Welcome to INTJ Forum

This is a community where INTJs can meet others with similar personalities and discuss a wide variety of both serious and casual topics. If you aren't an INTJ, you're welcome to join anyway if you would like to learn more about this personality type or participate in our discussions. Registration is free and will allow you to post messages, see hidden subforums, customize your account and use other features only available to our members.

Sign in to follow this  
Followers 0
heracles

My Perplexing Malady

I wrote most of this in a zine 19 years ago, but have edited and added to it for this post:

This perplexing condition of mine seems to have begun 21 years ago (age 19), when I was in college, but a year later seemed to reach its peak intensity, when I was working the graveyard shift of a check processing center called "Systematics".  It's very hard to describe, perhaps impossible.  But I'll try.

The main bodily focal point is just right of the left shoulder blade.  It can't be described as "pain" in the usual sense of the word, but it's a very unpleasant feeling.

It seems to inhabit the very borderline between the mental and physical, so though I call it a "feeling", it isn't just a vague emotion, or perception.  It's quite physically localized.  The next main bodily point I feel it is the left top of my skull.  Other points, all on the left, are my wrist, thigh, the area above the buttock, and upper foot.  For all this time my whole left side has always felt slightly "dead", though again, this word is a poor approximation to the actual sensation.  It's a bit like one feels when a rock gets lodged in the tread of ones shoe, and your walking unevenly.  This is the more benign aspect of the condition.  The worst, often coming up in the middle of the night, is the pulsating, throbbing, streams of "quasi-pain" in the previously mentioned bodily points.  It's much like the cringing feeling many people (including me) experience when they hear and see someone scratching a blackboard with their fingernails, or the maddening sensation of having a piece of food stuck in their teeth that won't come out.  The difference though, is that (1) my "malady" has no discernible, objective cause, and (2) it's so intense, it crosses the border between a mere psychological discomfort to a palpable, somatically localized one (shoulder blade, skull, thigh, etc.)  Another way to describe it is, it feels like cornflakes, styrofoam, straw or some other similar irritant is lying beneath my scull, on the surface of my brain.

I am able sometimes to alleviate it, usually only briefly, by scratching the affected area.  Sometimes I tap my skull with a hammer, back of a hairbrush, or whatever's available, which I realize sounds like a little more extreme remedy, but sometimes seems more effective.  Strangely, running a flobee hair cutting machine over it seems to alleviate it as well.  But it's only for the time I'm doing that.

At 24 I went to a doctor about this and had an EEG.  He looked through the printout and said he found nothing abnormal.  I told my chiropractor about it but he just looked at me like I was weird.

At 58 I still have this.  Fortunately, kratom, which I started taking in the evening a couple years ago, totally eliminates it, just as it pretty much eliminates my other nagging joint pains.  But I still have it during the day, and the amount of kratom I take, 10-12 double-zero capsules, seems to becoming gradually less effective.

I doubt anybody here will have any experience with this or anything like it, but I thought I'd fire this shot in the dark and see what responses I get.

 

Share this post


Link to post
Share on other sites

Posted (edited)

I thought I remembered a post of yours from awhile back stating that you had schizophrenia?  Did you ever take any anti-psychotics?  It might be an unusual presentation of akathisia.  And I think kratom has been used as a opium substitute.  That might explain why it gives you some relief and why it is also becoming less effective over time as your body builds more tolerance.

Edited by Palladium

Share this post


Link to post
Share on other sites

Posted (edited)

Thanks.

I've said in posts here I believed I'm probably a schizoid, not schizophrenic.  My Dad was diagnosed paranoid schizophrenic, but I have doubts he was.  I think he was just very depressed.  My uncle, his brother, was definitely schizophrenic.  He contracted it at about 17 and committed suicide in his mid-40's.

I don't see myself as psychotic or delusional or irrational at all.

Yes, I'm aware that you build a tolerance to kratom and that it has opium properties.  But I'm sure it's much safer.

I'll look into akathisia.  I wonder why none of my doctors ever mentioned this.  This "sensation" I've had all these years isn't really debilitating, just sometimes maddening at its very worst, and I'd just like to understand it or know if anybody else has it.  Somehow, it's seemed centered around the left eye and optic nerve as well.  I saw on 20-20 how when people cover their left eye they tend to get a feeling of well being, but if they cover their right eye, they get a feeling of anxiety.  I tried it, and yes, I get that too.  Maybe mine is more pronounced than most peoples'.

