Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Burning skin - does anyone have something similar?

Discussion in 'General Symptoms' started by Anne, Oct 27, 2014.

  1. Anne

    Anne Senior Member

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    One of my worst symptoms is burning skin. I’m starting this thread to see how many of us have something similar to this, and to see if anybody out there seems to have the same form of it as I do. I found some info in an earlier thread.

    This is similar to what happened to me, though in my case it occured a few years into my ME. I had a history of urticaria, sensitive skin and allergies, but in 2007 a violent reaction occurred and my skin seemed to completely lose tolerance. I started having a feeling of constantly burning skin, my urticaria increased and I had “allergy like” reactions such as cold sweats and shivering. I could no longer tolerate most textile fabrics (I had to stop wearing the fleece pants and sweaters I had used for years), heat, sun, screens or chemicals.

    Ever since the burning skin has been my worst symptom (and I’m severely ill and mostly bedbound, so ranking it my no 1 symptom means it’s HELL…) The visible allergic reactions (the urticaria) have subsided, but the violently burning skin remains. It feels like having fallen asleep in the sun and gotten really badly sunburnt, and then being forced back out into the sun.

    The burning is worst on my face and the front side of my body, but occurs all over the skin. It’s triggered by most textile fabrics (I have an extremely hard time finding clothes and bedlinen I can tolerate), heat, sun (even sun through the window), chemicals, screens. It’s also triggered on the few occasions I can do some very small exercises for my neck and back – that is, when blood circulation increases.

    When I’m exposed to triggers and the burning increases, I also get reactions which remind me of the first stages of the allergy shock I once had: shivering, cold sweats, extreme malaise. So for me, it’s not a straightforward allodynia, it seems immunology/allergy connected and probably has to do with my previous problems with urticaria, hypersensitive skin and heat allergy. Blood circulation seems to be involved somehow.

    Does anyone have anything similar to this?
     
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  2. Anne

    Anne Senior Member

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    I guess this would mean in my case it’s probably not small fiber sensory neuropathy, since my burning skin intensifies with movement (when I get the blood circulation going by doing small exercises).

    I should probably also mention that I've tried many medications and supplements/protocols, but no major relief so far. (I'm also one of the ME patients with massive drug sensitivity, so most things (even supplements) come with problematic side-effects.
     
  3. Tired of being sick

    Tired of being sick Senior Member

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    I get this sunburn feeling once in a while..

    So it is just another symptom of CFS/ME
    IMO..

    Although I believe that poor blood circulation is the main cause of all the uncommon skin sensations such
    as the feeling of pain with minimal touch or pressure,tingling numbness,pigment changes like livedo riticularis,sunburn feeling,ETC..
     
  4. end

    end

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    Check out this thread: http://forums.phoenixrising.me/index.php?threads/long-term-effects-of-mold-voc-exposure.33241/

    "Burning skin" is one of the effects of Mold/Chemical VOC exposure.

    "The sensory and motor nerves respond to pungency by trying to hold the breath, discomfort, or through sensations such as itching, burning, and skin crawling."

    Fungal exposure can also come from any volatile compounds (VOCs) that a fungi/mold creates through primary or secondary metabolism that then becomes airborne. (Primary metabolic processes are those necessary to sustain the life of an organism.) These volatile compounds may be constantly created as the fungus
    consumes its food source during the primary metabolic process. VOCs can irritate the mucous membranes of the eyes and respiratory system.

    Fungi that consume certain organic sources can release highly toxic gases. For instance, a fungus that grows on wallpaper often releases toxic gas arsine directly from the wallpaper that contains arsenic pigments. Thus, fungi and molds can release dangerous materials when they break down the host material. This can cause mucous
    membrane irritation in sensitized individuals.
    [​IMG]Fungal volatile compounds may impact the "common chemical sense" which senses pungency and responds to it. This sense is primarily associated with the trigeminal nerve. The sensory and motor nerves respond to pungency by trying to hold the breath, discomfort, or through sensations such as itching, burning, and skin crawling.
    Changes in sensation, swelling of mucous membranes, constriction of respiratory smooth muscle, or dilation of surface blood vessels may be part of fight or flight reactions in response to trigeminal nerve stimulation. Reactions often include a reduced attention level, general disorientation, lowered reflex time, dizziness, etc.

