How many of you have medication resistant myalgia?

[energyoverload]

How many of you viewing this thread have moderate -severe myalgia (muscle pain) that is resistant to the following types of medication? (Please state which categories it is resistant to):

NSAIDs(Celecoxib, iburprofen, Aspirin, diclofenac, naproxen)

Gabapentinoids (gabepntin, pregabalin, gabapentin enacarbil)

Tramadol (combined opiate agonist & selective noreepinephrine reuuptake inhibitor)

SNRIS: Duloxetine, Milnacipran

I am interested from a research perspective how great a problem myalgia is towards disability. I am very much interested in targetting a different pathway and therefore want to see if there is much of a need for an altetnative to the current status quo.

EnergyOverload

 

[Diwi9]

Myalgia has evolved into a major part of my illness over the years. I get daily pain and it moves. The pain is often on or around my joints (especially tendons and ligaments). The pain comes on quite quickly and can dissipate quickly too, like a switch. I also regularly have muscles spasms, especially in my back and neck that can be extremely painful. The most intolerable pain is when it affects my hip region.

None of the medications you listed have been able to touch my pain. Not LDN, not NSAIDS (I've tried all that you have listed), not opioids, not LDN, not gabapentin. I cannot tolerate SSRI's, so I don't know if they would help. I occasionally experience extreme gastrointestinal pain, tramadol is a wonder drug in this respect but doesn't touch the myalgia.

I have experimented with kratom and was surprised that it helps with my joint and muscle pain, the only side effect I've experienced is that it makes me feel like I've had a cup of coffee. I have tried different forms of cannabis but I do not respond well and cannot tolerate the feeling, cognitive impact, and heart palpitations/orthostatic issues. Basically, CBD alone does nothing and THC makes me feel awful. However, salves with THC applied topically actually do address my joint pain and muscle spasms with no side effects. There are times I wish I could just dunk myself in a tub of it!

FWIW - I am hypermobile.

 

[Learner1]

Oxalates can cause pain. Many patients around here have them, but they are rarely discussed. They should be.

Oxalates are sharp crystals that are deposited in all kinds of tissues, and inside or outside of cells. They are painful and cause damage.

A few people have genetic oxaluria. But more frequently, antibiotics wiping out oxalate degrading bacteria, like lactobacillus, bifidobacteria and oxalobscter formigenes causes oxalates to bind with minerals like calcium and form these sharp crystals. A diet high in oxalates, particularly with "healthy vegan foods like spinach, root vegetables, nuts, beans, etc. or foods contaminated with glyphosate (RoundUp) are excellent ways to acquire an oxalates problem. A Great Plains Organic Acids (OAT) test is the best way to find out if you have a problem.

A low oxalates diet, taking calcium/magnesium/potassium citrate, Garcinia cambogia, or lemon water before each meal, and ensuring sufficiency of vitamin B6 are needed to work on an oxalates problem over time. People report dramatically reduced pain following this approach strictly.

Typically, only kidney doctors are aware of oxalates as 10% of Americans end up with kidney stones. But, more commonly, myalgia pain is what people experience and most doctors never connect the dots to identify an oxalate problem.

 

[pattismith]

@energyoverload

my widespread pain responds well to methylprednisolone pulsed therapy.

@Learner1

Hydroxycitrate: a potential new therapy for calcium urolithiasis
Article in Urolithiasis 47(1) · March 2019 with 344 Reads 

DOI: 10.1007/s00240-019-01125-1

Abstract
Alkali supplements are used to treat calcium kidney stones owing to their ability to increase urine citrate excretion which lowers stone risk by inhibiting crystallization and complexing calcium. However, alkali increases urine pH, which may reduce effectiveness for patients with calcium phosphate stones and alkaline urine. Hydroxycitrate is a structural analog of citrate, widely available as an over-the-counter supplement for weight reduction. In vitro studies show hydroxycitrate has the capacity to complex calcium equivalent to that of citrate and that it is an effective inhibitor of calcium oxalate monohydrate crystallization.

In fact, hydroxycitrate was shown to dissolve calcium oxalate crystals in supersaturated solution in vitro. Hydroxycitrate is not known to be metabolized by humans, so it would not be expected to alter urine pH, as opposed to citrate therapy.

