I appreciate that duloxetine has some risks attached, but don't they all?

My understanding is that duloxetine increases risks for people with pre-existing liver failure and that out of the million or so people prescribed cymbalta, it was stopped as a medication for 0.3% of patients due to liver toxicity and elevated liver enzymes were detected in 1.37% of the population. I appreciate a couple of people died, but for me... at these levels, I'd say that's probably an acceptable level of risk. Something to think on though, and thanks for raising it MrsD.

I'm not a heavy drinking... very, very occasionally these days.

Its impact on blood pressure wasn't something I was aware of, and thanks for the heads up. I'll raise this with the neurologist.

I know drugs aren't ideal and carry risks, but at the moment, if I discontinue pregabalin, my walking goes to pot, and the pain increases. As a writer, the side effects are not acceptable (word substitution when I type... almost like a chemically induced dyslexia) and this general feeling of grumpiness. I'd sooner be happy and in pain... but I'd prefer to be happy and not in pain.

More than anything at the moment... I'd love a diagnosis... a name... you know...

Joe

On this forum, we tend to focus on healing, stopping progression, and or reversing to some extent.

Some people do very well, others not. Some remain on RX meds and some are able to not need them any longer. But there is no cure.

At this time only IVIG has disease modifying actions. A new drug Rituxan, is sometimes used for gammonopathies..but that is still experimental. People with autoimmune PNs may see a reduction in symptoms when the autoimmune process is blocked.
Diabetics also see some improvement with dietary control tightening and some supplements.

Brian, here is an example of a very nice reversal of diabetic PN.
You can use "members list" here and find his posts.
He checks in generously and occasionally now, since he is improved.

Most of the drugs used for PN today, only mask the symptoms.
They do not affect the process, which tends to continue, depending on the causes. Hereditary PN (CMT) really has no
treatment still at this time. However, keeping B12, Vit D and
magnesium intake normal can help some with symptoms.
It is unclear at this time if mito support nutrients would be useful for these patients.

If you continue on the path of drug induced toxicity, then your only recourse is symptom relief.
Other common drugs also can cause PN:
http://neurotalk.psychcentral.com/thread122889.html
Fluoroquinolones continue to appear with increasing frequency as neurotoxic. Often given freely by doctors for simple infections, many people end up exposed to them as well.

Here is a listing of statin papers and neuropathy:
http://www.greenmedinfo.com/toxic-in...drugs?ed=35335

There is an interesting video at this link:
http://articles.mercola.com/sites/ar...erol-meds.aspx

It is amazing how this topic has exploded over the past 5 years, and data is expanding rapidly now.

I have been thinking about those two high fevers you had right in a row. That is very odd.

There is a condition called ME... myalgic encephalomyelitis
and I think you should search it and see if it fits your issues.

Combined with other factors, it might explain your neurological symptoms.
http://www.fatigueanswers.com/myalgi...-symptoms.html

It can be mistaken for MS and other similar disorders too.
Something to discuss with your doctor.

Joe and MrsD,
I have had many years of PN, some years better than others, etc.

Most meds given to me to supposedly help my PN did not help PN, they had grossly worsened PN. When I had finally realized this and told my Neurologists this, they would not believe me. I'd quit the med anyway. I went through several Neurologists because they would not listen and/or were not looking out for my best interests. Eventually, more and more Neurologists understood this could happen. Please be careful with meds. I have been very ill for almost 30 years and I now wonder just how much of this illness and disability was/is longer term effects of drug-induced illness.

So glad you check thoroughly into meds, Joe. We are so fortunate to have MrsD also avail to assist us!

For now, I'd just like to thank each of you for all you are sharing here.
You are each doing a great service for many other readers, some also suffering the ongoing pain of PN.

With Sincere Gratitude,
DejaVu

Sorry to hear it's been with you for so many years Deja Vu.

For me, it's relatively recently, just 7 months. What I've realised is that the medical fraternity don't really have a clue, other than some studies which have shown some medicines seem to alleviate symptoms for a proportion of patients.

Over here, it's gabapentin, then pregabalin, then duloxetine... then anything else they haven't tried yet.

It's a maddening illness. Completely inconsistent. Just as I start thinking there's improvement (or I'm being a hypochondriac), bam... I have one of those days or nights. I've had three bouts of trigeminal neuralgia which weren't fun, but I've found that 3 zopiclone pills knocks me out, and 7 hours later the pain has gone. It's either that or knock yourself unconscious. It's about 50% up on the recommended dose, but it's the only thing I found works.

Work think I'm a hypochondriac, but I never know from night to night if I'm going to get a couple of hours, 5, or none. I can walk like a king, or hobble about as if I'm drunk. Yesterday that lump which I have from time to time under the ball of my left foot had for the first time turned in my right foot and hand too. My wrists at times feel like someone's sawing them, while at others, I've a needle being driven into muscle and joints.

