Wow, thank you to each of you for responding.
I hope many more will post (not because I want others to feel this way, but because now that I know other people do feel this kind of pain, I believe we are more likely to find relief better by working together than we will alone).
Let's see...
Nanonug and Liquid Sky, I will have to read up on Mast Cell disorders.
Nanonug, I don't feel a warming sensation, but very often my pain episodes at their worst are accompanied by skin that is warm to the touch even though my temp is 97ish. My back and neck are especially warm.
Marlene, thanks for the suggestion of ALA and checking the B levels. My B levels checked out fine 5 years ago at illness onset, but I don't know about lately. I have a specific question about ALA and/or B12 therapy (which I see has been covered at length on this forum in the context of treating M.E. symptoms in general)...but in the context of acute neuropathic pain...do these therapies produce
immediate (and
temporary) symptom relief after each dose (similar to a pain-killer for example), or are they more intended to fix the problem by balancing out the dysfunctional systems that cause the pain? Another way to say it is...for those that have found ALA and/or B12 to help with extreme neuropathic pain...does it kick in immediately (within minutes) or is it gradual (days or weeks to notice a difference)?
More random background:
I had a milder form of this neuropathic pain at illness onset that I referred to as "flu-like fatigue." It got worse in year 2 of my illness and has been steady in this extreme form for 3 additional years now.
The agonizing pain greets me each morning and then comes in waves throughout the day regardless of activity. However, physical and mental exertion bring it on faster and with more severity, and the repeated push/crash cycle has a cumulative effect that sends me from homebound (at baseline) to bedbound (during crashes).
The only short-term or immediate relief solutions I've ever noticed making any difference (for this particular symptom of neuropathic pain) are: Neurontin (like throwing pebbles at a flood), Opioids, and most surprisingly: Ambien (zolpidem). Because zolpidem is a sleep med with loopy side effects, it presents obvious problems as a daytime solution to pain management, but nonetheless it is part of my arsenal of less than ideal solutions to a major pain problem when used at controlled doses at strategic times of the day (to avoid awkward interactions with people for example). None of these seem ideal for long-term use (in my conservative opinion and in my limited knowledge), hence my seeking input from the illness community and doctors alike.
As a side note on zolpidem, my doc contacted the manufacturer before prescribing experimental day-time doses to see if there were any studies on it's use for anything other than sleep, and we were both intrigued to learn that patients with severe brain injuries that were nearly comatose experienced increased functionality for several hours while on each zolpidem dose. (sorry I don't have a link...it is in my notes with my doctor). My doc (who is a GP) is trying to ask around to other doctors who specialize in M.E. to find out if they have any experience with M.E. patients experiencing immediate neuropathic pain relief with zolpidem. So far, the only responses are that they either have no reports of this or that it could be explained as an indirect benefit from better sleep (which is certainly not the way I experience it...it is immediate and wears off
before I go to sleep). The only connection I know between zolpidem and neurontin that could be a clue to their effectiveness with neuropathic pain is that they both work on the Gaba receptors (one is an agonist and the other an antagonist). Hopefully that means more to you than it does to me...
Please pause for a moment and enjoy the irony of someone with "Chronic Fatigue Syndrome" (I hate that name with a passion!) experiencing increased functionality and pain relief from a sleep med without said person going to sleep.
In my initial post, I asked about medical tests for this symptom of extreme neuropathic pain. I'm wondering if it is a separate and treatable problem from M.E.? For my part, I consulted a neurologist who was busy studying for boards who (after 15 minutes) said I was beyond the scope of private practice and instead wanted to send me to a university to be studied. He said he would fast track me and would be willing to lower the threshold for referral and all I had to do was endure a handful of tests as a prerequisite. I'm afraid I chickened out (couldn't deal with the prospects of the logistical effort or expense of going through the tests) and ultimately just didn't believe that going to a university with all-too-familiar views on M.E. would get me anywhere. Still, I'm wondering if any of these tests would have done any good?
1) An EMG (nerve damage test). This one I really wonder about...has anybody out there done this?
2) Daytime sleep study (to rule out narcolepsy..yeah right)
3) Blood test for a rare disorder called "Fabry's disease." When I looked at the website, I think it mentioned experimental treatments that cost several hundred thousand dollars and I quit reading.
4) MRI of cervical spine
After several years of being sick, going to specialists, researching articles online, stalking forums, pinning hopes on retroviral discoveries and following too many CFSACs, I'm really no further ahead with solving my worst symptom...neuropathic pain...let alone solving my whole illness...than when I first became ill.
I believe that Neuroimmune illness is a good description of M.E. (at least better than CFS), but also a frustrating description. It lures you into thinking a cure is right around the corner, and yet Neurologists and Immunologists are equally puzzled by us! And when it comes to figuring out this particular symptom of extreme pain under the skin, it seems equally plausible to me to blame the brain or the immune system as the culprit. I wish it were as simple as choosing a neurologist or an immunologist to fix this nightmare!! Maybe it only works if both are in the room at the same time?
Esperanza, I PM'ed you. Let me know if you didn't get it.
Thank you again everyone, and I hope this discussion (as it continues) helps many get relief from this aspect of their illness.
Your brother in suffering,
OneWaySurvival