whole spine burning, do you have it?

Hoosierfans

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In my case this was greatly alleviated with antivirals. Do you have chronically reactivated herpes viruses?
@leela and @Tammy, what antivirals did you take that alleviated this? I have all over nerve and skin burning that my docs can’t trace to a cause ans we are about to do a trial of antivirals (I have elevated EBV and HHV-6 antibodies)
 

Tammy

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@leela and @Tammy, what antivirals did you take that alleviated this? I have all over nerve and skin burning that my docs can’t trace to a cause ans we are about to do a trial of antivirals (I have elevated EBV and HHV-6 antibodies)
I take natural anti-virals. Cats Claw, L-lysine, Licorice root are the main ones. Sometimes, I rotate and use others Anti-virals are not the only thing I do though. I follow the guidance of Anthony William. It's what has worked best for me so far.
 

judyinthesky

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Your burn is a focal one, so I have no idea about it.
Mine is an acute whole spine burning, it is the worst of my symptom. I experienced it when I was at my worst 2.5 years ago, and this was the main reason I was considering ending life to stop this suffering.

Hopefully, I took azithromycin 500 mg /day at that time, and it saved me, the pain disappeared in one or two days.

I was free of it from this time, but got a relapse last week, after an osteopathy session.
The practitioner decided to twist my spine (cervicals, thoracic and lower), and this was the trigger for the pain that arised two days after that.
I took again azithromycin and got free of pain the third day.

Azithromycin has spinal antiinflammatory properties, so maybe you could have relief of your focal spine pain as well?
I have this now and it's so bad makes me suicidal. Until it's better.
I will try to get this.
 

judyinthesky

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i have this but it coincides with my extreme feeling of feverishness and burning sensation of my brain. I use ice packs on my neck and cold packs on my head more often than not. The burning feeling is strongest behind my head and disapears below my shoulders. NSAIDS help but only temporarily. Very interested in what treatments others use, as some have discussed above which I will try out at some point.
Will try to use NSAIDs w
 

judyinthesky

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By the way any of you had lumbar puncture?
I developed it after this.
It is the feeling of wanting to die out of brain overheating
 

Cinders66

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Yes on exertion or in flare. Surely indicates that the nerves there are impacted. Is this related to the dorsal root ganglionitis found in a few post mortejs of very severe cases in the UK? Who knows, there’s not been the research. I used to have to apply ice.
 

Diwi9

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Okay, revisiting this thread. The burning spine...what to do about the burning spine. Mine seems to always start at the C7-T1 juncture. I feel it in the discs. The pain can extend lower, but typically progresses toward the base of my skull. It is also often accompanied by a burning pain in my trapezeus muscles, but especially my shoulder joints. The joint pain can migrate throughout my body throughout the day...but the spine pain is nearly constant.

I've done three rounds of PT with manual traction and at-home traction. Sometimes it helps, sometimes it makes it worse as it can trigger muscle spasms. I am CCI+, but not a surgical candidate. Still, it's hard to tell if this is CCI as it feels inflammatory in nature. I use Pain Terminator patches or CBD/THC roll-on salve. They reduce the pain/burning, but it remains.

Is this straight up ME, or is there something else going on. I've had many MRI's done and only mild findings at C5 and the CCI finding, which was also considered mild. During crashes I have numbness or tremor, especially in my ulnar nerve distribution in both arms. This has occurred since my ME relapse in 2016. Sometimes I have a burning sensation on my skin along the ulnar nerve distribution, this predates my ME.

Are there medications to treat this? If I could dampen this symptom, it would greatly improve my function.
 
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It took me so much time to understand that the burning sensation is provoked by those substances that reduce sugar. For example, rose hips, lipoic acid, black cumin, vitamin B 1 and more ... Painkillers hardly help. Pains are long lasting for four days. Can anyone help this information.
 
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Is this straight up ME, or is there something else going on.
These type of symptoms are pretty common in those who do not have me/cfs. I would put them down to the amount of time me/cfs patients spend in bed. So I doubt it is directly caused by me/cfs.
Are there medications to treat this? If I could dampen this symptom, it would greatly improve my function.
Apart from pain killers and anti-inflammatory drugs in the UK Gabapentin is used. Said to be helpful.
 

BrightCandle

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For most of the last 4 years I have pain in a bunch of places on my spine. The upper area between my shoulder blades has been painful and tight but no amount of exercise would release it and my spine could be clicked with a simple squeeze of the shoulder blades exercise. I also had repeated issues in my lower back with long bouts of seriously painful sciatica. I was exercising it all, my core has probably never been stronger now has my upper back as I used bands to very gradually exercise these areas to try and get relief despite my ME.

