Burning spine?

[Alexandru Matei]

Does anyone get an intense burning in their spine especially when sitting?

I hurt all over, and this burning spine pain is taking my breath away, I get an impending sense of doom when I get it especially when sitting down.

I am going to get an MRI of my cervical and thoracic spine to rule out other things, but this burning has started with my last flare. Also had it during the flare in 2013. I cannot explain the burning any better but as someone is pouring acid down the spine.

I get burning in the brain as well, MRI came clear except for chronic sinusitis.

Thanks

 

[Sparrow]

Burning in my spine, neck, and head is one of my ME symptoms, but with time and a lot of trial and error, I've been able to make the connection that it only happens when I'm overdoing it with mental activities (TV, reading, computer use, conversation, listening to music, etc.). It took me a long time to make the connection because it felt like I was already doing so little.

On the plus side, as brutally hard as it is sometimes, limiting those types of activities much more has meant that I can now avoid the burning if I'm careful. I hope you're able to get some relief from yours as well. If it's the same thing as mine, I know that it's a really awful sensation. One of the worst for sure.

Edit: Oh, as a side note, for me, once I've triggered the burn, I find that what it takes to trigger it again is MUCH lower for some days afterward. So if I'm burning, I need to give my brain a super extra rest for days before I can tolerate even my normal low level of activity (which stinks, but I've learned that setting it off again puts me right back where I started. It really seems to need recovery).

On another note, I find that sometimes putting an ice pack on the area helps to take the edge off a tiny bit for me. I'm not sure if the cold is actually helping, or if it just numbs me a little, but every bit helps, so I thought I would mention it. Outside of dark, silent inactivity, I haven't yet found anything else that helps at all.

 

[Alexandru Matei]

Burning in my spine, neck, and head is one of my ME symptoms, but with time and a lot of trial and error, I've been able to make the connection that it only happens when I'm overdoing it with mental activities (TV, reading, computer use, conversation, listening to music, etc.). It took me a long time to make the connection because it felt like I was already doing so little.

On the plus side, as brutally hard as it is sometimes, limiting those types of activities much more has meant that I can now avoid the burning if I'm careful. I hope you're able to get some relief from yours as well. If it's the same thing as mine, I know that it's a really awful sensation. One of the worst for sure.

Edit: Oh, as a side note, for me, once I've triggered the burn, I find that what it takes to trigger it again is MUCH lower for some days afterward. So if I'm burning, I need to give my brain a super extra rest for days before I can tolerate even my normal low level of activity (which stinks, but I've learned that setting it off again puts me right back where I started. It really seems to need recovery).

On another note, I find that sometimes putting an ice pack on the area helps to take the edge off a tiny bit for me. I'm not sure if the cold is actually helping, or if it just numbs me a little, but every bit helps, so I thought I would mention it. Outside of dark, silent inactivity, I haven't yet found anything else that helps at all.

Sparrow,

Thanks for your post, I am aware that the burning in my case might have several causes - I do have cervical issues (cervical spondylosis) and scoliosis. But the weird part is that this type of burning only comes with my flares, and it does subside while laying in bed, opiates also numb it down.

I am going to get an MRI of my cervical and thoracic spine just to rule things out, however I have not heard anyone that has a severe spinal issue to have this kind of burning, it can literally drive you insane, I feel paralyzed, unable to focus, think or speak when I get it. It also takes my breath away, it's just pure torture. As I said it's like someone is pouring acid down the spine and it intensifies the more you sit, then I also get a sensation of chest pressure and as if my chest is inflamed. (don't have any better words to describe the feeling - The burning is also in my scalp and brain..

 

[Sparrow]

Yeah - I'd definitely get it checked out just in case it's something else, but for what it's worth, what you're describing sounds very, very familiar to me. I've dubbed mine "brainfire", and at its worst, it is the most unbearable thing I've ever encountered in my life.

In case it's helpful, the other thing I find helpful is to try to cut it off before it has the chance to get too torturous. The earlier I stop, the better my chances of avoiding the awful sensation you're talking about. With time, I've learned to notice the earliest signs that it's approaching (pressure, low heat, sometimes mild sweating), and if I stop what I'm doing immediately at that point, it tends to fade back down rather than flaring into something unbearable. That's been by far the best approach for me. It just took me a long time to realize that even very minor things were setting it off.

We had a thread here once on describing your PEM (or something like that - can't remember the exact phrasing), and I remember being really struck by how many people seemed to be describing something similar. We were all using different words to describe it, but there was a common thread amongst a group of us of a burning/inflammation sensation down the spine or in the head after doing too much mental activity. It may be that you're describing the same thing.

Could it be that the activities you tend to do while seated take mental exertion? It might be the positioning as well (I certainly get other symptoms from sitting up too long, though for me they're separate from the brainfire), but I'd see if there might be a connection to what your brain is busy with too.

