I was diagnosed with EM first and now it’s suspected I have SFN (based on QSART testing). I’m waiting to see a neurologist and am taking gabapentin in the interim, which was prescribed for EM but is being increased for SFN.
Hi BNashville - has the gabapentin helped at all?
I don’t really notice a difference, BUT I did try to stop once and the pain got worse so I guess it helps a little. Technically, I’m not on a therapeutic dose now, so I’m hopeful it will help when I am. I’m very nervous about upping my dose. Currently, I only take 500mg and they want me to get to 1800mg, which seems very daunting as it makes me very drowsy.
Fingers crossed that it helps! 
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Yes, I have both and a touch of Reynaud’s in both big toes. I’m looking for a DR. in NYC or Bergen County (NJ) to treat both. Things are getting worse.
I think I have genetic SFN and likely EM too!!
I have both EM and Raynaud’s. I went to Mayo Clinic and they believe that both are due to some kind of small fiber neuropathy. Whatever is wrong in my body, I think it is connected to all the mystery things that have been happening for years. I don’t know about all of you, but I am tired of going to doctors. None of them seem to know what is going on and don’t seem to care, either.
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Hi,
I just wanted to rep,y because I am on the board now and it seems that not too many people post all the time anymore. I also am so sick of doctors. EM is so misunderstood or not even known about. It is awful and it makes me so depressed. I got my EM because I wasn’t eating well or I had reawakened my eating disorder in 2008 because I had a physically and verbally abusive boss (female) who reminded me of my mother. I starved myself for 4 years and I was seeing a doctor (therapist) at the time who did nothing and didn’t even try. To help me stop the ’ madness’. I got nerve damage from malnutrition and the. A year later my feet started to burn. None of the doctors I was seeing even knew what EM was and they all told me I would be fine if I re established my physical health. Well I fought hard on my own to do just that. I worked full time throughout all of this and after almost four years of non stop burning feet I can’t take it anymore and all the doctors are useless. I like my EM doc but he said honestly that he can’t cure it all he can do is to try to help me with pain management. But all the meds I try make me physically sick so I can’t really take anything except gabapentin which doesn’t help for pain but knocks me out at nighttime. Anyway. I,hear you and I will pray for you tonight
Jordy
Thanks for writing, Jordy. I am so sorry you are going through this. I am like you and don’t respond well to medications, either. I weened myself off of gabapentin and also the Cymbalta that I was put on. The gabapentin helped me with the acute onset that I had. I don’t do well on those meds. I was put on mestonin, to help with small fiber neuropathy, that the doctors at Mayo seem to think is underlying my EM, Raynaud’s and autonomic difficulties. I’m supposed to take three/day, but my body can only handle once per day. I live in Vegas. The temperature is 111 degrees, and it’s only June. I moved to the desert over 25 years ago, in part, because I could not tolerate the cold. Surprise! I don’t do heat anymore! I’m glad you spoke of nutrition. I am going to start juicing in a couple of weeks and see if I can reset the stuff that is wrong in my body. I do yoga and meditation regularly (& I think it has saved me). If anyone would like to do this juicing journey with me, please let me know. It would be great to see someone…anyone…find relief from this pain. Jordy, thank you for your kind words and prayers. I will keep you in mine, too.
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consider late stage lyme and coinfections- they are the root cause of many of our problems ,when undiagnosed for many years they will cause widespread systemic damage I have the things you mentioned plus neuropathy plus interstitial cystitis, plus some form of vasculitis plus vulvodynia plus extensive lumbar disc damage and spinal cysts ALL RESULT OF NEUROLOGICAL
LYME AND COINFECTIONS, undiagnosed untreated for at least 4 decades
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Jane,
Thank you for the information. I was tested for lyme many years ago & it was ruled out. However, now I am finding many lyme tests are not accurate. Do you recommend any specific test or type of doctor/center that does this testing? Thank you for the information.
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hi, yeh this is a very emotional topic for me and many others
very possible, if not likely you have lyme and coinfections- coinfections
are now almost considered the central infections and lyme is the coinfection
and they combine synergistically to create new disease symptoms
so Elisa test done by quest is practically useless, and widespread
WILLFUL ignorance still on the part of many medical drs -many people ending
up with late stage intransient chronic neurological lyme and multisystem
infectious disease
keep in mind a LLMD will be able to diagnose from clinical signs and
symptoms in combo with tests,
the longer you have been sick harder to find in lab work as immune system
is damaged
sometimes things start to show up after antibiotic treatment
so labs, Igenex CAlifornia is the best
, also heard Stonybrook in NY is not bad
for Bartonella coinfection which can cause the EM Raynauds Interstitlal
cystitis and neurovascular damage
is Galaxy Labs in MD
there is a lot of info on the web
drs it is difficult but uou can contact Ilads association they have a
website for referals in your area
dr moyazeni,(spelling) in Rockville md is supposed to be very good for
bartonella
Jemsek in Washington dc
Dr Christ in Kansas,I am in Ct where you think it would be easy, but it is
not
see if there are support groups in your area
babesiosis is very tough and makes all other infections worse-
if you send me your email address I can send you some links
what are your symptoms, how long have you had them,
and where do you live?
my email:
■■■■■■■■■■■■■■■■■ [email address removed by modsupport for your online safety. Please send private messages to share email and phone number information.]
