carpal Tunnel Syndrome" (emphasis on quotes).  I suffered from chronic debilitating wrist pains from 2008 to 2009, to the point where I could not operate a computer for any reasonable length of time without feeling severe pain, and seriously considered dropping out of my university's Computer Science program (or at the very least taking a sabbatical/medical leave to recover), as well as never using a computer again.  I recovered in June 2009 over the course of about a week.  That's right, my year-long pain took 1 week to heal from.  Over the course of that week, I FULLY healed, 100%.  Since then I have been typing and using computers for hours daily and remained been pain-free for the past 9 years (and counting).  It turns out that [spoiler alert!] my chronic pain was actually an instance of psychosomatic pain (caused purely by mental facilities).  This is the story of how that all came about.

I have shared my experiences with a few people personally, but I have never shared it publicly on my blog because I feel that it falls into a certain social gray area that is looked upon with a certain stigma.  However, I feel like this issue is being brought more and more to light as time goes on.  Recently, Otto "SilentWolf" Bisno, a former prolific Super Smash Bros Melee player, shared a video detailing his own personal experiences with a very similar pain recovery.  This video inspired me to share my own story in the hopes that it will at the very least, spread awareness of these issues.  If I can help even one person recover from debilitating pains, then it is entirely worth suffering this social stigma.  Mental health issues such as these are still treated with much less attention and respect than they deserve, but hopefully by talking about them more we can start to change that prevailing attitude.

This is a somewhat personal story, so please read it as such.  Thank you.  I really do apologize for the length of the story, but I felt like I should retell it as a whole to really give everyone the entire context.  This was quite some time ago so I apologize in advance for any details which I have mistakenly gotten wrong.



The Onset of Pain

My wrist pains started in the Summer of 2008, when I started working at my first summer internship.  I was typing and using a mouse during this 40hr/wk internship in addition to using a computer at home, so it "made sense" that I would start suffering some side effects from the increased usage.  The pain started in my right wrist and manifested most frequently when I was using my mouse at work, but also persisted to some extent during other activities.  One of my co-workers used a Kinesis Keyboard for ergonomic reasons, and I reasoned that this whole ergonomics thing was quite serious business.



First Measures (Unsuccessful)

Wanting to start take proper care of my wrists immediately, I switched to using my mouse with my left hand at work to decrease the usage of my right wrist (I kept it on the right hand at home to balance my usage).  Taking breaks from continuous usage was unanimously agreed upon to also be vital to recovery, so I also installed Workrave, a program which reminds you (and/or forces you) to take routine breaks from keyboard and mouse usage.

In addition, I started to diligently research into ergonomics articles online to figure out how I could best alleviate any possible root causes of my wrist pain.  What I found was frustrating and confusing, as most of the literature online offers entirely conflicting viewpoints on what is actually ergonomic vs not ergonomic.

A basic question such as "should I use a wrist rest" had no reliable answer from any reputable source, as far as I could tell.
- Some articles claimed that using a wrist rest helps "cushion" the tension placed on your wrist.
- Some articles claimed that using a wrist rest applies extra pressure to the underside of your wrist, which can compress the carpal tunnel and pinch the median nerve
- Some articles claimed that using a wrist rest can help with achieving a better wrist angle, prevengint you from bending your wrist and cutting off blood circulation.
- Some articles claimed that you are supposed to rest your PALMS on wrist rests, not your wrists themselves.
- Some articles claimed that you should not be resting your wrist on ANYTHING, and instead "hovering" your wrists above the keyboard or mousepad.

Regardless, I tried as best I could to do things that seemed "sensible".  At least I was trying to do =something= about it.  I hoped that the mouse switching, keyboard breaks, and increased focus on ergonomics would help me recover.

...it didn't.  The pain continued, and even worse, my left wrist was now being affected.



Physical Therapy

My internship ended, and I went back to school.  My pain was annoying and I had to constantly monitor my computer usage and take keyboard breaks, but I could still more or less function normally.  At around this time I started to undergo physical therapy to help my wrist muscles and tissues recover.

During my first round of physical therapy I was given several wrist-stretching exercises to do on a regular basis to help improve circulation as well as loosen up any tension I had in that area.  I did these quite religiously and regularly in addition to everything else I had been trying so far.  I had also switched to an ergonomic-type keyboard at this point.

The pain persisted, and began to get progressively more severe.



