Burning skin on waking

Posted by sunshineme @sunshineme, Aug 9, 2016

I experience excrutiating burning skin on waking only releived slightly with meds. Tried all topical/reviewed intollerances/allergies etc. Wondered if anyone else has this as am wondering if connected to chronic Lyme's.this followed treatment for suspected lyme's but blood tests came back negative.

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I have been experiencing sunburn pain upon waking every morning for over 2 years. I have fibromyalgia & this nerve sensation of sunburn pain without being in the sun is one of many daily issues I deal with. Maybe talk to a neurologist to see what is causing your nerves to give you this sensation. I hope this is helpful! 🙂

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@sherids

I have been experiencing sunburn pain upon waking every morning for over 2 years. I have fibromyalgia & this nerve sensation of sunburn pain without being in the sun is one of many daily issues I deal with. Maybe talk to a neurologist to see what is causing your nerves to give you this sensation. I hope this is helpful! 🙂

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Goodness, that is a long time! Mine has been a few months. I was diagnosed with Fibromyalgia 15 years ago and this is a recent symptom. Thank you for your reply, it has been helpful. I'm finding it very difficult to cope with as very severe all over, even my scalp. I hate to say this but it makes me cry it is so intense.
I do hope yours clears up as I cannot imagine having this long term.
Thank you so much again.

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@sherids

I have been experiencing sunburn pain upon waking every morning for over 2 years. I have fibromyalgia & this nerve sensation of sunburn pain without being in the sun is one of many daily issues I deal with. Maybe talk to a neurologist to see what is causing your nerves to give you this sensation. I hope this is helpful! 🙂

Jump to this post

I completely understand your pain & confusion on what is going on. 2 yrs prior to my diagnosis I had shingles all under my hair on the back of my head,,,,it too was excruciating. Best wishes on getting in to see a neurologist & finding out what is causing your pain....there are many possibilities out there :/

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Thank you. That must have been extremely challenging for you. All I've I been told is that it is not skin related. Brain sending wrong messages to my body. Total nightmare without a solution at the moment.

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Hi @sunshineme, I'm sorry to see you're having trouble resolving this pain. I saw that you said you've had fibromyalgia for 15 years but this is a new symptom. I found some information on fibromyalgia that says "symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event." http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Since symptoms can accumulate over time, you may want to take @sherids suggestion and check in with a neurologist. Have you considered seeing a specialist about this?

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Hello, thank you for replying. I have for the past 8-10 months been suffering from psychological distress due to a childhood trauma which has come to the fore. I did wonder as to whether there was a connection between that and my excruciating burning on waking. Dermatology said it was nothing to do with my skin. I haven't seen a neurologist for a while.
I also suffered a medical trauma whereby I was awake throughout general anaesthesia and felt the operation but was unable to a ake anyone aware of my distress. This was some years before becoming unwell with Fibromyalgia.
Thank you so much for this, I really appreciate your help as your website information suggests this is the link as to the cause.

REPLY
@sherids

I have been experiencing sunburn pain upon waking every morning for over 2 years. I have fibromyalgia & this nerve sensation of sunburn pain without being in the sun is one of many daily issues I deal with. Maybe talk to a neurologist to see what is causing your nerves to give you this sensation. I hope this is helpful! 🙂

Jump to this post

Hi-This may be totally unrelated but I too, post Moderna vaccine experienced extreme sunburn like burning in the opposite arm from where I received the injection, but is an arm where I had nose removal from breast cancer in 2016. That said, it happened upon awaking and within seconds I had extreme and random nerve firings throughout my body from the back of my neck all the way down to the bottoms of my feet that lasted for days - the head was spared and the burning arm resolved about 30 min later? This was considered an adverse reaction and I subsequently got the Pfizer vaccine that has 2x less the mRNA that my immunologist told me. Given my reaction I didn’t want to get a second shot but she said given my response and probably a result of my Mast Cell Activation Syndrome I should get the vaccine. I got the Pfizer without issue. I have faulty collagen/connective tissue (hEDS) and crudely explained mast cells in those tissue may be disruptive or even have extra amounts and reside close to the nerves - therefore I believe my predisposition with Mast Cell Activation Syndrome (an extreme histamine intolerance type condition again explaining crudely here) caused the flare of nerve pain burning sensation in my weaker arm. Additionally, I have hyperadrenic POTs (over production of adrenaline and a comorbidity often with both hEDS and MCAS) that can trigger a mast cell reaction as well I recently learned. Also, I l’ve come to understand that when we awake our bodies naturally release this adrenaline hormone as apart of the awakening process. Therefore, I assume why I feel internal tremors occasionally when awakening and lying in bed, as well as tingling sometimes and most likely the sunburn feeling I had lost vaccination. This may NOT have any relevance here but sharing in case any part of this may resonate with you. I hope you reach a diagnose and treatment soon! My migraine Dr referred me to a cardiologist who did a tilt table test that revealed I have a rare subtype of POTS and the recommendation to calm this over activation in the body and heart rate is to take beta blockers. I share all of this as it’s through forums I gleaned insight to my own undiagnosed treatments at that point in time. I wonder if CBD cream may help reduce your pain? I’m allergic to Motrin and most drugs (even had to go off my cancer drug) and have joint and muscle pain and my cousin sent me some amazing CBD cream (not sure if I’m able to mention the company here but happy to if given the green light) and much to my surprise within 10-15 mins I became pain free Best of luck! hEDStong.

