back pain and immune system or inflammation

lobba123

Senior Member
Messages
250
i dont have cfs but i saw some posts talking about it and was thinking maybe there is also correlation with immune system function/viral infections.so i was just curios if there is a connection

lately i am having it more often, i am on gcmag (30weeks)+entecavir antiviral+tenofovir antiviral+antioxidant therapy, maybe it is an effect of tenofovir on kidneys not detactable by tests or maybe changes in immune function

what is your experience with this?

thanks
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Well, I can say that back pain is a symptom of inflammation for me.
It does seem to be coming from the kidneys. In my case, my kidneys react to the presence of environmental toxins by hurting. The tricky thing to figure out is whether the toxins are coming from the place where I am or from an internal release of stored toxins.
Yes, the GcMAF may be causing this symptom in me also.
 

Jenny

Senior Member
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1,388
Location
Dorset
Hi lobba

I've often wondered about pain and inflammation. There seems to be an assumption that all ME pain is due to inflammation, but is this really the case?

I have a lot of pain these days when in a relapse. Pain in lower back, elbows, knees and anywhere where I've had a previous injury. Also, oddly, pain in palms and soles of feet. And sometimes it's too painful to hold a pen.

Is all this due to inflammation? Assuming it is, I've taken large amounts of almost every so-called anti-inflammatory supplement, and also lots of anti-inflammatory medications, and meds for neuropathic pain. The only thing that helps is tramadol, and I don't think that's an anti-inflammatory, more like an opiate.

So what's causing all this pain? Can it really be inflammation? Or is it a problem with pain receptors (but if so, why are my palms affected, for example?)

Jenny
 

lobba123

Senior Member
Messages
250
thanks for the feed back, it has resolved now, i also think that's due to inflammation i've increased liposomal vit c to 20-30gr a day and it resolved at least until now

Hi lobba

I've often wondered about pain and inflammation. There seems to be an assumption that all ME pain is due to inflammation, but is this really the case?

I have a lot of pain these days when in a relapse. Pain in lower back, elbows, knees and anywhere where I've had a previous injury. Also, oddly, pain in palms and soles of feet. And sometimes it's too painful to hold a pen.

Is all this due to inflammation? Assuming it is, I've taken large amounts of almost every so-called anti-inflammatory supplement, and also lots of anti-inflammatory medications, and meds for neuropathic pain. The only thing that helps is tramadol, and I don't think that's an anti-inflammatory, more like an opiate.

So what's causing all this pain? Can it really be inflammation? Or is it a problem with pain receptors (but if so, why are my palms affected, for example?)

Jenny
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
I have Uber chronic pain from a surgical cervical disectomy with fusion, DDD, spinal stenosis, arthritis etc. My first ME CFS symptom was pain. My surgery launched my undiagnosed ME CFS into orbit. I believe that I have bad things in my spinal fluid as well. I went off all opiates after 9 years and life is a bear to handle. Bottom line I believe that ME CFS somehow screws up your pain/volume control "switch" in your brain. It is a infuriating process as it is up and down and never the same. I think all the normal hurts that I have are AMPED UP by many different disease processes of ME CFS. It's a roller coaster that speeds up and slows down on it's own volition for no reason. My humble Opine!
 

Daffodil

Senior Member
Messages
5,855
inflammation seems to cause lower back pain for me too...its a newer symptom. i noticed it today. i am depressed and a little paranoid so i always think its probably ovarian cancer lol
 

natasa778

Senior Member
Messages
1,774
L-carnitine was causing tremendous lower back pain for me. Took me months to figure it out - it got gradually worse, wasn't too bad at the beginning so the link wasn't immediately obvious. Once I started suspecting it I tried stopping and starting and the pain correlated 100% with it. It would happen in a matter of hours after taking a cap, and would gradually ease off after about a day or so. Saying this as I don't think this was linked to inflammation ... could be, but hard to see how the effects would be so immediated and go away so soon if it was 'just' inflammation. Don't know. Raised prostaglandin involved maybe? It came up few times in my search, trying to figure out why this was happening, but couldn't put my finger on it. Still don't know. Same thing happened with q10, only the pain was slightly less intense.
 

adreno

PR activist
Messages
4,841
I've often wondered about pain and inflammation. There seems to be an assumption that all ME pain is due to inflammation, but is this really the case?

