As I understand it Neuropathic pain is just that, i.e . pain which is caused by a nerve disorder. It is a symptom rather than a (specific) cause. In any particular case, the cause may be difficult to determine.

PN is when the disorder is of the "peripheral" nervous system, meaning generally nerves in the extremities - legs, arms etc - as opposed to the "central" nervous system - spinal cord etc

I realise that this probably does little to help in your case but it is useful to be clear about the terms.

For more information including a long list of the cause of Neuropathic pain, see http://www.patient.co.uk/showdoc/40025146/

I think you sound a lot like a fibro patient with the neuropathic pain and no neuropathy.


Good luck!!
I hope they figure it out!

I grew old thinking fibromyalgia was a psychological condition, however, I dont feel my "psychological" problems are from anything other than the pain, etc. My neuro talked to me long and hard and assured me this condition was real. Too bad it isnt as obvious as a broken leg...then maybe "people" would understand both PN and fibromyalgia.

Daniella -

If I may ask, what kind of adrenal problem do you have that you take hydrocortisone for?

Thanks, Leslie

Megan-

If I may ask, what kind of adrenal problem do you have that you take hydrocortisone for?

Thanks, Leslie

To Leslie,

I have 21-Hydroxylase enzyme deficiency otherwise known as Congenital Adrenal Hyperplasia. As well as Hydrocortisone, I take Florinef (Fludrocortisone) for CAH

Sbvcrn, I agree about longstanding pain more than likely being the cause of any anxiety or psychological manifestations in Fibromyalgia. I have a strong aversion (and even contempt) to just about every ill being attributed to anxiety and depression as many medicos are apt to do, and I vehemently disavow the connection, for me at least - lol!

I'm glad your Neuro admitted to you the reality of this Fibromyalgia condition. The two Neuros I have seen, mentioned not a word about its possibility to me.....grrrr! However my Endocrinologist (wonderful, brilliant woman) assured me that this is a very real condition. So validating!

Megan... are you still using the acetyl carnitine? Do you have an update for us about it?

I understand about the mental part and doctors. With RSD there is often a huge focus on that. I think for me though it was a very good thing I went back to a psych. I still have all my physical health conditions but the way I am coping with them and outlook as greatly improved. Really before I went and I had been dealing with this for 2 years then I truly was an anxious and crazy mess mentally. This did not help my pain. I do feel though when I asked a doc if a procedure went bad then what he said he would said me to therapy. That ****** me off. So I think it is more the approach a doctor takes and having a balance so to speak if I am making any sense.

I do have an update on the Acetyl-L-Carnitine!

Two weeks ago at my Endo's appointment, after expressing my enthusiasm to her about Acetyl-L-Carnitine, she said: "be open minded about it because your improvement in energy could equally be from the DHEA that you started in February".

So after getting this slightly less than positive response from her I didn't take the Acetyl for about ten days. Then I did a total nosedive energy/fatigue-wise, a couple of days ago and had to spend most of the day in bed. I then realised that it could have been because of not taking the Acetyl, so I started back on it that very day when I could drag myself out of bed. It may have been co-incidence but this is about the third time this has happened (my own unintentional RCT's - hehe!). Although I have been on DHEA previously, as well as this time, I have never noted such a marked change in my energy levels when I have omitted to take it for awhile.

The Carnitine is expensive stuff but the quality is good, so I'll just keep forging on taking it along with the rest of my medication/supplement arsenal!

Daniella - I have had a couple of my doctors recently (Endo & Rheumy) ask whether I would consider seeing a counsellor/psychologist/psychiatrist, as it can be beneficial in any longterm chronic illness, quite apart from all my recent medical diagnoses. I said to my Endo, "I'm not nuts you know and I certainly don't need drugs that a psychiatrist may prescribe" and she said "no what would be good is just talky-talkies" which I thought was cool. So I may just do it sometime soon! The next problem is finding the right fit of person.

Megan... have you been tested for mito disorders?

Such a fast response to carnitine, suggests that maybe you should get tested if you have not already.

I know this is expensive, but they also use CoQ-10 for mito.

It is great you are seeing results from the carnitine!