Muscle pain

Inara

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Whenever I read "muscle pain" I am puzzled. It seems medicine doesn't define it closer which I find unsatisfactory. What exactly is muscle pain? Does it mean burning muscles like when you train intensively, is it muscle soreness like after a training, is it neuropathic-like, is it...?

Do you have muscle pain? If yes, can you explain how it feels?
 
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wabi-sabi

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It seems medicine doesn't define it closer which I find unsatisfactory.
Yes, so annoying. I think the lack of a clear definition is part of why there's been so little progress at treating it. And it also speaks to the difficulty of describing the pain experience in words.

I have muscle pain. It was one of my earliest symptoms, even before the intense fatigue. My muscles get stiff and sore with very little activity. It feels a bit like the pain you would have after working out too much. It's generally not as searingly intense as a charlie horse, but there is a burning/aching quality to it. I've been having a pain flare past few days because I've been dong too much. The pain and stiffness makes it difficult to breath. It's been keeping me awake at night, the struggle to breathe through what feels like a very tight corset. Honestly, before ME/CFS I never experienced quite this flavor of pain so it's hard for me to say exactly what it's like, because it's not like anything else.

I only get this pain in muscles I use. It's not all over muscle pain and it's definitely not flu-like muscle pain. When I got my covid shot I had the flu-like muscle pain for a few days on top of the "oxygen deprivation" pain. It was interesting to compare the two flavors of pain. The flu-like pain went away a few days after the shot and the ME/CFS pain hasn't gone away in years. I suspect it's related to muscles not getting enough oxygen due to blood vessel.

I don't know if the pain is neuropathic, but I suspect not. There's a healthrising story on muscle pain I found interesting here:
https://www.healthrising.org/blog/2021/03/30/muscle-fibromyalgia-chronic-fatigue-syndrome/
 

Woof!

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My muscles get stiff and sore with very little activity. It feels a bit like the pain you would have after working out too much. It's generally not as searingly intense as a charlie horse, but there is a burning/aching quality to it... The pain and stiffness makes it difficult to breath. It's been keeping me awake at night, the struggle to breathe through what feels like a very tight corset.
Interesting topic. Well described, @wabi-sabi. Have you also been diagnosed with FM? (It sounds like you have it.)

Your description of your difficult-to-breathe pain sounds myofascial in origin. (Been there; have that.) Myofascial pain is a tricky situation, since myofascia encases and connects everything from the tip of your toes to the tip of your head. I swear by dry needling to unwind my spasming myofascia, and after a DN session, my muscles feel like they just escaped from wearing clothing four sizes too small.

Wabi, have you ever tried dry needling (done by a good physical therapist with additional training and good instincts)? Your "oxygen-deprivation" description makes me think you would benefit from it.
 

wabi-sabi

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Have you also been diagnosed with FM?
How interesting you should ask!

When I went to the Mayo a few years back (still have the medical trauma, thank you) they thought I had fibro too. I believed them for awhile. Then I met friends with fibro and they describe an exquisite torture of pain that I just don't experience. Thank Goodness! They are in too much pain to move. I am too tired to move. When I don't move, my pain goes way down. Theirs doesn't. The upshot is I don't know.

The healthrising article seems to describe fibro and ME/CFS pain that feel qualitatively similar, but have different causes.
 

hapl808

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My muscles get stiff and sore with very little activity. It feels a bit like the pain you would have after working out too much.
Very similar to my experience. For me, picking up a shopping bag will give me a similar pain later as the pain of actually straining or pulling a muscle. If it's minor, it'll take a few hours to a few days to heal. Sometimes longer, or if I really strain a muscle it never heals. I also have gotten the breathing issues when I'm in a crash - one neurologist thought it looked like intercostal neuralgia.

But in short, it feels very similar to 'pulled muscles' for me most of the time.

I also mostly had fibromyalgia ruled out (to the degree that's possible). My pain tends to dissipate if I don't use the muscles. I'm just too exhausted to move, and I crash when I do. I have none of the particular fibro trigger points, and my rheum thought I didn't not present at all like her patients with fibro.
 

wabi-sabi

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My pain tends to dissipate if I don't use the muscles. I'm just too exhausted to move, and I crash when I do.
Yes, this is just like I feel!

