What is happening in the body re pain ?

Emmarose47

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Hi
Looking for knowledge from others who understand the science behind what is happening in our bodies when we experinece pain with m.e CFS .

I get a lot of pain in lower arms and legs . It feels like bones being crushed , heavy throbbing aching . My hands and feet can get very sort of arthritic type pain aching throbbing stabbing .
It's all part of PEM but I'm wanting to understand what is happening inside of me . I'm sick of going to the doc waste of time . I began to explore neuropathy with them ( what exactly is that ? But just abandoned it after doc said it's just part of the m.e
 

Tammy

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Just my personal opinion. If not from an injury, pain is caused by a pathogen whether or not it is a bacteria or a virus. Just a couple of examples. Look at the pain caused by a UTI from a bacteria.............or look at the pain caused from the flu.......when a person gets achy all over. Look at the pain caused from having the shingles virus attacking the nerves. Speaking of Shingles, I believe it to be the root cause of neuropathy. A person can have shingles without a rash showing up.
 

Emmarose47

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Just my personal opinion. If not from an injury, pain is caused by a pathogen whether or not it is a bacteria or a virus. Just a couple of examples. Look at the pain caused by a UTI from a bacteria.............or look at the pain caused from the flu.......when a person gets achy all over. Look at the pain caused from having the shingles virus attacking the nerves. Speaking of Shingles, I believe it to be the root cause of neuropathy. A person can have shingles without a rash showing up.
I nteresting thanks Tammy ...
I had chicken pox when I was young and got v few spots ...I used to get a lot of cold sores herpes virus and I read there is a link with herpes and CFS ..

I understand pain can come from inflammation well I guess all pain is inflammation but yep what causes it ..
I'd like to understand more the science behind CFS pain
 

Jadzhia

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I think the release of cytokines causes pain, and they'd come from an inflammatory response of the immune system, whether in response to a pathogen or due to autoimmunity. That sounds like a horrid pain, @Emmarose47. Whenever doctors say 'it's part of having X condition...' it means they don't know, plus it also sends a message to the patient that you just have to put up with it and there's nothing they can do. I can never accept that sort of remark. There's always a reason for what we experience, I always want to know what it is!

I don't think we can say there's a link between CFS and herpes as pretty much 100% of the population has encountered herpes viruses. You'd need to find people who'd never had it as a control group, but I don't think they exist.
 

Wishful

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I had fairly strong aching: mainly focused on my front thigh muscles, but when the rest of my ME was severe, the aches would be body-wide. I'm pretty sure it was neurological in origin: the perception of pain despite muscles and nerves functioning normally. Researchers still don't know how we perceive pain, and there are various systems involved. I believe that ME is causing some brain cells to function abnormally--different areas to different degrees in individuals--and that for some of us, this leads to the perception of pain. If you truly want to understand the mechanism behind your pain, you'll have to outdo the top researchers in the world, because they can't explain it yet either.

I also get a sharp stabbing pain on the outside of my hips, where there's no significant physical cause, so I expect that too is neurological. It only crops up occasionally, and I haven't figured out what factors trigger it.

For me, LDN blocked the perceived muscle aches very effectively ( I assume through its endorphine-stimulating effect). After a year or two of that, I no longer needed the LDN. I tried acupuncture twice: the first time it blocked the aches completely for several days; the second time it had no noticeable effect. LDN was cheaper and more reliable, so I didn't try acupuncture again.
 

Emmarose47

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I think the release of cytokines causes pain, and they'd come from an inflammatory response of the immune system, whether in response to a pathogen or due to autoimmunity. That sounds like a horrid pain, @Emmarose47. Whenever doctors say 'it's part of having X condition...' it means they don't know, plus it also sends a message to the patient that you just have to put up with it and there's nothing they can do. I can never accept that sort of remark. There's always a reason for what we experience, I always want to know what it is!