The Specialist


At this time things were really starting to become a serious problem, so I went to go see a specialist doctor/physical therapist.  The specialist identified all manners of problems that they said were causing my pains.  They told me my posture was all wrong and I wasn't sitting up straight, which was cutting off the circulation to my wrists, causing the wrist tissue to be inflamed.  The specialist did all sorts of things to help me, including:
- Putting my hands into heated parafin wax to help blood flow and circulation
- Using electrical stimulation (literally running electricity through my wrists and arms) to encourage muscles to relax
- Administering (painful) pressure point massages to my shoulders and back to loosen up my posture and tight muscles
- (Probably more things that I'm forgetting about)
They also gave me more stretches to do, as well as the homework of improving my posture.  In addition, they had me soak my arms alternatively in hot and cold water baths.  I also stopped using a mouse altogether and switched to using a trackball, to avoid having to move my wrists around as much.

By this time my physical "rehab" was pretty much a major factor in my daily life.  Most of my (sympathetic) friends were well acquainted with my condition since I was constantly doing arm stretches and trying to shake the tension out of my wrists.  Between the hot/cold baths, physical therapy sessions, arm/wrist stretches, ergonomics advice, keyboard breaks, and posture exercises, I was spending a LOT of time dealing with this problemThis was starting to adversely affect almost everything else in my life.  I couldn't play computer games (playing on my nintendo DS still seemed fine, thankfully).  My Computer Science homework took significantly longer to do due to the fact that I could only type for a minute at a time before having to take a break.

To make matters worse, I was also in the middle of one of the most (if not THE most) work-intensive CS class in the undergrad curriculum (CS140 - Operating Systems).  I had to ask the course staff for extensions on several of the projects, explaining to them that I was severely impaired in my ability to work.  At this time in my life I was also dealing with depression, loneliness, struggles with gender identity, and a crisis/conflict over my major (my parents wanted me to be a EE major, which made no sense).  At the recommendation of a close friend and RA, I had started undergoing counseling services at the university.

At this time I continued to do research into ergonomics, this time focused on maintaining good sitting posture.  Unfortunately, I received just as many conflicting pieces of information as before.
- Some articles claimed that sitting up straight is bad for your back and that you should lean backwards at a 135-degree angle to your legs.
- Some articles claimed that you should instead be bending forward by 10-20 degrees.
- Some articles (and basically all Asian parents, for some reason) claimed that you should place one or more cushions on either the seat or against the back of your (already-cushioned) chair to "help" with posture (this has never once made sense to me)
- Some articles claimed that you should avoid using cushions or chairs that have too much cushioning, as they don't offer enough actual support



Drastic Measures

At this point it probably seems like things couldn't really get any worse.  But they did.  I somehow managed to survive until the end of the school year and told myself that I would use this summer to REALLY cure myself once and for all.  I stopped blogging.  I installed speech-recognition software on my computer and started dictating in lieu of using my hands at all.  I was really trying everything I could.

...it didn't work.

At this time I was enrolled in my university's Summer research internship program.  It was not going well.  I felt completely incompetent as well as intimidated of both my peers and mentors and despite my efforts to brute-force my way through it, at the end of the day it wasn't just impostor syndrome -- I really didn't know what I was doing and I was stressed out of my mind.  To make matters worse, the program was quickly becoming a liability for my physical health, as it was preventing me from being 100% computer-free.

This was honestly one of the lowest points I have had in my life thus far.  My wrist pain had taken away not only some of my greatest passions in life, but also potentially my future career and trade.  My friends remained sympathetic, but my parents tended to focus instead on what I did wrong.  Why did I let things get this bad?  Why did I not stop using the computer earlier?  This is really bad now.  Like rubbing salt in fresh wounds, this didn't help my sanity or happiness.

At this point I really didn't know what I was going to do with myself.  I'm pretty sure I started to cry when I realized the very real possibility that this was not something that I would ever cure in my life.



Finally, a Light in the Tunnel

I resigned from my internship program, informing them that my pain was getting severely worse and that I was unable to continue working without jeopardizing my physical rehabilitation.  At the very least, I wouldn't have to think about that anymore.  At this time, one of my seniors in the program told me they wanted to chat with me about possible ways to recover.

This person (who quite honestly turned my entire life around) told me about an alternative approach to recovering from RSI/Tendonitis/Carpal Tunnel/etc.  He informed me of a condition called "Tension Myositis Syndrome" which it seemed like I was probably suffering from.

