Struggling with lack of good healthcare, and reaching acceptance

[Exuro89]

At the beginning of last year I hurt my wrist/hand(dorsal radial side) while playing too much guitar. I took some time to stop playing it, then tried again and it still hurt. A few weeks later the pain got a little better, but never stopped being there. Anything I would do with it would cause pain in various places of my wrist and hand. I went to my work's medical clinic to see what they had to say about. They thought it was tendonitis, told me to ice and stretch it for a few months. I did so, but it didn't stop the pain. I was then referred to an Orthopeadics, 4 months after the medical clinic. In less than a minute the hand specialist told me I had carpal tunnel syndrome, then gave me a steroid injection, scheduled a follow up 2 months later and had me on my way. My pain continued to exist. When I went to the follow up meeting I told the doctor that the injection didn't do anything, and that the pain I'm exhibiting isn't a symptom of carpal tunnel. He told me that my options were to find another clinic, or get the surgery. He said that an mri and nerve conduction test most likely wouldn't show anything. I opted to find another doctor. What I didn't realize is that the clinic I went to was basically the only relatively large clinic in our town.

I eventually found another clinic that would accept me, as the others I called don't handle hand/arm injuries. The doctor at this clinic was really nice, though not a hand specially, but a general orthopedic doctor. I explained my symptoms to him and he agreed that it wasn't carpal tunnel, but the only thing he could offer was to put me in for a nerve conduction study in another town, and that it would probably take a year to get in. I was surprised that it would take that long and asked if we could get an mri of my wrist/hand. He put in for the mri, which would take 3.5 months to get in. I eventually get that mri, and it ends up that they only got the hand and not the wrist, and there were no abnormalties of the hand. I end up only learning that it was the hand months later when I can view the mri file. At the time I figured, oh this could be tms, but I really want a nerve conduction test done to confirm.

I go back to the first Ortho place, to the same doctor.He does some clinical scrapes of my wrist to test the nerves, and doesn't find anything wrong with the radial nerve(where my pain areas are). He says he doesn't know what's wrong with me, still unwilling to do scans and issue a nerve conduction test, and instead says that I should schedule with a spine specialist at their clinic. I do so as I'm getting pretty desperate and hey, I've had injury depression now for about a year at this time and spent a lot of time at home balled up on the couch feeling bad about how I can't do anything anymore. Maybe I healed and formed a new injury that just happened to be in a similar place. So, I schedule for the spine specialist, 2 months later. We discuss the pain I have, she has me do some movements to check for pain in my neck(there is none) and shoulders(none as well). She wants to get an mri of my neck. Insurance however wants me to do pt for 6 weeks first, so I do that. I get the mri, it shows nothing special. She says that she wanted to do a nerve conduction test(yay) but after getting a steroid in my spine. I currently have that scheduled for the end of october, which is many, many months later that that appointment...

This is very much a rant thread about lack of quality doctors and how slow healthcare is for me. I learned about TMS a few months after getting injured and see a lot of it in me. Given that I haven't been able to get the scans I've needed done I can't possibly get to an acceptance stage of TMS, and honestly feel like a bad idea to do so until doctors can tell me that they don't know what I have beyond a reasonable doubt(vs just not ordering the scans for insurance reasons or other). Has anyone gone through this? I've developed mad health anxiety now, insomnia, not to mention I'm in pain everyday so some of the things that I love to do(and don't love to do) hurt to do. I'm kind of at the point where I feel like the damage is done, my nerve has healed incorrectly, and now I'll have to deal with this for the rest of my life. It's something that I can kind of be fine with, but one of my concerns is that if I use my hand will my symptoms get worse and worse, will I end up starting to lose function? Given that doctors are taking their sweet time to tell me anything at all I don't know what to do and I feel like I get stuck in the fear cycle frequently.

This is all fairly salad but I wanted to vent after learning my last appointment was pushed back 3 months. Any thoughts or insight is appreciated.

 

[JanAtheCPA]

I can't possibly get to an acceptance stage of TMS, and honestly feel like a bad idea to do so until doctors can tell me that they don't know what I have beyond a reasonable doubt

Hm. Well, this is a quandary.

