The Pain of Peripheral Neuropathy, As Explained By Someone With PN

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My husband got home from work this evening and almost asphyxiated me when he used the bathroom without shutting the door or turning the exhaust fan on (get ready for my 10 commandments of pooping post), and when he was done, he plopped down on the bed with his giant cloud of stink and had that look on his face that could only mean one thing; he had an epiphany.  Many of the greatest minds on the planet do their best thinking while dropping deuce.

He explained how he sometimes gets pins and needles when he spends too much time sitting on the toilet because it cuts the circulation off, and it made him think maybe my problem is circulatory rather than neurological.  When did I ever describe my pain as pins and needles?  When your leg falls asleep, it’s an uncomfortable sensation that’s difficult to describe, but I wouldn’t call it painful.  At least not as I perceive it.

I gave him a little education on what it might feel like, but even explaining, it’s impossible to know how those words translate to his own experience.  Pain is unique to the person experiencing it, which is why it’s difficult when asked what the quality of your pain is.

Sometimes our words get replaced in our medical records based on what makes sense to the provider.  That being the case, the quality of my abdominal pain is crampy.  A word that I’ve never used to describe my Crohn’s related pain.  I tell them it’s like an alien is trying to bust out of my guts, that it feels like I’ve got a bunch of razor blades snaking through my intestines, and yes, there is some cramping from the gas and diarrhea, but all of this can’t be quantified into a single word like “crampy”.

The same goes for neuropathic pain.  About the best I can come up with is “burning”.  It does burn, but it also stabs, and itches like a motherfucker.

Let’s start with the burning.  It’s a constant pain that varies throughout the day and gets much worse at night.  I have yet to find an explanation for this, but I assume it’s similar to the cyclical rhythm of RLS.  It could also be that while supine, or laying down, there isn’t as much circulatory resistance to the extremities, so the added blood flow warms them up and intensifies the burning sensation.  It feels like hot oil burns from my feet, up to my knees, and in my fingertips.  Anything that touches my skin results in excruciating pain, which is why I’ve taken to sleeping on top of the sheets and under a blanket with my feet hanging out.  I can’t give the pain a number, because when I think I’m at an 8, I get the stabbing pain that cranks it up to a 20.

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Stabbing.  Just like it says, it’s the feeling of the skin being pierced with a dull needle full of rubbing alcohol, times 1,000.  Or a million bee stings on top of a sunburn all over every millimeter of my skin on the aforementioned areas.  In short, it’s not a picnic.

Lastly, there’s the itching.  It’s not constant, but it’s insatiable once it starts.  It’s very similar to having an itchy rash.  If I accidentally scratch, it only gets worse.  I’ve scratched myself raw multiple times, and when it gets really bad, I have to sleep in knee high socks, because I can and will rip my skin off while half asleep.

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I’ve tried all sorts of stuff for this pain including tylenol, biofreeze, aspercream, voltaren gel, lidocaine patches cut up and adhered to the most painful areas, gabapentin, oxy/hydrocodone, and the only thing that works is Tramadol.  This is not an advertisement for Tramadol, but it has been my miracle.  While relatively weak on other types of pain, it’s a fucking champ at slashing the neuropathy pain to an acceptable level.  It also helps somewhat with my abdominal pain and slows my bowels down a bit, which makes me a happy camper.

Pain is not the only vexing component of PN.  There’s also proprioception loss, which means you have no idea where you are in relation to your surroundings.  I frequently run into doorways, and climbing/descending stairs is risky business.  Darkness or closing my eyes quite literally turns my world upside-down.  I’ll topple over, and I’m on the ground before I realize what was happening.  Loss of awareness of joint position results in strains and sprains of my fingers, toes, ankles, and knees, and even broken bones.

On paper, peripheral neuropathy is a benign condition and doesn’t seem like a big deal.  From my perspective, it’s a huge fucking deal, even in contrast to the illnesses I have that could quite possibly kill me long before I’m older and grayer.

I’m stretching my pills so I don’t run out before I can request a refill (which happens to fall on a Saturday.  Bastards.).  The next few days will be rough, but I’ll handle them the same way I always do.  In an insomniac haze.  Then I’ll get my 20 day supply, which happens to be my last refill on this current prescription, and hope to the God of Bean Burritos that my prescription gets renewed next month.  It’s a crapshoot.  For now, I’ll count myself lucky that I’ll have 20 days of managed pain and go from there.

 

21 thoughts on “The Pain of Peripheral Neuropathy, As Explained By Someone With PN

  1. “Dropping deuce,” hahahaha! Never heard that one before. Love it. PN, awful!!! Nothing at all benign about it. Why are they not just giving you a Pez™®©¿ dispenser with tramadol in it, and infinite refills, no questch? What do they think might happen, you might feel some better? I hate medical personnel. Myself excluded, of course. I really should pay you a visit with my acupuncture stuff. I have quite accidentally relieved several people of their PN, much to my surprise (and their relief)! Diabetic neuropathy, too. Really miraculous. I’d love to just go back to work, but since I can’t look down for more than a few seconds at a time (damn spine), it won’t happen. But one tiny person I could do.