 

[Alexandru Matei]

Yeah - I'd definitely get it checked out just in case it's something else, but for what it's worth, what you're describing sounds very, very familiar to me. I've dubbed mine "brainfire", and at its worst, it is the most unbearable thing I've ever encountered in my life.

In case it's helpful, the other thing I find helpful is to try to cut it off before it has the chance to get too torturous. The earlier I stop, the better my chances of avoiding the awful sensation you're talking about. With time, I've learned to notice the earliest signs that it's approaching (pressure, low heat, sometimes mild sweating), and if I stop what I'm doing immediately at that point, it tends to fade back down rather than flaring into something unbearable. That's been by far the best approach for me. It just took me a long time to realize that even very minor things were setting it off.

We had a thread here once on describing your PEM (or something like that - can't remember the exact phrasing), and I remember being really struck by how many people seemed to be describing something similar. We were all using different words to describe it, but there was a common thread amongst a group of us of a burning/inflammation sensation down the spine or in the head after doing too much mental activity. It may be that you're describing the same thing.

Could it be that the activities you tend to do while seated take mental exertion? It might be the positioning as well (I certainly get other symptoms from sitting up too long, though for me they're separate from the brainfire), but I'd see if there might be a connection to what your brain is busy with too.

I tend to get the burning spine and head sensation and it intensifies even in the mornings when I just got out of bed, the posture might play a role too, what I have noticed in particular that 1) I only get it sitting down 2) I get it when I am really mentally fogged by noise (when two people talk loudly in my kitchen for example and the radio is on) that irritates me the most and starts the 'burning' episode 3) What you have mentioned, posture as well as doing something that consumes me mentally - peeling mushshooms for example.

I don't sweat - this is a really downer for me and if I do sweat I only sweat a little bit and the odor is really strange. I have met people with the same issue in the Lyme forums. This has a lot to do with Dysautonomia, as I also have POTS during my flares. Forgot to mention that I get to the point when the burning is so intense I literally feel paralyzed, and I have to get up or I just don't breathe at all ..

Sitting up too long (you mean standing?) - in my case the symptoms are different - dizziness, jelly legs, feeling like fainting, lack of balance if I move to fast from one place to another, anxiety, again I think POTS has a lot to do with this and it's worse in my flares.

I also have severe anxiety, I really hope to rule out tumors, lesions or other issues with my spine that could be severe and take it from there. I also have to rule out Lupus, have you been tested for Lupus?

 

[Sparrow]

For myself, I did mean sitting, but my situation is pretty severe, so sitting up is my special exertion. I get the brainfire lying down as well.

I tested negative for Lupus, but it seems wise to rule out whatever you can that might be a contributing factor.

I wish you luck in getting to the bottom of this, or at least getting some relief. I don't know if saying this will give you hope or sadden you, but for what it's worth, I've managed to get to a point where I can avoid that pain almost entirely. I had to cut out huge parts of my life to do it, though (very limited TV, almost no visits from friends, no music playing in the house, etc.). It sounds like you might be a bit less severe than I am, so hopefully if it is a piece of your ME, you can manage to get some relief without having to go to that extreme. Wish you all the best.

 

[Alexandru Matei]

For myself, I did mean sitting, but my situation is pretty severe, so sitting up is my special exertion. I get the brainfire lying down as well.

I tested negative for Lupus, but it seems wise to rule out whatever you can that might be a contributing factor.

I wish you luck in getting to the bottom of this, or at least getting some relief. I don't know if saying this will give you hope or sadden you, but for what it's worth, I've managed to get to a point where I can avoid that pain almost entirely. I had to cut out huge parts of my life to do it, though (very limited TV, almost no visits from friends, no music playing in the house, etc.). It sounds like you might be a bit less severe than I am, so hopefully if it is a piece of your ME, you can manage to get some relief without having to go to that extreme. Wish you all the best.

I am still questioning my health issues so yes I do have to rule out lupus and other issues. I am also questioning if this is due to Lyme or another viral component, metal toxicity that I did not a diagnosis for. (or any combination of these conditions) It's hard to get to the root cause.

Have you found out what is your main cause to your condition? (other than just the label ME) Many ME sufferers have an underlying cause that is for sure, and I believe they are misdiagnosed or the doctors are just too baffled to get down to the root cause.

If you don't mind, I know there might be many symptoms you are dealing with, can you list them?

Thanks

 

[Sparrow]

I'm not feeling up to writing much today (overdid it a bit yesterday on that front), but I'll do what I can. I have pretty much textbook severe ME. I've also tested positive for Bartonella infection that should have passed many years ago, and borderline for another systemic infection, so I may also have a chronic infective component.