    Volatile Compounds found in or around homes can be responsible for mucous membrane irritants. It is thought that fungi can add to the already existing compounds when breaking down certain organic substances. A mold-contaminated building may have a significant contribution from its fungal contaminants that is added to common VOCs---building materials, paints, plastics and cleaners. VOCs in general can result in symptoms that include lowered attention span, headaches, lack of concentration, and dizziness.

    Reaction to Mold Odors

    Some individuals have very strong reactions to the smells given off by molds. Among humans, there is a high degree of variation in ability to detect these odors. Certain individuals can detect low levels of VOCs, while others can only detect relatively high levels. Those individuals who are particularly susceptible to mold odors may react with headache, nasal stuffiness, nausea or even vomiting. Asthmatics often exhibit symptoms when exposed to certain odors.

    Changes in sensation, swelling of mucous membranes, constriction of respiratory smooth muscle, or dilation of surface blood vessels may be part of fight or flight reactions in response to trigeminal nerve stimulation. Reactions often include a reduced attention level, general disorientation, lowered reflex time, dizziness, etc."



    Have you had past mold exposure? It does NOT have to be visible for it to have affected you!!!
     
    Last edited: Oct 27, 2014
  5. alex3619

    alex3619 Senior Member

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    This topic comes up semi regularly. I even started a thread on burning feet syndrome a few years back, and we reviewed common treatments. This is currently one of my worst symptoms. Late last year it was my worst symptom. I have gone from burning feet syndrome to burning body syndrome ... everything burns. During high summer, which is almost here now as I have had a few times now I cannot sleep due to the burning, it can even move internal and include lungs etc, though I suppose technically lungs are mostly external .

    Let me ask a question that has been bugging me the last few days. How many of you who have this are on ACE inhibitors for high blood pressure?

    I do think its linked to small fiber polyneuropathy which is often found in fibro and CFS, and by implication ME.

    Lots of things have burning sensations as a side effect though, typically an unexplained effect.

    In my case I notice things that disturb blood vessel function (especially vasodilation) tend to increase the intensity.
     
  6. ahmo

    ahmo Senior Member

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    I'd developed extreme sun sensitivity, felt burning with any small sun contact. When I started pyroluria supps this stopped within days. (p5p, selenium, zinc, manganese) I'm still very sensitive to fabrics. Could you be experiencing histamine reaction, from foods, from medications? Or mastocytosis or mast cell reaction (mast cell disorder)? I sleep on/under chenille bedspreads, softest thing I've found. So sorry for your pain and distress.
     
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  7. osisposis

    osisposis Senior Member

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    I have the burning reactions, WDB exposure here, very likely mast cells and oxidative stress!
     
  8. Tired of being sick

    Tired of being sick Senior Member

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    Just to make it clear,

    the sunburn feeling that I occasionally experience on my skin is not triggered buy the sun.

    It is over reactive nerve ending fibers in the skin itself....

    I do not stay out of the sun because I'm afraid of the sun.
    actually it was always difficult for me to get sunburn even without protection

    I avoid the sun for the fact it triggers my POTS condition like no other..
     
    Last edited: Oct 27, 2014
  9. CantThink

    CantThink Senior Member

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    @Anne

    When you say burning, do you mean sensation or does the skin go red also?
     
  10. liquid sky

    liquid sky Senior Member

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    I agree it sounds like small fiber neuropathy. They can test for it with a skin biopsy. Treating it is difficult. They tend to use seizure drugs and antidepressants. The difficulty arises because they usually use high doses of some of these meds(especially anticonvulsants) and ME patients don't generally tolerate this.

    Sorry you are suffering. I have this too, but I can tolerate cottons and sheets on my skin. I cannot tolerate any blankets touching my skin. Wish I had something useful to share with you.
     