Edited by heracles

Share this post


Link to post
Share on other sites

Posted (edited)

Benadryl is supposed to help a bit with akathisia.  Maybe you could try taking some and see if it helps?

Edited by Palladium

Share this post


Link to post
Share on other sites

I skimmed and spot read the akathisia Wikipedia article and watched a few YouTube videos on it, and the symptoms don't fit what I'm experiencing.  Mine is distinctly on my left side and very different from "pain" in the usual sense.  I am often restless and fidgety, but nowhere near what I saw on YouTube.

Share this post


Link to post
Share on other sites

Not all akathisia presents with such clear clinical symptoms as the YouTube videos. Some people just have this intense internal restless feeling.  If you try the Benadryl, I'm interested to know if it makes a difference. 

Share this post


Link to post
Share on other sites

Not this?

Quote

Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of myofascial pain and have high rates of comorbid temporomandibular joint dysfunction. 20–30% of people with rheumatoid arthritis and systemic lupus erythematosus may also have fibromyalgia.[21]

-Wikipedia

 

Share this post


Link to post
Share on other sites
On 3/23/2017 at 6:27 PM, heracles said:

I'll try it and get back to you.

I'm reading the Wikipedia article on diphenhydramine and having reservations about benadryl.  It doesn't sound that pleasant or safe.  Kratom, l-tryptophan, valerian and melatonin are working pretty well for me, and even if they may have their downsides, they're the devil I know.  Would benadryl work better than these?  Could I take it with them, or some combo?  I'm leaning against it at this point, but I'll keep reading and thinking about it and we'll see.

 
 
...... added to this post 17 minutes later:
 
19 hours ago, Paul Siraisi said:

Not this?

 

I think I've done some reading on both fibromyalgia and chronic fatigue syndrome trying to understand my "mystery aches and pains" and frequent lethargy, but a lot of symptoms didn't quite seem to fit.  For instance, in CFS your fatigue increases with exercise, but my energy tends to increase on my runs.

The thing about this malady I have is that the sensation is very much an anti-pain, a negative pain, a reverse pain.  I know that sounds incomprehensible, but it's the only way I can describe it.  It's as palpable and unpleasant as "conventional pain", but the feeling is distinctly different, which makes me wonder if anybody else in the world or human history has ever had it too.  Maybe this analogy could help.  When you get a novocaine shot at the dentist you "feel" your numbed face by the very fact of not feeling it.  Yes.  A contradiction.  But maybe you know what I mean.  (I suppose somebody more educated than I will have a sophisticated explanation or correction for me, but I doubt I'd be able to understand it.)

My left skull/brain FEELS different than my right.  Actually I FEEL my left skull/brain/eye, but I don't feel my right at all.  That is, my right feels normal, but left feels uncomfortable, "raw", "rubbed against", "bigger".  Same of course with my left upper back, thigh, etc.  (I'm feeling this right now.)

I can go days, weeks, or months without feeling or noticing this at all, but it always comes back.  I don't see any clear pattern, but I think emotional stress can play a role in triggering or exacerbating it.

Anyway, I'm mainly just documenting this.  I don't expect anybody to understand it, but it may be interesting or useful to neurology students, now or in the future. 

Share this post


Link to post
Share on other sites
1 hour ago, heracles said:

I'm reading the Wikipedia article on diphenhydramine and having reservations about benadryl.  It doesn't sound that pleasant or safe.  Kratom, l-tryptophan, valerian and melatonin are working pretty well for me, and even if they may have their downsides, they're the devil I know.  Would benadryl work better than these?  Could I take it with them, or some combo?  I'm leaning against it at this point, but I'll keep reading and thinking about it and we'll see.

 
 
...... added to this post 17 minutes later:
 

I think I've done some reading on both fibromyalgia and chronic fatigue syndrome trying to understand my "mystery aches and pains" and frequent lethargy, but a lot of symptoms didn't quite seem to fit.  For instance, in CFS your fatigue increases with exercise, but my energy tends to increase on my runs.

The thing about this malady I have is that the sensation is very much an anti-pain, a negative pain, a reverse pain.  I know that sounds incomprehensible, but it's the only way I can describe it.  It's as palpable and unpleasant as "conventional pain", but the feeling is distinctly different, which makes me wonder if anybody else in the world or human history has ever had it too.  Maybe this analogy could help.  When you get a novocaine shot at the dentist you "feel" your numbed face by the very fact of not feeling it.  Yes.  A contradiction.  But maybe you know what I mean.  (I suppose somebody more educated than I will have a sophisticated explanation or correction for me, but I doubt I'd be able to understand it.)