I don't think we can say there's a link between CFS and herpes as pretty much 100% of the population has encountered herpes viruses. You'd need to find people who'd never had it as a control group, but I don't think they exist.
Thanks jadzhia
Do u have more knowledge / reading I can do as CFS as autoimmune .. I mostly read is isn't but we do have an abnormal immune response ...
Agree I've pretty much given up with the regular gp
 

Emmarose47

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Thanks wishful ..
Good to hear your knowledge and experience . I just read about LDN .. says off license in UK not sure how many docs will prescribe it ..
Maybe something I can look into
 

Hopeful1976

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Recommend looking at Lorimar Moseley from Austalia. He is amazing. He co wrote explain pain and many other books. There are lots of YouTube videos to watch of him, Tedex and uni talks. It really opened my eyes and his ideas now form a lot of NHS work into pain conditions.
 

Learner1

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I get a lot of pain in lower arms and legs . It feels like bones being crushed , heavy throbbing aching . My hands and feet can get very sort of arthritic type pain aching throbbing stabbing .
It's all part of PEM
I'm very interested in what you are feeling. If I overdo it exercising, I feel a weak, drained feeling in my lower arms and my legs, and I literally can't move. If I rest for 20 minutes, laying down, eyes closed, and totally turned off, I can usually recover to walk away from the situation, though I can have PEM for up to 5 days. My metabolic testing on a treadmill showed that I am preferentially doing glycolysis and am not using fatty acid oxidation when I should be. The two theories that I have are that I've used up all of the glycogen stores in my muscles faster than I can replenish them or simply that my mitos can't keep up with the energy demand - both I think are different ways of looking at the same thing.

I'm wondering if you may be having a more intense version of it that causes the pain.

Things that help me recover are glutathione and branched chain amino acids, which reduce oxidative stress and feed the mitochondria. NMN and hydrocortisone can also help.

I also had neuropathy from my chemotherapy - my BB atiropathic doctor had me try NAC and alpha lipoic acid, which reduced oxidative stress and repaired my damaged nerves. It makes sense that antioxidants would help damage caused by oxidative stress.
I get a lot of lymph node swelling , left side tinnitus , head pain , ear ache as well as the arm and leg pain
Tinnitus can be low vitamin D, low B6, or low B12. Lymph node swelling suggests a viruses - EBV, HHV6, or CMV?
Look at the pain caused from having the shingles virus attacking the nerves
Agreed!
I don't think we can say there's a link between CFS and herpes as pretty much 100% of the population has encountered herpes viruses. You'd need to find people who'd never had it as a control group, but I don't think they exist.
And, this is why we are still sick... ME/CFS has indeed been linked to EBV and other chronic infections. EBV has also been definitively linked to multiple sclerosis, several types of autoimmunity, and several cancers... Too many doctors Disney SS it as a culprit and don't even consider testing for it or HHV6 or cytomegalovirus, much less enteroviruses, Lyme and co-infections, etc.

If lymph nodes are swollen, particularly with even a slight elevation in WBCs, it would be wise to test, not only for antibodies, but also PCR tests for these common infections
Do u have more knowledge / reading I can do as CFS as autoimmune .. I mostly read is isn't but we do have an abnormal immune response
"
ME/CFS shares some features of autoimmune illnesses (diseases in which the immune system attacks healthy tissues in own body, like in rheumatoid arthritis). For example, both ME/CFS and most autoimmune diseases are more common in women and both are characterized by increased inflammation."

https://www.cdc.gov › possible-causes
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - CDC

https://www.mdedge.com/rheumatology...issue-diseases/emerging-data-point-underlying
https://pubmed.ncbi.nlm.nih.gov/29635081/

https://www.frontiersin.org/articles/10.3389/fimmu.2018.00229/full

https://www.sciencedirect.com/science/article/pii/S1568997218300880

https://www.moleculeralabs.com/cunningham-panel-pandas-pans-testing/
https://www.science.org/doi/10.1126/sciadv.1400121


https://www.omf.ngo/autoimmunity-and-autoantibodies-in-me-cfs/

https://www.nih.gov/news-events/new...ein-can-switch-risk-genes-autoimmune-diseases

https://www.celltrend.de/en/pots-cfs-me-sfn/
 

Wishful

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.. says off license in UK not sure how many docs will prescribe it ..
When I asked my doctor (here in Canada), he was fine with it, since naltrexone was safe at the regular levels, so it was even safer at greatly reduced dosages.