The thing about chronic pain which is caused by an overly sensitized nervous system, aka neuroplastic or "learned" pain, aka pain caused by the stress of emotional repression, aka what Dr Sarno termed "TMS"... the thing about this kind of pain, and the entire point of Dr Sarno's thesis, is that doctors are never going to be able to give you a diagnosis, either positive or negative, "beyond a reasonable doubt" because you are demanding that they explain intractable pain for which there is no physiological explanation. You have to ask yourself: at what point are YOU going to believe that you have received that definitive answer? I'm going to guess the answer is "never", because the brain mechanism which has you in its grip of fear and despair wants you to stay that way.

Thus the quandary. If this is the condition that you place upon your ability or your willingness to accept that there might be a different explanation, you've already backed yourself into a corner.

What if I told you that many of us reject this idea of 100% belief? The whole point of a learning program (like our Structured Educational Program) is to increase belief with knowledge.

It does, however, require an open mind, self-honesty, and a willingness to be emotionally vulnerable. That's a lot to ask of some folks.

A suggestion: I've been around this forum for thirteen years and I've lost track of the number of times that musicians have come here looking for answers to their wrist and/or hand pain. It is a LOT. You can do a keyword search on "musician hand pain" which (if those terms aren't considered too common by the search engine) will probably turn up plenty of these references. More positive will be a search using the "More..." options, and limiting your search to general wrist or hand pain only in our Success Stories subforum. Each time you do a search, there will be two tabs - pick the second tab to see results only from our forum.

If you're interested in continuing, we're here to support your emotional self discovery with many resources (I can point you to a recent thread where someone else provided a good rundown). However, it's important to understand that on this forum, we aren't going to buy into your assumption that you were suddenly and mysteriously injured by playing "too much" guitar.

The nature of how your pain suddenly and mysteriously appeared is indicative of the TMS brain mechanism at work. The significant number of medical examinations and interventions you've already had, with entirely insignificant results, makes a TMS assumption more likely.

You're at the "what have you got to lose?" point. I would urge you to let go of the medical obsessing for now, since none of the professionals you've seen has indicated that there is anything urgent which needs immediate treatment. Our two programs are free, most of the books are available at public libraries, and all of the many other resources we recommend are free on the internet.

The phrase we often use here is "stop thinking physically, and start thinking psychologically". A good place to start if you're interacting here is to prevent yourself from going into tedious symptom and exam details (if it's neuroplastic/TMS, the details don't matter, and if it's not, this forum is not the right place) and just say "my hand pain" to refer to your symptoms.

Good luck.

 

[Scanh]

Yes, yes, and YES to everything Jan had to say! I spent two years obsessed with figuring out the cause of my pain while every doctor I saw told me something different than the last. They weren't sure, and my pain and test results never quite fit, so I went into the rabbit hole of research, trying to be my own physician. That was two years with the benefit of things like, "Ok, let's do an MRI. Can you do it tomorrow?" Given the sloth-like speed of care where you are, I might have spent much longer trying to get a definitive answer before giving Sarno's ideas a sincere go. Once I did, I recovered rapidly and discovered that I had wasted two years and so much money.

It sounds like you are bumping up on two years yourself.

The only thing I might add to Jan's advice is to read Sarno's "Mindbody Prescription" and "The Divided Mind" if you haven't already. For some people, just becoming aware of what may really be happening is enough to put pain out to pasture. It wasn't for me, but doing things those books suggested, along with a bit of involvement and reading within this community and another (now seemingly dead), was everything I needed.

 

[HealingMe]

A lot of great advice above me.

I too felt like I needed to get to the bottom of things with my symptoms. I went through a CT scan, an MRI, bloodwork for autoimmune disorder, and each one either showed nothing or something. One doctor disagreed with the scan while another pushed for more testing. I was exhausted with being thrown around from doctor to doctor. I was healthy several months before my pain started. I worked out religiously, took supplements, and ate pretty clean. I drove myself mad researching what I had on forums. There is so much crap and fear on the internet!

In my gut, I knew none of it made sense so I made the decision to do the SEP program and stop going from doctor to doctor. As I continued doing the work, I began noticing strange things. My pain was moving around to past injuries and also disappearing completely. My doubt began to disappear gradually and I gained more confidence.

I say, just do it. What do you have to lose?

 

[Exuro89]

Hm. Well, this is a quandary.