The intro page to TMS says:

Have you struggled with chronic pain or another medically unexplained symptom for a long time? Have you tried everything to alleviate your pain, but nothing worked? Have you had doctors tell you they "just can’t find anything wrong?"

Then you may have Tension Myositis Syndrome (TMS). TMS is a condition that causes real physical symptoms that are not due to pathological or structural abnormalities and are not explained by diagnostic tests. In TMS, symptoms are caused by psychological stress.



Some Disclaimers

Let me make some things to you right off the bat.  The very existence of TMS has not been rigorously proven and is not accepted by the medical community at large.  While there are literally HUNDREDS of success stories (including this one) about TMS-related issues, peer-reviewed medical evidence that proves that TMS techniques are effective, and even a Harvard RSI Action Group that endorses this approach, the general opinion is that this pseudoscience at best, and hogwash at worst.

I will address some of this at a later point.  For now, let's continue with my story as it happened in 2009.



I have TMS!

The idea behind TMS is that repressed emotions and/or psychological stress triggers a distraction mechanism which manifests itself as psychosomatic pain, which is then misdiagnosed as any number of chronic pain symptoms (RSI, Tendonitis, Carpal Tunnel, you name it).  Essentially, your mind and body create real, physical pain as a way of distracting you from your repressed emotional issues.

The more I read about TMS, the more convinced I became that this was what I was affected by.  TMS occurs frequently in perfectionistic, people-pleasing, "Type A" people (like me).  It claims to be closely correlated to repressed emotions, and especially, external and internal stress.  The onset of pain frequently occurs along with a significant and stressful life event, such as a new job (ding ding ding), marriage, death of a loved one, and so on and so forth.  The pain typically gets more and more severe as it begins to control and affect one's life, and becomes even worse in times of stress.

- The onset of my pain occurred at the start of my first internship.  I was quite intimidated and afraid of screwing things up at this time, which was quite stressful.
- I had several emotional issues throughout the year as I mentioned earlier.
- The pain got more and more severe the more I tried to do about it.  In fact, it seemed that the pain was directly proportional to the amount of time and energy I spent thinking about it.
- The WorkRave keyboard monitor program, in particular, exacerbated the pain incredibly as it constantly reminded me that using the computer was BAD and causes PAIN.
- The pain reached its worst point during my summer internship, when I really felt like I was worthless and didn't know what I was doing.
- It made very little logical sense that certain activities involving my fingers and wrists (using keyboards and mice) caused me pain, but others (playing with my game boy, writing with a pen, using an arcade stick controller) didn't.



Immediate Relief

This was it!  This explained literally everything I had been going through for the past year.  My initial skepticism was quickly replaced by incredulity, then hope, and finally a feeling of reliefThis was the first time in literally 12 months that I had felt genuine HOPE in curing my pain.  And this hope was an incredibly powerful feeling.  Literally as I read the information on the TMS website, I literally began feeling my pain subside.  Knowing that the pain was not "real", and knowing that I could heal from it, knowing that I could go back to living my LIFE, instantly reduced my pain by over 50%.  Maybe even more.

I excitedly started typing an email reply to the person who had linked the site to me.  I typed it on my shitty, unergonomic laptop keyboard.  I typed and typed and typed, and for the first time in months, it didn't hurt.  I knew then that I would be cured.

It still took me some time to fully recover from my pain (as I said, around one week).  Knowing that the pain is psychosomatic is literally half the battle (50% of my pain went away instantly), but I still had to go through the other half -- affirming myself, fully convincing myself that the pain really was psychosomatic, addressing my mental health, and of course, dealing with my repressed emotions.  I bought a book to learn more about some ideas behind psychosomatic pain.  But honestly, the first step was the most important of all -- simply reading about the idea of TMS on a website.  There are several sites dedicated to helping people who may be suffering from TMS and other related psychosomatic pain disorders.  This page is a fantastic place to start.

And that was it!  It really was that simple.  After all of those ergonomic changes, physical therapy, lifestyle changes, keyboard monitors, stretches, and posture exercises (none of which helped), the one thing that actually worked was literally just reading a website and reading a book.  That's it.  I educated myself, changed my way of thinking, and stopped letting my pain control my life.

And I've been 100% pain-free for the past 9 years.  I'm not talking about "oh, yeah, sometimes it comes back, I just have to be aware of it and keep it in check so it doesn't resurface".  I'm saying I literally have zero worries about wrist pain whatsoever now.  I can type or play games or do anything as much as I want and I won't feel pain.  THAT is what is means to recover from TMS.



