Need a word for my pain

April 24, 2024 8:27 PM

I’m experiencing a new type of pain and at a loss of how to describe to my docs. I’m hoping someone has experienced something similar and knows a relevant medical term so I can communicate effectively with my doc.

I have an alphabet soup of diagnoses (POTS, MCAS, EDS, diabetes, Crohns, Migraines, among others).

I have been dealing with neuropathy in my feet (not diabetic but cause undetermined) that causes cramping, shooting pain, aching, and the sensation of cold while warm to the touch.

When it gets worse, typically in the evening, I start to get a feeling of pain and agitation that I’ve yet to figure out how to define. While other parts of my body don’t hurt, it feels like all my nerves are firing all over my body, and any touch is emotionally triggering and feels like my nerves are scraped raw. If I could crawl out of my skin I would do it just for the break. It feels a lot like the akathesia I experienced when taking a medicine in the past.


It’s awful, and I’m at a loss for how to manage it, especially since it’s so hard to describe without a medical term for it. OTC pain control does nothing, and my doctors are unwilling to provide any alternatives even though opioids do seem to help.

Is there anyone with similar experience out there? Possible solutions also appreciated. Thanks!

posted by gilsonal to Health & Fitness (13 answers total)

Best answer: I had similar pain and for me it turned out to be a Vitamin D deficiency. I've read that similar things can happen with other vitamin deficiencies. So in your situation, I'd ask your doctors to check your vitamin levels if they aren't monitoring that already.
posted by miscbuff at 8:41 PM on April 24 [1 favorite]

Best answer: After I had a mastectomy I experienced neuropathy and pain all over my body. I can't say my pain was the same as yours, but for me, touch was painful and unpleasant . I felt both bruised and lightly sunburned all over. I also felt skin crawly and restless sensations.

My doctor prescribed a low dose naltrexone. It took a couple weeks but it really did help. The improvement was remarkable. I was on it for a couple years. Tried to wean off it once after a year or so and the sensations came back quickly. Then another year later I
weaned off it successfully with only minor return of the sensations for a few days that leveled off.
posted by CleverClover at 9:03 PM on April 24

I'd describe it as extreme touch hypersensitivity.
posted by heatherlogan at 9:04 PM on April 24

Best answer: Autistic burnout which exacerbates sensory overload?
Central and/or peripheral sensitization?

I deal with both... I'm AuDHD and have MCAS, POTS and hEDS. Low dose naltrexone has been a game changer for me. Just a year ago I was hurting so badly I could hardly sleep, my skin was on fire! OTC drugs barely touched it. LDN whipped me back into shape in under a month. Now that I can finally rest, I have more energy than I've had in years.

An easy test for overload is to go on a sensory diet for a week and see if your symptoms abate. Turn off the overhead lights, wear sunglasses and earplugs everywhere you go, minimize noise and social obligations, and stop any activities that increase your processing load too much. Prevention first!

Sometimes when I'm edging on burnout I will just lay in bed until my nerves stop humming, and after a day or two I pop up feeling fine.
posted by lloquat at 10:40 PM on April 24 [1 favorite]

I get a burning, aching pain in my feet. For me it’s gone away whenever I’ve quit smoking. (Hopefully, you don’t smoke, but if you do, try to quit, it will improve healing of all tissues by 50%.)
posted by cotton dress sock at 11:11 PM on April 24

Best answer: "When it gets worse, typically in the evening, I start to get a feeling of pain and agitation that I’ve yet to figure out how to define. While other parts of my body don’t hurt, it feels like all my nerves are firing all over my body, and any touch is emotionally triggering and feels like my nerves are scraped raw. If I could crawl out of my skin I would do it just for the break."

I have fibromyalgia and this sounds like what I experience. While there is some pain, the itchy/crawling feeling is the dominant sensation. The slightest touch -- even just moving air from a fan -- sets off a cascade of itching or other skin irritation.

It's worse in the heat.

