So What Exactly is Happening in our Muscles?

flannery

New member
Joined
Nov 27, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
00/1988
Country
US
State
WA
Hello all, just found the forum and very happy to have done so. I've been sick with ME/CFS and Fibromyalgia for almost 40 years and have gone from being able to work around home a few hours in the morning to now maybe an hour before the awful muscle pains/spasms start around my ribs wrapping around to my spine which is one of the symptoms I haven't found a way to deal with very well.

Heating pads help, for a bit. Sometimes hot baths, again for a bit it helps. Very small amounts of cannabis (edibles and in state where it is legal) help with the pain but often have to add a low dose codeine for the times the tight muscles make me think I'll soon hear/feel a rib snap. I'm sure it has inflamed the rib cartilage enough to give me a case of costochondritis.

I read all of the medical research that I can and am still left with just what is happening in our FM muscles. Lactic acid build up, neuralgia, not enough blood or oxygen in the muscles???? Does anyone have a better understanding than I do of what the main cause of all our muscle pain/tightness might be?
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Flannery, and welcome to the forum.

the thing with FM is that no one knows what the actual causes of it are. the doctors don't know, the researchers don't know, and no one here knows. That's the whole crux of fibromyalgia. They don't know.

The good news is that you don't need to know the whys and the causes. In fact, I suggest that you not spend very much time or energy trying to find that out because you will not be likely to find anything, and your time and energy can be better spent working to manage your symptoms as best you can so that you can have a good life within your limitations.

I suggest you read the post I wrote full of advice on doing this. Several people have said it was helpful to them, and I hope it is for you.
 

flannery

New member
Joined
Nov 27, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
00/1988
Country
US
State
WA
Thanks sunkacola, I guess I didn't phrase my question well enough to convey what I am seeking. I have had this illness for 40 years and believe me I do indeed know that there is no one who knows 'what causes FM'. That is not what I am asking, I am asking if anyone has come across any information - say from a good physician, researcher, or medical journal - about what specifically may be involved in what makes our muscles so tight and painful?

I've lived rather hopefully and successfully with FM for four decades by becoming as informed as I can by trying to figure out specific symptoms and trying to determine just what is happening - not what caused, but what exactly is happening in a body system that might bring about that symptom. And then I can try to find natural treatments that possibly might alter that symptom. Great example is overcoming the sleep problems both ME/CFS & FM bring with them. After researching I decided to give melatonin a try years ago and found all of the many benefits of melatonin and that the amount most people take is far too low.

My healthy husband and I have taken high doses of melatonin for a couple of decades and get terrific sleep. What is high dose? We take 100 mg each and now years later there is much evidence of all the other health benefits it contributes to. So in getting a better understanding of why our sleep can be a big problem and addressing that problem with something healthy and safe, I've overcome one of the foundational symptoms of this illness.

Now, as I'm experiencing the worst skeletal muscle pain I've ever had, I am trying to find if there is research that shows just what abnormalities exist in our - muscles, nerves, myofascia - that might suggest some avenues to explore specific treatments.

Hope that explains it a little better :)
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi flannery,
I think I do know what you mean (and sunkacola does too). I'm similarly pinpointing symptoms, analyzing them, looking for possible direct influences and trying a load of things out, often finally coming up with what works for me. You have done this, too, and you have found melatonin works for you. I have tried melatonin, L-tryptophan and 5-HTP for sleep, in high doses like you, and also a load of other supps and herbal remedies, things that clever docs promise will help, and almost none of them helped me at all. But I have pinpointed 30 things that wake me up at night and several things that stop that, and got almost all down to zero, plus TCM/acupressure focussing on this has helped, and when nothing else can stop my mind or body freaking out a little, I have an ice-cold shower and 10 minutes later I'm sleeping like a baby. So there we are - different :cool:
But that said I think you're looking for ideas like this(?):
The newest research about nerve-oversensitivity, overreacting or amplification of pain is something which doesn't fit to my fibro-pain experience, and I don't think my success with whole body cryotherapy and cold showers has to do with that. My three vague ideas are 1) that behind my fibro there may be something auto-immune and/or inflammatory that can't be measured yet, 2) an energy-turnover-problem on a cellular level, which might mean ATP isn't working as it should, praps a kind of mitochondrial disease 3) an oxygen problem, like you say too. I feel the first might explain my fluey-feverishness after muscle-over-exertion and the second and third my flash-in-the-pan-energy which usually crumbles after about 2 minutes. Both the kind of muscle pain and sort-of-weakness you seem to be targeting. The first would perhaps explain why short cold shocks are helping me a lot (according to one doc of mine ) and the second and third why the Wim Hof breath-holding-exercise is helping me a lot, as well as nosestrips under my thick, good "FFP2+"-mask otherwise I "die".
But not that many of us have fluey-feverishness, and I've never heard of anyone with this weird flash-in-the-pan-energy of mine.
All the same, you might like to try one of these or some of my other stuff (see my profile and other posts).
Even better would in my experience be to watch and describe your skeletal muscle pain more closely. For instance: In my case I don't call it pain, I call it The (Big) Ache. With pains I describe stabs in my joints, clavicle, trigger points, etc. Is that the same for you, too?