Good question. I believe the answer to that is no, pain isn't always due to inflammation. Sensitization of nerves, increased calcium influx of ion gates, increased substance P, are a few factors that come to mind. But in reality, the causes of chronic pain are not very well known. If they were, we would be able to treat it much better than we can today.

I see a tendency for many people to conclude, without any testing, that they have high levels of inflammation, "cytokine storms" and the like. There is no basis for these conclusions without proper testing.
 

heapsreal

iherb 10% discount code OPA989,
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australia (brisbane)
Good question. I believe the answer to that is no, pain isn't always due to inflammation. Sensitization of nerves, increased calcium influx of ion gates, increased substance P, are a few factors that come to mind. But in reality, the causes of chronic pain are not very well known. If they were, we would be able to treat it much better than we can today.

I see a tendency for many people to conclude, without any testing, that they have high levels of inflammation, "cytokine storms" and the like. There is no basis for these conclusions without proper testing.

Agree, many of us could have pain from nerve damage/irritation, neuropathic pain, i suppose there is some degree of inflammation in many pain conditions. I think if one got minimal effect from anti-inflammatory meds then u could guesstimate its more neuropathic pain then inflammatory pain, especially if its a tingling, burning type of pain.

cheers!!!
 

floydguy

Senior Member
Messages
650
Good question. I believe the answer to that is no, pain isn't always due to inflammation. Sensitization of nerves, increased calcium influx of ion gates, increased substance P, are a few factors that come to mind. But in reality, the causes of chronic pain are not very well known. If they were, we would be able to treat it much better than we can today.

I see a tendency for many people to conclude, without any testing, that they have high levels of inflammation, "cytokine storms" and the like. There is no basis for these conclusions without proper testing.

BTW I think inflammation seems like a good guess as any. Is inflammation not part and parcel of ME? In any event, I have been tested and there is widespread inflammation. In my case, the skin and fascia have hardened in the neighborhood of the spinal cord (though I don't necessarily think the inflammation is coming from the spine). It's something that can felt by other people; though everyone says they've never felt anything like it.

The real problem is the use of nebulous terms like "pain" and certainly "fatigue". These need to be defined better. Everybody has a subjective assessment as to what this means to them.
 

Jenny

Senior Member
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1,388
Location
Dorset
BTW I think inflammation seems like a good guess as any. Is inflammation not part and parcel of ME? In any event, I have been tested and there is widespread inflammation. In my case, the skin and fascia have hardened in the neighborhood of the spinal cord (though I don't necessarily think the inflammation is coming from the spine). It's something that can felt by other people; though everyone says they've never felt anything like it.

The real problem is the use of nebulous terms like "pain" and certainly "fatigue". These need to be defined better. Everybody has a subjective assessment as to what this means to them.

What tests have you had for inflammation floyd? Is CRP usually high with inflammation? Mine's very low but I have a lot of aching muscle pain and joint pain.

Jenny
 

floydguy

Senior Member
Messages
650
What tests have you had for inflammation floyd? Is CRP usually high with inflammation? Mine's very low but I have a lot of aching muscle pain and joint pain.

Jenny

TGFBeta1, C4a, Cytokine Testing, TNF, etc. I also am in the somewhat unique situation of having NKC 8X higher than normal and NKC function about as low as it gets. I am having a skin biopsy soon as there is a belief that Mastocytosis or something similar may also be present. I'll also have a blood analysis to see if cancer of the blood is present.
 

Jenny

Senior Member
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Location
Dorset
Thanks floyd - apart from TNF there's not much chance of getting these done in the UK.