Off the top of my head, I have
-POTS
-lowered blood pressure
-muscles that run out of energy like a dying rechargeable battery
-unrefreshing sleep
-low mental and physical stamina (tasks get harder and harder as I try, until I'm unable to continue)
-great difficulty with certain kinds of cognitive tasks (esp involving keeping things in working memory)
-huge flare up of immune-type symptoms (feel super sick, swollen and uncomfortable glands in throat, sore throat, etc.), profound weakness (e.g. difficulty just walking to bathroom), extreme sleepiness, and generally feeling awful which hits around 24-48 hours after too much exertion (used to be 24, not is closer to 48). This also includes an extended period of reduced capability and stamina after the initial sick feeling has passed. Often, I just never go back to baseline and have to start from scratch improving slowly from the new lowered "normal".
-I had a lot of different varieties of pain and some heart concerns when I was at my lowest, but I've mostly got them under control now. Likewise, there were a pile of other symptoms at that time that thankfully have passed.

There are a number of other symptoms, but these are the core and persistent ones that I can think of right now.

I was a typical sudden onset following what seemed to be a normal viral illness. Had a period of partial remission for some years, then relapsed and have been mostly bed-ridden for a number of years now. I suspect infection is what triggered my relapse.

The only symptom I know of that really doesn't fit with an ME diagnosis is that I also have unexplained significant sudden onset hearing loss in both ears, but this may not be related. It's possible that's connected to the infections I've encountered, and also possible that it's connected to one of the medications I was taking for a while (ototoxicity is a possible but rare side effect of a number of common medications).

Hope this is helpful to you somehow. I likely won't be able to reply for a while, but good luck again with your own search for answers.

 

[Seven7]

Mine goes away while I take L-cartinine with ALA (I am liking the GNC one). It is not a cure since as soon as I stop the pill the symptom comes back. But since for me is intolerable the burning I just keep on it (which is also a good energy supplement) so 2 birds w one stone.

 

[rosie26]

Are you still getting this burning in your spine @Alexandru Matei? Just wondering how you are getting on and whether it has stopped now.

 

[Alexandru Matei]

Are you still getting this burning in your spine @Alexandru Matei? Just wondering how you are getting on and whether it has stopped now.

It didn't completely go away, I'm not sure if I posted this before but I do have several herniated disks in my cervical an thoracic spine but the burning it's not from there. They gave me a fibromyalgia diagnosis. When the burning started in 2014 October (when I fell severely ill) that was the start of my FMS, the burning was insane ..

Seemingly I had FMS even before October 2014 but that was the point when it went full blown. On treatment I did not get that severe burning feeling anymore, it's more tolerable but it's still there. I am also working with my rheumatologist since 2014 to rule out Lupus. Lupus is a complicated diagnosis... but since they found inflammation in my body it's possible to have Lupus..

Feel free to ask me any question, there's just too much to say about my condition in one thread.


P.S Warm weather makes my symptoms 80% better. I felt 80% better during last spring and summer.. I also have POTS, Raynauds which are blood related disorders so this might explain why I feel better when the veins are dilated and the blood flow "MORE" normal.

 

[rosie26]

It didn't completely go away, I'm not sure if I posted this before but I do have several herniated disks in my cervical an thoracic spine but the burning it's not from there. They gave me a fibromyalgia diagnosis. When the burning started in 2014 October (when I fell severely ill) that was the start of my FMS, the burning was insane ..

I have fibromyalgia too. Though I didn't know that that was what I had until a few years ago. I have never been diagnosed with it though. You probably have had fibromyalgia for many years. I don't know how old you are. Mine started when I was 20 years old, though I have only experienced the burning in the last 10 years (I'm 52). I remember one occasion in my 20's where I became weak in the legs and I had to quickly lie down and the moment I laid down I had what felt like a burning hot electrical current go up and down my spine and that was followed by intense freezing. I always wondered what that was about. I hadn't any signs of ME other than fibromyalgia that I can think of, at that time.

Seemingly I had FMS even before October 2014 but that was the point when it went full blown. On treatment I did not get that severe burning feeling anymore, it's more tolerable but it's still there. I am also working with my rheumatologist since 2014 to rule out Lupus. Lupus is a complicated diagnosis... but since they found inflammation in my body it's possible to have Lupus..

Good to hear you have a rheumatologist who is helping you to work out what is going on.

P.S Warm weather makes my symptoms 80% better. I felt 80% better during last spring and summer.. I also have POTS, Raynauds which are blood related disorders so this might explain why I feel better when the veins are dilated and the blood flow "MORE" normal.

This sounds exactly like me. Although I don't think I reach 80% better. My nueroimmune system hates winter. I can't get warm enough and then when I do warm up I get too hot and it back and forth hot/cold. I'm constantly taking clothes off and then putting them back on again. Not good for PEM all that movement.

Do you break out in a all over sweat with the burning sensation or is it dry for you? Are you taking any multivitamins and B complex? And if you are taking them, were you taking them before the burning symptoms began?

Would like to hear how you are getting on with updates when you can @Alexandru Matei if you don't mind, though.