    Liked by 1 person

    • 😂

      It really is something else. I got passed around a bunch before anyone even considered that maybe I said I was in pain and falling all over myself, because I actually was. That happened with my gut issues too. Just another neurotic woman, I am. Neuro wanted to do every pointless test under the sun, when a few skin biopsies would have given him the answers he was looking for right away. Then do the pointless tests to establish if both small and large nerve fibers are affected. Think the bozos who write the rule books think punch biopsies are more uncomfortable than EMGs/NCSs? They need to go through that crap, then get back to me.

      The pharmacy changed their dispensing rules on pain medications. I used to get a bigass bottle that lasted 2 months, but that doesn’t fly anymore. Crappity crap. Funny part is that it’s being prescribed for back pain, because the prescribing doctor thinks the neuropathy is from my spinal stenosis. So I take it ‘as needed for back pain’, when it does absolutely nothing for my back when that flares up. Oh well, details don’t seem to be important these days. 😉

      Aaah, there’s the A word again! I had a referral to the acupuncture clinic, got whisked away to Blowhio, and all pending referrals had expired by the time I remembered I had other shit to schedule. They all want a piece of me. I’m going to need to make some copies so I can be in 5 places at once. I heed the praise of the needler. Spike slinger? Pin pusher? What’s the slang term for acupuncturist?

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  2. So sorry about all of this. This pain business is really in an uproar. Cant believe big pharma will just lie down and play dead. They have he moneyto lobby? WTF, invisible pain hurts! Wishing you as good a day as you can have Kara.

    Liked by 1 person

    • I haven’t been paying much attention to the new “drug war” until the past year, but I did pick up on one of the largest pain patient advocate groups being almost entirely funded by pharmaceutical companies. I don’t doubt that most of it is out of self-interest, but I’m sure there are at least one or two drug developers that genuinely want people to have a better quality of life. The problem with this, is when you have debates between the ‘we hurt real bad’ group funded by Mr. Big Drug, and the anti-opioid propagandist douchebags, they use that as a basis to discredit all points argued.

      It’s sad to me that people think they have a right to argue against something when they haven’t taken the time to educate themselves, and they themselves don’t suffer from severe pain. That’s why the CDC is going to win, a we’re going to be SOL, or passing a bong 24/7. Many people are ignorant, and they’ll believe anything that sounds science-y, even if it’s all made up bullshit.

      Thanks Lisa! Lack of sleep makes me a little ranty (haha, autocorrect changed ranty to randy the first time. If only!) 😆

      Liked by 1 person

  3. Ugh! I’m fighting for pain relief too! This blows! Unfortunately Tramadol is on the list of stuff I can’t have. Learned the hard way it just gives me migraines. So I have to play jump through all the hoops and be a good little circus monkey and you can have 28 days of meds!
    (And they wonder why we’d throw ourselves off the roof some days…..)

    Liked by 1 person

    • A few people I know who have taken it react badly to it. My Dad had a psychotic episode that lasted almost a month when his VA doctor prescribed it for his back pain. It does act like an SSNRI, so serotonin syndrome is a risk, but usually when combined with SSRI’s. It sucks there’s no one size fits all. 😦

      Like

  4. Is that like Vertigo? Or what the retards here call ‘Benign Paroxysmal Positional Vertigo’? As in, they don’t know how its caused (possibly inner ear / breathing / head trauma) or how to get rid of it … but the pills they prescribe give you vertigo!!! Arrgghhh …. Anyway …
    Feeling for yah!!! (especially in light of where your partner has his ‘epiphanys’ lol)

    Liked by 1 person

    • It’s similar to vertigo, in terms of ending up on your ass if you aren’t cautious. We have three things to sense body position. Inner ear equilibrium, eyesight, and sensory input from your feet/legs. You need two of those functioning in order to stay on kilter. Take away vision and feet, and London bridges falling down. I do get a feeling in the pit of my stomach, which is probably my inner telling me to brace myself.

      Liked by 1 person

      • ahhhh well that explains why I’m fucked then lol … you should be a doctor, i think your more qualified and you have a great bed side manner lol. … And i think my ‘brace yo’self’ thingy runs on over drive – anxiety freak out lol

        Liked by 1 person

  5. I’m always staggering like a zombie – I never thought about my balance being effected because of it being partly managed in my legs and feet! I’ve nerve and soft tissue damage. I’m sorry about the lack of tramadol; it shouldn’t be happening… (I’ve got spares ‘cos they trigger migraines in me – if you want them). 🙂 xo
    contact @ stephaniefaith.net

    Liked by 1 person

  6. Ugh! I’m glad Tramadol works for you. It has never done anything for me. I like hydrocodone but they are SO hard to come by now! Nobody here really prescribes it anymore. Tylenol 3 upsets my stomach. I had a concussion in March so I was prescribed all of these except for Hydrocodone 😿

    Liked by 1 person

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