"what is happening in our FM muscles. Lactic acid build up, neuralgia, not enough blood or oxygen in the muscles????"
Coming back to this, I'd say: I wouldn't be sure of "our", seeing a lot of things in common, but also the individual differences I don't even think FM is one thing alone, more like a spectrum. But let's say it's one or all of your four ideas: What are you going to do about it, where does it get you? Maybe cryotherapy and breath-holding? ;-D
 
Last edited:

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
I have found that changing my diet and some supplements as well as essential oils with marrijuana.
This is over a 6 year time-line. At first I couldn't get out if bed with swollen feet and knees. After seeing several medical doctors I found an alternative doctor who had suffered same as me so I followed his advise. Stopped eating grains, dairy, sugar and night shade vegetables. I also have hasimotos thyroiditis. Supplements suggested to me were cucumin. Valerian root and B complex. Then I read about essential oils and make a pain cream with coconut butter infused marrijuana. Which is my first go to when I hurt. Some yoga will help as well.
Everything works differently for everyone so all you can do is try to find relief.
 

flannery

New member
Joined
Nov 27, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
00/1988
Country
US
State
WA
Thank you Creola17 for the kind reply. I too find help with cannabis and supplements and none more importantly than high doses of Melatonin, however, my question is not about treatment but about cause. I am sure that understanding what is happening in the muscles, fascia, nerves, would help guide those choices about treatment for each of us. So this thread is NOT about what treatment but about what is causing those symptoms :)
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
There lies the problem. No one knows yet. I keep checking to see if anyone is researching fibromyalgia. One study showed that we don't have enough dopamine so the pain is worse. I find myself jealous of people with MS or cancer, only because there's so much research. I even take RSO just incase it will help. It helps me sleep.
I see all these walks for MS and other diseases but nothing for us. So we have to keep trying, until someone gets it right.
There is a brain doctor in Reno that believes in treating the whole body.
But nobody has come up with why.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
So this thread is NOT about what treatment but about what is causing those symptoms
I think you are in the wrong place to ask this question. Not that you are not completely welcome here of course, and your question is a valid one that we have all had, myself included. But the thing is, no one knows what is causing it, not even the people who are studying it, and the folks on this forum sure don't know because we are neither researchers nor doctors, just people who are experiencing fibromyalgia and come here to help each other if we can.

If you are just really interested in the topic, do some research. There's plenty of info out there on fibromyalgia. But I doubt you'll find answers, unless it is someone trying to sell something they claim will help or cure. If you do find interesting information, feel free to share it with us, but please just tell us the source of it and do not post links directly to the articles because outside links are not permitted here for security reasons.

And do come here for support and encouragement and the answers to questions that we can answer. We are here to help. :)
 

flannery

New member
Joined
Nov 27, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
00/1988
Country
US
State
WA
Actually, sunkacola your responses could make one feel rather unwelcome. It is as if you have answered my question and so why don't I just accept it.