I have some fibro trigger points, in that if you push on me when I'm crashed they will hurt, but the whole "pulled muscle" hurts. I know that fibro has muscle pain too, but it's my understanding (correct me if I'm wrong, fibro people) that it hurts all over the body. My muscle mostly just hurt abnormally when I use them (hence my oxygen deprivation hypothesis). I don't have all over pain unless I "pull" all my muscles at once.
 

Woof!

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I have some fibro trigger points, in that if you push on me when I'm crashed they will hurt, but the whole "pulled muscle" hurts. I know that fibro has muscle pain too, but it's my understanding (correct me if I'm wrong, fibro people) that it hurts all over the body. My muscle mostly just hurt abnormally when I use them (hence my oxygen deprivation hypothesis). I don't have all over pain unless I "pull" all my muscles at once.
As someone with both FM and ME/CFS (which take turns making me miserable), think FM if the response you get when someone touches at least 13 out of 18 well-described pain points is collapse, exquisite pain and (often) nausea. The effect isn't "pulled muscle" pain. It's the kind of pain that makes you want to cry and run away, but you can't because you've just collapsed (and the pain doesn't go away for a very long time; rather it tends to self-perpetuate). FM hell.

Your description of struggling to breathe through what feels like a very tight corset, without all the FM pain points, sounds like widespread myofascial pain. The good news is: a well-trained PT with good instincts can help ease the corset feeling with several sessions of dry needling. (Been there; done that.)
 

Wishful

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What exactly is muscle pain? Does it mean burning muscles like when you train intensively, is it muscle soreness like after a training, is it neuropathic-like, is it...?
All of the above? ;) I expect there are many different ways for us to perceive the sensation of pain, some with a cause in the muscles, some with a cause in the brain.

The muscle aches I experienced from ME were almost definitely neuropathic. Nothing wrong with the muscles, but the 'registration of pain' was triggering, probably from malfunctioning neurons or glial cells. The aches didn't change significantly with rest or strenuous activity or NSAIDs. LDN blocked them effectively. I tried acupuncture twice, and the first time it blocked the pain effectively. The second time had no effect. I didn't bother trying again, since LDN was very effective and reliable and cheaper.
 

Wishful

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It sure hurt a lot having needles stuck in me.
I didn't find the needles painful at all. All I did was lie on a comfy bed in a dimly-lit room, listening to really relaxing music. I thought it was much more pleasant than swallowing LDN capsules. However, a capsule of LDN lasted about as long as the acupuncture benefits, at maybe 1/300 of the cost.
 

hapl808

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I hated acupuncture. Although I've recommended it to others that it's helped, I found it exceedingly uncomfortable. The needles hurt, and within 3-4 needles I usually start feeling nauseous. I've tried it many times with many skilled practitioners and found very little benefit even if I suffer through it.
 

Wishful

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My experience with acupuncture is one session that helped, and one that didn't. I'm definitely not a serious proponent of it. However, if someone is desperate for relief from pain, it's something they can at least try. Some people seem to find benefits from it. Even if it's only the placebo effect for some, that's still some value.

Maybe needle type or location on the body makes a difference in needle pain. Mine were in my feet, and I don't remember any pain from them. Blackfly bites (got one yesterday) were much more painful. I also don't have much problem with needles at the dentist's, while other people consider them horrible torture, so individual pain tolerance is involved.
 

Wishful

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Thinking about my last comment, individual pain tolerance might be a major difference between people's complaints about pain, and thus responses to treatments. For a given cause of pain, such as a pulled muscle, one person might consider it an annoyance and maybe take an aspirin to take care of it, while another person feels unrelenting agony, undiminished by OTC pain relievers. Pain is a complex issue.
 

wabi-sabi

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Pain is a complex issue.
Yes, so in a way fascinating. It's inherently subjective and affected by other things like mood or sleep deprivation. I'm grateful that for the most part my pain is not severe compared to the fatigue or the OI. On the other hand, it can be unrelenting and that sure does get wearisome.

I also find the placebo effect fascinating- that the brain can modulate the subjective sensation of pain. I suspect that many complementary modalities do have an aspect of placebo effect. Sometimes I wish m brain would do this better!
 

