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What sometimes helps my #ChronicPain

People are constantly sending me their ideas for remedies for my pain.

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I realize they mean well.

But if you don’t have chronic pain, meaning ongoing, every day pain, you don’t understand.

On top of that, it’s not that I don’t have a regimen that works.

It’s that I can’t always afford it or access it.

Obamacare has been a lifesaver in some ways.

(I do mean literally. It saved my actual life twice. And since I have the kind of cancer that a- comes back b- can kill you if your treatment is capped – I’m likely to literally die on this new plan.)

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But not even the best national health care plan can change the fact that the CDC has issued new guidelines for pain management medication, and that they are being taken as gospel by doctors.

They were meant to reduce deaths from pain medicine abuse and heroin overdoses (which some people are only resorting too because they’re in that much pain and don’t have medical marijuana in their state).

But it’s the people who are in pain who are suffering, not the people who would steal and abuse our medications.

Doctors make you sign binding agreements that you won’t get your pain prescriptions elsewhere. So if they create the wrong mixture, and they refuse to tweak it, you’re stuck.

They also routinely under-prescribe pain medicine, often with no explanation.

They expect you to make up to a third less medicine work for treating the same ailment, or more likely, one that is constantly worsening.

No one seems to care that we’re in pain.

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Except people with a million home remedies.

If you’re among those people, I need you folks to understand a few things.

Because being in pain all day every day for the last 9 plus years, even through cancer, with maybe 5 total days of pain free life? And having chronic pain for 19 years total of my life?

Makes patience very very thin.

Things that work for your headache may not work for my migraine.

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Whatever helped you when you pulled your back muscle may not alleviate my spinal disorder or could even exacerbate my condition.

Or one of my other ones.

On the other hand, suggestions from fellow spoonies are often helpful.

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If you’ve ever offered me a suggestion: it’s not that I don’t appreciate that you want to help me. It’s that I have heard all the remedies 1000 times before.

Which you’d know if you would ask me first if I want your advice.

That’s the easiest way to avoid a misunderstanding with someone who is already at the edge of their threshold due to ongoing pain: ask permission to share your remedy.

I was in one of my favorite forums on Facebook – I rarely post but it was a holiday. One of the very few reasons I ever go on Facebook is to visit the private groups I belong to or the one I’m about to talk about.

If you’re suffering from Chronic Pain, you can join the Chronic Pain Support Group here.

It was while I was there that I saw a question asking for suggestions. I was amazed at how much more useful the spoonie advice was versus the unsolicited input I get even from strangers.

This inspired me to share some of my favorite remedies here.

johnhain / Pixabay

Could my suggestions work for you? Maybe. If you have issues similar to mine, it’s possible.

I have

  • sciatic nerve pain that is so bad it sometimes keeps me from working,
  • spinal degenerative disorder (which while untreated is what developed into nerve damage as well),
  • neuralgia
  • asthma
  • monthly migraines,
  • and rheumatoid arthritis (which I found out during a diagnosis for a chronic cancer.)

So, as you can see, sometimes treatment is complicated for me. Medicine to quiet my nerves doesn’t help with my back. The nerve pain and damage makes the RA worse, and complicated – sometimes I don’t know which is causing the pain.

 

My advice for things that sometimes work on my chronic pain.

getting enough sleep.

Which I know is hard with painsomnia. But at least once a week I take otc sleep aids instead of my pain meds. One night of sleep under my belt often makes my meds work better even though the sleep quality is different.

if your doc is helpful, try changing pain meds.

The three drugs I’m prescribed now work much better for me together, at lower doses, than the commonly prescribed percocet/flexeril cocktail I was on. I think more clearly too.

Easier to lose weight too. But that’s what works for me and my body chemistry. Listen to your body and find a doctor committed to finding a workable solution.

get a moist heating pad.

This is the only case in which I don’t totally hate the word “moist.”

Moist heat works way better for my nerves than a regular heating pad ever could.

join a gym that has a hot whirlpool if you can afford it.

If not, keep your eye out for free promotional spa passes. The heat plus the bubble combo works wonders for me.

consider switching mattresses.

I constantly underestimate how much spring mattresses exacerbate my condition and interrupt my sleep vs a gel mattress.

I went back to memory gel and my sleep quality went up even when the duration was low.

I’m also very lucky to be in my state’s medical marijuana program.

Something I never thought I would do.

But they have liquid and edible formulas that take away your pain without making you loopy or high, as well as blends that affect your body more than your mind so you can sleep .

try a TENS unit.

Electrical shock applied to the base of your spine probably sounds nutty to you right now. But the relief you may feel after a treatment is so satisfying. Some insurance plans cover the cost of a home unit too.

see if you can get them to send you to physical therapy.

This always works better for me than medicine alone. Plus you can do a workout in 90% less pain after it’s over, usually still on their site.

nerve blocks are partially helpful.

Paying cash, one of the best local pain doctors I ever had used to charge me $800 a pop for a series of three injections. It was after these that I would occasionally have a pain free day. (When he took the last insurance I had, I noticed he charged a different price, but then I realized that I was on the no-frills plan by contrast.)

It reduced the pain long enough for me to get back in shape from my rougher periods. The reduction never lasted more than 3 months for me, but I also know people with minor but persistent cases that were better for over a decade from one series.

None of these things is a cure-all but it helps, and can be stretched much better than regular pain meds. Can be very expensive though. I sometimes spend $200 a month for 60 doses, out of pocket. It’s not typically a covered medication.

4 thoughts on “What sometimes helps my #ChronicPain

  1. Ahhhhhh! Pain!!! You are so evolved in your pain management and – as you know – are one of my role models.

    Moist!!!! Oh no!

    I love this idea of asking first if you’d like their advice. Everyone just wants to help, and I recognize that. When people send me tips I just think it’s a “Thinking of you” card. There have actually been a couple of things I didn’t know about (a trial, etc). But, no, essential oils are not the cure for chronic pain. That does crack me up. You are good at setting this boundary and good to think about.

    • I hear you in this. Posed as friendly, I don’t mind knowledgeable tips “I read this article about migraine research.”

      Even if they don’t know what they’re talking about I can take as “thinking of you.” Because they’re not claiming their own knowledge about their knee is greater than my own about my body & balancing multiple ailments.

      But aggressively pushing a lemon-juice kale drink on me as a cancer cure?

      Then blaming me for having cancer, saying “you don’t want to save your own life” because I refused to join an MLM?

      Nah. It’s not tips.

      Even A tip like “I sprained my ankle & they gave my Celebrex.” Ok. That person is trying to be helpful & maybe I’ve never heard of that drug.

      ADVICE from people who are not doctors? LOL done with that.

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    • Hi, I removed your mailing address from your comment. I don’t sell CBD oil or any other tangible items, let alone any type of marijuana. You have to find a doctor in your area to prescribe it. I know one in Maryland if you need one.

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