Do some research? lol, it looks like my guess that you don't actually read a full post is correct. As stated in earlier posts, I read MANY research reports on a daily basis since I have signed up at all the major publications that keep up to date with the latest studies on both Fibromyalgia as well as ME/CFS. There is always the possibility of missing something that someone else has come across and that is what led to my coming to a community of FM patients.

Indeed it is true that there is no known 'cause' but there is MUCH information available about studies done across the world that have verified so very many abnormalities that this awful illness produces. It makes sense to look at those abnormalities and try to determine what that might then affect.

It seems, sunkacola, from reading posts that this is 'your' community and I'll just say thanks but no thanks to participating in it. May we all be as well as we can be and may coming days find something that doesn't need 'further study' but actually gives us something that can be used to help us.

Best to you all, but it is enough of a struggle to live with such a debilitating illness and having to deal with someone who seems to get upset by discussion is just not worth the bit of energy and health I have.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hold on there, flannery, if you're still there: There's a whole lot of people here - you haven't answered my long posting above, for instance, with theories (I've read) and questions for you... And I can't see that sunkacola is upset or stopping your discussion, just making sure you don't have too high expectations. I hope you're not upset or stopping the discussion yourself... ;-)
Now you've explained you are well read, it might help us to know *your research results first, to start the discussion on the level you are on. I've also read a lot, and discussed the above mentioned ATP-theory with an acquaintance, but realized this theory may seem to fit a bit, but the doc concerned is making far too high claims with badly based contentions and his high-dosage-supp-treatment helped me nought, even if it seems to help my acquaintance a bit. Same goes for most other theories I've read: They don't fit to my experience of the disease and don't help me at all. So I'd be interested which of the results you've found give you hope that a striking, helpful solution is impending.
The newest thing I've come across, but which was discussed here in 2014, so it's old, is the so-called fibromyalgia-test (fm-a-test) from Epic Genetics, where they're using 4 proteins as an indicator - I'm not flabbergasted. There have also been a few long posts here in the last month with new results which also didn't exactly knock my socks off.
 
Last edited:

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
Yes please stay. I don't think Suncakola meant any harm. We're all trying to help each other through our experiences. I just read how some fibromyalgia patients are having less pain using a drug that's for diabetes.
Here's part of it...
using a common blood test for insulin resistance, or pre-diabetes. They then treated the fibromyalgia patients with a medication targeting insulin resistance, which dramatically reduced their pain levels.
(((gentle hugs)))
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Unfortunately, I think that flannery was offended by one of her posts being removed for having an outside link in it, which is why I suggested to her that she not use those. Of course I was not upset by anything she said (it takes more than that to upset me) although it seems she is upset.

Certainly this is not "my" forum, (gosh, I wouldn't want it to be), and I strongly suspect that if I started acting as if it were, some of you would call me out on it immediately! At least, I sure hope you would. I am open to criticism and want to make my presence here useful and helpful. I am at times blunt, and perhaps I was not tactful enough for her, which is unfortunate if so. I tend to "call it like I see it", but never want to offend anyone.
 

Little Debbie

Member
Joined
Oct 6, 2020
Messages
14
Reason
DX FIBRO
Diagnosis
05/2019
Country
US
State
GA
Flannery, you nailed it in your last comment! Thank you, I feel the same way
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
We're all trying to help (I hope) so please no worries. We have enough to deal with. I would like to send hope and love to everyone who is suffering. We need to keep sharing experiences to help one another!
(((gentle hugs to all)))
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Flannery, you nailed it in your last comment! Thank you, I feel the same way
Sorry about that, Little Debbie. All of us are here only to help each other, and that is all that I try to do when I post. None of us likes every single post that others make, but we need to keep in mind that we are all here for positive reasons. As Creola says, we all have enough to deal with; we all are suffering from chronic pain and all of the attendant things that go along with that.

We all want to receive and give information and discuss things. If we don't agree, there's no reason we cannot say so politely. I strive always to be polite. If I offend someone, it is only because I am human and make mistakes like anyone else, and also it is very easy to misinterpret what someone says on the internet, where you cannot hear tone of voice or see expression. Again, If anything I said offended you, I am sorry about that. We can all always strive to do better, and that includes me, and I appreciate getting feedback.
 
Top