The thing about chronic pain which is caused by an overly sensitized nervous system, aka neuroplastic or "learned" pain, aka pain caused by the stress of emotional repression, aka what Dr Sarno termed "TMS"... the thing about this kind of pain, and the entire point of Dr Sarno's thesis, is that doctors are never going to be able to give you a diagnosis, either positive or negative, "beyond a reasonable doubt" because you are demanding that they explain intractable pain for which there is no physiological explanation. You have to ask yourself: at what point are YOU going to believe that you have received that definitive answer? I'm going to guess the answer is "never", because the brain mechanism which has you in its grip of fear and despair wants you to stay that way.

Thus the quandary. If this is the condition that you place upon your ability or your willingness to accept that there might be a different explanation, you've already backed yourself into a corner.

What if I told you that many of us reject this idea of 100% belief? The whole point of a learning program (like our Structured Educational Program) is to increase belief with knowledge.

It does, however, require an open mind, self-honesty, and a willingness to be emotionally vulnerable. That's a lot to ask of some folks.

Yeah beyond a reasonable doubt is too strong of a request I agree. My issue lies more in that books like The Mindbody Prescription and The Way Out say to get checked out by a doctor for structural issues. I don't feel like I'm getting adequetly checked out. Like if you think you broke a bone you get an xray. If you go to the doctors saying you think you broke a bone and they say "Yeah I don't think you did" and dont get an xray ordered, is that considered being checked out? Doctors are people too, and people make mistakes. I think I messed up a nerve but am not getting a nerve conduction study, abeit any time soon. This conundrum makes me feel like I'm stuck at this stage.

A suggestion: I've been around this forum for thirteen years and I've lost track of the number of times that musicians have come here looking for answers to their wrist and/or hand pain. It is a LOT. You can do a keyword search on "musician hand pain" which (if those terms aren't considered too common by the search engine) will probably turn up plenty of these references. More positive will be a search using the "More..." options, and limiting your search to general wrist or hand pain only in our Success Stories subforum. Each time you do a search, there will be two tabs - pick the second tab to see results only from our forum.

If you're interested in continuing, we're here to support your emotional self discovery with many resources (I can point you to a recent thread where someone else provided a good rundown). However, it's important to understand that on this forum, we aren't going to buy into your assumption that you were suddenly and mysteriously injured by playing "too much" guitar.

The nature of how your pain suddenly and mysteriously appeared is indicative of the TMS brain mechanism at work. The significant number of medical examinations and interventions you've already had, with entirely insignificant results, makes a TMS assumption more likely.

I don't think it's far fetched to get injured via overuse. I was playing multiple hours a day multiple days a week. I'm fairly confident there was an initial injury. Whatever it is I'm dealing with now though, I'm not sure if thats from the injury as the symptoms are similar but different or if I learned the pain. I got into a very depressive state afterwards, and definitely didn't have a perfect life before it occurred.

Thank you for the keyword search recommendation.

You're at the "what have you got to lose?" point. I would urge you to let go of the medical obsessing for now, since none of the professionals you've seen has indicated that there is anything urgent which needs immediate treatment. Our two programs are free, most of the books are available at public libraries, and all of the many other resources we recommend are free on the internet.

The phrase we often use here is "stop thinking physically, and start thinking psychologically". A good place to start if you're interacting here is to prevent yourself from going into tedious symptom and exam details (if it's neuroplastic/TMS, the details don't matter, and if it's not, this forum is not the right place) and just say "my hand pain" to refer to your symptoms.

This is where I feel stuck. If professionals aren't doing anything urgent, is it the case that it's because they don't think it's urgent, or because they don't care? These doctors are backed up for months with patients, I'm just another pea in the pod, and not a typical case, so why spend the time caring for me? That's the thought process I go through.

Yes, yes, and YES to everything Jan had to say! I spent two years obsessed with figuring out the cause of my pain while every doctor I saw told me something different than the last. They weren't sure, and my pain and test results never quite fit, so I went into the rabbit hole of research, trying to be my own physician. That was two years with the benefit of things like, "Ok, let's do an MRI. Can you do it tomorrow?" Given the sloth-like speed of care where you are, I might have spent much longer trying to get a definitive answer before giving Sarno's ideas a sincere go. Once I did, I recovered rapidly and discovered that I had wasted two years and so much money.

For your case you had the appropriate scans done correct? If I can't get that work done I'm not sure trying to approach things as mind-body will work since I'll have that doubt lingering. I'm glad you were able to address your issues.

