whole spine burning, do you have it?

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For sure the burning for me is under control as long as I take ALA. I use a supplement acetyl -l Carnitine with Alpha Lipoic acid ( one pill) as long as I ok that supplement, I do not experience it.
Mine is really bad in brain and spine and I mean really bad. So I do not let the pill run out ( I buy mine on gnc) so is easy access for me.
 

Diwi9

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@pattismith - I experience a burning spine in my thoracic region, but additionally muscle spasms along my cervical and thoracic spine. To me the burning is along both sides of the spine. Could you describe your sensation with more description? When my spine is touched during these flares, it can hurt worse unless extreme pressure is placed on it. When one area is touched, the pain tends to migrate. But, yes, burning is the correct term.
 

pattismith

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@pattismith - I experience a burning spine in my thoracic region, but additionally muscle spasms along my cervical and thoracic spine. To me the burning is along both sides of the spine. Could you describe your sensation with more description? When my spine is touched during these flares, it can hurt worse unless extreme pressure is placed on it. When one area is touched, the pain tends to migrate. But, yes, burning is the correct term.
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?
 

Diwi9

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Mine comes and goes. I'm not sure what triggers it generally, but I know if I did a headstand I would feel it. I'm so glad you've found a treatment. It's hard to even be listened to and acknowledged for these sorts of symptoms and you actually found a treatment and it worked!
 

edawg81

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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.
 

iwillwin1day

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Yes. I have very severe burning brain symptoms from several months. I posted about that in this forum. It has reduced now but still severe. Stress makes it very severe in intensity so stress of is a trigger for me. Till now I haven't found any cause and cure for it.
 
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For me, the longer I am upright (sitting up, unreclined without neck support) the worse this gets & comes w a headache. It also gets worse w any crashes, whether activity induced or loss of sleep induced. What I don’t know is if the increased burning pain is a direct symptom of the crash or if the crash causes immobility, which in turn causes the pain to escalate... or perhaps another self perpetuating cycle? Also, does anyone know, is this a common problem in EDS? I am hypermobile but have never been assessed by a geneticist.

Ibuprofen & CBD oil can take the edge off. But neck traction has been the biggest help I’ve ever experienced. This help is temporary but my husband has seen enough improvement in my overall function that ever since the pt showed him how, he is often initiating these sessions. We try to do it every day 20-30 mins, but usually works out to about 5 days a week.

I do not think I have Lhermitte sign.
 
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I experience some intense pain on the spine surface, when I"m extremely run down or in some acute mess state. The shower spray HURTS. I think this is some type of fibro-type pain.

At night when I am the most run down daily, I can very severe spinal pain and can't stand for more than a few minutes. This subsides in the morning.

My neck is throbbing most of the time.
 
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But neck traction has been the biggest help I’ve ever experienced.
Just wanted to mention that Dr B’s office contacted me today telling me to stop manual traction. I have my videoconference w him Sept 23. I guess it could be that this is only used by him for diagnostic purposes & could lead to further instability if cont’d on a regular basis. Sept 23 is a long time to wait knowing there’s something that provides relief but that you can’t do it...
 

Eastman

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A few years back, another member reported "spine and brain pain". I don't know whether it is the same thing.

She eventually tried vitamin B1 and reported feeling "immediately better", but only for a few hours.

Unfortunately, there were no updates after that.
 

pattismith

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I discovered recently that I have a muscle problem called percussion myotonia.
This lead me to think that my burning pains are muscular in nature (pains around the sacrum and the hips, and whole spinal pains).
The fact that my muscular spinal pains stop with erythromycin/azithromycin or clarithromycin could fit with the Myotonic Dystrophy, as erythromycin has shown some interest in this disease.


Yes. I have very severe burning brain symptoms from several months. I posted about that in this forum. It has reduced now but still severe. Stress makes it very severe in intensity so stress of is a trigger for me. Till now I haven't found any cause and cure for it.
Do you still have it?
 
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Was looking for this thread since I developed that burning spinal cord pain aswell. So far I have not found out why it came or what exactly it is. Had some doctors suggest it's of mechanical origin but it does not feel that way at all. It intensifies when I overwork myself or have a crash, which indicates to me that it is somehow related to my overloaded system, not just from a stiff neck. I have no craneo cervial instability or something similiar.
For me it started about half a year ago and only occured when I had a big crash and only for half a day. It gradually became worse over the year and I now have it all the time, but with an increase in pain when I'm doing to much.
So far the only thing that really works for me is putting a really hot water bag on my back. Right now I'm getting some accupuncture aswell, which improved it a bit.
 

bensmith

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Just came down with this yestreday after drinking a meal replacement shake, although my pain isn't burning just normal "pain" if that makes sense. i guess more achy? might try some of the things here.

it's a really odd and painful symptom. it just feels so strange to have my spine hurt all the way down. also up into my brain.
 

bensmith

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I seem to actually have it in certain areas like you descsibe as well, not really all the way. i think yesterday it wasmaybe, but today it's at certain points as well. i'm sorry that it is constatnly with you when not laying down candle, it's a really crappy symptom.