Burning Pain - Does Anyone Else Experience That?

Discussion in 'Symptoms' started by Cort, May 9, 2015.

  1. Merida

    Merida Well-Known Member

    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.
  2. Merida

    Merida Well-Known Member

    I had terrible burning from butt to feet for several years following a pelvis/ sacrum injury. Therapy directed at this area may help. A few physical therapists are knowledgeable, sometimes massage therapists are good. I spent 2 years in a pool/ 3 days a week. No swimming, just walking forward, backward, sideways,etc.
  3. ShyestofFlies

    ShyestofFlies Well-Known Member

    I have burning pain in my feet which I assumed is undiagnosed PN. None of my doctors seem to care... No tests or anything. The blankets touch my feet sometimes and it's excruciatingly painful. Not always. When it first happened I thought I was just wearing shoes that were too small! Well it's 4-5 pairs later and I still get it, plus I'm barefoot at least 85% of my time.

    I also get burning reactions on my skin sometimes. Particularly when I'm having ptsd symptoms or bad anxiety. I literally feel burning. P
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    How interesting Paw. Thanks for sharing that. I wonder about uric acid - Dr. Cheney mentioned that in the past - and my Dad has had gout - and I believe he may have RLS.

    I definitely have to get an SFN test done...
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I notice that stress brings it on as well as exercise. I also often wake up with it and it can get better during the day...but mine is mostly in my upper body and I really notice it in my arms....Thankfully it's not the allodynia type of burning that you get. Have you been diagnosed with allodynia?
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I guess it could not be due to plantar fascitis - since your podiatrist has checked that out. Since it's in your feet I wonder if its blood circulation related.
  7. ShyestofFlies

    ShyestofFlies Well-Known Member

    I have never been diagnosed with allodynia, just regarded it as a symptom of my fibro, the doctors just like to blame everything on "it's your fibro, nothing we can do"... No explanations or extrapolations to break down specific symptoms. I figured out my hyperalgesia and allodynia divide on my own and for some reason the docs don't bat an eye when I describe them as such.

    I had some nerve type burning in my hands now that I recall, it was after my bone pain and arthralgia were treated with plaquenil (connective tissue disease). It tends to come and go in months long spurts but goes away on it's own. I don't remember how connected to exercise this symptom was, I know for a fact my reynaud's appears after exercise and takes hours to calm. That comes with a pain, and almost allergic reaction- I turn pinkish red and get itchy in my hands, feet, ears, nose, and very oddly my thighs.

    Nasty stuff nerve pain, though if I had to choose I'd go with no pain ;)
  8. ninibmr

    ninibmr New Member

    I get deep muscle pain in my back/shoulders especially at work when on the computer too long. Went to see a rhuematologist last week who tested me for all the "normal" things and found nothing. Now she doesn't think I need to come back. Geez, doctors still don't believe in fibromyalgia. Has anyone had the new immune response tests (IL-6, IL-8, MIP-1 ALPHA and MIP-1 BETA), and did these tests help with diagnosis/treatment?
  9. Seven

    Seven Well-Known Member

    @Cort I have really bad burning in brain like I am burning alive going to jump off the window burning it is so bad. I take (ALC 500mg w ALA200mg) all comes in one pill and it takes it away. I tested for neuropathy (Another cause) and I was negative.

    The burning when going up the stairs or using a muscle while doing something (the muscle one) is latic acid, once is there massage and epson baths, Mine has gone away a lot since using L-Glutamine ( this was by chance, I am using it for tummy but helps body pain like nothing else :couchpotato:).
  10. Tony L

    Tony L Active Member

    Yes, only once so far. Last Friday had a heated confrontation with my adult son (who has Aspergers), after a week in which he had either verbally abused me or ignored me. Knew I should have walked away but I'd had enough. After 20 min or so my brain started to burn so I walked away. The burning continued for about an hour, then gradually calmed. A frightening experience and not one I want to repeat!
  11. Seven

    Seven Well-Known Member

    Be careful, the issue is mine got so bad that all logic went through the window, you know how burning people jump of windows out of desperation, I had that feeling (I have never being suicidal, is like a I am burning drop in the floor type of reflex, like instinct mode no thought into it whatsoever) only a person that is burning alive can understand the all logic will shout down and all you care is to stop burning feeling mode.