The only thing I might add to Jan's advice is to read Sarno's "Mindbody Prescription" and "The Divided Mind" if you haven't already. For some people, just becoming aware of what may really be happening is enough to put pain out to pasture. It wasn't for me, but doing things those books suggested, along with a bit of involvement and reading within this community and another (now seemingly dead), was everything I needed.

So I've actually read a few books, namely Mindbody Prescription, The Way Out, and The Great Pain Deception. Currently wrapping up The Divided Mind. Very fascinating reads that gives me hope, and want to dive fully into. I tried a few times before to do that, to ignore the pain going on and try to live each day as if I were fine. I ended up getting terrible health anxiety and sleep issues during the winter that I'm still trying to address. I tried thinking about these things as symptom imperatives, but my pain never really moved around, I've just added more problems.

Thank you for both of your comments. It's good to be heard. I do want to try the SEP, and I've read through Gordon's program. I just don't know that I can squash the doubt I have without someone in the medical industry being able to tell me that there isn't a structural issue, or the pain I'm in doesn't make sense, etc.

 

[Exuro89]

A lot of great advice above me.

I too felt like I needed to get to the bottom of things with my symptoms. I went through a CT scan, an MRI, bloodwork for autoimmune disorder, and each one either showed nothing or something. One doctor disagreed with the scan while another pushed for more testing. I was exhausted with being thrown around from doctor to doctor. I was healthy several months before my pain started. I worked out religiously, took supplements, and ate pretty clean. I drove myself mad researching what I had on forums. There is so much crap and fear on the internet!

In my gut, I knew none of it made sense so I made the decision to do the SEP program and stop going from doctor to doctor. As I continued doing the work, I began noticing strange things. My pain was moving around to past injuries and also disappearing completely. My doubt began to disappear gradually and I gained more confidence.

I say, just do it. What do you have to lose?

That's fair. My mind likes to go into survival mode when my hand gets really angry, the "Oh no what if I'm doing permanent damage by using it" and then I revert to being a husk on the couch. "I need to let it rest and heal" which, hasn't worked so far, but that's what my brain is telling me to do. I've definitely driven myself mad as my symptoms don't seem to line up with any common/uncommon conditions I've found online, so you probably understand that stage that I'm at. Having little progress on diagnosing what could be wrong is where I feel stuck. If there's something or nothing, i don't really care, I just want due diligence done.

 

[Scanh]

For your case you had the appropriate scans done correct? If I can't get that work done I'm not sure trying to approach things as mind-body will work since I'll have that doubt lingering. I'm glad you were able to address your issues.
.

Perhaps I could have been a bit clearer: I had to reach an absolute crisis point before I became willing and able to take Sarno's approach and apply it. Without that crisis, I probably would have continued on and on down that rabbit hole. I was NEVER going to be entirely convinced based on what doctors and test results were telling me. The crisis was what got me thinking, "Sarno does make a lot of sense, and I have a lot of the traits that put me in the "likely to have TMS" camp, AND I'm at my wits' end, so what could it hurt to really do the journaling, thinking psychologically, and working to believe that my pain was caused by my brain and nothing more?"

I think something Jan said is worth plagiarizing here for emphasis:

the thing about this kind of pain, and the entire point of Dr Sarno's thesis, is that doctors are never going to be able to give you a diagnosis, either positive or negative, "beyond a reasonable doubt" because you are demanding that they explain intractable pain for which there is no physiological explanation. You have to ask yourself: at what point are YOU going to believe that you have received that definitive answer? I'm going to guess the answer is "never", because the brain mechanism which has you in its grip of fear and despair wants you to stay that way.

Thus the quandary. If this is the condition that you place upon your ability or your willingness to accept that there might be a different explanation, you've already backed yourself into a corner.

What if I told you that many of us reject this idea of 100% belief? The whole point of a learning program (like our Structured Educational Program) is to increase belief with knowledge.

It does, however, require an open mind, self-honesty, and a willingness to be emotionally vulnerable. That's a lot to ask of some folks.

Have you done this PPD self-questionnaire? If you haven't, consider doing so. It may give you more confidence in what we're telling you, and it may get you to consider some things you hadn't yet thought of.

