Full body burning - please help

judyinthesky

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Hello.

I am very severe since covid vaccine and spinal tap and presumably still leaking.
This together with the existing neuroinflammation in my brain potentially is responsible for all of my symptoms.

I also have extreme mast cell activation to the extent that any food triggers high nerves etc.

Since a few weeks I started getting extreme all over body burning.
It starts 8pm in the soles of my feet and doesn't let me sleep at all.
I'm already tortured by extreme hyperacusis and sensitivity due to my ME to the extent that I cannot talk for more than 3 minutes etc, limited to short carer contact.

At night I also get extreme full over neurological burning in my whole body.
The nerves are firing aggressively and it's like I'm stung and bitten.

I'm mostly looking for solutions to survive at this point.
I take
Antihistamines
Ketotifen
Valerian tea
Clonazepam

This all barely touches it at all!

I must have extreme neuro inflammation in the brain because I can feel this during attacks when my brain just feels inflamed at the top.

What can I do for this pain?
Some of the things I've tried like Novalgin were a disaster. Because I broke out in hives... leading to more flares...

I also have a constant heat in my body but no fevers.

I have a GP visiting. What could I suggest to her?

Very severe ME brain inflammation is already tough. What can I do for this pain?

I've also heard some people say pain came later in their ME journey.
Yes it is the case with me.
Would love to hear experiences on that.

I know it can be small fiber neuropathy just I can't test it now.

I didn't react well to Lyrica because it activates me more.

Let me know what you know about nerve pain this bad.
 

Judee

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Oh, @judyinthesky, I wish I knew something to suggest that could help you. I know you're going through a hard time right now. This is so much for you to deal with.

Sending hugs. Sorry, I can't offer more.

Praying that something heals in your system that will calm all this down for you.
 

judyinthesky

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@Judee thanks that's very kind

The waiting game I do since months and getting more and more symptoms

I can't be the only one though on the planet with this issue
 

Shanti1

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@judyinthesky I'm so sorry to hear what you are going through. This may sound really basic, but are you taking B12 (not saying this is a cure, could help though). IMHO, it may be important for people with nerve concerns to take both the methylcobalamin and adenosylcobalamin forms (source naturals has a nice one).

In my line of work I have had the opportunity to review a lot of serum B12 and MMA tests (the two tests for B12 status) and found about 6 odd cases where serum B12 was high while MMA indicated a deficiency and only normalized with the addition of adenosylcobalamin. In one of these cases, the person had neurological pain (numbness, tingling, stabbing) in the legs and arms despite taking high doses of methylcobalamin which resolved when adenosylcobalamin was added.

I'm not sure if this is helpful but I thought it was worth mentioning just in case.
 

Booble

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Hmm.....did this start before or after you started the Valerian?
I have heard of side effects that can cause systemic weirdness.
 

Timaca

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I am so sorry that you are suffering. I used to have pretty severe full body burning, sparking, crawling nerves all over my body. I would tie a bag of frozen peas to the top of my head to help with the burning pain there. While I still have burning, sparking nerves all over my body, it isn't nearly as painful as it used to be.

Shanti1's post was very interesting. You might ask your doctor to test your serum Vitamin B12 and MMA and also your serum Vitamin B6 (high levels can also cause problems).

I don't know why mine has improved. It's still there, just much less.

I hope you can find some relief soon.

Best,
 

judyinthesky

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Vitamin b12 is okay and it stated actually when I was very good with it!
Before the valerian

Of course I do the ice pack but the aggressiveness of the biting is too strong

I need other solutions from people who have it that bad.
Xanax touches it but I can't take that round the clock
 

judyinthesky

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To be precise
I've got a potential spinal leak on top of very severe ME so what I'm experiencing is certainly beyond vitamins
Even though I've filled them all up and tried lots and lots of natural things and nutrition and so on
I'm being bitten by invisible bugs in my fingers while I'm writing this, an ice pack on the head and antihistamines and Clonazepam in my body, to give perspective