No wonder you want definition, i don't blame you one bit.
If i am reading this right, when the neuro done the normal pin prick to test how your small nerves react and found then it was abnormal below your ankle then it really surprises me that they didn't do Quanitive Sensory testing in the next step of testing to confirm more evidence of small fibre damage, but finding the cause isn't always so easy as you probably already know.

Ideopathic Hypersomnia ??? what about Lyrica's possible side affects can cause problems with memory or concentration, tiredness & Vicodin is another that can cause side effects that may impair your thinking or reactions and warn to be careful if you drive or do anything that requires you to be awake and alert, so any wonder you feel tired enough to ask about stimulants, you would think that that doc would have explained those possible side affects of the medication you have to take, without saying to you your request was ludicrous, some of the medical people are defiantly in the wrong job, and believe me i have a found a lot of them in the time i had PN.

I hope you get definition of your problem and especially find the cause.
good luck
Brian

ahh Brian, you bring up the "treatment continuum" I seem to be in. If the Lyrica and Vicodin relieve the pain but may be adding to my tiredness---what is the alternative?! I ask you in jest because I don't know the answer and I don't think they know they answer either.

That's what I said to the mean doc..."well, if I'm not on lyrica my 'narcotic' usage will go up substantially, what would you have me do?".

No one seems to want to own the overall picture. If they told me to go off of the lyrica to assess the tiredness off of the drug, but were willing to accept more pain killer usage I'd certainly give it a go.

Truth be told, I've been tired forever, I don't think the lyrica makes me anymore tired and the vicodin has no affect other than dulling the pain--sometimes getting rid of it completely, other times just taking enough of the edge off.

If I could do it over again, knowing now how not normal my tiredness was, I would have attempted to treat it years ago (before SFSN officially entered my life). I dutifully told my Primary Care Doc at every annual exam that I was tired--for years. It wasn't until the answer to the following question "Does your tiredness interfere with your life activities?" was 'Yes' that I decided to do something about it.

That is why these message boards are so valuable. Sure, one may find some people with extremes of conditions, exaggerators, etc. but all of the information taken together: posters stories, questions and articles makes it possible for people who are really in the dark to get some education and feel like they are not alone in their quest to feel better or learn what might be wrong.

I am not sure how a doctor misdiagnoses RLS....this peeves me. If a patient has RLS....they know it. It also shows up on polysomnogram, as movements every every 8 seconds or so....with flexion of the foot, and sometimes the arms and upper back have it. RLS patients do not sleep at night especially between 7pm and 3am...some progress to daytime RLS...insomnia usually characterizes the disorder. RLS is not a vague feeling of heaviness or even pain in the legs. It is a movement disorder treated in general with dopamine agonists such as Mirapex (pramipexole) or Requip (ropinerole). Amitripiptyline and SSRIs are generally contraindicated as are drugs like zyrexa or any drug that suppresses dopamine. Lyrica is an antiseizure drug that quiets sympathetic nervous system activity, which may indirectly calm down RLS, opiates also calm RLS. Some patients with RLS are 'cured' by getting their ferritin levels up to over 60. RLS often is found with neuropathy. You can have normal nerve studies and a whopping case of small fiber neuropathy by biopsy (epidermal nerve fiber density)...which is the one that most good docs will do first these days. It is newer technology. They used to always do sural nerve biopsy and those are done less now that we have the skin biopsy...it does no damage to a nerve.

From what you say, it doesn't sound like you have RLS. There is also a condition called PLMD, Periodic Limb Movement Disorder, which is similar to RLS and most people with RLS are concurrently diagnosed with PLMD. You may not be aware you have PLMD, as it occurs during your sleep, unlike RLS which keeps you from sleeping. RLS is just like having a tic...you can't help but move your leg...or if badly affected, arms and back as well. I am blessed with both conditions along with my SFN and they do not know what is causing my SFN yet. I have had RLS since childhood.

If you are in pain to the point you need narcotics and they do not know for sure if you have SFN, that is something to be concerned about. Pain is a symptom....RLS is a symptom, and SFN is a symptom or 'sign' as they say, of a disease process....they are not end points but beginning points to a journey that will get you, hopefully to a solid diagnosis, which CAN be treated. If you find a cause, you may be able to stop, or perhaps recover from the neuropathy....if you don't you keep looking or accept it for what it is, a mystery.

I would be the most concerned about finding a cause of your pain.

Lyrica does make you more sleepy. Opiates in some people keep them awake, in most people it makes them sleepy.....(opiates keep me awake)....Lyrica makes me sleepy, tired, forgetful and grumpy....but it helps pain...so I am a troll many days. Mirapex causes sleep attacks in some people, as does Requip....(it keeps me awake)

On sleep, Ambien works well to give you a good night's sleep, if that is an issue, but more important is what is causing you to feel sick in the first place.

So long story short, yes, keep looking.

Yes keep looking for sure, i was forever tired a long time before the PN struck,
I was just putting it down to the long hours of driving in my work, but not long after i started taken multi B & B12 it completely changed everything so i must have been running on empty beforehand
You have probably been asked this question, but anyway if you haven't, have you had your b12 tested ?
Rose's site is well worth reading http://roseannster.googlepages.com/home

Brian