My left skull/brain FEELS different than my right.  Actually I FEEL my left skull/brain/eye, but I don't feel my right at all.  That is, my right feels normal, but left feels uncomfortable, "raw", "rubbed against", "bigger".  Same of course with my left upper back, thigh, etc.  (I'm feeling this right now.)

I can go days, weeks, or months without feeling or noticing this at all, but it always comes back.  I don't see any clear pattern, but I think emotional stress can play a role in triggering or exacerbating it.

Anyway, I'm mainly just documenting this.  I don't expect anybody to understand it, but it may be interesting or useful to neurology students, now or in the future. 

In your first post, you mention an EEG; have you had any other tests done? f-MRI? CT-scan?

It sounds like a frustrating condition (is that an okay word to use?). I wish you the best.

Share this post


Link to post
Share on other sites
22 hours ago, heracles said:

I'm reading the Wikipedia article on diphenhydramine and having reservations about benadryl.  It doesn't sound that pleasant or safe.  Kratom, l-tryptophan, valerian and melatonin are working pretty well for me, and even if they may have their downsides, they're the devil I know.  Would benadryl work better than these?  Could I take it with them, or some combo?  I'm leaning against it at this point, but I'll keep reading and thinking about it and we'll see.

Benadryl is just an over-the-counter anti-histamine.  It's safe; however, I'm not sure if it's safe to take with the other med/supplements.  I wasn't thinking long-term, just once to see if you noticed anything different.  It will make you drowsy, though. 

Share this post


Link to post
Share on other sites

A couple of things come to mind... they all center on your nervous system.

Have you considered that the condition is from drug use (medicinal or recreational)? The docs probably asked you already (and repeatedly). There are quite a few out there that can cause havoc on the nervous system particularly with long-term use or abuse. Something as seemingly innocuous as marijuana has 200 different psychoactive chemicals in it...and there is an outlying population that can have extreme reactions. Other medicines or illicit drugs have similar outlying demographics (moly and ecstasy come to mind). Medicines or illicit drugs (especially alcohol) have different effects on the juvenile nervous system. Your nerve ending are protected by myelin (a specific protein) sheaths which are not fully hardened until early adulthood. In my opinion, appropriate protection of juvenile myelin sheaths wasn't fully appreciated until recently.

It may also be worthwhile to consider chemical exposures... occupational exposures in particular as repeat or chronic exposure to chemicals can have long-term adverse health effects (as opposed to the more known acute effects). If it's related, I'd suspect organophosphate pesticides (or other cholinesterase inhibitors like carbamates). Cholinesterase aging (specific CNS damage) can occur from single high exposures to these or, more typically, it's cause from repeat exposure.

Lastly, there is a lot about degenerative nerve disease that is unknown... It seems to be one of the more heavily research and revised parts of medicine in the last 20 years. I recommend seeing a neurologist... they may have some ideas about cause and effect that would at least get you pointed in the right direction.

Best of luck.

Share this post


Link to post
Share on other sites

Every weird issue I have had has been diet related. Elimination diets (when supervised by a dietician, don't half-ass it like I did) are safe and can tell you within a matter of weeks if your problem is diet-related.

Share this post


Link to post
Share on other sites
14 hours ago, dala said:

diet related

Good point there are some conditions like Celiac disease that can lead to nerve damage as well. It's another reason to visit a neurologist.

Please login or register to see this link.

 

 

Share this post


Link to post
Share on other sites
On 3/25/2017 at 7:14 PM, efior said:

In your first post, you mention an EEG; have you had any other tests done? f-MRI? CT-scan?

It sounds like a frustrating condition (is that an okay word to use?). I wish you the best.

No, I haven't had those tests.  I suppose I should.  I may get around to it, but money may be a problem, and I hate going to doctors.  The one who gave me the EEG was a bit insulting.  He tossed off quite casually I looked like I had downs-syndrome or something.  This attitude's been pretty common for me with doctors.

 
 
...... added to this post 10 minutes later:
 
On 4/6/2017 at 2:41 PM, Nerdsmith said:

A couple of things come to mind... they all center on your nervous system.

