any advice for burning skin/neuropathy pain?

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donnatwin2
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/15/2010 12:06 PM (GMT -7)   
Hi everyone...My name is Donna and I was diagnosed with lyme 2 months ago - am taking doxy and amoxicillin - Probably had lyme for 1-2 years...I had some scattered "hypersensitivities/white matter" show up in a brain MRI - been told I probably have MS and about 8 doctors later, found one who did the western blot...and here I am...I guess I'm lucky after hearing the horror stories some people go through...my biggest issue is the worst burning pain in my skin - mostly arms and hands, but it will move to my feet, back, etc. - I could swear someone is holding a blow torch but there is nothing there...my husband feels my skin and it's not even warm to the touch - I've tried high doses of neurontin, but even that has stopped helping...any ideas? It is excrutiating....I'm also having tremors in both hands....my doc is going to try IV recephlin?? spelling?sorry...will have a PICC line put in next week - does this ever go away? Even narcotics don't help and that is a last resort for me...my cognition is already impaired...would appreciate any ideas...am taking baths, sauna, coffee enemas, mud packs to my hands...it seems that's all I do all day, is try to manage this - I'm fortunate to be a teacher and have a few weeks off to focus on this...by the way, my identical twin (in another state since we were 17) also has lyme with co-infections of babesia and morgellons...she is suffering more than any one human being should ever have to suffer - I feel almost lame talking about my symptoms when hers are so horrible....
my most humorous story was going to see a dermatologist (they are the worst) before I was diagnosed...he asked if I was taking niacin (will cause flushing of the skin) - I told him "no" - then he asked if I took a multi-vitamin...I said yes, but it doesn't have niacin in it...he told me again to quit taking it! When I left, he wrote on my discharge form to "discontinue niacin"....what kind of broken medical system do we live in, anyway? yikes...
any advise would be appreciated...
Donna

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/15/2010 12:50 PM (GMT -7)   
My dr. has me on neurontin amongst other things which I believe is helping with the burning on one side of my face. Best of luck to you.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/15/2010 1:37 PM (GMT -7)   
You might try Benadryl (or another antihistamine). This is the only thing that helped me when I had very hypersensitive skin and nerve pain from Reflex Sympathetic Dystrophy. Another thing to try is Lidocaine patch placed on the most sensitive area(s)...I unfortunately was allergic to the patch so couldn't use them.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 7/15/2010 4:29 PM (GMT -7)   
just a guess here but have you tried to sweat this out in a sauna.. hot sauna then cold dip in pond lake or shower.

It sounds little crazy but the effect of sweats is huge. if your skin is screaming at you it must b maybe cloggd or feels trapped like so the sauna will open up the pores.

I don't even know if it makes difference. sauna DRY ......or maybe even a STEAM room.

the infared saunas I hear about all the time now that are suposed to have this incredible benifits but I would hop into a good old fashion big long slow sweat.

sometime you hit the room just right so it comes on slow and steady insteady of knocking you out right away because temperture is too high.

goto local gym and they ususlly have sauna and steam.
hep c , lyme
Dad has lyme


donnatwin2
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/15/2010 6:36 PM (GMT -7)   
Thanks so much, everyone...for the great ideas....I have been going to a sauna, but will step it up a little bit...all of your comments are very appreciated....
donna

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 7/16/2010 5:32 PM (GMT -7)   
Hi Donna. So glad I saw your post as this topic is on my mind, too. For the past few weeks I have a place on my upper arm that is numb as if it had novicaine in it. Sometimes it becomes tingly, or even stings. It's not swollen. There is no visible skin anomoly. I was wondering if this is part of Lyme and/or treatments. I'm not sure what Reflex Sympathetic Dystrophy is, or if it is associated with Lyme. Does anybody know?
Rose
I have Lyme; it doesn't have me.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/16/2010 8:27 PM (GMT -7)   
hey Donna, what narcotics have you tried? it is shocking that MORPHINE doesn't take the pain away. I have tried fentynol pathes and still had to take roxycodone. for me the 5mg roxy are the best for break through pain. tha's the percocet without the tylenol. I used to take one 5 mg a day ..now I take 6 over course of day.....I couldn't put my feet on the ground with out them. but if I increase my cortisone I can lower the oxy intake. so pick you poison.
hep c , lyme
Dad has lyme


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/17/2010 4:27 AM (GMT -7)   
RSD is not known to be caused by Lyme; it is a severe chronic nerve pain that is usually triggered by injury. Mine was triggered by spraining the bottom of my foot twice within 7 days.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 7/17/2010 11:44 PM (GMT -7)   
Razzle - I've seen something like that on a medical program once. It has occurred to me that those of us with neuro-Lyme may be vulnerable to chronic nerve pain conditions. Totally a personal observation, but these days anything that could hurt hurts more than it used to. A simple bumped finger or stubbed toe seems intensified. I'm really sorry to hear you have this and hope it is reversable over time.

Rose
I have Lyme; it doesn't have me.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/18/2010 1:26 AM (GMT -7)   
Actually, my RSD has been in remission since 2001...it tries to come back when I don't exercise, but I've managed to keep it away so far.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


mari70
New Member


Date Joined Jun 2017
Total Posts : 6
   Posted 6/14/2017 9:08 AM (GMT -7)   
I have a non painful version of the freezing/burning sensation that migrates to different locations on my body. I first felt it when I was 38 and first showed up on my arms. And would get short episodes. NOW, recently, it is an every day occurrence. It is a very odd sensation. I think this episode came on due to a stressful period I recently went through. I was diagnosed with fibromyalgia in my late 30's, was treated for Lymes in 2012, and also am affected by chronic fatigue. I was diagnosed with epstein barr in my early 20's.

So it seems that my freezing/burning skin sensation is different than most since mine doesn't involve pain... interesting and figures...

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6073
   Posted 6/14/2017 10:09 AM (GMT -7)   
Hi mari70 -

Welcome to the forum! I see this is your 2nd post - not sure if anyone has suggested this but please be sure to read the "New to Lyme?" thread at the top of the page - very helpful as you're starting out.

This is a pretty old thread so many of the posters are not around any more but hopefully the current members we have will share ideas, suggestions so I'll give it a bump to the top of the page.

Also, wanted to share that while painful burning neuropathy is very commonly a bart symptom, for me it is a viral symptom... so that is something to consider if bart tx isn't gutting it. I also first got it on my arms and considered it was a chemical sensitivity - when clothing or bed linens brushed up against my arms it felt like someone was rubbing my skin with sandpaper... but I did get good relief w/ antivirals.

Your painless freezing/burning sensation is probably a little different but could be caused by the same triggers (bart, chemicals, virus). Particularly, given your prior diagnosis w/ EBV.

And, I'll also add that MOST (something like 90% of adults) have EBV, it's just not active or people are asymptomatic in a lot of people.

Also, fibro and CFS (chronic fatigue syndrome) are also VERY common initial diagnoses for people who have Lyme. Both are simply names given to groups of symptoms--the diagnosis and treatment does nothing to discover or address the underlying cause, which is very likely a Lyme & Co infection(s). And these misdiagnoses treat only symptoms and allow the infections to linger, grow and continue to do unmitigated damage to our bodies. So I'm really, really glad you also received the Lyme dx.

Are you currently treating for Lyme & Co and/or viral load?

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!
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