I am changing the title of this post from what it was originally because the symptom my doctor was clueless about… was, in fact, nerve damage. And this is the post about when it all started.

All my life I’ve had odd health concerns and symptoms but it was not till I was in my twenties that most of those were shoved under the FMS umbrella.  So I got a lot of blood tests and had a lot of doctors and a few specialists confused as to what was going on.  I have some FMS symptoms since early childhood and joint pain due to hypermobility and a high ANA blood count and some other weird things that led to blood tests every six months and a few specialists.  And they always had a name for whatever it was, but not a reason why they were all coinciding together and some reasons were ‘sometimes a high ANA is normal for 1% of the population’.  So you sort of get used to not knowing and then ignoring symptoms yourself.  Which is never a good idea but with FMS it is hard not to, I mean, literally any random symptom you can think of it’s under that syndrome.

And just because you get a diagnosis, which is its own relief, does not mean it is treatable, so you have to ignore all the same things anyway.  That’s where I first developed my pain tolerance for a certain regular baseline of pain.  But it got tiresome real fast the whole process of mentioning something to my doctor, getting a whole bunch of tests and then getting either ‘ain’t that curious’ or ‘It’s just FMS’ answer.  Now it is usually that is a symptom of migraines and/or FMS answer.  Sometimes I like actual resolutions.  Not everything can be chronic and therefore incurable and usually untreatable… if that were the case doctors would be out of a job because we would all be going to witch doctors to purge our demons.  I’m beginning to think that might have a high probability of working.

So I have some pretty bad numbness in my hands that is apparently not going anywhere.  One would assume there would be at least a definite reason for this and with a reason at the very least a hypothetical treatment.  But no.  That would be too easy.  My blood work came back normal, well, normal for me.  Which means said numbness is not a result of inflammation, vitamin deficiency, hormones or anything else he tested on that long list.  Which means he is 95% sure it is neurological and likely related to chronic migraines, given, it started with one hell of a migraine.  Now as to why that is persisting?  Who knows?  He is passing this one off to the neuro… who I see in freakin January. He speculates a persistent migraine aura. Of which I call bull on. Yes, I have persistent migraine aura, visually, but other persisting auras are even Rarer. And this isn’t that sort of numbness. It is thicker.

He speculates the stress of working with migraines is difficult (duh) and might be causing the symptom to persist since the migraines are worse in a stressful environment.

He recommended a leave of absence.

But I declined.

Because I’m insane.

I simply can’t do another leave of absence.  Granted, not having to work is blissful since the pain is definitely knocked down a notch and migraines are easier to treat.  However, other than decreasing my stress and making my life bearable for a short duration nothing is resolved.  So I get some relief for a short duration.  Nothing actually changes in treatment so when I return I am back where I started…. but of course not really, I am back to whatever position my employer chooses to give me and generally my work environment is negatively impacted.

I can’t handle the emotional stress of returning to work.  Such that I would rather endure more pain for greater durations to avoid ever having to be in the same mental place I was last year.  I like that my doctor is aware of how difficult it is for me working like this and I appreciate that is is not minimizing my pain but I can’t go through all that again.

It is my life that is being mucked about with when I go on repeated short term leaves and it is my life that gets worse each time.  I mean it may not seem like much of a life, but it is all I have to live.  I told him it would be a stress relief for the short duration that would in effect cause more stress in the long term.  It made me tear up a little, being my dark sunglasses of course because it would be such a relief from enduring this pain, even for a short duration, but I can’t accept it because I know what it is like in the long term and it is just not worth it.  Honestly, that is the first time I have ever actively made a choice to benefit others and the status quo while completely ignoring my health.  However maintaining the status quo is easier on me emotionally right now and honestly, last year was an emotional trauma that left me bruised mind, body and soul.  No one would ever want to endure that again.

They have to stop playing around with my life like that.  Either I am fully capable of working most of the time or I’m not.  Putting me on repeated leaves does not make anything better for anyone in the long run because it does not change anything.  Of course, while I am saying this I do recall this is exactly why I did not go on leave last year which ended with me getting into a very stressed out place with all that work crap and deciding not living sounded like a much better plan…. after which I was put on leave.  Soooo… that backfired.  But, that also did not change anything and returning to work after that was extremely difficult, so I still stand by my decision, however stupid it sounds.

My doc did tweak my medication as in he is taking me off the Elavil I was put on in December of last year.  He said maybe all the migraines are bringing out a side effect on that side.  And really there is no reason to stay on it regardless since it did not affect my migraines positively or negatively… and I blame it for making me so insanely tired and confused in the mornings.

He asked me when was the last time I went to the ER for migraine treatment.  I laughed and said I avoid that place like the plague… so more than a year.  No point as far as I am concerned.  It is a horrific experience, it literally takes six hours to endure and there is less than a 10% chance of success.  Besides if I can’t call in sick for a migraine (any more than I have, which I admitted is too much by work standards but considering the migraine frequency and intensity lately way better than it could be) then that also means I can’t go to the ER for one.  Given it takes so long I can’t pop into the ER then go onto to work.  I have done that before but apparently given the possible treatment I get for the migraine the ER doctors don’t like that, as in insisting I don’t, which I feel free to ignore if that treatment was even slightly successful.  He suggested instead in-hospital treatment, as in through the day surgery department.  They set up a time and I go in the actual hospital, get hooked up, get the treatment and go.  I am extremely happy with this option.  Extremely.  I get a treatment that might actually bump me out of a freakin daily migraine hell and I don’t have to go to the ER?  That is awesome and I am slightly annoyed he did not mention this possibility years ago.

Still… my hands are still numb and I am still weirded out by that.  I asked him what happens if it does not go away and he said sometimes people have numbness that does not go away.  Yay.  Not the response I was looking for, but really, what can I expect?  It is just another one of the weird symptoms that does not fit with my current health issues and is not showing on blood work.  While I would like my doctors to be brilliant like House if they have no evidence they cannot make a diagnosis.  I will have to wait for the neuro on this one and hope he has a reason for it.  But if he doesn’t I might suggest sending me to physio again since when I had referred pain into my shoulder restricting my mobility, which was caused by the migraines and neck pain, that really helped.  And numbness in the hands can occur from neck-related pain, although I don’t think it explains numbness on both sides.  Still worth a shot

See also

Peripheral neuropathy Awareness week
Buy Me a Coffee at ko-fi.com

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