My Personal Viewpoint on TMS and Psychosomatic Pain

Psychosomatic pain, as it relates to Repetitive Strain Injury, is a very contentious topic, because it directly opposes traditional practices behind treating RSI.

- In a traditional approach to RSI, you need to immediately STOP all activity that involves the strained muscles/tissues, to give them time to heal and recover.  If you continue to use these muscles, the physical condition will become more severe.
- In the TMS approach, you should RESUME normal activity directly involving the painful areas.  The idea is that you should not be letting the pain control your life.  The pain in this case is psychosomatic, so it is NOT indicative of a real physical debilitation, and will not get worse.

This is where TMS gets into a lot of trouble.  For example, if someone twisted their ankle, you obviously would not tell them "keep walking and playing sports like you normally do" because that is clearly going to worsen their condition and endanger their health.  Similarly, if someone has a real, physical debilitation with their wrists (a tumor, a fracture, an infection, a pulled muscle), the TMS approach would make things worse, not better.

This brings us to the question...



How do I know whether I have Psychosomatic Pain or "Real" RSI?

Unfortunately this is a very difficult question to answer at this time, with the little that we know about the mind, body, and how they function together.  The first and most important thing I will tell you is this: Please consider both possibilities.  I firmly believe that awareness and mindfulness will serve you better than anything else.

The way that most people tend to think about differentiating psychosomatic pain from "real" RSI is:
"You should first get a physical examination from a traditional doctor, to rule out the possibility of any actual physical debilitation.  If that doesn't find anything, then maybe you can try the TMS thing."
I wish that this was the right answer.  But when I went to a specialist, they specifically told me that there WAS something wrong with my wrists.  They pointed to "inflammation" or "microtension" or whatever else they called it, something about tendons and soft tissue and blahblahblah, but they made it sound like a very real problem affecting the muscles and tissues in my wrist.  But their diagnosis was incorrect, because my pain was 100% psychosomatic.

And I think a lot of people often get these sorts of explanations from doctors, about "inflammation" and "micro-tears" and the like.  But based on my experience, I don't think we can always take them at face value.  I'm not saying that these doctors are trying to lie to you, or scam you into costly procedures.  Most likely they are genuinely trying to help you, but unfortunately our current medical knowledge about this type of chronic pain seems to not always be able to diagnose these issues accurately.

So personally, I think it's important to consider both possibilities, get a second opinion, and more importantly, logically go through some important questions to ask yourself regarding the nature of your pain.

- How legit does the medical explanation sound?  Is there an actual structural anomaly in the affected area? (e.g. "your bone is literally fractured.  You can see it in this X-ray")  Or is it something more nebulous? (e.g. "soft tissue inflammation")
- Was the onset of my pain associated with a stress-related event or change in my life?
- Is the level of pain correlated with emotional health and stress, or with the physical use of the related muscles?
- Are you a very perfectionistic person who is hard on yourself?
- Has the level of pain worsened as more time is spent attempting treatments?
- Has the pain moved around to different areas of the body, or been prone to suggestion and/or worries? (ex. "oh, you think the pain is bad now, wait until it spreads to your elbows!" followed by pain in your elbows very shortly afterwards)

Alternatively, you can see a doctor who specializes specifically in TMS, which may be a great second opinion to get.

My personal recommendations would be to mindfully look into both approaches (traditional and psychosomatic) and make informed decisions based on what comes out of each of them.  If you have been trying physical therapy for 2 months and nothing seems to work or provide lasting relief, maybe your pain really is psychosomatic after all.

One last note on this subject: In the case of an actual physical issue, I always like to tell people that I think mental health is always very important regardless of whether your issue is psychological in nature.  Even if you don't have or even believe in psychosomatic pain, traditional medicine still tells us that it is very clear that mental health affects physical health and vice-versa, and it can only do you good to ensure that you are taking care of yourself mentally as you try to fix your physical issues as well.



TMS is Pseudoscience

There is a lot of evidence that psychosomatic issues in pain and chronic pain are very real and that the treatments prescribed to victims of psychosomatic pain are often extremely effective.  However the mainstream medical community has not accepted the theories around TMS.