Preliminary studies have shown orally ingested hydroxycitrate is excreted in urine, making it an excellent candidate as a stone therapeutic. In this article, we detail the crystal inhibition activity of hydroxycitrate, review the current knowledge of hydroxycitrate use in humans, and identify gaps in knowledge that require appropriate research studies before hydroxycitrate can be recommended as a therapy for kidney stones.

 

[Nanni]

How many of you viewing this thread have moderate -severe myalgia (muscle pain) that is resistant to the following types of medication? (Please state which categories it is resistant to):

NSAIDs(Celecoxib, iburprofen, Aspirin, diclofenac, naproxen)

Gabapentinoids (gabepntin, pregabalin, gabapentin enacarbil)

Tramadol (combined opiate agonist & selective noreepinephrine reuuptake inhibitor)

SNRIS: Duloxetine, Milnacipran

I am interested from a research perspective how great a problem myalgia is towards disability. I am very much interested in targetting a different pathway and therefore want to see if there is much of a need for an altetnative to the current status quo.

EnergyOverload

Just read your post. I am resistant to those medications. I got up to a high dose of gabapentin. Now I’m on a low dose fentanyl patch that helps a lot but nothing helps when I have gut issues going on. I don’t have a gall bladder and have been in increasingly debilitating pain. I started taking Vital Nutrients Pancreatin and Ox bile which is much stronger than other supplements like it. I can’t believe how much my overall myalgia has improved. Have you heard about the research into tarantula venom for pain. It’s a real thing. It wouldn’t be addicting. Here’s hoping...

 

[valentinelynx]

I take high dose opioids and have for decades. For many years, muscle pain was a big problem for me, and it was resistant to the pain medication. I discovered that my best treatment for muscle pain is Thai massage. I get this treatment—from a highly skilled practitioner who knows me well—about every 2 weeks, and since I started doing that, myalgias have become far less of a problem for me.

 

[Iknovate]

While my OAT did not show oxylate issues I realized that in adjusting my diet over time I was practically ONLY eating high-oxylate foods.

The awareness is helpful but I didn't notice much difference (unless it was going to take years to get there).

I'm most surprised by the use of drugs at all. I realize there are some exceptions for taking Rx, but given the fact that our greatest offense is to be found in our gut why would anyone consistently take anything that is going to mow down their offensive linebacks? Winning a single first down doesn't get you all the way to the goalposts. [I'm not even a football fan.]

 

[Emmarose47]

Yes hands and feet often and sometimes generalized all.over
..naproxen does nothing

 

[Mimicry]

I have terrible muscle pain all over my body during PEM, and no meds help it (I'm on daily pregabalin and also use naproxen, etoricoxib and paracetamol when needed). Funnily enough, ordinary salt helps it, so I'm guessing it's due to either hyponatremia, hypovolemia or hyperkalemia.

 

[pattismith]

I have terrible muscle pain all over my body during PEM, and no meds help it (I'm on daily pregabalin and also use naproxen, etoricoxib and paracetamol when needed). Funnily enough, ordinary salt helps it, so I'm guessing it's due to either hyponatremia, hypovolemia or hyperkalemia.

I think the pain and weakness is related to muscle hypoperfusion/hypovolemia.

I noticed that medications that lower my blood pressure like beta blockers or angiotensine inhibitors (this will logically lower my muscle perfusion), produce myalgia and weakness on me, so I guess muscle perfusion is the main issue for some of us. Taking salt will improve blood volume and muscle perfusion consequently.

 

[Emmarose47]

Yes no meds have helped me re muscle pain, nerve pain hands and feet and joint pain.
I started on medical medium Anthony Williams celery juice and took it up to 32z per day... Pain significantly reduced to v v minimal.
I came off it as had bad stress ibs (not due to the celery...
Now have reintroduced it again and going to increase to where I was b4...

 

[Florida Guy]

I did not see chuchuhuasi on the list of pain killers. It is an herb found mainly in peru and it has analgesic properties. I got a bottle online. Its not an opioid, not like any of the other things mentioned. Its not a super strong pain killer, it will help but its not like demerol or something. But sometimes a medication that is a little different than the one you had taken might do the job.

How about heating pads or a hot bath? Heat often seems to help with muscle pain. Vics vapo rub? Maybe a muscle relaxer?