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I have been experiencing severe burning skin upon awakening ever since I tapered off of that rat poison known as Clonazepam that I took for three months because I had insomnia. I tried to get off of it, but couldn't, and then underwent a brutally painful 14 month taper off of that poison. I have been off of it for over a year now, and my condition continues to deteriorate with about 80 other horrible symptoms of the damage that poison did to my nervous system. Has anyone else experienced this and recovered?

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@hedstrong

Hi-This may be totally unrelated but I too, post Moderna vaccine experienced extreme sunburn like burning in the opposite arm from where I received the injection, but is an arm where I had nose removal from breast cancer in 2016. That said, it happened upon awaking and within seconds I had extreme and random nerve firings throughout my body from the back of my neck all the way down to the bottoms of my feet that lasted for days - the head was spared and the burning arm resolved about 30 min later? This was considered an adverse reaction and I subsequently got the Pfizer vaccine that has 2x less the mRNA that my immunologist told me. Given my reaction I didn’t want to get a second shot but she said given my response and probably a result of my Mast Cell Activation Syndrome I should get the vaccine. I got the Pfizer without issue. I have faulty collagen/connective tissue (hEDS) and crudely explained mast cells in those tissue may be disruptive or even have extra amounts and reside close to the nerves - therefore I believe my predisposition with Mast Cell Activation Syndrome (an extreme histamine intolerance type condition again explaining crudely here) caused the flare of nerve pain burning sensation in my weaker arm. Additionally, I have hyperadrenic POTs (over production of adrenaline and a comorbidity often with both hEDS and MCAS) that can trigger a mast cell reaction as well I recently learned. Also, I l’ve come to understand that when we awake our bodies naturally release this adrenaline hormone as apart of the awakening process. Therefore, I assume why I feel internal tremors occasionally when awakening and lying in bed, as well as tingling sometimes and most likely the sunburn feeling I had lost vaccination. This may NOT have any relevance here but sharing in case any part of this may resonate with you. I hope you reach a diagnose and treatment soon! My migraine Dr referred me to a cardiologist who did a tilt table test that revealed I have a rare subtype of POTS and the recommendation to calm this over activation in the body and heart rate is to take beta blockers. I share all of this as it’s through forums I gleaned insight to my own undiagnosed treatments at that point in time. I wonder if CBD cream may help reduce your pain? I’m allergic to Motrin and most drugs (even had to go off my cancer drug) and have joint and muscle pain and my cousin sent me some amazing CBD cream (not sure if I’m able to mention the company here but happy to if given the green light) and much to my surprise within 10-15 mins I became pain free Best of luck! hEDStong.

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Can you private message me the name of CBD cream?

I see names of books and products listed all the time. Thinking is not an issue but not sure.

REPLY
@sherids

I have been experiencing sunburn pain upon waking every morning for over 2 years. I have fibromyalgia & this nerve sensation of sunburn pain without being in the sun is one of many daily issues I deal with. Maybe talk to a neurologist to see what is causing your nerves to give you this sensation. I hope this is helpful! 🙂

Jump to this post

I burn all over during waking. This has been happening to me for over 20 years. I have been to neurologists but they sre useless about this. I have limited scleroderma, monoclonal gammopathy and probable gout. I also have a mutated gene for makng the enzyme galactosidase A. Mt Sinai said that they wouldn't call it Fabry's because my mutatation is unique in their database. The mutation makes me make about 2.5 times the normal amount of the enzyme, rather than a deficiency of it.

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