The original theory by Dr. Sarno goes something like this:

"According to Sarno, TMS is a condition in which unconscious emotional issues (primarily rage) initiate a process that causes physical pain and other symptoms. His theory suggests that the unconscious mind uses the autonomic nervous system to decrease blood flow to muscles, nerves or tendons, resulting in oxygen deprivation (temporary micro-ischemia) and metabolite accumulation, experienced as pain in the affected tissues."

I personally don't feel confident in this entire theory.  While it may (?) be true that chronic psychosomatic pain is caused by some sort of oxygen deprivation, my impression (as someone who is totally unqualified to actually judge these issues) is that we really don't have enough understanding into how the mind and body are connected to tell what the exact mechanism for psychosomatic pain is.  For this reason, when I discuss these issues, I tend to use the more general term "psychosomatic pain" rather than the specific theory of Tension Myositis Syndrome (TMS).

Regardless of whether or not TMS is the "right" explanation for psychosomatic pain, we know that psychosomatic pain is very real, and is something more people should be aware of.



Ergonomics may as well also be Pseudoscience

This whole experience has understandably made me much more doubtful of our knowledge of ergonomics as a whole.  I already outlined earlier how frustrating it was to find conflicting advice and studies that disagreed with each other in terms of best keyboard/mouse practices and posture.  Perhaps several of the ergonomics and posture advice that we are accustomed to is just old wives' tales, just like some of the most faulty common cooking advice that has been passed down through generations ("Flip your burgers only once", "Searing locks in juices" -- both of these have been proven incorrect by scientific studies).

This is one of the reasons why I think we should consider both psychosomatic pain and ergonomic root causes when diagnosing chronic pain.  People often argue that TMS is a load of crap because it's not very well understood, but I honestly think that a lot about ergonomics and posture are also not very well understood.

That said, I do think posture and ergonomics do =matter= and there are some things that are clear, even if not everything is fully understood.  For example, I know that for me, sitting on the floor for extended periods of time (as opposed to in a chair) tends to make me physically uncomfortable, so I try to avoid that.  "Lift with your knees not your back" is another thing that is both sensible and important.  And if I have to use the edge of my thumb to click with a trackpad over and over and over again, it starts bothering me simply because it's uncomfortable to keep pressing the side of my thumb against the trackpad constantly.  So it's not like physical pain is a lie or anything or that there is no such thing as bad ergonomics.  You still need to do things in a way that makes you physically (and mentally!) comfortable.

However, it seems like there is this weird cultural belief that if you sit with anything less than a 100% straight back, then you'll get idiopathic scoliosis or something, which is simply not true.  I personally think mindfulness is the most important rather than adhering to an extremely strict or rigid set of rules or restrictions on what you should and shouldn't do.  The way you stand and sit and hold yourself ought to mindfully facilitate both physical and mental happiness.  Think positive, not negative.  For example, taking a deep breath and stretching your muscles, reminding yourself to smile and relax instead of tensing your shoulders -- these things sound great!  You will probably feel happy both physically and mentally for doing these things.  Constantly worrying that you are sitting in the same position for too long, or forcing yourself to adopt a sitting or standing position that does not feel natural to you -- these sound more like things that could lead to trouble.  Always feel free to try out different postures at your own pace, but in the end, if something is causing you pain, it's might not be right for you.  For example, if you tried a standing desk and started to feel pain in your legs or back, maybe it's not right for you (of course, you can try using it a different way).  I know there is this prevailing black-and-white view that "sitting too much is the root of all evil" or whatever, but I think we should try to be a little more open-minded about these things.



Takeaways

I know I wrote about a ton of different things and probably rambled for too long so I will try to wrap up with some tl;dr bullet points.

- If you think you have chronic pain that may be psychosomatic in nature, please educate yourself and read up on it!
- Psychosomatic pain is a very real thing and should be carefully and seriously considered in conjunction with traditional approaches to chronic pain.
- I think we should really do a better job of spreading awareness of mental health issues such as psychosomatic pain.  I had no idea it existed and I bet many other people could benefit from this knowledge.
- Unfortunately, it seems that mainstream medicine can be unprepared to properly diagnose psychosomatic pain, so it is important to be mindful of pain and consider second opinions.
- Ergonomics is still a gray area in many regards, so mindfulness is important here too.
- Above all else, don't forget that mental health is important!  When we ignore our mental health, it can progressively worsen to the point that we become physically ill.  We ought to not let things get to that point!

Thank you for reading!  If you have any questions about any of this, feel free to contact me personally.


No comments :

Post a Comment