Inara

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Thank you everybody for your contribution! Quite helpful in understanding.

Why aren't doctors, especially researchers, more interested in defining the different muscle pain qualities in more detail? Does it give them no extra information? If so, why? I would have assumed it does.
It's a topic I don't find in publications that much, too.
 

wabi-sabi

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Why aren't doctors, especially researchers, more interested in defining the different muscle pain qualities in more detail? Does it give them no extra information? If so, why?
Pain is such a difficult topic! On the one hand, healthcare people take it quite seriously in that it is considered a vital sign, right up there with pulse, respiration, and blood pressure. On the other hand, it's much more difficult to assess and measure than other vital signs.

I put some of this down to the difference between objective and subjective clues. Subjective things are the ones that are entirely dependent on a person's individual situation: their life history, their personality, their unique physiologic make-up. They aren't accessible to observers except through telepathy, which people just haven't invented yet, and they may or may not be an accurate reflection of reality. If you have a mental illness like depression, anxiety or bipolar, I bet you can think of times when your impressions of a situation were really, really out of touch with reality and you needed a friend to get you back.

Objective things are the ones that everyone can see and experience without the need for telepathy. In a good way, objective is a way of saying "shared reality" rather than "personal reality". A philosopher might call objective stuff "the fact of the matter" or a religious person might call it God's omniscient perspective. This is where we start to get into trouble in healthcare. Healthcare people are encouraged to see the patient's perspective as subjective-personal, and may or may not be reality based. They are encouraged to see their perspective as objective- non-personal, unbiased fact. I bet you can see how that would be problematic. This is where we get doctors saying condescending things like "The symptoms or real but the disease isn't" or "I know you feel that way, but...".

"All in your head" is the ultimate way of saying it's just a subjective issue, not a real (meaning objective) problem. It's why so many treatments for fibro are aimed at changing the perception of pain, not the cause of the pain.

So the problem of pain is really complicated. Even when I listen to my friends talk about it-people I believe and care about- it can still be hard to figure out exactly what they are feeling. If a healthcare person is listening with a bias that your pain is "just a perception" and not "real", meaning subjective and not objective, there's very little chance they will figure it out.
 

hapl808

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Pain is such a difficult topic! On the one hand, healthcare people take it quite seriously in that it is considered a vital sign, right up there with pulse, respiration, and blood pressure. On the other hand, it's much more difficult to assess and measure than other vital signs.
They don't take it seriously. My understanding is that the 'considered a vital sign' is a direct result of the significant lobbying and outreach by Purdue. They were able to get the US hospital system to require pain as a vital sign - this was not the case in the early 90's for instance. If they had a certain level of pain, then doctors were required to treat it - likely with something like Oxycontin which they had 'proven' was non-addictive.

Straight line to 70k dead Americans every year because the hospitals added pain as a vital sign but had no clue how to treat it safely and effectively.
 

wabi-sabi

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My understanding is that the 'considered a vital sign' is a direct result of the significant lobbying and outreach by Purdue. They were able to get the US hospital system to require pain as a vital sign - this was not the case in the early 90's for instance.
Here's an interesting citation: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5878703/

The American Pain Society called for pain to be included as a vital sign in 1995. I'll have to read up on that! Another problem was in 2010 when pain scores got tied to patient satisfaction scores and patient satisfaction scores were tied to hospital reimbursement by Centers of Medicare and Medicaid Services. It's partly a case of good intentions going array. You want hospitals to pay attention to patients' pain, so you pay them better when they do....unfortunately, without a way to assess or treat pain you end up with opioid addiction. It's also partly to try to cut healthcare costs. The real kicker was a Deficit Reducation Act in 2005 that tried to give hospitals less money, because, you know, saving money is more important than providing healthcare. Hospital reimbursement was tied to patient satisfaction. patient satisfaction is tied to pain scores, pain scores can be reduced by opioids.

While I'm sure the venality of pharmaceutical companies plays a role, the bigger and scarier problem is that we just don't have a good way to make pain go away because we don't understand pain. The other big and scary problem is that we value money over health and are happy to save money at the expense of harming health.