what was your TSH? was a complete thyroid cascade done?
how long after the last little one was born did this situation arise?
have they done any testing for viruses?
have you been thoroughly tested for Lyme disease?
many meds can be crushed or capsules opened....not all though, check with pharmacist.....good luck

Thanks everyone for your help.
Will reply to you all when I have a little more time.
Slept only about an hour and will try to sleep now ... can't seem to stay awake.

Your head must be spinning huh Miriam! You're getting an avalanche of info here !! Some goes wayyyy over my head.... but i hope you are able to comprehend better than i.
I'm so frustrated! I had typed you a nice long post day before yesterday and somehow lost it ! grrrr Now i can't seem to 're-elaborate'....
Something to do with asking you if you can think of anything ANYTHING that could have triggered your pain back in Feb. Any kind of injury or insult to any part of your body. Reason i ask is cuz my ordeal started suspiciously after i had fractured my hand (kicked by horse). The hand healed fine, but the burning bilateral knee/leg pain started when i was trying to make a comeback and i had joined a gym and was walking 100 miles/month on treadmill. Well, stupid me. Looking back, it's plain to see that i got too ambitious and overdid what my aging body was capable of handling. Neuropathy set in bigtime.
I've since found out that alot of these burning pain symptoms can set in as 'referred pain' from an injury (or even something as small as getting a vaccination shot) because the central nervous system reacts (the 'fight-or-flight' thing) and goes into overdrive and nerves start misfiring everywhere......this may fall under the catagory of RSD more tho......I've been told i have both.....
Just try to think of anything that might have happened back in February (is that when you started on that new medication?
Anyway, you've been getting asked lots of questions - not that you have to answer them all - just ask yourself the Q's and be a detective

But yet i DO understand that when the depression cloud has you bogged down, it's hard to get the strength or ambition to even TRY......maybe just try and line up your issues in a single-file line and try dealing with them one at a time....which comes first - the chicken or the egg? That's exactly how pain and depression are.....bleah.

If you can at least get something to help you not feel like a pendulum ....something that keeps you evened out emotionally (more pills?! )
then you'll be able to deal with a battle plan with your armor on straight.
Mucle relaxer or Xanax is an instant bang for your buck, if you're afraid of committing to an anti-depressant just yet.... Find out from doc which is ok to crush up and use. Makes perfect sense - you are all tensed up physically and emotionally because of the pain.
Anyway, gotta go.....
You've started a heck of a good thread here and you're getting so much good advice....everyone is really pullin for ya and that is so
fantastic!
As always,
Rae

Just a vent:
I wish it was so easy for me to take all of these meds/vitamins that you are so kindly suggesting to me. I feel crazy that it's such a struggle for me to take medication, but I'm gathering all the info that you guys suggested and will try to start with one thing at a time.

aeb, echoes, antonina, Mrsd ... you gave so many wonderful suggestions, thank you. I will look into what you suggested.

pabb, my symptoms started about 11 months after my little one was born. I did have my thyroid tested, and was tested for lyme as well, but I'm not sure what you mean by thoroughly ... I would hope they would test it thoroughly! What is TSH? I'm not sure about specific testing for viruses ... need to check all my records and ask Dr. Thanks for posting your message.

glenn, I have been to a total of 3 neurologists, with Dr. Latov my third. My first neuro told me I'm stressed and I need to relax. The second neuro, though, was the one that did the comprehensive exam, EMG, blood work, etc. and diagnosed me with Small Fiber Neuropathy. I went to Latov because after learning he knows a whole lot about neuropathy, I was hoping that maybe he could help me out in a way that my second neuro wasn't able to, but Latov pretty much echoed what the second neuro did. So as far as getting the biopsy ... I know I'm experiencing symptoms of Small Fiber Neuropathy and I'm okay with knowing that without the biopsy for now. If I do feel at a later date that I would like to have this biopsy for whatever reason, I will definitely look into it. The only person who I would really love to get the biopsy for is my mother ... she is in complete denial and thinks I'm in all this pain because I am tired ... but if the results come back negative ... I will be in hot water

rae ... my head is spinning, but I'm hoping to gather all the info from everyone's suggestions and use it. Something about a person being depressed and not able to make appropriate decisions ... I think that's me at this point. Thanks for writing the message, even though you lost it in the end.
I'm sorry to hear about your situation and how you think your neuropathy started. Here for you so don't be afraid to vent away

Today is actually not a good day in terms of my pain .. I'm in incredible pain all day today and all I can do is wait until this intensity decreases. I will try a hot bath later ... at times, I feel a little better while I'm actually taking the bath, although as soon as I come out ... we're back to square one.

Thank you all so much for your help both practically, with your wonderful suggestions, and just by listening to all of my vents. I really appreciate it.