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I was up to 2700 daily of gabapentin did nothing for pain,
temp disregulation and autonomic disfunction are common symptoms of lyme and coinfections especially babesiosis-
at first pain got worse on lyme treatment then got better-my pain progressed to being everywhere-searing lacerating
please try to rule out lyme and coinfections as root cause
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Two good books to start with by Dr. Horowitz,
Why Cant I Get Better ,and latest, How Can I get Better? good overview of symptoms and diagnoses and possible treatments
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https://www.lymedisease.org/346/
first of many links
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Yes it seems EM can be secondary to a Lyme infection or its co-infections , But definitely it is 100% late stage/chronic Lyme infection when the EM arrives
… …it means you were bit well over 6-9 years previously
Before the serious EM symptoms just arise out of nowhere one day And yes a lot of people never know they were bit or had the bulls eyes rash or never even seen a tick on their bodies , especially if the tick is the size of a poppy seed
Just Crazy and mind boggling 
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yes all very true, thanks for clarification, mine went back about three decades before EM and Peripheral Neuopathy, Raynauds, Autonomic Disfunction began-firstly was diagnosed with Interstitial Cystitis, severe Lumbrosacral Disc Disease, Vulovdynia, Hashimotos Thyroidism, strange rashes, Gastro problems severe anxiety, more…- in other words; entire immune system damaged-wasn’t until I received blood transfusion and contracted Babesiosis,(another set of symptoms-Babesiosis can manifest in 100 possible symptoms, as can Bart and Lyme) that I became deathly ill for the next 10 years- that is why I am trying to sound the alarm for folks that seemingly unrelated sets of diagnosis/conditions can be rooted in Lyme and can shift and unfold over time, (multisystem infectious disease) and in my case, Neurological Lyme, Bartonella, Mycoplasma ,Tuleremis, Babesiosis, (Microti, and Duncani) -mycoplasma and bartonella and lyme often attack the bladder and urethra first. Please avoid blood transfusions if at all possible! Blood supply is very contaminated, particularly with Babesiosis! Good luck and health to all!
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oh folks please one more really important thing to bear in mind, I was tested for Lyme by the Elisa test,(negative), by my narrow minded, unknowledgeable Neurologist over the period of time that my EM was spreading/worsening bouncing thru out whole body including bladder/ back diagnosed EM, Small Fiber Neuropathy/Polyneuropathy, Autonomic Neuropathy, Raynauds became completely disabled with many other symptoms of infectious disease ,including sleep disorder(fractured), NeuroCoginitve dysfunction, tremors, etc… he swore up and down that I did not have lyme because Elisa was negative, wasted 7 years with him, was suicidal and completely disabled everyday from widespread progressive, excruciating pain and suffering while he told me it did not matter what the cause was as autoimmune problems are squirrely, we will just treat symptoms- Please folks understand, the Elisa test is practically worthless for diagnosis, ,particularly with LATE STAGE LYME, the immune system hides it , even the clueless CDC states on Elisa bloodwork that the test should not be used for definitive diagnosis, tha t Drs need to do clinical diagnosis. NOT to mention the fact that there are numerous coinfections that need specific tests to diagnose- please note, Infectious disease Doctors are no better, I went to three who told me I did not have lyme- they will dismiss you immediately out of hand without a positive Elisa test- you must see Lyme Literate Doctors
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Hi Jane 3
So sorry to have you suffer so long …just terrible
Yes!
The Elisa test is not accurate at all and that’s the normal test they give you , when you think you have Lyme
It’s not some conspiracy, it’s just outdated
Would they give outdated test for cancer patients? From the 1940s
I also have taken the elisa test four times with different doctors and paid for one Elisa test online and all the Elisa test came back negative
.
.
Only Get a igenx test , or get to a legit LLMD to see if your EM “could” be caused by late stage Lyme disease
by a tick over a long time ago that you never even noticed or seen anything on your body
.
.
Jane 3 , Thank you for stories like yours and others that have shared their stories ,THANK YOU!!
Yes I totally get your passion for helping possibly others that this has happened to
…it has helped me out !!
And I’m sure a ton more …maybe they don’t have to suffer as long mentally and physically
.
.
also, saves them the run around from doctor to doctor and your BANK ACCOUNT $$$$$, hoping the next doctor can help you …and the next one will help you … …and the next one will help you, etc! Until you made the full rounds of specialist
All the while you get progressively worse , while your looking for answers
It’s abuse when the doctors yell at you or refuse to help you when the topic of Lyme comes up
Yes!
The pain is real …
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thank you for your compassion/understanding, sometimes the weight of my
experience over decades is just too much to bear, and the suffering
continues in varied forms…
if I can help others that is a great solace
also folks, keep in mind that it is NOT ONLY ticks communicating these
infections, almost every vector on the planet can carry some form of
Bartonella, (fleas, sand flies, spiders, lice, bedbugs etc.), and many of
the coinfections as well, Babesiosis is also found in mosquitos, and now
it is coming to light that Lyme itself might be carried by other vectors as
well.
Please everyone, you must educate and advocate for yourself if you suffer
from complex hard to diagnose health problems- (no matter what the
cause!). YOU are the only hope you have of making it out of what can be a
morass of unexplained conditions and suffering,( even if it results in
scorn and disrespect form the medical profession).
I send my compassion and good wishes to you all for hope and recovery.
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