NSAIDs and cannabis edibles seem to help.
posted by Jacqueline at 11:15 PM on April 24 [1 favorite]

Best answer: I wake up this way when I’ve done too much the day before and/or don’t take my evening meds (so probably 5 days out of 7 in a bad week, 1/7 in a good one). I call it all-over musculoskeletal pain when I have to describe it to a doctor, but I’m not sure that’s a real term. It seems to be similar to what friends with fibromyalgia describe as “fibro pain.”

For me it seems to be some combo of dehydration/POTSiness, MCAS flare, and just regular old pain from muscle tension over the day and subluxations while sleeping. I usually take some antihistamines and 500mg of Naproxen, maybe some electrolytes, and that helps in a couple of hours. Taking magnesium glycinate also seems to help.
posted by assenav at 11:18 PM on April 24

Best answer: The sensation of all your nerves firing and the heightened sensitivity to touch could be indicative of allodynia, which is when stimuli that are not normally painful are perceived as painful.

Given your extensive medical history, it's possible that your doctors may already be considering neuropathic pain as a component of your symptoms. However, it's important to communicate your experiences as clearly as possible to ensure you're receiving appropriate treatment.

You might want to specifically mention terms like "allodynia" and "neuropathic pain" to your doctors if you haven't already.
posted by bkeene12 at 1:06 AM on April 25 [2 favorites]

For 15 years or so I've had profound neuropathy in my lower extremities, especially my feet.

It took years to get any relief. I went through the "he's seeking drugs" and "he's imagining it" things for sometime until I found someone who believed me.
Along with the numbing pain I'd get "restless leg" at bed time.
Long story short: I'm taking Lyrica (Pregabalin) and it changed my life.
I've always described the pain as "numbing". A neurologist would understand.
MeMail me if you'd like more details.
I hope and pray you get some relief sooner rather than later. It's a horror to live with.
posted by james33 at 1:40 AM on April 25

Your reference to akathisia and the description "emotionally triggering and feels like my nerves are scraped raw" makes me want to mention a psychological term that came out of an overwhelmingly bad period about five years ago. I was introduced to the concept of "adjustment disorder" at the time and it was a helpful reframing of my experience away from just looking for physiological sources of the suffering. It was helpful to understand and to prioritize understanding how psychologically overwhelming oneself can truly make the wheels come off of your experiences (I felt very restless and was easily triggered along a physical-emotional axis that was and remains difficult to describe; I also have Crohn's and have worked in medicine for my entire adult life, so it's surprising when I can't put my finger on the right words). It might be helpful to talk about with a therapist. Hang in there.
posted by late afternoon dreaming hotel at 3:44 AM on April 25

Gabapentin is often used for neuro-centered pain. It's not a great drug (i found it very sedating, tho that's not widely reported), but it seems to be more readily offered as a solution by MDs, and might beat the alternatives.

I've used ice baths to distract or reset nerves, but I like ice, so.
posted by Dashy at 5:16 AM on April 25

I’ve been dealing with an odd sort of neuropathic “pain” along the bottom of my left heel and into the mid-foot. It was like, suddenly, all the nerves in those areas would start firing or lighting-up, or something. It wasn’t painful, per se, but it would keep me up at night and was damned uncomfortable when in shoes.

After umpteen doctors looking at it, shrugging their shoulders and saying “damn, that’s weird,” I finally hooked up with an orthopedic surgeon who specializes in feet. He decided an mri was in order, after which he discovered a calcification behind my heel that was impinging on a nerve that runs down the heel and along the sole of the foot. We decided to simply try a cortisone injection into the heel, and that has done wonders (so far.) The other option would be surgery, but if I can handle heel shots a couple of times a year, I’m good as long as they keep working.
posted by Thorzdad at 5:57 AM on April 25 [1 favorite]

I have nerve pain in my feet that turned out to be from sciatica. When my back is aligned, my feet are fine. When my sciatic nerve is pinched, I don't feel the normal aching and burning sensation in my hip or leg, just in my feet. My sports medicine chiropractor adjusts my back and it goes away. Weird but true.
posted by summerstorm at 10:55 PM on April 25 [1 favorite]