 

[JanAtheCPA]

In addition to the PPDA test, I'm thinking that another pretty quick self-test that might be worth your while, @Exuro89 is the one I describe in this thread (the subsequent comments are also interesting):
https://www.tmswiki.org/forum/threads/aces-quiz-online-printable-versions.27061/ (ACEs "quiz" - online & printable versions)

 

[HealingMe]

That's fair. My mind likes to go into survival mode when my hand gets really angry, the "Oh no what if I'm doing permanent damage by using it" and then I revert to being a husk on the couch. "I need to let it rest and heal" which, hasn't worked so far, but that's what my brain is telling me to do. I've definitely driven myself mad as my symptoms don't seem to line up with any common/uncommon conditions I've found online, so you probably understand that stage that I'm at. Having little progress on diagnosing what could be wrong is where I feel stuck. If there's something or nothing, i don't really care, I just want due diligence done.

Yeah, believe me, I didn’t workout for over 3 months because I was convinced I was going to injure myself further. One doctor told me I had tendonitis, one scan apparently showed I had pelvic congestion syndrome on both sides yet I only experienced pain on one side that moved around to my back, knee, toe, glute, and my jaw.

You don’t have to jump into using your hand right away. I didn’t jump right back into working out. I focused on doing the SEP program here. I built a proof sheet. All of this was going on while I was on the tail end of visiting doctors. The fact that one doctor had a different opinion from the next was proof to me that something wasn’t adding up here and my mind was involved. I was about to book a referral at the Mayo Clinic but I was so tired of the doctors that I told myself I’d only pursue it AFTER I tried the work with MBS.

By the way, your symptoms will be very unique to you and your fears.

 

[Exuro89]

In addition to the PPDA test, I'm thinking that another pretty quick self-test that might be worth your while, @Exuro89 is the one I describe in this thread (the subsequent comments are also interesting):
https://www.tmswiki.org/forum/threads/aces-quiz-online-printable-versions.27061/ (ACEs "quiz" - online & printable versions)

This one is a little interesting, scored a 0/10 I don't believe I was every really abused as a kid, or at least enough to have repressed emotions. The biggest things in my childhood had to deal with moving states and losing all of my friends, not really fitting into the new area, but it's not something I've really thought about much.

Have you done this PPD self-questionnaire? If you haven't, consider doing so. It may give you more confidence in what we're telling you, and it may get you to consider some things you hadn't yet thought of.

8/12, but I don't really know what that's supposed to tell me, or that I should take it with anything more than a grain of salt. I'm not one to make a leap of faith and this definitely feels like that type of thing. I've read through Alan Gordon's Program which I find to be very helpful in general, TMS pain or actual pain. I want to start on the SEP to give it a go, but I don't know what I should expect progress to be. Given that my symptoms feel consistently inconsistent the only kind of progress I can think of is more in a change to me reacting to the symptoms rather than seeing a diminish in my symptoms, given somedays its minimal and other days its pretty rough.

Yeah, believe me, I didn’t workout for over 3 months because I was convinced I was going to injure myself further. One doctor told me I had tendonitis, one scan apparently showed I had pelvic congestion syndrome on both sides yet I only experienced pain on one side that moved around to my back, knee, toe, glute, and my jaw.

You don’t have to jump into using your hand right away. I didn’t jump right back into working out. I focused on doing the SEP program here. I built a proof sheet. All of this was going on while I was on the tail end of visiting doctors. The fact that one doctor had a different opinion from the next was proof to me that something wasn’t adding up here and my mind was involved. I was about to book a referral at the Mayo Clinic but I was so tired of the doctors that I told myself I’d only pursue it AFTER I tried the work with MBS.

By the way, your symptoms will be very unique to you and your fears.

Yeah I guess I'm convinced that even though I have what could be considered inconsistent symptoms, that they being nerve symptoms doesn't make them unreasonable to have, ie stabbing/burning/aching from little before wrist up to one of the finger knuckles, doing activities or not. If I had like muscle/tendon pain and that was moving around, or the nerve pain was move outside of that area yeah I could start to believe that things may not be as they seem. A proof sheet sounds interesting but I'm hard to convince without looking at all of the angles, so I'm not sure I could make one that convinces me. For doctors I feel my excuse is that I have an uncommon injury and most doctors only see commons ones. I'd love to be wrong.

Something that has helped me somewhat, at least with hope, is finding success stories and reading through those that are somewhat similar to my case, ie similarish symptoms, starting with an injury. Just finding people that I can see myself in and them recovering gives me hope. That's more of the evidence that I like to have. I understand that symptoms are different for different people, but I see less about nerve pain and more about general pain.