    So ice helps and ACL+ALA takes it away for me. Good luck!
    Tony L likes this.
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks, I bookmarked this for future reference...
  13. Rosie26

    Rosie26 Active Member

    I have it in my chest and the skin on my back. Is this burning an 'inappropriate stress response' do you think by the autonomic nervous system? I'm trying to figure it out. Thanks for tip about what helped you.
  14. Seven

    Seven Well-Known Member

    Oh MY I forgot the spine one!!! I get it (used to) in the sides of the spine too!! I think it is autonomic symptoms because where I went to the clinic they test to make sure you do not have nerve damage. Weather is the OI per say or a known comorbid I don't know. But for sure a lot of OI plp gets it.
    Rosie26 likes this.
  15. Wayne

    Wayne Well-Known Member

    Hi @Cort, Hi Everybody,

    I've had burning pain sensations on my skin for many years, mostly on my torso, but in other places as well. They would usually last 3-4 days or so, and then gradually dissipate. I hadn't had any episodes for a while until about a month ago. I then had an episode that gave me some insights as to what has been causing it all these years. In short, these episodes turned out to be shingles outbreaks. Here's my story.
    About a month ago, one of my typical pain sensations began after not having experienced it for probably over a year. Unfortunately, it hung on much longer than normal, and even began to spread to a wider a area than normal. After about a week, I experienced my first ever shingles outbreak in the area where the pain started.

    As I began to learn what I could to treat this very painful (and itchy) condition, I discovered shingles outbreaks don't always break through to the surface of the skin, but can cause pain and inflammation just below the skin surface. It was then I became 90% convinced that the surface skin pain I'd experienced for years was in fact shingles outbreaks.

    So what had precipitated this new outbreak? In short, the flushing effect from niacin. I had started supplementing with niacin (about 250-500 mg/day) just before the painful sensations began to emerge. While supplementing with it, I was reading a book entitled, "Niacin, The Real Story" (very enlightening book BTW, especially the documentation on its use for treating shizophrenia (with about an 80% cure rate), and MANY other conditions.


    As I was struggling to treat my shingles, I read in this book that niacin (paradoxically) is very helpful for some people with psoriasis (and many other skin conditions), and greatly exacerbated psoriasis in others.

    It was my aha moment, when I became convinced my shingles outbreak--followed by my treatments being minimally effective--was the result of niacin exacerbating my pain, and extending the duration of the outbreak. -- I now think it's more accurate to say that it was the "flushing effect" from the niacin that was the problem, not the niacin itself.

    As soon as I stopped the niacin, the pain immediately began to decrease significantly. After the skin lesions had healed up about 90%, and were fairly unnoticeable, I decided to do an experiment, and take just a small 100 mg dose of niacin, and see what happened. Within hours, the pain and itch were getting progressively worse. (Me and my experiments! :banghead::rolleyes::))

    The lingering question I have is whether the niacin initiated the burning pain to begin with. Whether or not that's the case, I feel quite certain it transformed the surface skin pain into a full-fledged outbreak of shingles--an experience I hope never to repeat. I should mention while I'm at it, that one of the favorite natural therapies people with shingles use is apple cider vinegar. For me it was disastrous, and only exacerbated the pain.

    So, another example for me of how ME/CFS affects my body. I believe my dysfunctional immune system allows for my surface and sub-surface shingles outbreaks, and my neurological sensitivity made my use of niacin and apple cider vinegar untenable. It would make sense to me that other pwME/CFS could be facing a similar situation.

    BTW, the niacin I was supplementing was actually very helpful in a number of ways, especially in the way it acted as sort of a natural benzodiazapine. Its associated calming effect helped me relax and sleep better, and seemed to take an "edge" off during my day. I'm currently substituting the niacin with niacinimide, which doesn't have the "flushing effect" of niacin. So far, it doesn't seem to have the same degree of calming, though I haven't yet experimented with higher doses.

    So, there's my story, Hope it wasn't tooooooo long. :)

    Best to All, Wayne
    Last edited: May 11, 2016
    Tammy7 likes this.
  16. Mary Hamilton

    Mary Hamilton Active Member

    I get this all the time but I haven't found anything to help it. I have ME and Fibromyalgia.
  17. mshvan

    mshvan New Member

    I came across this thread just now.

    I haven't seen anything that someone says helped. I have the burning pain, much like others have described.
  18. Merida

    Merida Well-Known Member

    Yes, this burning pain is awful. Mine went away with a combo of drugs ( Neurontin, Wellbutrin, Oxcodone) and gentle pool work. A person in my support group had terrible burning pain all over and a SSRI helped her. Hope you get some relief. Don't give up !.
    mshvan likes this.