Miriam

Hi ! i wanted to 'revive' your thread cause it's such a good one.....

Thought i'd share this and maybe it'll kinda work for YOU as well !
I've suspected throughout my 5yr battle w/PN (after ruling out practically everything else) that MAYBE my ordeal DOES have to do with my 'carb' intake. I know which are the good and bad carbs, but i've never had the self-discipline to actually stick with a good healthy plan for very long....well, i've been on a pretty strict diet that centers around the glycemic index stuff and it's only been a week, and i've got to say SOMETHING sure is happening.
In a GOOD way !! Or maybe the supplements i've been taking are kicking in, or both....but i started the B12 regimen from the 'stickies' at the top of this forum amongst the other main ones, and my pain has dramatically reduced.

I'm not quite sure what to think - it seems too soon to get my hopes up because i've had 'up' moments in the past only to be back to square one with the pain levels.....but i dunno man ! Something seems to be changing....

Give it a try - there certainly is nothing to lose! (I know you love cake so don't hate me) but try going for a couple of weeks just eating a strict regimen of the 'good' carbs only.....no cake, no cookies....no sweets.....
no fun! But hey! You could possibly save yourself THOUSANDS of $ in medical bills ruling out other issues JUST by changing our eating habits!

Just thought I'd throw this out there.....
Hopefully more knowledgable ones will come along and expound on what i'm trying to say.....i'm not too good at talking the medical language but i DO NO that glucose levels (pre diabetic conditions), and glycemic index and/or possibly glucose intolerance DOES play a roll....

It's beginning to make a a believer out of me PLUS i'm losing some of the weight i gained on stupid meds (like Lyrica) that has backfired on me....

Later my friend!
Rae

I don't want to rag on this issue, but, interdose tolerance or tolerance withdrawal of ANY benzodiazepine will cause burning. I went thru it. Twice. (Yes, I am a moron.) Six weeks out from quitting, I still have odd burnings all over, especially the mouth. How much of this is disease or due to drugs, I can't know. Now I have to monitor my condition by just looking at labs. I imagine this will go on for up to 6-12 months, a little fact docs don't tell you when they give you the benzodiazepine.

I don't know if you are on one, but if not, really think thru going on one.

I am less adverse to opiates then to benzodiazepines. An opiate you can get off of with far less disability.

Also, you can't just go on fentanyl, you have to be acclimated to opiate use. Back when my doc put me on fentanyl from hydrocodone and did I get sick! You have to be on a substantial dose of oxycodone to up to fentanyl. My system shut down on fentanyl and I got Paradoxical Pain.

Have they tested you for all the antibodies?

i am so sorry. i feel for you. 20 years ago i began to have the exact symptoms. it began with burning and tingling in my feet, then increased in both legs and feet, eventually in arms and hands. NO doctor could diagnose me even though i had history of a tick bite. i went 5 long miserable years undiagnosed with lyme disease. by the time i was finally treated it was too late to stop the nerve damage and i have now lived with the neuorpathy 20 years.

has any doctor mentioned lyme? i was diagnosed with everything under the sun, all wrong. the lyme was able to invade so many systems in my body...CNS, bones, heart, i even have some nerve damage in my inner ear area so i deal with a lot of balance issues.

you sound exactly like me 20 years ago. i am so, so sorry you hurt like that because i can and do relate.

if someone has already mentioned lyme i am sorry. i think i read most of the answers but may have missed some.

kathy

Thanks Kathy, Lyme disease can do much damage. A person we know had much damage and now has a fibulator.

Hi All,
Im very glad i found this place and have been able to read everyones responses. I am 35 yrs old and was diagnosed with SFN one year ago but have been having symptoms for about 3-4 yrs now. I have been to several doctors and am about to leave for a pain mgmt clinic in a few mins. I even saw a Dr at Barrows Neurological Institute who said to me when i asked what causes this, "well buddy, its just one of those things where life sucks". That was the last time I saw him. I have tried countless medications including neurontin, cymbalta, lidocaine patches, lyrica and pain meds including oxycodone, tramadol, butrans patch, nucynta, vicuprofen..etc. The only thing that has had any effect in which i can tolerate is oxycodone. I have read that many people take the gabapentin/neurontin, but of course when i took the lowest dose, i woke up with the room spinning and throwing up. On the lowest dose!! It has been very frustrating to say the least. And i have a very understandable wife and two little girls, but it pains me to see their faces when i have really bad episodes and can hardly get off the couch. "daddy are you sick?" My girls are 2 and 4 and my world. I just pray they dont ever get this.
I have to leave now, but will post my results on the pain clinic. Wish me luck. Thanks to all who share with us!

i hope you made out well today at the pain clinic.

that quote from the Barrows neurologist, "well buddy, its just one of those things where life sucks", is a classic!