Have you considered that the condition is from drug use (medicinal or recreational)? The docs probably asked you already (and repeatedly). There are quite a few out there that can cause havoc on the nervous system particularly with long-term use or abuse. Something as seemingly innocuous as marijuana has 200 different psychoactive chemicals in it...and there is an outlying population that can have extreme reactions. Other medicines or illicit drugs have similar outlying demographics (moly and ecstasy come to mind). Medicines or illicit drugs (especially alcohol) have different effects on the juvenile nervous system. Your nerve ending are protected by myelin (a specific protein) sheaths which are not fully hardened until early adulthood. In my opinion, appropriate protection of juvenile myelin sheaths wasn't fully appreciated until recently.

It may also be worthwhile to consider chemical exposures... occupational exposures in particular as repeat or chronic exposure to chemicals can have long-term adverse health effects (as opposed to the more known acute effects). If it's related, I'd suspect organophosphate pesticides (or other cholinesterase inhibitors like carbamates). Cholinesterase aging (specific CNS damage) can occur from single high exposures to these or, more typically, it's cause from repeat exposure.

Lastly, there is a lot about degenerative nerve disease that is unknown... It seems to be one of the more heavily research and revised parts of medicine in the last 20 years. I recommend seeing a neurologist... they may have some ideas about cause and effect that would at least get you pointed in the right direction.

Best of luck.

I never drank or even tried pot.  I was and still am very square.  I have taken Vicodin/Hydrocodone in the past, mainly as an anti-anxiety.  (It usually worked, but sometimes had the opposite effect.)  I now take kratom, and it's a godsend.  Maybe I'm an addict.

One thing out of my past I think might explain this condition.  About 9-12, I fell off a ladder backwards and banged my head on the concrete.  It felt large and fuzzy for a half-a-minute or so, but I recovered.  I didn't tell anybody, especially adults.  I didn't want to be chastised or fussed over.  (I always hated being fussed over and babied.)  Anyway, that may have caused a concussion, and maybe the results are ongoing.

I wrote this when it was flaring up to a more uncomfortable degree.  It's subsided a lot, as it often does.  I can go for days, weeks, maybe months barely feeling it at all.  Part of my question was out of curiosity, not so much desperation.  Maybe it's as much a question in phenomenology as much as personal health.

 
 
...... added to this post 11 minutes later:
 
On 4/7/2017 at 6:17 AM, Nerdsmith said:

Good point there are some conditions like Celiac disease that can lead to nerve damage as well. It's another reason to visit a neurologist.

Please login or register to see this link.

 

 

My diet's varied so much over the past 40 years I've had this I really doubt it plays much role. 

Share this post


Link to post
Share on other sites

What you are describing actually appears to be a form of tic, like a physical form of tourettes. Or it could be a very minor seizure. If it was not happening AT THE TIME of the EEG, it would not be spotted. 

I knew someone who had something similar and the EEG would light up very faintly in a small portion of the brain. 

That said, I developed a very severe tic about a year ago, with a feeling very similar to what you described. Like a nails on blackboard type of discomfort. 

Turns out that antibiotics to fix a long term stomach infection had allowed resistant bacteria to colonize my gut. It was producing some sort of acid that neutralizes a lot of neurotransmitters. causing some pretty severe physical and psychological side effects. 

Just happened to come across a paper written about the subject, and the doctor was saying that 4 out of 5 of the patients he saw ended up coming back positive for this acid in their urine tests. So he treated them with probiotics and most recovered. 

So I said "What the hell, might as well try it!" and after a few days of a 10B count probiotic... there was an absolutely huge improvement. 

Another paper we discussed last year said something very similar. That the most common time to suffer some sort of nervous system disorder or mental disorder was after a severe stomach infection or using antibiotics.

When was the last time you used an antibiotic, and have you been experiencing any other effects, such as anxiety or depression? 

Share this post


Link to post
Share on other sites

I was being given a lot of anti-biotics for dental issues a while back and they did devastate my flora.  I went on pro-biotics for a while afterward and I think they got everything back to normal.  I drink diluted raw apple cider vinegar now and then.

When I was about 9 to 12, I was climbing a ladder.  I fell off backward and banged my head, hard, on the concrete.  My head felt large and I was dizzy and dazed.  I didn't tell anybody because I didn't want to get chastised or fussed over.  I think I could've had a concussion, and this may play a role in many cognitive problems I've experienced all my life, including this one.

One of these days I may get up the courage for an MRI.  I heard they have panic buttons for claustrophobia, so even the thought of being in that tube makes me panic a little.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0