Work finally got fed up, and because my performance had slipped, put me on a final warning. At that stage, I went off sick.

The pregabalin makes me grumpy, when it's really not in my nature. Tonight, I've numbness in my hand, and it feels like someone's digging fingers into both my thighs. In another few minutes. It'll be somewhere else.

Does it cycle quickly about the body for other people?

Joe

Thanks for this MrsD...

My neurologist is wondering if it's a variant of chronic fatigue syndrome... the variant being lots of PN too... in fact, when I pushed him, this was his best 'guess' at this time.

So MrsD... on the button!

Joe

Joe,
I am sorry this is such a difficult time for you. I understand the difficulties.
I have to tell you that I feel a great deal of hope for you though, because we know more about how to protect ourselves now, how to optimize our health, etc. Please don't take this to mean I am misunderstanding your current pain and suffering. I don't. I truly don't.
The onset of this kind of stuff is so confusing and with the employment issues and all that then comes up, it's just one heck of a horrible time!
So be kind to yourself!

ME/CFS/CFIDS? I understand. I had spent 15 years contributing to the research studies at Harvard with Anthony L. Komaroff, M.D. (With all due respect to Dr. Komaroff and colleagues, whom I greatly respect and admire, these researchers were never able to help me, nor have they ever been able to help anyone else I've known from the studies. In fact, I remain, to this day, on Dr. Komaroff's waiting list of some of the first people he will call when he thinks he has something that may be helpful. True story.) In the meantime, doctors in other areas of the U.S. still think his diagnosis is wrong and that I have these other overlapping, complicated conditions (which they cannot fully explain, either). (The list of diagnoses is extensive and mind-boggling. Either way, nobody has been able to help me in any significant way yet. Most of the meds make me much worse, in every way.)

So no matter the diagnosis or diagnoses, it's vitally important we continue to learn and do all we can for our own well-being!

Joe, I am sorry you are going through such a tough time. I wish you did not have to endure this type of a challenge. (I had endured a great deal in research on CFS in hope that others would never have to do so!)

Yet, I am glad you are only 7 months into this (whatever this may be) and am also glad you have a great deal of intelligence and a sprit which will look out for your own well-being and will prevail!

I am not advocating for not listening to your doctors. I am saying listen to them, ask questions; yet know yourself and what's truly helpful to you. Do your research, always. Find groups like the group here to share info and ideas.

Chances are good, Joe, you are going to have a decent life inspite of your challenges. You are a great self-advocate!

With Hope for You,
DejaVu

It's not the end of the world as much as an irritant. I've found it much easier to externalise it, so I think of it as a small malevolent gnome which means I have something to swear at!

Thanks for the kind words. I know it won't kill me. I'd like to get more sleep. Before the pregabalin, my writing was going great guns, with a new title on Amazon, and I'm winding myself up to writing the next. The good thing about not getting enough sleep is at least doing something productive. Got to come off the pregabalin first as it causes brain farts which disrupt my written English (effectively a chemically induced dyslexia).

Must admit I'm a bit confused as to why CFS and Fibromyalgia are lumped together on NeuroTalk. I've none of the tender spots of fibromyalgia (as an aside)...

Must admit I don't know a huge amount about CFS either aside from the limited stuff you see on most web sites.

Anyway... appreciate the time taken by both you and Mrs D in replying, and if I appear grumpy at the moment (I am), it's pregabalin! I'm a lovely person on gabapentin I've found lol.

Joe

Joe, I do understand, too, about the cognitive difficulties caused by many meds. I cannot think straight on most of them, either!

Congrats on your writing! You will get back to your book!
Just had a friend in the UK release her first book this past year!
It was lots of fun... for all of us!
I had gotten in on her radio interviews and such via the internet. We'd had a lot of fun with it!

As for why Neurotalk places CFS and FMS together, I am unsure as to why they have done this.

I will tell you that years ago, one of the foremost researchers on FMS, Don Goldenberg, MD, was also in the Boston area. He and Dr. Komaroff did a joint study on the prevalence of CFS, FMS and how often both diagnoses could be formally made in the same patient. I took part in that study. I was diagnosed with both. Did I truly have both? The (then) expert researchers had determined I did have both. Some of my current doctors still agree with that, some do not.

Is there any truly standard info on CFS? I have never seen any info that is truly consistent. I have seen researchers agreeing on some aspects and disagreeing on other aspects. Lol! I still don't know, as I was diagnosed by the "research criteria" which is different, I am told, than the clinical criteria. Maybe someone more "in the know" will come along and comment here. (I was never very attached to the diagnostic label. Can you tell? Lol!)

You're doing great!
I cannot wait to read your book(s)!
Have a good evening!
DejaVu

That comment made me laugh as I from time to time wonder if my evil nieghbor has a Voo do doll. when you suddenly feel pain in an odd place you get a little crazy. My symtoms began shortly after a major falling out. I'm sure the stress did not help either.