Good luck with the biopsy and blood analysis.

Jenny
 

Sushi

Moderation Resource Albuquerque
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Albuquerque
Thanks floyd - apart from TNF there's not much chance of getting these done in the UK.

Good luck with the biopsy and blood analysis.

Jenny

Could you send your blood to RedLabs? Of course you would have to pay, but a doctor doesn't have to sign their test requisitions--you just have to give a doctor's name but not their address. Then the results will be sent to you.

Sushi
 

Jenny

Senior Member
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1,388
Location
Dorset
Could you send your blood to RedLabs? Of course you would have to pay, but a doctor doesn't have to sign their test requisitions--you just have to give a doctor's name but not their address. Then the results will be sent to you.

Sushi

Thanks for that suggestion Sushi. I'm afraid I'm not up to finding someone to take blood and organising shipping. Also am a bit reluctant to do any more tests at the moment as I've spent thousands on testing, none of which has led to any treatment that has done anything at all.

But I'll bear your suggestion in mind when I'm in a better state of mind about all this!

Jenny
 

garcia

Aristocrat Extraordinaire
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976
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UK
Also am a bit reluctant to do any more tests at the moment as I've spent thousands on testing, none of which has led to any treatment that has done anything at all.

You have my sympathies Jenny! This is my bête noire too.
 

warriorseekspeace

Senior Member
Messages
141
Location
Florida
Regarding back pain, in my case, I have been thinking it is primarily of a mechanical origin. And to go further back to causation, I believe it has to do with decades of overexertion after the time on a daily basis, when my postural, antigravity muscles, were completely fatigued. I believe these did not have the capacity for endurance that they are supposed to have, due the dysfunctional ability of the mitochondria to produce adequate ATP, or something like that.
I think that as I continually pushed my body past my physical limits, the effects were exerted most strongly on my axial skeleton in this way.
In other words, the more fatigued my deep core muscles got, the more I developed dysfunctional motor patterns of using the more superficial muscle layers to push on. In my case, this often involved even transferring the weight of other nearly paralyzed adult individuals, as part of my work, which I needed to continue doing, to maintain two health insurances to pay for medications for another illness.
By the way, I have had ME/CFS since at least 1989, in my early twenties.
Of course after a day or half day of doing that with this illness (undiagnosed) and literally collapsing nce I dragged myself out of my car into the house after work in a fog, I had no energy to search online and find info about this illness, nor to do proper exercise myself, to keep fit, and hence prevent the dreadful hell of back pain and dysfunction I am trying to dig my way out of today.
I came on the forum today to search threads on back pain and perhaps post a poll asking how many others of us experience back pain, specifically PWME/CFS who have been ill over 10, 15, even 20 years, as my hypothesis is that it is then that the long term effects of prolonged decreased postural endurance may be manifest.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi Warrior, not sure if i am understanding your question?

I've had ME for nearly 30 years. Have had episodes of back pain off and on through that time. Not a major symptom or problem though compared to the ME.

For me being unable to exercise (due to the post exertional ME symptom) didn't lead to further back pain for me.The possible implications of not being able to keep fit have been overshadowed by this. Exercising would increase my pain as part of the PEM.

(that changed though after a road traffic accident though when my back was damaged and became a big problem).

What is your experience of PEM with regards to the back pain? I'm guessing that my performing the hard physical labour of transferring that weight you suffer from almost constant PEM?
 

warriorseekspeace

Senior Member
Messages
141
Location
Florida
yes, xmrv, i was constantly in PEM/ PENE, and the last 4 yrs i worked at all, had frequent total collapses into severe fflulike illnesses of many weeks or months (remember i did not know about this illness, only that id never been right since mono). i had been gradually decreasing my hous down to 3/ day and then ever other day part time, so i was on unpaid leave when i would get sick with these crashes. i have not been able to work at all (or sdo much anything) for several years now. ill post so i dont lose, from smartphone.