That said, many people here have tried it, and had no effects, and I think some had negative effects, but some of us had positive effects, so it's a 'see if it works for you' treatment ... well, that describes all treatments for ME.

It really worked well for me, and greatly increased my quality of life. I could enjoy hiking again! The day after my first dose, I managed to hike several km's without aches, and finished with a smile on my face.
 

Learner1

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When I asked my doctor (here in Canada), he was fine with it, since naltrexone was safe at the regular levels, so it was even safer at greatly reduced dosages.
I just had a physiatrist at Mass General suggest it for me, but I'm already on it. My ME/CFS specialist says he wants me in it to quiet microglial activation as well as for it's immunomodulatory properties.
 

Wishful

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I'm wondering if you may be having a more intense version of it that causes the pain.
@Emmarose47 , do your aches depend on activity level? My aches didn't; they existed even when I was resting, and weren't significantly worse after a long walk, so that points to the muscles not being responsible for my aches. If severity is activity dependent, it's more likely--but not 100% definitely--due to muscle metabolism.
 
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I think the nature of our pain varies in people...suggesting we may have any number of issues going on.

I get alot of generally achy feeling from very lax ligaments.

Upper thighs muscles seem the worst for- weird pain.

Hips always ache.

Dull dull neck/head ALL the time, I just am grateful I don't get migraines.

Lymph nodes not good/ actual pain there. Im in denial.

My right eye is bad off- today like it was hit with a baseball bat.
 

Treeman

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In the low oxygen theory in the blood caused by micro clots, I watched a interview recently with a researcher that informed once the cells get low in oxygen they start to pump out cytokins, so causing the muscle pain etc.

I tried LDN but got nothing from it. It can be enquired from Dickson Chemist in Glasgow. Do an internet search for them.
 

Treeman

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Additionally, my legs, arms and hands constantly ache. However as the day wares on the pain subsides. I often consider it could be caused by lactic acid after low oxygen in the blood causing my body to operate in a non aerobic condition.
 

Emmarose47

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Recommend looking at Lorimar Moseley from Austalia. He is amazing. He co wrote explain pain and many other books. There are lots of YouTube videos to watch of him, Tedex and uni talks. It really opened my eyes and his ideas now form a lot of NHS work into pain conditions.
Ooh thanks hopeful ....I'm in UK too
 

Hopeful1976

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Look up the pain revolution and the website 'tame the beast' - both by lorimar Moseley. Its fascinating stuff and based on the latest knowledge of neuroscience. The uk is utterly rubbish when it comes to m.e and help for us - I stumbled on Lorimar and pain while trying to help myself. It has helped me so much understand the pain of m.e and fibro x
 

Emmarose47

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Look up the pain revolution and the website 'tame the beast' - both by lorimar Moseley. Its fascinating stuff and based on the latest knowledge of neuroscience. The uk is utterly rubbish when it comes to m.e and help for us - I stumbled on Lorimar and pain while trying to help myself. It has helped me so much understand the pain of m.e and fibro x
Thank u so much wishful ! 🕊️
Yes it's shocking isn't it how poorly understood we are
 
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reporting new pains...

my right arm is all rather numb feeling and weak and electrical and near the laptop it gets worse.

These "things" in my body seem to intensify when near the devices. I can feel it "worsen" as my arm approaches.

Gotta clear this odd thing out, feels like neuropathy.