Burning Pain - Does Anyone Else Experience That?

[Kay Webster]

Kay,
Yes, I have the burning tongue. I have very reduced saliva, but observe improved saliva and less burning tongue with certain neck positions. I have not officially been dx with AS, but have a big sacral issue. Very unstable after an injury. I appreciate that the sacrum affects the neck - check out sacro-occipital literature.

I’m not sure when you posted this, but I just read it today, November 1, 2025. I appreciate your response. You are the only one who seems to have responded to this, but it helps to know that someone else has it. I think I also read somewhere someone having it that also had anklosing spondylitis. I will look up sacro-occipital. My tongue has gotten a lot better but is still quite sensitive. I no longer eat spicy food. Thanks.

 

[Kay Webster]

I realise this is a very old post but thought I’d add my bit.
I m currently going through some sort of M.E. relapse, this time my symptom cluster are a variation on past symptoms. They include burning , naming , tingling over upper central back and coat hanger pain . The tingling extends at time to limbs .My scalp is affected with creeping sensation , prickling as if insect was walking through hair , breeze affects it similarly. It comes and goes but is quite insistent in this relapse. I have the usual exhaustion and weakness with ME relapse . I’m hoping it will subside with rest .Anyone experience anything similar?

I get the insect walking through my hair, always in the same spot. It occurs when my hair is due to be washed and is very creepy. I have ME, fibromyalgia, and ankylosing spondylitis. I believe that I have experienced, in the past, burning from my shoulder down through my fingers. It didn’t last long but was excruciating. My doctor told me that the pain in my hands would relate to my neck… But I know he did not have a very good knowledge of ME. So I don’t know about that.

Sometimes, when laying in bed at night, I get something that feels like bee stings on the backs of my lower calves. I wonder if anyone experiences anything like that. It could be considered a burning sensation.

 

[Anne27]

I get the insect walking through my hair, always in the same spot. It occurs when my hair is due to be washed and is very creepy. I have ME, fibromyalgia, and ankylosing spondylitis. I believe that I have experienced, in the past, burning from my shoulder down through my fingers. It didn’t last long but was excruciating. My doctor told me that the pain in my hands would relate to my neck… But I know he did not have a very good knowledge of ME. So I don’t know about that.

Sometimes, when laying in bed at night, I get something that feels like bee stings on the backs of my lower calves. I wonder if anyone experiences anything like that. It could be considered a burning sensation.

 

[Anne27]

Thankyou Kay , I’m sorry for your struggle too but thanks for answering.
Today my scalp feels like it is creeping , it migrates over legs intermittently , my hair when it touches my face feels like tickling . I have associated burning back and exhaustion , all neuropathic it seems . I have had a bereavement , an infection prior to this kicking off after a relative period of improvement in ME. It’s rubbish .