Well now I am feeling improved my upper spine has recovered miraculously, it has lost its stiffness and now moves properly again and the pain is going, not gone yet but improved. My lower spine is also better. My activity levels are only slowly increasing and can't be responsible for especially the upper back recovery. My spine has always been worse when my condition was worse and its definitely improved as I improve.

So I don't know about it just being about activity the recovery and descent to pain is too in sync with my condition as a whole, it should take a lot longer than a few days to both condition and de-condition in this way.
 

nerd

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@nerd could possibly be seen as it. Isn't that also related to brain inflammation?
It's associated with brain pathology. I'm not affected by it, so I haven't looked into it in depth. But one typical definitions I know is general/non-focalized burning pain, sometimes spreading out from the spine. When I read burning pain in the spine, this was my first thought. But I can't relate to it. I have focalized pain in the spine due to mild scoliosis and CFS/ME-related connective tissue inflammation. So it's difficult to grasp how this kind of pain actually feels.
 

Diwi9

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@nerd connective tissue inflammation? Sorry for all the questions :)
Not sure how to describe it, but that is what it feels like to me...connective tissue (discs and tendons) get inflamed and the sensation is a burning feeling. It can migrate to other joints like shoulders, elbows, hips...but the epicenter is always in the spine/neck.
 

nerd

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@nerd connective tissue inflammation? Sorry for all the questions :)
It's like a mild Ehlers-Danlos Syndrome, but in this case, it's not genetic but due to CFS/ME pathology-mediated collagen shortage and tissue damage. SLE subpathology might also play a role in that typical EBV proteins mediate damage to the connective tissue.

Not sure how to describe it, but that is what it feels like to me...connective tissue (discs and tendons) get inflamed and the sensation is a burning feeling. It can migrate to other joints like shoulders, elbows, hips...but the epicenter is always in the spine/neck.
That's the feeling I mean.
 

judyinthesky

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It's like a mild Ehlers-Danlos Syndrome, but in this case, it's not genetic but due to CFS/ME pathology-mediated collagen shortage and tissue damage. SLE subpathology might also play a role in that typical EBV proteins mediate damage to the connective tissue.



That's the feeling I mean.
This "CFS/ME-related connective tissue inflammation" is so interesting for me. As I am having problems with healing a spinal fluid leak from a spinal tap. And people who have issues with it are often connective tissue disorder type of people. I also have issues with hurting tendons, but put that down to muscle issues (weak muscles due to ME - tendon issues). I am taking collagen. Is there any reading you could recommend regarding this connective tissue inflammation in ME?
 

nerd

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This "CFS/ME-related connective tissue inflammation" is so interesting for me. As I am having problems with healing a spinal fluid leak from a spinal tap. And people who have issues with it are often connective tissue disorder type of people. I also have issues with hurting tendons, but put that down to muscle issues (weak muscles due to ME - tendon issues). I am taking collagen. Is there any reading you could recommend regarding this connective tissue inflammation in ME?
Is chronic fatigue syndrome a connective tissue disorder? A cross-sectional study in adolescents (2005) [10.1542/peds.2004-1515]
This study implicitly assumed connective tissue damage under "connective tissue disorder" and bases their inconsistent conclusions based on this assumption. The hypermobility data has since been confirmed in the following study.

Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study (2021) [10.7861/clinmed.2020-0743]
I'm not familiar with the different mobility scoring methods, but I assume this is the reason for the inconsistencies in that regard.

Regarding the pathology, I assume that the methylation/folate/choline/NAD recycling issues interrupt proper collagen synthesis and assembly.

For an understanding of the metabolic processes:

Amino acid management in cancer (2015) [10.1016/j.semcdb.2015.08.002]
Quantitative proteomics by SWATH-MS reveals sophisticated metabolic reprogramming in hepatocellular carcinoma tissues (2017) [10.1038/srep45913]
Cellular senescence: A pathogenic mechanism of pelvic organ prolapse (2020) [10.3892/mmr.2020.11339]

I picked the first two studies only because they elaborate on the link between amino acid methylation/folate/choline/NAD recycling and collagen synthesis. The third study finally explains how this all contributes to collagen-mediated pathology, but also how senescent cells affect this. The senescent cell model is consistent with the pathogen-mediated model that I assume happens in CFS/ME. They also elaborate on the protective role of estrogen, but this isn't the primary driver of the collagen issue. It might explain, however, why women are affected more frequently.