  11. perchance dreamer

    perchance dreamer Senior Member

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    The sensation of burning skin can also be a symptom of fibromyalgia.
     
  12. liquid sky

    liquid sky Senior Member

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  13. NilaJones

    NilaJones Senior Member

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    I've had a mildly itchy rash for 6 years. The night before last, though, was the first time i had the burning. Thankfully, it went away by morning and was replaced by the mild itching. I'm interested to know that it's a common symptom.
     
  14. Tired of being sick

    Tired of being sick Senior Member

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    Fibromyalgia is a cluster of symptoms wrapped up in a tight little bow,placed inside of and 2ndary to CFS/ME or a ton of other debilitating capable illnesses.

    Just as POTS is...

    Just as ADHD is.

    CFS/ME is the mother ship..

    Out of all the above 2ndary to underlining causing illnesses..
    ADHD is the only one capable of being a primary illness,IMO of course.
     
    Last edited: Oct 28, 2014
    DaisyRuth likes this.
  15. Anne

    Anne Senior Member

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    Thank you for your replies!

    @CantThink : I do sometimes go red, especially in the face. If I expose myself to enough triggers, my rash (urticaria) returns. But mostly it's burning without any visible reactions. (Don't you wish sometimes that your sytmpoms would be more visible...?!)

    @liquid sky and @alex3619 : About small fiber neuropathy: But what about that thing about the burning getting worse with rest if it's small fiber neuropathy? For me it's the other way around, my burning skin intensifies with movement (when I get the blood circulation going by doing small exercises).
     
  16. lnester7

    lnester7 Seven

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    @Anne I get mine in the spine and brain pretty bad, Mine goes away if I take every day a Acetyl-L-cartinine with Ala everyday in the morning. As soon as I stop the supplement, it does come back but is completely gone if I take this supplement. Mine is intolerable in the head/brain/spine so I have to keep it at bay. Other parts of body its mild more numbness and electical like sensations but all those are gone while taking this pill.
     
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  17. DaisyRuth

    DaisyRuth

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    I get a burning rash on my elbows and wrists, I tend to use calamine lotion on them and that helps. I have found that cortisone creams just make it a whole heap worse. Every night time, my back and buttocks are literally burning though in bed. My feet and hands can be freezing, but I sure warm up the whole bed with my super hot skin! Is this the burning that you are referring to? I have read that when the immune system is under strain (as all of ours are..) then our body takes the heat away from the extremities and keeps it at our core, which I think is why I am so burning hot around my trunk. Do you itch also? I think this is also a common symptom of ME/cfs.
     
  18. CantThink

    CantThink Senior Member

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    @Anne

    The reason I asked is because I wondered if you'd looked at Erythromelalgia?

    I get this in my hands - they flush bright red from around the knuckles to the tips of the fingers. The whole palm will be bright red. The veins on the back of my hands become prominent. It burns and feels hot to me and hot to others. It can be unbearable.

    Typically it affects feet (and legs). Some people also get it in their hands or just their hands and some people get it in the face (nose/ears tend to be really bad).

    There is a really good E.M. group on Yahoo groups and they are also well versed in helping people figure out differential diagnosis.
     
  19. liquid sky

    liquid sky Senior Member

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    Small fiber neuropathy can hurt/burn any time. It does tend to get me in bed though, while trying to sleep. My skin never turns red except for facial flushing. I think the burning pain is worse when I am sickest or about to flare up.

    This is exactly how it feels. Feet like ice, but burning hot in other areas. My upper arms tend to burn in the daytime, but my legs and spine/buttocks more at night. I had the skin biopsy and was diagnosed with idiopathic small fiber neuropathy. That means it is just a symptom of something, but they can't link it to any disease. Of course, I think it is from the ME.
     
  20. liquid sky

    liquid sky Senior Member

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    Inester7, do you get burning skin or just inside the brain/spine? I have not found anything that helps much with the burning. Do you take a particular product or just any kind of the two you mention? Ala, I guess is alpha lipoid acid. Would you mind sharing the product names and dosages you use? Thanks.
     

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