[hermitdev]

I have nerve damage from arthritis in my spine. Mine is definitely not correctable with current medical technology (degenerative discs, bone spurs and pinched nerves & spinal cord from the above). Most days, I'm resting at a 4-5 on a 1-10 pain scale. It can easily reach a 7-8 on bad days. When I go for allergy shots, I dont even notice the injections, typically.

Thing is, most pain meds dont even work. NSAIDs don't make a dent. Opiods dont work either (not that I could get a doc to prescribe them if they did). Muscle relaxers do help quite a bit in reducing the pinching of nerves. I recently did a 7 day trial on Celebrex, and after 3 days, I was in the least pain I'd been in for years (apparently it's one of those that builds over a few days). I see my PCP tomorrow and will hopefully get an ongoing prescription.

Ive been on Lyrica and gabopentin for the nerve pain in the past. While they helped with the nerve pain, I had a lot of side effects with both, and don't want to go back on either.

[astazangasta]

Have you tried much acupuncture? I've found it extremely effective for nerve issues, although nothing approaching what you are dealing with. But in general western medicine seems bad at resolving these kinds of things, it might be worth investigating. If you are in SF competent practitioners abound.

[pvaldes]

Western medicine is not "western", is THE medicine based in proved facts. Scientifically proven.

Anything that experimentally works, being chinese or icelandese, is included in medicine so there are a fair possibily that anything working in chinese medicine is yet included in medicine. The rest is just in the category of "dubious traditions, superstitions, fairy tales and non trustable until proven".

The basis if acupuncture is to selectively "stimulate" nerve fibers so the pain dissapears, but the nerve funcion is temporarily damaged. Is not different than blue scorpion poison against cancer, or being struck by an electric current. Killed nerves can't feel or transmit pain sensations but pain is an important defense system for animals. Anesthetics do not cure nerve issues, just hide the problem, as acupuncture does.

Sticking needles in a finger maybe could be acceptable. Touching the spine with several hot metal objects has a much higher risk and probably unaceptable in the balance of benefits and cons IMHO.

[hermitdev]

I have not tried accupuncture.

Personally, I'm skeptical of it. My wife, while also being skeptical, has recently tried it and she reports she's aeeing benefits, so I might try it, but I have not so far.

[dotancohen]

There is no reason for this comment to be downvoted. It is both informative and insightful.

[DoreenMichele]

It's completely unsolicited advice. The comment it is replying to is adding first-hand testimony to the discussion, not asking for suggestions for how to manage their own condition.

Mere mention of one's own medical situation should not generally be deemed to be open season on the entire internet tossing out medical suggestions, no matter how seemingly insightful. Most people with serious, long-standing conditions know a lot more about it than the average person on the street, have tried myriad approaches to treatment and get incredibly sick of having everyone "helpfully" toss suggestions at them at the mere mention of their diagnosis.

It's exhausting to have to say over and over "I've tried that or have a good reason why I am not doing that. I'm aware of those options. My short comment here is not remotely a comprehensive medical history."

Everyone puts it on the chronically ill person to be polite and respectful and make them feel good about wanting to help. But it's an incredibly negative experience to be constantly bombarded with such "help" and the implicit expectation that you should be politely appreciative of their good intentions.

I'm one of the people that downvoted it and that's why I did so. I'm chronically ill and also post as openly female here. I'm abundantly familiar with the desire to simply say "Oh, hey! I know something about that!" only to get a slew of advice I didn't ask for. The subjective experience of that is that the entire world clearly thinks you are an idiot who isn't trying hard enough and that's the only reason you can't fix your chronic, intractable problems for which the world has no real solutions or you would have already long ago sold your soul to the devil to finance the slam dunk answer.

This is part of why some parts of Twitter are awash with bitter complaints about Ablism and how terrible Abled people are.

[astazangasta]

For what it's worth, i really admire your advocacy and will take this comment to heart. Even if my intent was benign it is much easier for me to toss off such a comment than for a long-term sufferer to receive it.

[DoreenMichele]

Cool. :)

FWIW, it's not really intended to be some edict with zero exceptions. How it's done matters.

I don't have any pithy advice for how to do it well. I'm still trying to sort that out myself.

I like being helpful and I hate seeing people suffer and I'm chronically ill myself, so I tend to feel like that ought to count for something in terms of being viewed as a good faith effort (other people don't always agree). Nonetheless, I recently got cussed at and blocked by someone on Twitter who was having an especially rough time. (Granted, the topic in that case was suicide, but I didn't know that when I first said something.)

When you're in a lot of pain all the time, it's really easy for things to just rub you the wrong way and get on your very last nerve when you just want to participate in the conversation like a normal person and be treated like a contributor.

I've started asking people if they want suggestions from a random internet stranger and respecting it if they say "no thanks." Or offering suggestions in a low key fashion if they are actively soliciting feedback. (This list is not comprehensive.)

Have a great day.

[dotancohen]

Thank you for the response and explanation. I had never encountered the "too much help" scenario, therefore did not understand it.

[monort]

As a counter-argument - my quality of life was greatly increased by an unsolicited advice here.

[DoreenMichele]

Can you point me to the exchange in question?

[monort]

Can't find it - it was a long time ago. I was getting strong headaches while traveling, it was a caffeine withdrawal, but I didn't know it until someone here mentioned the possibility. I started drinking caffeinated beverages while traveling, and the problem was gone.